Note from Margo:

My husband, Lynn Ludlow, had a stroke January 14, 2007. He was paralyzed on his right side and was rendered mute. Lynn’s life up to that point had really been all about telling stories, both oral and written. He was a reporter and editor at San Francisco newspapers for 40 years, a journalism teacher at the same time for 20 years and one of the guys who would spend hours at the newspaper bar, the M&M and its predecessors, swapping tales of the past at the big horseshoe-shaped bar.

He has a huge circle of family and friends, so as I tried to keep people updated on his condition, I started sending out group e-mails. The circle grew, and by six months later, I was sending the e-mails to about 120 people. The writing ended up being therapeutic for me, to help process what was happening. It also helped keep me aware of how much progress we had made. During times when I felt frustrated, I could just read a Ludlow Update from a few weeks before, and I could see we were moving right along.

The updates start at the end of his five days in the hospital, and go to about nine months after the stroke. The whole story runs to about 60 pages, probably more than anyone needs to know about our saga. The story lacks an introduction to Lynn, because everyone getting the updates already knows him. But other than that, I think they probably should stand pretty well by themselves.


Friday, Jan. 19, 2007

Dear friends & family:

I decided to write an update on how Lynn is doing, and send it on a group e-mail so I can keep people informed in a reasonably timely manner. I apologize if it seems impersonal. Feel free to forward this to anyone you think may want Ludlow news. Also, if this is more detail than you need, just spike it and let me know that you want off the group e-mail list.

The latest news is that Lynn came home yesterday, Thursday, at the end of the day, after a really long, frustrating, exhausting day of trying to get all the necessary clearances to get out of the hospital.

He’s able to walk pretty much as well as he did before the stroke, taking the long flight of stairs up to our front door very slowly. It seems pretty much a miracle, since he was almost entirely paralyzed on his right side for most of the first day.

His speech, on the other hand, has not come back much. On Saturday night, when the stroke first happened, he couldn’t even make any sounds. He can now make sounds, but he can’t differentiate any vowels or consonants. He’s communicating with gestures and by writing a few words at a time on a little whiteboard. When he speaks, according to him, he sounds like a Wookie -- like Chewbaca from Star Wars. Maybe we'll rent him out for theme parties...

So the challenge now is to get him into speech therapy as quickly as possible. We’ve been told repeatedly that the first days and weeks are critical in determining how much function he will regain, so we shouldn’t delay in getting treatment. But today, Friday, I was told that the first available speech therapy appointment is at the end of February, more than a month away. So I did a kind of polite but assertive routine and made it clear that it wouldn’t really work for us to wait a month to get started -- we were thinking more like Monday or Tuesday, if not over the weekend. Anyway, eventually I got a promise from the supervisor at Kaiser that on Monday she’ll call me with an appointment for Tuesday. So, we can rest over the weekend and then get started.

Filling in the background: On Saturday night, we had guests for dinner, had a really nice evening. After they left, about 12:15, we talked and cleared dishes for about 15 minutes and then Lynn said I should go to bed and he would finish cleaning up. So about 12:30, I went upstairs and fell asleep immediately. About 3:15 in the morning, a tremendous racket downstairs woke me up. My first thought was that someone had broken into the house and was beating Lynn up. I grabbed our home security system, the baseball bat, and yelled down the stairs, telling whoever it was to get out of our house. I went down with the bat at the ready, with Kenny following me. When we got downstairs, we could see that it was Lynn, face down on floor, on the single step between the laundry room and the kitchen. He was in an unnaturally twisted position, banging a metal stepstool against the door. His right side, particularly the arm, was clearly disabled, and I first asked him if he had fallen and broken his arm. It became clear quickly that he couldn’t make any sounds -- he was just vigorously shaking his head “no” -- very, very frustrated.

When I realized he couldn’t talk, I put a small pad of paper and a pencil in his left hand, and he wrote, with his left hand, “STOKE.”

I was already thinking stroke when I realized he couldn’t talk. So I called 911, and the paramedics came, very quickly. I called my friend Katherine, and she came to take Kenny to her house, and she met me at the hospital and sat with me through those first horrible, fearful hours.

The stroke apparently happened about 1:30 or 1:45 a.m. in the bathroom, with the door locked. So Lynn spent the next hour and a half partially paralyzed, on the bathroom floor, trying to make enough noise to wake us up. He then somehow lifted himself with his left arm, high enough to unlatch the door. He then had to work himself out of the way, because the door opens inward. He then dragged himself, with just the one arm working, through the side of the laundry room and up the step into the kitchen.

At first he couldn’t communicate at all, so we just sort of pieced together a timetable from the physical evidence. As he’s been able to communicate more, with writing and gestures, we’ve filled in the details. But when I came downstairs, all the dinner dishes were cleared and washed, the leftovers put away, the stove and counters wiped down, the extra panels were taken out of the table, etc. -- at least an hour, maybe an hour and a quarter, of clean-up had been done. So it was clear that the stroke hadn’t happened immediately after I went upstairs.  And the destruction in the bathroom showed that Lynn had spent quite a bit of time trying to make enough noise to wake us. He had banged on a cabinet until it broke, had emptied the cabinets out for things to bang on. His left hand was pretty bruised up. When we asked him how long it had been, he held up one finger, an hour. Maybe more. In hell.

The paramedics took Lynn to S.F. General’s emergency room, because it’s just a few minutes away. There’s a long story to be told at some other point about the next few hours, but the short story is that we missed a three-hour window for getting the best medicine for immediate treatment of a stroke. If you give this medicine after the three-hour window, apparently, you do more harm than good, so the doctors are very careful about the three-hour limit. He had to have a CAT scan and have the scan read and interpreted before this medicine could be ordered. Because the medicine breaks up clots, you have to be sure that you have a stroke caused by a clot, not a hemorrhaging stroke, or the medicine can make it much worse. So anyway, the window was missed. Bad luck.

We got a transfer to Kaiser at about 9:30 in the morning, and he eventually went to the stroke ward on the 7th floor, apparently a new department, specializing in the treatment we needed. The original assessments there were very discouraging. Lynn had pretty much total paralysis on the right side. When the doctor tapped his hand, he couldn’t feel it. There were no reflexes, no sensation, and no movement in his hand, arm, foot, leg on the right side. He couldn’t speak at all, and he could write only a word at a time, very slowly, with his left hand, and some of the painfully produced words were misspelled or garbled. As one of the world’s great spellers, he was clearly frustrated with his own spelling. During this time, I did a lot of guessing about what he was trying to get across, not very successfully, but it was clear that his personality was still there. He was very much aware of his surroundings, his history, what had happened to him, etc. So it was clear early on that the main issue was not so much memory or cognition, it was speech. As many of his friends have pointed out, this is a uniquely cruel deficit for Lynn.

So… anyway, sometime late Sunday, he started pointing excitedly to his right arm, which had been limp and useless. He was inching it slowly up his side. That was all, just a small beginning of a movement. But it seemed like a miracle. On Monday, he had a day of dramatic improvement. By the end of the day, he was able to write a few words with his right hand. In the afternoon, a physical therapist came in and said that he was going to do an assessment to see how well Lynn could walk. I was thinking, “Right. In our dreams.” But Brian, the physical therapist, brought a walker to the bedside, and helped Lynn sit up in bed, and Lynn stood up and walked back and forth in the room with the walker. I sat in the corner weeping -- I had thought it was going to be months before he walked again.  Brian expressed pleasure at how well Lynn was doing, and said, "How ‘bout we try that without a walker?" I had my doubts, but I kept them to myself. So Lynn held on to his IV pole for balance, and he and Brian walked a few steps up the hall and back. Brian declared himself pleased and said he’d be back the next day. We sat in the room and joyfully (which doesn’t really begin to adequately describe the sensation) readjusted our expectations for the next few months.

Over the last few days, he’s been playing music for a little bit at time with Steve Rubenstein and Pauline Scholten, and his musical ability is still there. There’s some loss of speed and coordination in the fine motor skills that you need to pick the mandolin, but his sense of tone, rhythm, etc., are still there. He still tires quickly, I think because his body is expending so much energy healing.

We went out on errands today. It was great to be outside. Lynn came with me, partly so as to not leave him alone and partly to get out of the house and into the sunshine. We were warned that after a stroke, there is increased risk of another stroke, so he should have a “medic-alert” type system, which we had installed today (Wouldn't that have been nice to have had on Saturday night??). And we have to figure out how comfortable we are with him being alone for the first month or so, when the risk is the highest for a new stroke. Anyway, while we were on errands, I realized that when people addressed him, I was saying, “He had a stroke and he can’t talk.” And that seemed too static and pessimistic. So I started saying, “He had a stroke, and he’s still regaining his ability to speak.”

That’s probably enough for now. More later, when the situation warrants. Know that we are very conscious of and extremely grateful for the good thoughts, prayers, and amazing willingness to help of our friends and family.

All the best.
Be well.

Margo


Lynn update 2

Dear Friends and Family:

Just a quick update:  We have an appointment with the speech therapist at Kaiser tomorrow, Tuesday. I called first thing this morning and had a call back in about five minutes. So that’s good, and we’ll take it from there.

Lynn still can’t talk at all, but the weekend at home has been restful and good --just being able to sleep through the night is healing. It was tempting to wake him up a couple times in the middle of the night the first night home and say: “Mr. Ludlow, time to check your vital signs” -- just so he wouldn’t miss the hospital too much. But, hey, that would have been cruel.

On the language front, he can make more sounds than he could at first, but he can’t produce anything recognizable as language yet. The progress is almost undetectable, but I think it’s there. The speech therapist at the hospital gave us some exercises to do, and we’ve been working on those. In the meantime, he’s still communicating by writing and with gestures. We’re referring to a sign-language book for ideas about gestures.
Anyway, thank you for all the good wishes, the prayers, the offers of help, the encouragement.

Margo


Lynn update 3

Wednesday, Jan. 24, late

Dear friends and family:

Another quick update: Lynn said his first recognizable word two nights ago. No surprise here -- it was “no.” He sounds sort of like a 2-year-old with a big, basso profundo voice.

 We’ve been trying to build on that… There’s a family joke/story with the punch line, “Don’t tell him ‘no,’ tell him ‘HELL NO!’”  So, we’ve been working on “HELL NO!” But so far, no luck. His lips, cheeks, tongue and vocal cords just seem sort of divorced from his brain.

The appointment on Tuesday with the Kaiser speech therapist, Mary Cabibi, was good and bad. The good part was Mary herself -- she was really focused, seemed very skilled and knowledgeable. She tested him in all sorts of ways and thoroughly explained some safety measures to us (particularly about dangers having to do with Lynn’s lack of sensation in his cheeks and mouth -- there is a danger of choking that we weren’t as cautious about as we should have been.) She asked about how we are coping with the difficulty in communicating, what our support system is like, etc. She seemed interested in the whole package.  She gave us heaps of exercises to work on until the next appointment, tomorrow, on Thursday.

The bad news in the speech therapy department is that Lynn is pretty much starting from zero in the speech department. He can’t make the first syllables that infants make when they learn to talk: ma-ma-ma and ba-ba-ba. The “no” is sort of an automatic word, which is great. Mary thought he might be able to say, for example, “hi” and “bye.” She said sometimes in these sort of cases, people retain some automatic responses. Anyway, Lynn has “no!” So, we’re starting from scratch, working on ma-ma-ma, ba-ba-ba, pa-pa-pa. Lynn’s good for about 15 minutes at a time. After that, his lips and tongue, which really seem to operate more or less independently of his brain -- when they operate at all -- stop cooperating completely, and Lynn gets tired and frustrated. So we’re just working about 15 minutes at a time, two or three times a day. There is progress, but it’s painfully slow.

He’s still communicating with his hand-held whiteboard, and with little notes, and with gestures and a tiny bit of sign language. He can do e-mail, although his fine motor skills are still a bit off, and his typing is slow and painstaking. He’s been playing the mandolin with Steve Rubenstein and Pauline Scholten, and playing the piano on his own. He did the Monday and Tuesday crossword puzzles this week, and most of the Wednesday puzzle. If he gets anywhere with tomorrow's puzzle, we'll know the stroke actually helped his brain.

Thanks a million times over for all the good thoughts, prayers, get-well cards, encouraging notes, food, offers of help. We are both very conscious of how lucky we are in so many ways.

Margo



Sunday, Jan. 28, morning

Lynn has three words he can clearly articulate now:
1)    No.
2)    Hi.
3)    On.

He’s regained the words through the sort of alternate, work-around mode that the speech therapist suggested we work with. (We called her "Mary C.," the first time she had ever been so named.) She gave us a list of about 100 words with obvious opposites, and I say a word and he is supposed to say the opposite, automatically, without thinking about it. This is to bypass the non-functioning part of his brain that’s trying to tell his nerves to tell the muscles to form words by moving his cheeks, lips and tongue. And sure enough, as we work through the list, he responds with sounds of one or two syllables, not really recognizable as words, but identifiable as responses. And then I say “low” and he says, quite clearly, “high.” We look at each other, astonished. And so we expand on that: he can say “high,” which means he can also say “hi,” which is ever so much more useful. Anyway, the same astonishing thing happened, maybe 20 words later, when I said “off,” and he responded with “on.”

We’re still working with making the sounds of individual letters, working 15-20 minutes at a time, several times a day. He’s clearly making progress: His “d” is way more distinct than it was a few days ago. But it is all very mysterious. He can say “no” and “on,” but he can’t really say “n” by itself, although his “o” is increasingly clear. And even though the trajectory seems to be positive, sometimes he can’t say a letter at all that he could say sort of clearly at an earlier session.

So anyway, it’s slow, frustrating and mysterious, but as I said, he’s clearly improving.

As before: We are constantly conscious of, and grateful for, the good thoughts, prayers, and loving care of our friends and family, colleagues, synagogue members, Miraloma alums, Buena Vista families, etc.

Keep the faith,
Margo

From here on is a longer version (or, in newspaper-ese, “Optional Trim Starts Here”):

So the speech therapy continues, as much as Lynn can tolerate without getting frustrated, two, three, sometimes four times a day. It’s excruciating to watch. He’s working so hard. Each letter has a specific way that you have to hold your tongue and/or your lips, pressing against your teeth or exhaling sharply or softly… stuff you normally never even think about. So I make a sound, from one of our alphabet flashcards, say “f,” and he tries to repeat it. It sounds like “oo” instead of  “f”… so we break it down. Your bottom lip has to be under your top teeth and you exhale sharply. He tries, and his lips, teeth and tongue aren’t responding at all. So he picks up a little hand mirror, looks carefully at his mouth, then my mouth, and tries to make his mouth do it -- studying the mirror as his lips, tongue, cheeks and teeth pretty much march to their own drummers. He tries again. With my fingers, I try to push his lower lip under his upper teeth, just to let the muscles and nerves feel what they are supposed to be doing. (This is all copying what Mary C. does with him.) So, with help, he can sort of make the “f” shape with his lips, but the timing of the exhale is off. He tries a few more times, with help and on his own. Sometimes he comes close to the sound, sometimes not. And so we continue, pushing each letter until he can do it, or until he becomes discouraged. We’re working just with the 10 letters Mary put in the “easy” pile of flashcards for us. After Lynn masters them, there is a “hard” pile.

So we work letters, and then we try the list of opposites, and a finish-the-sentence exercise: “Please pass the salt and (blank).” He says “pepper,” but it sounds more like “buh-buh.” The good part of that is he can control the tone and timing of the air coming through his vocal cords. That’s a big improvement over when we started this.

So, it’s been two weeks now since Lynn’s stroke, and aside from seeing incremental progress on the speech front, we’ve seen and heard a lot that makes us aware of how lucky we are. Starting from basics: Lynn’s alive. His personality is intact. He’s not paralyzed, in fact his physical strength and coordination came back probably 90% or so. His language skills don’t seem to be damaged -- he can write and read almost as well as ever, and to finish the update from last time: He still can’t do the Thursday crossword, but Monday, Tuesday and Wednesday seem to be manageable. He commented that he was slower at the crossword than he used to be. And my response is that God really should strike him with another stroke if he frames that as a complaint.

Communicating is a huge problem, as you can imagine, for a big talker like Lynn. He writes to us -- on his whiteboard and on his reporter notebooks. But it’s slow and frustrating for him. At least a few times a day, he writes something that makes no sense or makes gestures that I don’t understand, and I panic, thinking “Oh my God, the stroke really did damage his brain.” And then he writes a few more words to fill in the logic gaps, and I get what he’s trying to say, and I realize it’s just him making connections that are on a different logic path than I would take to get to that information. An example: We were playing music with Steve Rubenstein, and Lynn was trying to tell us what key he wanted to play in and he started counting with his fingers… Does he mean: One, two three, four? Or A, B, C, D? We were totally baffled. He finally wrote down, key of  “A.” So we asked him why he had been counting on his fingers. He had been trying to get us to count through the circle of fifths to get to “A.” Start with “C,” then “G,” and so on to “A.” Aarrghhhh!! He did a similar thing trying to refer to my sister Marion -- Held up three fingers, for three sisters, and indicated the first… but I was lost… Yesterday, he wrote a cryptic note about the “Pink Opera guy” -- and it turned out he was referring to the Peter Sellars who directs opera, not the Peter Sellers who does the Pink Panther…

Lynn’s daughter Amy pointed out within a few days of Lynn’s stroke how much his being unable to talk changes the dynamic around him. She said, after sitting with him for some hours in the hospital, that she realized she’s not very good at talking for a long time with him. He had his whiteboard, and he just wrote down the names of her kids, and pointed to them, one by one, asking her to talk about them. It was a different experience for both of them -- her holding the floor for long periods of time, running out of words, and him waiting quietly for her to speak.

We’ve talked about this (or let’s say, I’ve talked and Lynn has listened) from almost the beginning, maybe starting with our friend Charlie Cardillo, who came over early on, and told us about a colleague at work who had taken a vow of silence for the month of January. Her experiment is a spiritual experiment, a way to do some internal exploration or something like that -- the kind of thing that Lynn is generally not particularly interested in. And at first it seemed like being unable to speak was just a particularly cruel dysfunction for Lynn -- the guy who is all about talking, story-telling, singing, etc., to be struck dumb by a stroke. But it could also be a gift -- a place to start on some new work. Lynn is having to listen more these days, and figure out other ways to communicate than using his big bass voice.

The first couple times I spoke about that, if you could translate Lynn’s body language into words, the summary would be “NO, NO, NO, NO!!!! Not a gift! Just a curse!” But we actually are exploring new ways of communicating here. It’s obviously very, very difficult for him -- old dog, new tricks and all that -- and I don’t want to minimize or disrespect that. But he is listening more and that’s not bad. Our friends Pauline Scholten and Jackie Jones came over to play music with him a few nights ago, and Jackie told some really funny and interesting stories about working as a B-girl in Tenderloin bars back in the ‘50s and ‘60s -- the female musicians were required to try to get patrons to buy drinks, preferably expensive drinks. She talked about the tricks the bars used to draw money out of the suckers without really pouring much liquor. She described the crooked cops and the fights that a tough-lady bar owner got into… it was an evening of great stories along with the music -- and stories that Lynn is particularly interested in, with his interest in San Francisco history and San Francisco neighborhoods. After they left, I pointed out to Lynn that we’ve known Jackie for 20 years, and we’ve never heard her stories. She just needed a quiet zone to draw her stories out. This could be good. It’s really not feeling that way to Lynn yet, of course, and I respect that. But I think there’s much to learn, even while we struggle with regaining his voice.

So, it’s now late Sunday. I interrupted this narrative to go do another speech therapy session with Lynn, and out of the blue, he could say “bye” and “bye-bye.” Still can’t say the “b” sound or the “aye” sound, but he can say “bye.” Another one of those automatic responses that Mary C. said to work with. It is SO mysterious. So now we’re at four words. Yesterday, after I got so excited that he had three words, he wrote a little note: “English has 100,000 words.” He’s knows I’m all about math, so I can figure out that, gaining a word a day, we have just about 275 years of work here…

So, no time to lose.

Keep the faith,
Margo



Update 5
Quick update, Wed., Jan. 31:

Lynn is able to say more one-syllable words now, probably 10-15 of them with varying degrees of clarity: No, off, on, hot, cold, bye, hi, duh!, hard, “Oh boy!” and so on.

We keep learning more about language… It’s astonishing that a pair of people who spent their lives writing, reading, editing, talking, etc., know next to nothing about the sounds that make words. And even less about how the mouth creates those sounds. Who knew there were easy sounds and harder sounds? The sounds that you make in the front of your mouth are apparently easier. Some of them are, anyway. Lynn can make most of the easy sounds with degree of accuracy: M, N, B, D, P, F, T… The consonants that come from the back of the throat are too hard still, like K and G…  So he’s married to Mar-doe, and the daughter is Den-ny.

There’s a ladder of difficulty for the vowels, too. A week ago, the only vowel sound Lynn could make was “ooo,” which is basically you open your mouth a bit, maybe pursing your lips, and exhale. Pretty easy. If you open your mouth wider and purse your lips a bit more, and make it all a bit firmer, you get “OH,” which was his next vowel. A bit wider, more vocalization way back, and it’s an “AH,” which he can now say, too. But the vowels that you have to widen and tighten your mouth, and get vocalization way in the back of the throat, “AYE” and “EE,” he can’t really say yet. That’s with the intentional speech.

With the spontaneous speech, he can say an “AYE” sound: He can say “Hi” and “bye” easily… It’s like if he can work around the whole process of “Brain tells muscles to move and speech is intentionally produced,” he can actually make some sounds that he can’t produce intentionally. Arrgghh… very tricky, very mysterious.

Anyway, that’s probably more detail than anyone needs. The short version is that Lynn seems to be gaining ground slowly on the language front.

Again, thanks so much to the many friends who have sent encouraging words, prayers, good thoughts, all the positive intentionality that their varied spiritual practices allow.

Keep the faith,
Margo

Here’s the longer version:
 
A number of people have asked how Kenny is holding up. That’s a complicated question, and we probably won’t know the whole story until we start paying for therapists later. She seems to be holding up well, in general. Lynn’s stroke happened on the day before her 16th birthday. So the day that we should have devoted to celebrating a step on her way to adulthood, we spent on the seventh floor at Kaiser Hospital. She wanted badly to go ahead with her birthday party, which was scheduled for the following weekend. We made the decision to go ahead with it when we thought Lynn was still going to be in the hospital on the day of the party. Then he got better rapidly and was already home on the Sunday of her party. At that point, he still couldn’t talk at all, and he tired very easily.

My dear friend Laura stayed with Lynn at our house while the rest of us went to Kenny’s Sweet 16 Pool Party. The party was fine, and Kenny was happy to be surrounded by her friends in swimsuits. We decided to simplify things this way: If it can be bought at Costco, it can come to our party. So we had Costco drinks, Costco chips, Costco pizza, Costco veggie plates, Costco birthday cake. Lots of family and friends helped make things run smoothly -- Amy did the pizza run, Linda D. was the drinks czarina, and Pauline handled the chip dip, the one non-Costco item -- and logistically it all went well. But it was truly odd to have a birthday party for Kenny without Lynn.

Kenny’s main reaction to the stroke itself, early on, was irritation and even anger with how little anyone could do for Lynn. She exclaimed a number of times about how medical science really should have more to offer than an aspirin to help Lynn get better. (At that point, he was just getting aspirin as a blood thinner.)

She also was very, very frustrated with the lack of a real prognosis. Every doctor, every nurse, every speech therapist, every medical whatever has said there is no way to know how much of his functionality will come back. The advice -- to wait, be patient, work hard, hope for the best, see what happens -- just doesn’t suit her at all. To tell the truth, it’s hard for the grown-ups in the house, too. But she was very vocal in her unhappiness.

I asked her yesterday what’s been hardest for her, and she said just seeing her father trying so hard and making such slow progress. A few days earlier, she told me that she had thought once Lynn got a few words, then lots of words would come really quickly. But it’s not been like that. He’s gaining more than the one word a day that I recently projected out to 275 years of speech therapy, but at this point it’s more like five or 10 words a day. It still feels very, very slow. And Kenny’s expectations, I think, are set by the teen movies and TV dramas that she watches, in which the chosen adversity, heartache, or disaster is overcome, in a very telescoped time frame, by hard work, pluck, and determination.

I think another thing that’s hard for her is that Lynn’s disability takes away her option to be the difficult one in the house. She’s 16, and it’s really her prerogative to be the obnoxious teenager -- sullen, disrespectful and irresponsible. The fact that she very, very seldom has ever exercised that option isn’t going to mean that she won’t miss it. In so many ways, we measure the richness of our lives in the options we don’t exercise… the hundreds of restaurants that we could go to, but we don’t. We are still richer because they’re there. The opera, symphony, and museums that we rarely visit still make us richer. So Kenny’s option to be a pain was seldom used, but still there, and still hers, until a big racket woke her up in the middle of the night and her dad was paralyzed and mute on the kitchen floor.

On a less theoretical level, her always-on-call chauffeur is no longer available. In the four years Lynn has been retired, he’s usually been available to drive her wherever she needs to go. That has suddenly disappeared, and she’s found herself on the bus a few times recently. I’m among the many people who will say, “Not such a big problem, really. Lots of kids take the bus.” But it’s an adjustment for her, and she has to learn to allow herself enough time to get around if I can’t drive her.

In other news, our speech therapist, Mary C., is now on a two-week vacation. Before she left, she gave us exercises to work on at home, and we made an appointment for when she comes back. Then, at home, I realized within a few hours that I already had questions and concerns, and a two-week break from guidance wasn’t really going to work. So, I called the head of speech therapy department at Kaiser and explained the situation, and she lined us up with another speech therapist for one visit a week while Mary C. is gone. This really has been the pattern with Kaiser for us in this adventure: If we ask for what we need and are willing to push a bit, we will get it. If we don’t, we won’t. It’s worked for us so far, but I worry about people with no full-time advocate. Or people who are socially conditioned to just do what the doctor or nurse says, to take the first available appointment in a month, or whatever. Anyway, we really have gotten what we’ve needed, but the system doesn’t seem designed for the faint of heart.

Our interim speech therapist, Erin, seems just as skillful and helpful as Mary C. We saw her yesterday, and she answered a bunch of questions I had. I’ve been trying to break down the motions that your tongue, teeth, and lips make for different sounds, to help Lynn form, for instance, an “L” or a “TH”. And some of them, I just couldn’t figure out. It turns out that some of them have several different ways they are formed, like an “L” can be with the tongue out or the tongue behind the teeth… Who knew??

We’re supposed to see the neurologist tomorrow, so we’ll have a chance to ask a lot of questions there, too: What’s the prognosis? Does Lynn’s willingness to work hard mean that he’ll regain more functionality than if he just waited for his words to come back?  How long can we expect improvement to continue? How rapidly? What exactly happened in his brain? For how long should we be concerned about him having another stroke? Should he be taking something more high-tech than aspirin to thin his blood? Can we hope for him to regain his ability to drive? And so forth…

This narrative was interrupted by a speech therapy session in which Lynn was trying to sing “Happy Birthday to You.” One of the ways to get spontaneous speech, we’re told, is to sing songs that you learned when you were 3 or 4. So, that’s part of most practice sessions. Anyway, you could follow the song through the tune, which was pitch perfect, of course, and the intonation of syllables, sort of “Ba-ba buh-dah dah doo, ba-ba buh-dah de doo,” etc. And then he said “Da-da buh-dah deh Kenny, da-da buh-dah de doo.” Clear as day, he said Kenny… He had been trying so hard to wish her a happy birthday while he was in the hospital, when he couldn’t talk at all. And then there it was, sort of unbidden, but actually very much bidden. So he can say Kenny now. The wife is still Mar-doe. But the kid is Kenny again.

Anyway, the saga continues.

Keep the faith,
Margo
 
Ludlow update No. 6  -- three weeks after the stroke
Sunday, Feb. 4

We went for the first visit to the neurologist Thursday, and were pretty much sated with information by the time we left. We had prepared a whole page of questions in the days before the appointment, and the doctor seemed willing to spend however much time we needed.

She was an MD PhD, what my sister Marion, the microbiologist, used to call a Mud-Fud, and she seemed fluent in clinical practice and also research information. Her main message was a repeat of what we’ve read: There’s no way to tell what will come back and what won’t. Every stroke, and every stroke patient, is different. But she said that Lynn’s progress so far bodes well. He regained most of his motor skills rapidly, and he has begun to regain his speech -- suggesting, she said, that he can recover more.
 
We asked about how much speech ability we can expect him to regain in the end. She sounded optimistic, but warned against expecting a 100% return. She said if she had to guess, she’d say he’ll be able to communicate, but not as fluently as before his stroke. We asked about how much the work he’s doing is going to improve his end result, or if most of the functionality will return if we just wait. She was very clear that the harder he works at it, the more will eventually return, and the faster it will return. She also said that even months and months after a stroke, people still can regain function if they keep working. But, as everyone else has said, these first weeks are when most of the progress will be made.

She was able explain what the most likely cause of Lynn’s stroke was. Apparently, strokes in the part of the brain where Lynn’s was are most commonly caused by clots that break free from the carotid arteries (on the sides of the neck) or from the arteries of the heart. She said that after heart attacks, the damaged muscles of the heart don’t contract as strongly as the rest of the heart. And the areas that are not contracting and pumping like the rest of the heart have a tendency to form clots. So Lynn’s previous heart attacks make him a candidate for this. While Lynn was in the hospital, Kaiser did sonograms (or echograms? I get them confused.) of his heart and of his carotid arteries. The neurologist, Sara Kathleen Doster, said that his carotid arteries look fine, and there are no apparent clots in his heart waiting to break free. So the assumption is that there was a clot somewhere in the area of his heart that is damaged, and it broke free and caused the stroke.

That’s this report’s short version.
Thanks very much, again, for all the good wishes that have been sent our way.

Keep the faith,
Margo

Here’s the longer version:

Dr. Doster recommended that Lynn go on a much strong blood thinner than the aspirin he’s on now. The drug is called Coumadin or Warfarin, and it is tricky enough that it involves frequent blood tests to make sure the dose is right. She said it’s a hassle, but it’s the best thing to prevent more clots, which can cause future strokes. We are SO on board. He had the first blood test right after the neurology appointment on Thursday. And he started taking the Coumadin Saturday evening. The next blood test is Tuesday.

We also asked the doctor about when he can drive again. She did a series of simple tests: vision, peripheral vision, coordination (‘Put your right thumb in your left ear and stick out your tongue…. Touch this finger. Touch your nose… etc.)  She said he’s good to drive. To me, that’s scary. I don’t think his reflexes are quite up to driving yet. So we’re talking about it. Actually, I’m talking and the (new) Lynn is listening. In reality, I think, he also doesn’t feel like he’s ready to drive yet. We’ll keep checking in about it, and I’m thinking he should try driving first out in the Sunset or Richmond districts, with the wide, lightly traveled, straight streets. Our house, on the steep hill, with the curved, very narrow streets and the immediate turn onto the six lanes of speeding traffic of Cesar Chavez Street… Well, it doesn’t seem like a good place to get comfortable behind the wheel again.

But the good news is that he’ll be way more independent soon. I asked the doctor what if he has another stroke while he’s driving. The doctor said it’s the same likelihood as anyone else, the same likelihood as before his stroke. Actually, since he’s had recent medical imaging of his heart and carotid arteries, and they look clear, he probably has less of a chance than many others right now. (That’s my interpretation, not the doctor’s).

We asked about his keyboarding and mandolin playing. He thinks he’s keyboarding at about half his previous speed, and with many more typos, and some disturbing word-drops. She said that could come back more. We asked about occupational therapy for that, and she said that if the keyboarding is what he’s concerned about, the best thing to do is keep keyboarding. On the mandolin, Lynn thinks he’s at about 80%, and it has been level since he came home from the hospital, that is, he hasn’t been improving each day. The doctor said she didn’t know of any research and couldn’t remember any patients with specifically musical rehab issues. Her guess was that he should just practice more and hope for the best (Sounds like what every piano teacher tells every kid.).  

A number of people have asked me about Lynn’s frame of mind. Well, as you can imagine, it’s complicated. I think at first, he was very depressed to find himself suddenly mute, although within a few days, he was also grateful to find himself not paralyzed.

There’s a sort of irony in this. I had been complaining to a friend maybe a month before Lynn’s stroke that I wished Lynn’s emotional palette were a bit more nuanced -- the same complaint that about 90% of heterosexual American women have about their male partners. Lynn seemed to be a binary being in some ways: either everything was all right, or he was pissed off. I was saying to my friend that I’ve known him 20 years, and he’s never indicated to me that he was sad, anxious, nervous, depressed, worried, or anything other than 1) just fine or 2) angry. Then I went into his hospital room on the second morning after the stroke, and he painstakingly wrote the word “depressed” on the little whiteboard that he was using to communicate.  So, I had to think to myself, “I should be more careful what I wish for.”

 I’ve talked to the new Lynn about this, the one who has to listen. I’m interested to know how this feels for him: to either be feeling these sort of more feminine emotions for the first time, or else maybe it’s just that he’s expressing them for the first time. That’s all going to have to wait until he can talk more fluently again, or until he wants to write about it, maybe when typing gets a bit easier for him. As I said to him: I’m not trying to make a woman out of him, I’m just interested in what he’s feeling.

Anyway, he was definitely depressed for a while, mixed with the anger and frustration at being unable to get across his needs, wants, responses. We tried to communicate some about his frame of mind, and the variety of feelings that he was having to process. He communicated that feeling helpless was the most difficult for him. Those were difficult conversations, partly because it was so difficult to communicate. But also because I’m in no position to say: “Oh, don’t be depressed. It’s all OK.” Because it’s not all OK, really. The depression is real, and it’s justified, and I understand and support that response. The anger is real, and the frustration, and the helplessness. All I can do is say I understand. Those are logical, appropriate and perfectly reasonable responses to his situation.

His speech ability really is improving, but it is so slow that he doesn’t feel the progress very much. He still grips his head in frustration just about every speech practice session. But I can see progress pretty clearly. I think the neurologist’s confidence that he’ll regain at least some ability to speak was very good for his frame of mind. I think over the past few days, some of the sadness and frustration is lifting for him, and he's just accepting more where he is and that we just have to work with what we have. And that we are incredibly lucky. Not that he's not still mad and frustrated. He is. But some of his darkness and anger seems to have softened.

I forget exactly what the four or five steps of grieving are, but I’m guessing that the steps he’s going through now are like grieving a serious loss. I know that Lynn jumped right over denial, because denial would have been pointless, with the undeniable paramedics and CAT scans and IVs and all. He went right to anger and depression, and I think he may be approaching some acceptance. I know there’s supposed to be a step involving negotiation in there, and I didn’t see any of that… But I think acceptance, when it comes, will help him focus on what needs to be done, without wasting too much energy on resisting where we are.

So Friday night we were working on the speech exercises, which include running through opposites and word pairs, such as up and down, and salt and pepper, to stimulate spontaneous speech. I decided, for a change, to let him say the first word and I’d say the spontaneous response… so we played around with that for a while, and it was actually fun. We were cracking each other up, because I had to first guess what word he was saying, and I usually wasn’t even close, and then I had to figure out its opposite… And he was cheating. His word pairs were like: “TV and Lynn,” and “above and beyond.”

He’s bored with the exercises already, even though we still have to keep working on them, because he still can’t say most of the words very clearly. He’s supposed to count from one to ten, and he’s a lot better at that than he was a week ago. Most of the words are recognizable. “One” and “two” are completely clear. The “th” in “three” throws him off his stride and the “f” in “four” and “five” just is not there. But he’s bored with the exercise, so he’s been starting at 10 and counting backward. It takes a few beats before I realize what he’s doing -- I think “Oh, man! That didn’t sound anything like ‘one, two’,” and then I realize it was “ten, nine,” and it was actually pretty close. So as soon as I got hip to that, he started with “eleven, twelve, thirteen,” which of course is a lot, lot harder in so many ways -- two- and three-syllable words with way harder letters. So it took me a few extra beats to figure out what he was doing… Anyway, it’s a laugh a minute over here at the Hampshire Street Rehab and Voice-Training Spa (Carol Ness’ term. I love it.)

So Friday night he wrote down “Super Bowl.” And then “I need some words.” We were going to his daughter Amy and her family to watch the Super Bowl. So we worked on “Go Bears!” and I was trying to get him to say “Go Patriots” and then telling him that he had to root for the Bears because “Patriots” is way to hard for him. And he was struggling, trying to say something, and after some really bad guessing, I realized he was saying “Colts.” Oh, Jeez… I really should pay more attention. The Patriots were about three years ago, weren’t they? Anyway, he could say “Bears” a bit better than “Colts,” so the underdog Bears were our team for this year.
But on Friday, he was trying to say “first down!” and I was guessing “dumb dumb!” and “dumb coach!” and “dumb play!” and we were laughing so hard… At that point, he still had one more day to work on Super Bowl vocabulary, and try to figure out phrases. We tried to stay with single-syllable words, primarily composed of the consonants M, N, P, D, B, H and W, and the vowels “oo,” “oh,” “ah,” and “aye.” “Bad down!” “Wha’ dat?” “High Five!”  “Oh boy!” “My, my…” Or, in the food department, maybe “Mo’ dip.”

In other food and beverage news: Lynn can almost say “beer” now, although it sounds a lot like “bah,” and I can still pretend I don’t understand.

Here’s a bonus -- or maybe just further punishment -- for those who’ve read this far. Here’s Lynn’s first attempt to write about what happened to him. It was a group e-mail, to friends and relatives who might be expecting the “Tardy Times,” his annual holiday newsletter that has been coming out most years in February or so. I know some people on this e-mail list have seen this note already. But I think it’s an interesting read, because even in his somewhat reduced state, where typing is very difficult, he maintains his singular style -- the very dense prose, the word play, the whole Ludlow thing.

“Hi,
    “It's one of my favorite sounds. Hi! High! Hie! This is a group
hi-dee-ho,  as it were, in lieu of a Tardy Times which, I promise, will be the tardiest ever. Look for this edition's health report.
    A funny thing happened as I was cleaning up after an otherwise
charming dinner party for friends. At about 1:15 a.m. on Sunday, Jan. 14, I found myself on the bathroom floor. My right leg was paralyzed. My limp right arm was trapped beneath me. I couldn't speak. Margo and Kenny were in bed upstairs and out of range. I spent an hour whacking with a shampoo container on the bathroom sink cabinet, eventually destroying the door. Then I noticed a smidgeon of restored mobility in my arm. I reached up to the doorknob and opened the bathroom door. I crawled into the kitchen, where I beat the kitchen door with a stepstool. It made enough of a ruckus to bring Margo to the rescue. On a piece of paper with my left hand I managed to write ‘stoke.’
    “I apologize for the lateness of this note and not notifying so many close friends. I've been busy. As you can see, I regained most of my keyboard skills. Lots of typos. My leg and arm recovered swiftly. Unluckily, my face has neural patterns I didn't know existed, but the cliché of "a lopsided grin" is getting better. One thing that defies quick healing is my voice or, to be more accurate, a scramble of brain cells that instructs the muscles and nerves of the voice. It's the answer to the prayers of many polite listeners who may have tired of my marvelous, riveting and pass-the-peanuts monologues.
    “I'm mute. Almost.
    “The respite may take months. So far I've mastered six or seven
words. With 301,100 of the little rascals in the Oxford English Dictionary, at one per day . . . you do the arithmetic.  Cordelia Botkin, the 1898 poisoner that I have enshrined in three chapters thus far, will have to wait until I can tpe without mistakes and missing (see what I mean? "type" and "words").
    “I spent four days in Kaiser Hospital where got such attentive care that Margo and I bought three two-pound Mrs. See's chocolates for each of the three shifts (the day crew usually gloms on the goodies, I'm told). Margo got a gizmo that fits on my wrist so I can get help if I've fallen down (as seen on TV!) and can't get up. Lots of flowers, full dinners from Margo's synagogue and other friends, many cards, phone calls, dozens of emails, phone calls I can't answer and musical visits (the mandolin is about 75
percent). Kenny is the affectionate daughter; Margo the loving partner. I am a lucky guy.
    “Bye bye. (That's one of my seven words, along with ‘on,’ ‘duh!’ ‘oh boy!’ ‘mine’ and, of course, ‘No!’)
    “With love from Margo and Kenny,
        “Lynn”


Keep the faith,
Margo



Ludlow update No. 7
Thursday, Feb. 8, 2007

We’ve passed some sort of watershed. Lynn’s speech has gotten to the point now where he can get most of his more simple thoughts over more easily by speaking than by writing. The speaking is still slow enough and mushy enough that there’s a lot of guessing for me and other listeners. It’s probably still faster in some cases for him to just write a note -- for anything complex, or anything using complicated vocabulary. But the more he speaks, the better he’s going to get. We’re still doing speech exercises two or three times a day, and Tuesday I asked Erin, the interim speech therapist, for some harder exercises, because he’s mastered some of the simpler ones. Also, he is so bored with counting from one to ten and reciting the days of the week that we end up just playing word games instead of doing the exercises.

Erin did some assessing, and he has about six or seven consonants that he’s pretty good with: m, n, p, b, w, h… and several vowels: oh, ah, oo, aye. He has a sort of mushy enunciation for probably a dozen more consonants: l, f, v, g, and so forth. Consonant combinations are still too hard: th, sh, st, str, that type of thing. The harder vowels are coming along. Sometimes he can say some of them -- the long A sound, the long I sound. And just about everything is still tricky in terms of consistency. Any of the sounds, even his very best ones, can just stop working for no apparent reason just about any time. The mystery continues…

So anyway, Erin said, sure, why not, try some hard sounds like s, and sh, and ch, th. Just give it a go and see what happens. So we have, and of course, sometimes he can say them clearly and sometimes he can’t -- sometimes his lips, tongue and vocal cords follow directions and sometimes they take direction from no one. Most often, it’s somewhere in the middle -- he can say a sound, but not particularly clearly.

The main thing, though, is that he’s trying to speak. If he goes very slowly and enunciates one syllable at a time, he has a lot more luck in getting others to understand. It’s a bit of a slog for a guy who used to effortlessly hold court for paragraphs at a stretch. And there are frequent expressions of clear exasperation at my inability to understand what he’s saying. But it’s such a vast improvement over two weeks ago.

When he gets frustrated, I try to get him to see how rapidly he’s improving, that it’s amazing that he can do as well as he can, and his stock response now is “Hubba, hubba.” But it actually does seem sort of miraculous to me. It’s been three weeks and five days since his stroke.

That’s the short version.
Keep the faith.
Margo

Here’s the longer version:

In getting what Lynn’s saying, it helps a lot if you know pretty much what he’s going to say, and the context helps a lot. He said yesterday: “Please go to the bathroom and get the book on obits.” Most of the words were only partially intelligible, but since I knew there was book on obits in the bathroom (“The Dead Beat,” which he’s enjoying immensely), I could make out what he was saying. If Lynn were talking to someone just parachuting in, I wouldn’t bet any money on him making himself understood. Another example: I watched a DVD movie over the past few days about Baba Ram Dass, who had a stroke some years ago. Ram Dass regained his ability to speak, although he has trouble finding some words, so he talks poetic circles around the missing word until his listeners get it. In the movie, Ram Dass calls his stroke a gift and a miracle (He says: “I got stroked”), and talks about it as a part of his path, helping him get to the spiritual work he needs to do.

So I was talking to Lynn about how Ram Dass worships a god, a kind and benevolent god, and that belief helps him see his stroke as a gift. Lynn doesn’t have any particular beliefs in any particular god or gods, or even or even a benevolent fate. And to me, that seems like a problem in accepting where you find yourself, particularly if you find yourself somewhere that you don’t want to be. Lynn was struggling to say something, and I worked out one word at a time as he said, with religious gravity: “I have learned to worship Margo.” I laughed so hard… and couldn’t help but wonder how someone stumbling into our house would ever understand what he’s saying. When you’re trying to work out what someone’s saying, you have mental brackets around what the possibilities are. Lynn blithely strays outside those brackets pretty regularly, and the words are still very, very mushy. Lynn could also have said: “I had learned to burnish marbles.” That would have made about as much sense, really.

Anyway, we’re slowly working on getting Lynn more independent. He took a cab across town yesterday, because I had a basketball game that I didn’t want to miss at the same time he had to be at Kaiser. He wasn’t able to make the cabbie understand where he wanted to go, so he wrote down the address. It worked out fine. We made him a little index card that he can carry in his pocket. It says: “I recently suffered a stroke, which has affected my ability to talk. Please be patient. Thank you, Lynn Frederick Ludlow.”

He also can drive now, although I’m still nervous about the heavy, speeding traffic on Cesar Chavez Street near our house and the steep street with blind curves uphill from us. He’s driven a few times over in the Sunset District with me in the car, and he really seems fine. Kenny is still terrified at the idea of him driving, so -- for now -- he’s not driving the car when she’s in it. And I’m not so crazy about him driving around alone, but I think that’ll come.

Anyway, that’s all for now.

Keep keeping the faith.
Margo



Update No. 8
Sunday, Feb. 11

It’s been a difficult few days over here at the Hampshire Street Speech Therapy Center. We are so sad about Fran Ortiz’s death that it’s hard to focus. Lynn and Fran were hired at the old Examiner during the same week in 1961, and worked together for almost 35 years, until Fran retired in the mid-90s. Lynn loved him and admired him. The first day we knew about Fran’s passing, which was actually about a day after he died, Lynn was just not interested in working on the speech stuff. He kept trying to say something, and couldn’t. I was hoping he would go to his computer and type what he was feeling, and I asked him to, but he didn’t. Or maybe he wasn’t able to. I don’t know.

Even as we are conscious of how lucky we are, there is this even bigger feeling of how arbitrary and unfair the whole thing is. We are given this really hard path, an incredible amount of work to do before we can even function normally. But as we slog along on this road, Fran is just suddenly swatted off the earth. No long preliminaries, no negotiating or accepting your fate, or buckling down to work hard to regain what you’ve lost. Just all of a sudden, he’s gone. It’s so unfair. And so hard to accept.

Lynn called it a “hammer blow” in his condolence card to Cathy.

We were talking to Lynn’s doctor about Fran’s death, and how hard it’s been for Lynn, and I realized she (the doctor) must see this all the time: her patients, many of them older, struggling with their own severe health problems -- and dealing at the same time with the deaths of their friends, peers, colleagues. It’s just part of the scenery of old age.

On the word front: Lynn’s speech is still improving, although it’s still very hard to understand him, and it’s very, very slow, as he struggles to produce one syllable at a time. He sounds like someone with severe disabilities. So, people who don’t know his situation assume he’s more disabled than he is. A receptionist at Kaiser asked me to help Lynn fill out a form that was just information like his name and address. He had shown her the little card explaining he’s had a stroke that has affected his ability to speak. So she assumed he was incapacitated, maybe helpless. I think we just have to be very clear about his capabilities as we go out more -- just make it clear that he’s pretty much fine except for the speech. Maybe we should even add something like that to the little card: “I’m not stupid, I’m just mute.”

That’s the short version.
Keep the faith,
Margo


Here’s the longer version:

We are getting out more, although it really does seem like most of our getting out is just going to Kaiser. We have appointments there almost every day: the primary care doctor, the neurologist, the cardiologist, the speech therapist, the blood tests for the coumadin treatments. It just adds up. We actually had a day off from Kaiser on Thursday, but that was only because a Thursday appointment got changed to Friday, when we had to go in for a blood test anyway. Lynn’s been saying we should just rent a pied a terre over there.

I had been trying to get Lynn out of the house every day, just so we wouldn’t get too housebound -- for the fresh air, for the contact with people who aren’t sick, etc. We’ve had some really nice walks, on Mission Street, Valencia Street, Courtland Street, Bernal Hill, in Golden Gate Park, etc. But now that it’s been raining, it seems like we’re pretty much staying inside but for Kaiser excursions -- except for Kenny’s basketball games.

As anyone who knows Lynn knows, basketball is the main reason to get up in the morning. The court is the closest thing Lynn knows to church. And games are about as religious as he’s going to get. So even with his stroke, he didn’t miss any of Kenny’s games (She’s playing this year on Lowell High School’s varsity team). I videotaped the one game while he was still in the hospital and hustled the tape over to Kaiser as soon as the game was over. As soon as he got out of the hospital, he was game for going to Kenny’s matches, even when he was still a bit unsteady on his feet. He can’t talk with the other parents or root for the team, or even harass the refs, but he doesn’t seem to mind. He’s just happy to be there.

Kenny’s team this year really should be nicknamed the heart attacks, not the Cardinals. They play each game just barely well enough to win. They are now 25-2, but there have been only a few games that weren’t close for at least part of the game, and many of the games have been close all the way to the last seconds. Their one league loss was in triple overtime. I was saying the other day that the next team fundraiser should be for one of those little defibrillators that you can carry around in a suitcase -- because it’s just a matter of time before one of the parents is going to need it.

Lynn took a cab to the Glen Park gym last week while I was playing basketball. Even though he can’t play anymore, he still was content to be in the gym. The sound of a bunch of pick-up games is really wonderful -- the rhythm of the balls bouncing, the pounding on the floor as players run downcourt, the squeaking of the shoes, even the sweaty smell. It’s all a part of being in the gym, and it just feels right. When he came to the gym last week, he was walking slowly along the wall at the end of the court, minding his own business, and someone on the court missed a pass that was thrown too hard, and a speeding ball missed Lynn’s head by about three inches. I was watching him, and I had a quick horrible series of visions of another ambulance ride, more hospital time, more rehab, more MRIs. We just have to be a lot more careful and more conscious of where dangers might be. And they are everywhere.

Lynn’s been reading about strokes on the Internet, and he keeps giving me statistics. One in 20 stroke patients has another stroke within a year. (“Just shoot me,” Lynn says.) One in four has a serious fall within a year. So we have to careful about his going up and down stairs, about the uneven surfaces on the sidewalk outside our house, about the edges of the rugs in our home that could be a tripping hazard.

There’s just a lot more to be aware of, a lot more to be done, even while the medical appointments and the speech therapy are pretty much a full-time job. I think we’re both feeling a bit beaten down by the endlessness of it. Even as Lynn has turned a corner with his speech, it’s made a long stretch of very steep and difficult road visible ahead. I’m thinking that for the first month or so, it was partly adrenaline that kept us going. Now we’re settling in for the long haul, and it looks daunting. And Fran’s death came just as the fatigue hit us.  

That’s all for now.
Keep the faith,
Margo

Ludlow Update: My frame of mind
Mid-February 2007
Not sent out

A number of people have asked how I’m holding up. The answer is kind of a moving target. Some days are better than others. Writing about what we’re going through has helped a lot in clarifying and helping me process the whole catastrophe.

From the first hours in the emergency room, I have felt gratitude for how kind people have been. Katherine came over so fast when I called that she was here before the paramedics had left, and she was careful enough of Lynn’s feelings, his possible need for privacy, that she stayed out of his line of sight. And at San Francisco General’s emergency room, several of the dozens of people who were working on Lynn turned to me when they were done with Lynn and asked how I was doing, did I need anything? Could they get me a glass of water? Truly amazing!

Actually, at first, I don’t think I was feeling anything. There was so much that had to be done, just absorbing all the medical information and making the medical decisions, trying to figure out how and when to get him to Kaiser, how to explain this all to Kenny, how to notify the rest of the family. I didn’t really get a chance to think too much. As soon as I had a chance to react emotionally, I think dismay, fear, horror were all there. For the first hours, it looked like he was paralyzed, and I figured we’d have to move, that our lives would be incredibly different, maybe more than we could manage.

And then, even as the situation improved, I could see months and months of rehab ahead of us, and my strongest feeling was just fatigue. As I said to my friend Bernadette: “I just feel like we’ve been here before. Lynn can’t walk, and we have to start from scratch. It was like this after his first heart attack, then after his second heart attack and the heart surgery, and then again just last year with his hip replacement… I just don’t know how many times I can do this.” With a few more weeks of distance, I can see the many good years we’ve had between those very difficult times: six years between the two heart attacks, and another seven years before the hip surgery. But the hip surgery was just last year, and the recuperation was so long, and so hard. I’m not sure Lynn was fully recovered from that yet. And I don’t know if I was.

So Rabbi Carol at Or Shalom the other night was talking about four levels of understanding in some parts of Judaism: Starting at the most basic and working upward: The physical, the emotional, the intellectual, and the spiritual. So, you could take the reactions and frame of mind in the same progression. At first I was just responding physically: “What needs to be done?” And then I was responding emotionally: “I’m tired, horrified, scared, dismayed, saddened, the whole disaster.” Then I think writing about this process is helping me intellectually process it. The spiritual level of understanding will come when it comes.

Today, it feels like everything is going to be fine. It doesn’t always feel that way. Today I feel like both Lynn and I are settling in for the long haul and the hard work that the rehab is obviously going to be, with a hopeful attitude. Because it’s not me going through the true struggle here, I think I was able to fall into that mode more easily than Lynn. And perhaps also because talking was not such a huge part of my life. Lynn is coming around to accepting where he is right now. That’s not to say he’s happy with it. He’s not. He just seems more willing to work from wherever he is. His notes are shorter and more to the point. He’s still a show-off. He actually wrote “whilst” in a note to me yesterday. And then he pointed out that it was the first time in his life he’d used the word, excepting crossword puzzles, of course.

I can’t help but occasionally dwell on the trade-offs involved with marrying an older man. The health issues are always in the background, and sometimes, obviously, in the foreground. Someone in my position can expect some years of caring for a partner who is in less robust health.  But there are no particular guarantees. I can’t help but think about a colleague about my age, married to a man about Lynn’s age. She left him for a younger man, and the younger man immediately began having health problems. The older man, of course, is chugging along healthy as a horse. So there’s no way to know. But the odds were against us on this one.

The trade-offs with an older, previously married man are many. He was housebroken already. His ex-wife had overcome the natural single-man resistance to washing dishes, bringing the paycheck home to the family, that sort of thing. He was not commitment-phobic like so many young men. As he used to put it: “I’m in favor of marriage.  I’ve tried it three times.” He was already financially secure. He had no trouble with the question of whether to have children. These kind of questions and struggles bottled up some of my friends and their youthful husbands for years.

But then there’s the other side: The body is also housebroken, and beyond housebroken. He has sclerosis in the arteries of his heart, and the arteries in his brain. His lungs are the lungs of a man who smoked Lucky Strikes for 30 years, although he quit about 25 years ago (part of God’s preparing him to meet me). Even so, the surgeon who did Lynn’s bypass operation in 1998 told me that his coronary arteries were ossified in a way that you only see in people who had been smokers. All the years of smoking are still in there. So, I remember part of my emotional reaction during his heart troubles was anger at the tobacco companies for pushing that horribly harmful habit. And some anger, of course, at Lynn for continuing to smoke for many years after it was clear that smoking caused many serious chronic diseases.

Margo



Ludlow Update No. 9
Thursday, February 15, 2007

First some Page 2 business:
Corrections:
Lynn points out that he and Fran Ortiz were hired by the Examiner in the summer of 1963, not 1961, as reported in the Ludlow Update No. 8. And in the same update, Cortland Street was misspelled Courtland. I should know better on both counts, and the Ludlow Updates regrets the errors.

Also: I accidentally erased all the messages on our phone machine about a week ago (twice!), so if you left an important message and were waiting to hear from us, you might try again. Again, the phone secretary regrets the error. I don’t know if my slightly spastic handling of the phone these days is a side-effect of Lynn’s stroke -- sort of like some men get sympathetic symptoms when their wives are pregnant.  

Also: There is a pinkish round Tupperware container with no name on it that must have arrived with one of the deliveries of food over these weeks while our friends have been sustaining us. If it’s yours, please let us know so it can return home. And many thanks, of course.

Back to the main news:
Lynn lost a little bit of ground on the speech front by not working on the speech exercises for a few days after we heard about Fran’s death. It seemed to me that it would be best to just let him grieve and rest a bit and we could just take up where we left off when he was ready again. But that’s not how it works, at least in his case. His speech started deteriorating pretty quickly. Just a bit, and not so anyone other than me or Lynn would notice, but he was definitely backsliding. So that scared us a bit, and we got back on the horse. It’s been just once a day for a few days now, but we’re still aiming for twice a day.

The main speech therapist, Mary C., is back from her Hawaiian vacation and we saw her Tuesday, for the first time in two weeks. She was just floored by Lynn’s progress. She was taking notes as fast as she could for a while, just writing down all the stuff that Lynn could say, and then she stopped writing and just marveled. It was kind of cool. She said, something like: You know, I couldn’t tell you this before, but with the kind of stroke you had, the severity of the stroke, in the location that you had it, most people just don’t recover much of their language. She was amazed. We talked a little about the neurologist’s speculation, which I had also thought of very early on, that more of Lynn’s brain may have been involved with language than in the typical brain. So the damaged part is lost, but he has little pockets of language resources all over his brain, which are being activated and expanded as we work.

We all got so excited about how far we’ve come, that we sort of wore out the synapses or whatever it is that’s limiting Lynn’s speech. There is a very clear limit on how much he can talk, or even try to talk. We run into this wall during most of our speech exercises at home. After about 15 or 20 minutes, his lips, tongue and vocal cords just stop responding to commands -- they just continue to march to their own drummer, enunciating sounds that have not been requested and refusing to produce the sounds and syllables that have been ordered up. So that’s where we were after about a half-hour, and Mary C., apparently recognizing the syndrome, backed off. She worked with me a little bit, telling me what to work on next, giving us new worksheets of exercises. The main job now is working on word pairs, which should help Lynn differentiate “s” from “z” and “cl” from “c,” that sort of thing. There are sounds called consonant blends (who knew??) that Lynn is having a really hard time with: like “bl” and “sn” and “str.”

As part of ratcheting up the level, she gave us a harder song to use when warming up for our speech exercise sessions. Lynn had been singing “Happy Birthday to You,” and he was really good at it by the time we saw Mary C. on Tuesday. But it has very few tough letters, very few consonant blends. So Mary C. said try “Take me out to the Ball Game,” and boy, did Lynn get blocked up. A “k” in the first word. Those l’s in ball -- for some reason the hard letters at the end of a syllable are harder than the same letter at the beginning of a syllable. Lynn just got completely balled up. But he’s working on it, and he’s getting good enough at it that he sang for me, yesterday: “And it’s one, two, three strokes you’re out, at the -- old -- ball -- game.” Mister word play at work.

That’s the short version for today.
Keep the faith.
Margo.

Here’s the longer version:

Mary C. talked about how I can model the words or sounds he’s learning to say, and he should study my mouth to make it easier. And then after he’s better at a particular word or sound, my mouth can be covered or hidden, and the next step is he should be able to talk without the model.

We talked about strategies for getting the words flowing when you get stuck. She emphasized that he should really try to stay simple… which has been really hard for him. He’ll want to say something more complicated, and his speech skills really aren’t up to that, so he gets stymied.

For instance, at the beginning of the session, Mary C. was trying to assess his speech and she was giving him the beginning of sentences, and he was supposed to finish them. Meanwhile, the phone in her little office started ringing. She says, “The phone is ringing, I should…” and she’s looking for him to say: “answer it,” which is pretty easy -- no l’s or g’s or k’s or consonant blends. But he stumbles, and I’m looking at him, wondering what’s going on, and I realize he’s trying to say: “ignore it.” A “g” is really hard to say, and he’s all balled up and can’t get a word out. So she starts on him, with a rap something like: You are a man of many, many words, a man with complicated thoughts. But your speech skills are not up to that level of discourse yet. For now, you need to keep it simple, keep it obvious, use the words that come automatically, rather than trying to force the ones that are still impossible to say.

She asked about his strategies for talking. And he told her how we’ve realized that he needs to focus on just one syllable at a time. If he’s trying to say a longer word, and there’s a difficult letter in the second or third syllable, it can screw up his ability to say even the first syllable. So he gets one syllable out before he starts on the next. It’s hard on the listeners, but it does seem to work for a while.

She asked about whether he’s tried to talk on the phone yet. He hasn’t except for with me and Kenny. Mary C. suggested he try it. Some people have an easier time on the phone than in person, she said, and no, she doesn’t know why. Another mystery. She said it could have something to do with relaxing because no one is looking at you.

He ended up trying this, inadvertently, the next day, when he answered the phone, thinking it was Kenny. But it was the secretary at the speech therapy department at San Francisco State, where we’re trying to get Lynn enrolled for additional sessions. He told me later that the secretary was patient with him, and that they were able to communicate, with her asking him simple yes and no questions. He said he explained his situation to her by saying: “I’m -- at -- a -- loss -- for -- words.”

Mary C. asked about social situations, if people are waiting for Lynn to talk, and he said, sometimes and sometimes not. Sometimes he just disappears. The conversation goes on, and he can’t really keep up, so he feels invisible. (He didn’t really say all this, he spoke part of it, and made signs -- the little “blah, blah, blah” hand signal of thumb touching fingers, opening and shutting like a mouth flapping -- and part of it I filled in, based on his clear frustration when people talk past him for an extended period of time.) She nodded understandingly, but didn’t really have any advice. People who know and love Lynn will know how painful this is for him.

She asked about driving, and we can report that he’s driving and he seems fine. I was not ready for him to drive when the neurologist cleared him. But it’s been about a week now since that first day that when we drove around out in the wide, flat, straight streets of the Sunset District for a little bit so he could just to get a feel for driving again. Lynn gradually took on more challenging driving situations. Then one day, he drove us home from Lowell after we picked Kenny up. It was like it was automatic. After you’ve been driving for so many decades, it’s almost like breathing. He went on the freeway, and then on Cesar Chavez, and then up our narrow, steep street, and then into the garage. I hadn’t even realized that he was driving, and that I should be scared. But I wasn’t and he seemed fine, and seems fine behind the wheel. So when I look around me and think about how lucky we are, that’s near the top of the list, that Lynn can still drive safely.

In assessing his situation, Mary C. asked both of us: “What percentage of the time does Margo understand you?” And I said, about 80 or 90 percent of the time, which is how it seemed to me. And Lynn said, “About 50 percent.”  I was stunned. I really thought I was getting more than that. He said he just gives up a lot, and he was counting that in getting the 50 percent figure. But later on, I realized that the question is not really a speech therapy question, it’s a couples’ counseling question. “How much does she understand him?” She says: “I know what he’s thinking before he does.” And he says: “She has no idea what I’m talking about.” And vice versa. We can’t really blame this one on speech, although the speech deficit is making it a bit tougher.

We’ve figured out that we can have our same old arguments by writing notes to each other. The first disagreement we had while Lynn was mute was bizarre. I felt like a big bully -- so mad, and raising my voice at him, and him writing notes back. So I sat down and starting writing notes to respond. And he wrote something like: “What are you doing? You can talk.” And I just kept writing, because it seemed more even. And it’s actually an excellent technique. The whole situation de-escalates quickly, because you’re not going to write down anything really ugly, and you have time to think before you respond. And there is no question about what you said or didn’t say at what point. There is a pretty good record.  So anyway, it’s a slower and more difficult way to communicate, so it’s been tempting to revert to talking through the stuff we’re not agreeing on as he gets better, because it’s so much easier and faster. But I’m thinking writing down our arguments is a technique we should carry on with, even after Lynn can talk better.

So back to how much do we understand each other: Even if I’m not doing as well as I thought I was, I’m still Lynn’s best interpreter. We visited Lynn’s cardiologist a few days ago, and the doctor looked to me for translation for just about everything -- again partly because Lynn’s words are unclear and mushy, and partly because he was saying stuff the cardiologist wasn’t expecting to hear. He was asking about Lynn’s weight, and Lynn said “I’m going to write a book entitled ‘How to Lose Lots of Ugly Fat on the Stroke Diet’,” because he actually has lost some weight. And the doctor looked at me, having not understood one single word. When I translated, he just started laughing, partly because it’s funny, of course, but I also detected that kind of laugh that you laugh when you hear something totally unexpected.

Anyway, that’s probably enough for now.
Thanks for all the good thoughts and prayers.
We are grateful all the time.
Keep the faith.
Margo



Ludlow Update 10
Thursday, Feb. 22, 2007

We’re making some sort of transition here at the Hampshire Street Speech Rehab Spa. It’s becoming clear that this is going to be a long-term recovery, maybe months-long, and we’re having to look further down the road and establish a more sustainable rhythm. I need to get back to work -- and Lynn needs to re-establish an independent life. So I’ve been taking small jobs, just a few hours at a time, not too far from our house. And Lynn is doing fine on his own at home without me. That’s been good for me, just the feeling of accomplishment and competence of doing my own work, and completing jobs that make some sense. I rewired a ceiling light the other day, and felt a surge of pride and joy when I flipped the switch and it turned on like it’s supposed to. And then it turned off as directed. And on again. A very different feeling from trying to guess what the next step in a stroke recovery will be.

As the amateur speech therapist in the house, I feel like I’m winging it most of the time. I don’t feel particularly competent, I just feel like I’m doing what I can to avert more serious trouble. The speech therapist, Mary C., has been great. She's been coaching me as she coaches Lynn. She’s giving us new stuff to work on each session, based on the progress that Lynn is making, and giving me tips on how to help him do the speech exercises. We’re working on the “j” sound and we still having a lot of work to do on the “blended consonants.” There are still a half-dozen letters that Lynn can’t say at all or has a lot of trouble with: j, x, z, r, l. And the blended sounds such as “tr,” “str,” “bl,” “gl” are still a major hurdle. Some letters he’s able to say at the beginning of a word or syllable but not at the end, (“K” usually works fine at the end of a word, but he gets balled up when it’s at the beginning or in the middle). And some he can say when they fall inside the word, but not when they begin a word. (“R’s” are good inside a word, but not at the beginning.) Sometimes he can say a “th” and sometimes he can’t. The process of rewiring Lynn’s brain for speech has gotten no less mysterious as we’ve continued.

And the process has slowed down. The day-over-day progress is smaller, and harder to detect. Most days I can see some small thing that he couldn’t do the day before, but they are not huge things, such as adding clear vowel sounds, like we were seeing a few weeks ago. The progress now is more incremental, such as the “th” sound at the beginning of the words is a bit firmer than it was a few days ago, or the “s” and the “z” are starting to sound more different from each other than they did. It’s a lot harder to say, “Wow! That was cool!” But it is still exciting when something clicks.

That’s the short version.
Keep the faith.
Margo

Here’s the longer version:

Several neurologists told us early on this slowing down would happen, that the healing that’s going to happen rapidly and more easily will happen in the first weeks. As the weeks and months go on, we should expect the progress to be slower and more difficult. I’m not really clear why this is, but we were warned. And even reading these sentences, I’m thinking, there really wasn’t much easy progress. It feels, as I told Mary C. yesterday, like we’ve just been swimming really hard over here for about six weeks. It doesn’t feel like any of this came easily.

Mary C. stopped during our session yesterday and said it was time to make a longer-term plan, and I had a flash of anxiety that she was going to say that it’s time for Kaiser to cut back on helping Lynn or something like that. We would be adrift without expert help on this mysterious and difficult journey. But it was nothing like that, it was more like, “Let’s set a regular set of days that you guys come in, and we’ll reassess your needs on a monthly basis.” It was actually right in keeping with what we have been experiencing at home -- that the intense, winging-it-all-the-time schedule needs to be formalized into something you could recognize as a sustainable schedule.

Yesterday, she tape-recorded Lynn and played it back for him, so he could hear what he sounds like from the outside, rather than from the inside. She asked if that was his regular voice. We weren’t really able to answer. It’s so hard to tell what’s normal and what’s not. I have the sense that it is his regular voice, it’s just the speech pattern that’s not normal. I think she’s concerned about whether he’s tightening up and constricting his voice box as he strains to get the words out.

His speech has continued to improve, and I can understand him most of the time -- the words come out slowly, one syllable at a time for the most part, and he gets stuck sometimes, but marginally less than he did a few weeks ago. The challenge for the listener is to just relax and wait for it to come out. If you try to push the speech faster than it’s ready to come out, the process gets off track and it’s worse. It’s frustrating if we’re trying to get something done under time constraints, and that’s caused some very entertaining moments, as you can imagine. We’re trying to allow more time for just about everything, just to avoid the stress of trying to communicate under duress.

Most people who are seeing him for the first time since his stroke are really surprised by how good he looks. I apologize if I’ve made the situation sound more dire than it is. To clarify, and answer questions that people have asked: His gross motor skills are about 95% of what they were pre-stroke. So he can walk. He can climb stairs. He can dress himself, get out of bed by himself, bathe himself, feed himself and drive. More to the point: He can do the laundry, wash dishes, cook dinner, etc., and no, the stroke didn’t make him like any of that any more than he did before. It’s a lot like having a husband around the house, but quieter.

His fine motor skills are somewhat less fully recovered. He varies in his estimates of how his typing is doing: perhaps 75% to 80% of his pre-stroke level. (He was a bang-up typist, and one of the English-speaking world’s great spellers.) He thinks his mandolin picking is somewhere around 80-85% of before. He can’t really sing, of course. However, he can hum quite well. (He’s tried singing some of the old familiar songs, the Irish ballads that he loves so much, but the words are so halting and uneven, that even with the tempo slowed way down, it doesn’t work.) He does not seem to have any cognitive damage. His language processing skills are fine. He does the crossword at the about same skill level as he did before, although he still says he’s slower than he was before the stroke. So anyway, he does look good. His color is fine, he laughs easily as ever, and he’s lost some weight.

He says he’s going to write a book about losing weight by having a stroke. Part of it was the paralysis, the intravenous feeding, and then the trouble swallowing. But most of that was resolved in just a few weeks. The main thing now, he says, is that food and drinks don’t taste as good, so he doesn’t enjoy eating as much. He also eats quite a bit slower, because he has to pay attention to chewing and swallowing in a way that he didn’t before. So anyway, he continues to slowly lose weight, which we are counting as a side-benefit.

He does sleep a lot more than he did before. I’m thinking that his brain healing is an exhausting enterprise, so I just let him sleep. It also may be an escape mechanism, which I also support. If I woke up every day knowing that just saying “good morning” was going to be a major effort, I would probably go right back to sleep, too.

Summarizing: The speech really is the only major rehab issue for now. And for that, we are grateful every day, because even with just that, our job is daunting.

There are other health issues, of course. We are still going to Kaiser several times a week for the blood tests to get his Coumadin level right. It’s the blood thinner that’s supposed to help prevent another stroke. His long-standing hearing impairment, which we were never able to get corrected very well despite many thousands spent on hearing aids, is causing some problems with the speech therapy. He has to be able to hear what the speech therapist is saying in order to repeat it. So we’re in line for yet another hearing assessment at Kaiser, and more hearing aids. His long-standing cardiac problem is sort of in the background now, but it does require regular monitoring by his cardiologist, and he’s on some meds for that -- beta blockers and cholesterol meds. He still has stenosis of the spine, which causes a lot of discomfort, and makes exercise difficult and painful. And he has bronchial asthma, which doesn’t seem to respond to the medication he has. So he has a chronic cough that sounds pretty bad, but he seems used to it. Anyway, for a guy with a dozen health issues, and enough Kaiser appointments that he needs a nearly full-time medical manager (that’s me), he still looks pretty darn good. And, as I said, most people who come to visit are surprised.

The possibility of another stroke is our main big fear right now, lurking in the background all the time. The Coumadin is supposed to make that less likely, but the pertinent statistic is that one in 20 people who’ve had a stroke have another one within a year. I can’t think about that too much -- when I do, I feel weak all over with fear. I’m reading “The Stroke Book,” by a pair of women, one a stroke patient and the other her care-taker, so it covers both points of view. They describe a lot of what we’re going through, except they are so DAMN cheerful, even after the patient has a second stroke. Reading it just makes me mad. They go through what we’re going through for six months, and they are getting close to some level of normalcy, and then the patient has another stroke. Just to keep things interesting, she has the opposite kind of stroke. Her first was a hemorrhagic stroke (bleeding stroke), and the second was an ischemic stroke (caused by a clot). And they were back to square one.

The fact that they still seem pretty good-natured about it just pisses me off. I don’t know why. Maybe it’s knowing that I really couldn’t do that. It’s my biggest fear right now, and I don’t think I could do the necessary submission to fate a second time. Anyway, Lynn mentions the second-stroke statistic often enough that I know it’s there in the background for him all the time too. It’s just this dark murky monster underlying our world right now. It’s sort of a familiar feeling for me. When Lynn had his first heart attack in 1992, when Kenny was one and a half, I lived in dread for a while, afraid of being left with a wee one to care for alone -- worrying every time he played basketball. But that wore off after a while -- maybe it’s just fret fatigue -- there’s only so much worrying you can sustain long-term, and after a while you just have to pay attention to dinner needing to be fixed, shoes needing to be tied, and the dozens of little joys and troubles of the typical day with a toddler.

That said, part of what we’re doing right now is realizing how dramatically and irrevocably our lives have changed. Lynn wears his medic alert bracelet all the time -- it’s the little device with a button on a wrist-watch type thing. He’s supposed to push the button if he needs help, and it turns on a speaker-phone connection to an operator with a list of phone numbers to call, my cell, our friends nearby. The operator then calls 911 if there’s no one here in the neighborhood who can help. But the medic alert system works only in our house. We’re talking about ways that he can be more independent. He will need his own cell phone, so he can call for help when he’s outside the house. And Mary C. pointed out to us yesterday that he needs to have a card with his medical information on his person at all times. Paramedics would need to know all his medical conditions, particularly the heart trouble, and his medications, particularly the blood thinner Coumadin, which makes him susceptible to heavy bleeding if cut, and internal bleeding at any time. So he basically needs to be ready for the paramedics at any time, really, even as we try to aim for a more normal life.

That’s the news for now.
As always, thank you for your prayers and good thoughts.
Keep the faith.
Margo



Update - Lynn’s vocabulary
Late February 2007
Not sent out

In the hospital, early on, when Lynn first was writing -- very slowly -- on his whiteboard to communicate, I don’t think he had yet made the mental leap of  “Communicating is much slower now, and I really must edit myself.” He was still the old Lynn, who if he could make a story better with embellishment, more detail, more digressions, well, that’s what time is for.

So, the speech therapist, Mary C., is trying to assess him, and she heard me say something about Kenny. So she asks him, “Who’s Kenny?” She guesses: “Your son?” “Brother?” “Cousin?” “Neighbor?” And he shakes his head and starts to write -- slowly and carefully -- on the whiteboard. I thought he was going to write “Daughter,” and I was prepared to tell the speech therapist that this was true, not a measure of his disorientation after the stroke. So he writes “My 16-year-old life of my light daughter.” Then looks at the whiteboard like there’s something wrong with it. Mary C., of course, is also looking at it like there’s something wrong with it, like “daughter.” And then Lynn erases “life of my light” and replaces it, slowly, with “light of my life.” And Mary C. looks at me, silently asking, “Is this for real?” And I say, yes, the daughter’s name is Kenny, and yes, he is a show-off.

And yes, he’ll use nine words when he could use one. This is the guy who wrote a 600-page memo for his editors at the Examiner on how the Saturday paper could be remade. The memo could very well hold the world record for longest memo that has not been read by anyone. At the time, I suggested that since he had already written 600 pages, it wouldn’t hurt to write a few more pages, in the form of a one- or two-page summary, for people like his editors, who were going to be too busy to read the whole thing. Not only did he refuse to summarize, he got annoyed at the suggestion of writing a shorter version. I said the editors were busy people. He said he had taken the time to research and write the thing, the least they can do is read it. Needless to say, it languished. He never got one word of feedback about it. So much for editing himself for length.

Back to the current situation: A week or so later, when we visited Mary C. at the outpatient clinic, she had told us she was taking a vacation, going to Hawaii for two weeks. At this point, Lynn could say just a few words: “no,” “hi,” and “bye.” He was nowhere near being able to enunciate three-syllable words. But when we were leaving, Mary C. and I said “good-bye,” and we were waiting for him to say “bye” or maybe, with some luck “bye-bye.” He was struggling, trying to get a word out. So we were guessing for him: “Have a good vacation?” “Travel safely.” No. And no. Eventually, he gets us to understand he’s trying to say “aloha.”

So, yeah, he’s still a virtuoso with words. He still wants to use his whole vocabulary. He wants to use the precise word to the point where sometimes, early on, when I was guessing what he wanted to say, when I finally figured out what he was trying to say, I’d look back at the guesses that I had made, and several would have been close enough to get the job done. But he was trying for the exact word that he was thinking of. He’s given that up now. If I get anywhere near, he’s happily nodding his head.

With communication so slow and difficult, one of the first things we had to establish is how to convey that we have a medical emergency. I told him about the system we had in place when I was a kid, and we went hiking in the mountains of Colorado. We always carried whistles with us, and we knew that three sharp blasts was the signal for emergency. Also, in the ambulance world, code three means life-threatening emergency. Code two is urgent. And code one means “Come over when you can.” So we decided that three of any sound is the signal for an emergency: Three yelps, three grunts, three “hi”s, three whacks on the wall, whatever.

On one of our first days home from the hospital, before we established the rule of three, I heard him in distress in the kitchen early in the morning. He was standing stock still between the stove and the microwave. He still had no words at all, and I was desperately trying to guess what his obvious distress was about. He was vocalizing, with a very distressed look on his face, and rubbing his hand in a circle over his abdomen. I guessed, “Your stomach hurts badly?” No. And why was he standing there as if he were frozen? “You’re paralyzed again?” No. He kept rubbing his stomach, in a circular motion. I started from scratch: “Is this a medical emergency?” No. OK. I can calm down. So then I notice mushy, clumpy oatmeal scattered on the floor all around him. He had been making instant oatmeal in the microwave, and spilled it on the floor. He was standing still so as not to track it around. He was still stiff enough that he knew he couldn’t bend over and clean it up. And the circular motion over his stomach? I had shown him sign language for “I’m sorry” the day before. The letter “s,” which is basically a fist, is moved in a circular motion over the heart. He wasn’t clear yet on the heart part of it, so he was moving the “s” for “sorry” over his abdomen. So, of course, it didn’t read like “sorry” to me, it read like “my stomach hurts.” So anyway, that’s beginning of Lynn learning that sign language is also very precise and specific.

At our first visit with the neurologist, he wrote a note to the effect that regaining his ability to type was very important because he’s in the middle of writing a book. So she asked about his book, and what his job was before he retired. I told her that he had spent a lifetime working with words: writing, editing, teaching writing, analyzing writing. We talked about how odd it was that his language ability seemed to be almost entirely intact, even though the ability to speak had been lost. She speculated that maybe more of his brain had been engaged in language than in most people. So other parts of his brain were already capable of using language, even though the primary speech area was badly damaged. I had had similar thoughts very early on -- that his brain is so engaged with language and words and verbal play that language may be spread very widely in his brain, not just in the normal language centers.

Margo



Ludlow Update No. 11
Wednesday, February 28, 2007

The weekend was a pretty big one, with Lynn getting out of the house more, talking more to other people, and it seemed to go well. People have been patient as he struggles to enunciate his words, one syllable at a time. Until his facial muscles get tired, which happens in about a half-hour, he’s pretty clear with most sounds -- he’s just slow.

On Saturday, our family band, the Flapjack Family, played at a fund-raiser for Camp Mather. We hadn’t prepared much, because Lynn was organizer for the gig after the Friends of Camp Mather asked us several months ago to play. It was one of the first things he asked me to deal with from his hospital bed. He was still unable to talk at all, writing on his little white board, and he asked me to call the Friends of Mather and tell them of his setback. Our friend Caroline Grannan, also a Flapjack, agreed to take over the organizing end of the gig, and we just sort of waited to see how Lynn would do. By now he can play the mandolin at about 85% of his previous level, but his speech is still impaired enough that he can’t sing. (We’ve tried the singing, because there is a whole branch of speech therapy based on the idea that some people who can’t talk, can still sing. Apparently the skills use different parts of the brain. But it hasn’t worked that way for Lynn. His singing is about the same as his talking.)

In a normal Flapjacks show, Lynn would probably do lead vocals on two or three songs, so other Flapjacks took on more lead vocals. It was great to get out there, and there was something really wonderful about Lynn sitting there in the middle of the stage, picking away on his mandolin, surrounded by the generations of Flapjacks and Ludlows. Kenny (Ludlow) Flapjack sang three songs. Pauline (Scholten) Flapjack sang a few numbers and did most of the stage patter. George (Martin) Flapjack played banjo and sang a few, Steve (Rubenstein) Flapjack sang a few more. Lynn’s son Paul (Moran) Flapjack played rhythm guitar, I did my normal ineffectual job on the stand-up bass, and our friend Bertie (Yusba) Flapjack schlepped her keyboard over to sit in with us. I won’t say we were great, because we are the Flapjacks, but we had a good time and didn’t embarrass ourselves too badly. We saw a number of old friends there, and Lynn was able to communicate pretty well.

On Sunday, we went to the memorial service for Fran Ortiz, the news photographer and Lynn’s good friend who died February 7. It was very sad, just an amazing empty spot where Fran used to be. It was also, like so many memorials, a gathering of the old tribe -- the Old Examiner people were there in force, and Lynn was able to talk enough and communicate well enough to make himself understood. He was so comfortable that we stayed visiting with former colleagues and friends until we were among the last people there. Lynn’s speech is still very slow and a bit mushy, particularly when he gets tired. But people were very patient, very kind, and I was glad that he was able to see so many old colleagues and friends.

On Friday, when the speech therapist asked Lynn about plans for the weekend, he said a funeral for an old friend, and he said: “It -- never -- oc-curred -- to -- me -- that -- he -- was -- mor-tal.” That sort of sums it up. They worked together for maybe 30 years at the paper and they taught together at San Francisco State. They both loved being newspaper men and teachers. They led sort of parallel lives -- getting married, having kids, getting divorced and remarried, and having more kids sort of late in life. Fran’s youngest son, Michael, had his confirmation just a few years before Kenny’s Bat Mitzvah.

That’s the short version.
Keep the faith
Margo

Here’s the longer version:

Lynn is still struggling with some of the same sounds that he was a week ago: The “k” sound in the middle or at the end of a word. The J sound. Some of the letters that he couldn’t say at all, he’s able to sort of say now: Z is a bit more clear than it was. Some of the blended consonants, like “tr” and “sh” and “bl,” he can say sort of clearly. Some are still outside his range: “fl” and “str.” It’s sort of funny that one of the words he really cannot say is “stroke,” because of the blended consonants at the beginning and the “k” sound at the end. Or maybe it’s because his stroke-damaged brain just will not say it. He also has a terrible time with “Examiner” because of the “x” sound, which is still elusive. So he’s been saying “The Monarch of the Dailies” when he needs to say where he used to work.

He had his first real phone conversation over the weekend. His old friend Dan North called, and I thought: “Why not give it a try?” I stayed on the extension to translate when Lynn was unclear, but Dan could understand most of what Lynn was saying. It was pretty exciting. As you can imagine, it was a long, drawn-out conversation, with Lynn saying one syllable at a time and Dan getting most of it, and filling in the rest with a bit of help from me. But for him to be able to communicate without my intercession is an important step.

On Saturday, while we were waiting for the Flapjacks’ time to play music at the Mather fundraiser, Lynn said he wanted to walk up the street to get a coffee. I thought, again, “Why not?” and off he went. Kenny looked at me and said, “How’s he going to order?” I said: “He’ll say ‘Kof-fee,’ and they’ll understand or they won’t.” I figured he could write it down if he had to, but he says “coffee” pretty clearly. Kenny went running after him to translate for him, but he was out of sight already, and she came back a bit worried. He returned a few minutes later with a coffee for him and a mocha for Kenny, and reported no trouble. Another small triumph.

The next day, at the memorial, I was visiting with Fran’s widow Kathleen, and she was talking about the months and years of health issues when a somewhat younger woman marries an older man. She and Fran had struggled with his health problems for many years, just like Lynn and I are these days.

Later, I looked around the room, full of people who don’t take their health for granted: Gerry and Anna Adams, who have been coping for many years with very difficult health problems, and Larry Hatfield and Georgia Hesse, both cancer survivors, and Bill Boldenweck, whose health problems go back to the Korean War, and so on around the room. It felt to me like we were saying good-bye to one, and looking around at the ones who have been spared for now. It seems pretty arbitrary, really. There’s no real reason that Fran died and Lynn didn’t.

*****
 (The Ludlow technique of using bullets instead of a transition.)

In reconstruction news: I finally finished repairing the cabinet that Lynn damaged the night he was lying paralyzed on the bathroom floor, banging on stuff to try to wake us up. He had rendered a cabinet door into splinters before he realized he was going to have to get out of the bathroom for us to hear him. Anyway, the broken cabinet door has been sitting there since as a reminder of his hour in hell. So, I’ve been slowly rebuilding it. I finally finished last week, and it looks pretty good. The broken cabinet was a weird sort of 1960s dark oak with curved molding, and the rest of the bathroom is painted Victorian beadboard, straight molding, and brass hinges. I made the new cabinet doors from redwood that I had salvaged some years ago from a door in our house. So I was able to reuse wood from the house’s own era, with matching molding, and the cabinet looks like it belongs in there, unlike the previous cabinet. Lynn was joking that I should take the splintered cabinet door down to my shop, because the way I do things, I’ll be reusing that wood in my next project. He’s probably right. Why would I waste good oak?

Anyway, that’s probably enough for now.
Keep the faith.
Margo



Ludlow Update No. 12
Monday, March 5, 2007
Seven weeks after Lynn’s stroke

A note on speech: Judith Brand, a colleague at the Exploratorium, where I do some on-call editing, sent an e-mail that addresses one of our little mysteries. (She stresses that she is not a speech therapist, just an amateur linguist):

“I think I can shed a little light on one of your mysteries: why Lynn
can say a sound at the beginning of a word, say, but not in the middle. I
expect it's because they're not really the same sound and so aren't
articulated in the same way.

“A speech sound that's distinctive in meaning is called a phoneme; /k/
is a phoneme in English. (The slash marks indicate that a sound is being
symbolized, not the letter.) But a phoneme is actually a class of
sounds because a sound is modified by factors such as the sounds that come before and after it. The regularly occurring sounds that make up a
phoneme are called allophones. Consider /k/ in the words "can" and "scan": Put your hand in front of your mouth and say "can," and you'll feel a puff of air--/k/ is said to be aspirated. But say "scan" and you won't
feel the puff of air. Here, /k/ is unaspirated--a different allophone.

“We don't notice the differences among allophones because we never hear them in contrast to each other, so there's no difference in meaning,
which is what we pay attention to. (In the words "can" and "pan," /k/ and
/p/ contrast, and there's a difference in meaning. But the aspirated
and unaspirated /k/ don't contrast -- they're found in different
environments.)”

So there’s an explanation. It's something that hadn't occurred to me -- that the “k” inside a word is actually a different “k” sound from the “k” at the beginning of the word. Judith’s absolutely right about the puff of air -- I did it myself and then Lynn and I did it again. Amazing. The fact that the written letter is the same in the two cases -- and that they seem to sound the same -- makes it hard to conceive that they're a different sound. But they are.

In related speech and spelling news: I've noticed while we work on speech exercises, sometimes the spelling of a word will really mess Lynn up. I can tell he's thinking about all the silent letters in “Wednesday,” and he still can't say it right. He has trouble with words like “scenery,” in which he does seem to be trying to pronounce the silent “c.” He pretty regularly starts saying phone with a “p” sound. The part of his brain that knows the spelling of all these words is fine. And the part of his brain that controls the enunciation is gone. So I think the spelling part of his brain is trying to help out, but it’s getting sabotaged by things like silent letters and letters that look the same but are produced differently.

Lynn has always been a very good speller, and proud of it, so I’m guessing that the spelling part of his brain is well-developed, and maybe more widely distributed in his brain than in the brains of some of us lesser spellers. So Mary C., the speech therapist, set up an exercise to make the spelling part of his brain help him speak, rather than mess him up.

He has a lot of trouble differentiating “s” and “sh.” He can say both sounds more or less OK. But they seem to come up sort of randomly: an “s” can sound like either “s” or “sh,” and “sh” can sound like either “s” or “sh.” So Mary C. wrote the two letters in big block letters and pointed to the one he was supposed to say: She points to “S” and asks him to say “See.” And then she points to “SH” and asks him to say “she.” And then “sin” and “shin,” and so on down a list of 20 or 30 words. He didn’t get them 100%, but he was way, way, way more accurate than he was without the visual cue. We’ve been trying that on some of the other sounds he’s having trouble with, and having some success.

He said his first real “J” sound Wednesday morning. He hadn’t even been close before - - the “j” sounded pretty much the same as a “d.” We were doing some speech exercises and just messing around, trying for about the hundredth time to say the names of some of his friends. And after many repeats of the same mispronunciations, “dim” and “dudy,” he said very clearly “Jim.” And then “Judy.” And then when to we go to Camp Mather? “June.” With a pretty clear “j.” We’re both astonished. High fives all around! We pushed it a little bit, and it was back to “dim” and “dudy.” But I didn’t worry. I know by now that this is how it works: Suddenly he can say a sound. Then he can’t again. He can’t really control it very well at first. But after he says it for the first time, it will come back with more control and increasing clarity over the next few days. And his “j” has done just that  over the past five or six days.

And in our speech therapy session on Friday, Mary C. pointed out that “j” and “ch” are the exact same sound, just one is aspirated and the other isn’t, so as Lynn gets a grip on the “j” sound, the “ch” will come along, too. That leave only a very few letters that he can’t say at all: the “x” sound and still the “k” at the end of the word. Other letters are still problematic: any word with too many “l”s, some of the consonant blends, but Lynn has some control over most of the letters and sounds now. Talking is still very slow and laborious, but he’s coming along. And we still have this thing where a sound that he’s not had trouble with suddenly starts giving him trouble again. We’ve had a few go-rounds with “th,’ I think because “th” can actually be pronounced several ways… “th” in “the” is different than “th” in “thing.” One is aspirated and the other isn’t. And that’s the kind of thing that makes it so Lynn can’t say the sound at all.

In other news, a bit of disharmony at the Ludstadt Speech Rehab Spa: Lynn has always wanted to be heard all the way to the end of whatever he’s saying, even if it’s longer than other people think it should be. I imagine most of his friends can remember a time or two when he kept talking past the point when his listeners were all ears. He probably had a point to make, or a story to finish, or digressions to pull in, or a punch line to get to. All on his own schedule. Whatever. OK. Now remember that time, and try to imagine it with him speaking one syllable at a time, and getting stuck every so often on a word he can’t say. And now imagine the listener is a 16-year-old girl rolling her eyes, just wanting to get away and get back to her iPod or her MySpace. Or the listener is a wife, trying very hard to get everyone out the door on time. Perhaps you can imagine the politesse phrase: “May -- I -- fin-ish -- my -- sen-tence, -- please?” answered with another question: “Could you estimate how long it will take?” Inevitable unhappiness all around, way too much sputtering and shouting before everyone settles down again and tries to live under the same roof.

It is still really hard to communicate, and we are not patient as saints all the time.

That’s the short version.
Keep the faith.
Margo


Here’s the longer version:

We got a call from Lynn’s cardiologist Friday, giving us results from a “stress test” of Lynn’s heart function from a few days before that. It was all good news. Lynn’s heart is healthy, beating well, without signs of further clot formation. While the doctor was on the phone, I asked him about some research I had seen on the Web saying aspirin is as effective as Warfarin in preventing future strokes in some people with atrial fibrillation (which Lynn doesn’t have). I was just wondering if that research is pertinent to Lynn’s situation. The cardiologist, Dr. Zaroff, said he thinks the research is not particularly convincing, and it pertains only to young men with atrial fibrillation, so Lynn misses on two counts. He said to look up “cardioembolic strokes” on the Web for information more pertinent to Lynn’s situation.

So I did, of course, and wow! Is there a bunch of information out there! Cardioembolic strokes, the kind of stroke that we are assuming Lynn had, are caused by an embolus (an abnormal particle, in this case, a clot) from the heart blocking the blood flow to a part of the brain. Apparently they account for about 20% of ischemic strokes (The two main type of strokes are ischemic, or clotting, strokes, and hemorrhagic, or bleeding, strokes). This is from WebMD:

 “In general, cardioembolic strokes have a worse prognosis and produce larger and more disabling strokes than other ischemic stroke subtypes. This general observation is derived from emboli originating in cardiac chambers, which are on average of large size.”

So that’s why various people told us that Lynn’s type of stroke is a bad type to have. And why so many medically knowledgeable people have told us we are really lucky. Also from WebMD, from a listing of distinguishing features of cardioembolic strokes:

“Sudden onset of symptoms and signs that are maximal at onset…

“Rapid recovery from major hemispheric deficits ("spectacular shrinking deficit") due to reperfusion of brain with early lysis of the embolus…’’

Both of those are accurate for Lynn’s stroke. He was fine, and then 10 minutes later he was paralyzed and mute on the floor. He has said that a few minutes before the stroke floored him, his right hand went limp for a few minutes. It was so strange that he didn’t even know what to think about it, so he just finished washing the dishes. Then a few minutes later, he had the stroke, and the hand symptom made more sense. But that was really the only warning. And the “rapid recovery” mentioned there, that cleanly describes Lynn’s regaining use of his paralyzed right side within two days.

With the cardiologist’s specific reference to cardoembolic stroke and the neurologist’s information that Lynn’s stroke was in the MCA area of the brain, it’s been easier to pinpoint information that’s pertinent to Lynn’s stroke. There is just so much information out there…  

*****

A number of people have said that these updates could be the beginnings of a book or some sort of larger work. I have my doubts as to how many people who don’t know Lynn would be interested in the minutiae of his recovery and my thoughts about the whole process. I also wondered how Lynn would feel about his health being discussed more widely. So I told him that a few people have said we should turn this into a book, and asked him what he thought. And he just said he wants George Clooney to play him in the movie.

Furthermore, he said, it’ll only sell if it has a happy ending, so now he sees why I’m working so diligently with him. “Thuh -- mask -- comes -- off.” I’m just in there for the successful ending that will make the saga a best-seller. Hmmm. OK. Better bear down harder or we’ll never get the big bucks.

After the first few people mentioned a book project, I gave it some thought, too, in this regard: Several years ago, I left to care for a family member who had been hospitalized with a psychotic episode. My job was to help her get out of the hospital and get her settled in at home. It was a brutal, grueling two weeks. I wrote updates to a very small group of family members and friends while it was happening. It was a similar form of writing: I kept others informed while I wrote enormously long descriptions to help me process what was happening. After I was back home, reading those updates, I thought that they might be the core of a larger work. But when I put the question to myself, what I really wanted to do was go back to my own life, not delve further into the disease, the family history, the whole catastrophe. I think that may happen here, too. When we are done with this, if we are ever done with this, I may just want to return to our normal life. Which actually was pretty nice.

Or, if my life keeps going like this, I could combine those updates with the Ludlow updates and whatever updates I end up writing in the future, and publish it as the “Memoirs of a Reluctant Caretaker.”

That’s probably enough for now.
Thank you for your prayers and good thoughts.
Keep the faith.
Margo

Ludlow Update No. 13
Monday, March 12, 2007

Today’s reading is from last week’s Torah portion, Ki Tissa, at Exodus, Chapter 33, Verse 21: “And the Lord said (to Moses): ‘See, there is a place near Me. Station yourself on the rock and, as My Presence passes by, I will put you in a cleft of the rock and shield you with My hand until I have passed by. Then I will take My hand away and you will see My back; but My face must not be seen.’ ”

Verse 21 is God’s response to Moses asking to see His face. The response describes the mystery of trying to know anything much larger than ourselves. You can’t look at its face, you can only see its back. When you look directly, it disappears. But maybe when you accept that you’re only able to see it from an angle, and then only see its back, you get what you need.

Speech therapy for Lynn’s apraxia is exactly like this. If there’s a sound that Lynn is struggling with, when we try to approach it directly, more often than not, it makes itself inaccessible. If we wait for it to come, it appears on its own, a true blessing. Sometimes. And sometimes not.

Lynn is still unable to make the “x” sound. And the “k” is problematic. He’s actually got some control over the “k”: He can say it at the beginning of words consistently, and he can sometimes say it in the middle or end of a word. Some vowels nearby mess up the sound -- a long e sound, for instance -- and an “l” anywhere in there makes everything else impossible. So anyway, we were working on words with the “k” sound at the end: I say a word, and then he repeats it: “hack -- hack,” “sack -- sack.” Then I say “tack,” and he says “tax.” Just like that. Oh my god! An “x.” His first. I was so excited, I was almost shouting: “You said an “x!” You said an “x!” He was dumbfounded, of course. So I said, “Say tax.” And he says, “Tass.” Shoot!!! We try again, a half-dozen times, and it has disappeared again. He did say it, though. It’s just a matter of getting control over it.

The “th” sound has also been a huge struggle. It’s actually two different sounds, and aspirated “th,” as in “thing,” and an unaspirated sound as in “those.” I do think the fact that the two sounds are spelled the same but enunciated differently is creating at least part of the difficulty for Lynn. So, warm-ups for speech exercises most days include a recitation of the days of the week. Last Friday, it went like this: “Thursday, Friday, Thaturday.” And we both just exhaled hard in exasperation. The “s” at the beginning of a word has not been a problem. But then, wait a minute: There’s that “th,” which has been a problem. It sounded good in “Thursday,” and just as good in “Thaturday.” Arrgghh!! So he bears down a bit harder and then can say “Saturday” correctly. And we start messing around with the two different “th” sounds, since it appears that he can say at least one of them, at least for the moment.

It does seem like this some days: We just grab what he can do and work with that.

So, here we are eight weeks after the stroke, having met almost two dozen times with the speech therapist, and worked on speech exercises many, many more times at home, and actually having made a lot of progress. Lynn started out unable to make any sound at all. Then he could make sounds like “uh-huh” and “huh-uh,” and the job was to differentiate upward intonation from downward intonation… He progressed to one-syllable sounds that were heading toward meaningful words: “ba-ba-ba,” “ma-ma-ma,” and “pa-pa-pa.” And we were working also with the automatic response-type words: “no,” “hi,” and so forth. And onward to now, with Lynn really communicating pretty well. He talks slowly, but he talks. He no longer carries a whiteboard or a notebook. He relies on his verbal ability, such as it is.

So, anyway, we’ve come a long way, sort of on faith. And the other day, Mary C., the speech therapist, says something like: “There isn’t really a therapy to treat apraxia (the inability to speak, which is Lynn’s main problem). The exercises that you’ve been doing are more for dysarthria (dysfunction in the muscles around the face, which Lynn also has a bit of).” So, we just sit there, waiting for her to explain more. So, what have we been doing here? And why is the speech therapy working at all if it’s not directed at Lynn’s main problem, the apraxia? And she elaborates: For the apraxia, you just have to somehow get a given sound to come out of the mouth, and then work backwards through the muscles and the nerves so the brain can reroute the synapses that control that sound. The part of the brain that would normally control the muscles is not working, so after you make the sound, some mysterious part of you finds other nerves that will do the translating to and from some other part of the brain… As for the initial voicing of the sounds -- there is no direct way to approach it. No one but you can put your tongue in the right spot to make the sound. And you can’t will it to happen. It just happens or it doesn’t.

Like trying to grab the mystery head on. Look away, and you’ll see it. Or maybe its back.

This is very hard to accept intellectually, but in reality we have been working under these rules for eight weeks. We just hadn’t articulated it very well.

Mary C.’s explanation was in answer to a question from us about how to form a specific sound, maybe the “x,” which is sort of an obsession these days, because it has been so elusive. So let’s call it the X-factor. (An aside: I had always thought “The X-Factor” was a reference to God, but Wikipedia tells me that it’s now a reference to a British reality TV show something like American Idol. Hmmm.)

That’s the short version for today.
Keep the faith.
Margo


Here’s the longer version:

Lynn is really talking pretty well now. Most people can understand most of what he says. It’s slow and painstaking, and still pretty much one syllable at a time. But it’s way more fluent than Mary C. ever expected. In her report on him before she went to Hawaii (which would have been about two weeks after Lynn’s stroke), she wrote: “AAC device has not been approached to pt. as it is not appropriate to do.” (This was a report for the speech department at San Francisco State, where we had thought Lynn could get more treatment. That didn’t work out.) So, anyway, I read the report, and of course, I went right to Google about “AAC device.” It stands for augmentative and alternative communication devices, which turn out to be portable equipment like picture boards, letter boards or keyboards that people use when they can’t communicate orally. We’ve asked her more about that since, and she said, yeah, she thought there was a pretty good chance that in the end, he would need an AAC. So she’s pleased. And she’s pretty clear that she doesn’t know why this is working, it just is. She asked me the other day to show her how we do the speech exercises at home, so we did a short demonstration. It can’t have been very informative for her, because I imitate what she does as closely as I can. It may be that I’m more attuned to what Lynn can say and what he can’t because I listen to him many more hours a week than she does, but I have no techniques other than the ones I’ve seen her use.

We’ve been trying to figure out ways to get more speech therapy help, although we’re both very conscious that we don’t really have the time or energy to do more than we’re doing right now. We’re maintaining the intense speech therapy, and slowly working through Lynn’s other health issues, one by one. We finally saw the cardiologist and Lynn had the stress test that he was supposed to have. Next on the agenda is the hearing assessment and getting fitted -- again -- for hearing aids. (Lynn’s hearing impairment is starting to affect the speech therapy, I think.) We’re starting on that this week. When we’re done with that, there is some ongoing dental work that Lynn was in the middle of when the stroke happened, so we need to get that finished. There is also some sort of allergy/congestion issue that needs addressing. So … one thing at a time. And maybe when we’ve worked through those, we can find out more about speech therapy.

Our friend Melba Beals said we should just call Stanford’s speech therapy department and find out who is considered the Bay Area’s top person in treating stroke-related apraxia. We should find that person and pay out of pocket for a one-hour consultation, she said, just to see if there’s anything else we could or should be doing, and what we should be reading, or what is the latest research, the whole nine yards. We both like the idea, we just haven’t been able to move on it. Part of it is just exhaustion, I think, and part of it is that Lynn has really been making remarkable progress. The past few weeks, though, his rate of progress has slowed a lot. That may push us to look for more help.

We had tried to get into the San Francisco State speech therapy department, and Lynn went through their intake assessment with some very young, very earnest students and their faculty advisor. After the assessment, they decided they didn’t have a spot appropriate for him in their program.

But we got the report from SF State, and it really was sort of funny, because the students were so sweet. The report started out by noting that the subject was cooperative throughout the interview, making us wonder about their other subjects. And they actually seemed to be testing him for cognitive damage more than for apraxia or aphasia. Most of the test was for comprehension, and appropriate responses to dialogue: Read this paragraph and answer a few simple questions about it, that sort of thing. The report said that Lynn got all the answers right, except when asked, “What do you do with a razor?” He answered, “Not much.” The students apparently didn’t look at his beard and laugh, they just marked down that he had not answered correctly.

Lynn was a student at State in the 1950s, and he returned there for a 20-year stint as a journalism professor in the ’70s and ’80s. It would have been a sweet sort of homecoming-type thing for him to get speech therapy there after his stroke. But is not in the cards.

A couple people have suggested working with Lynn’s musical ability, because apparently the singing part of the brain is separate from the speech center. A speech therapy technique called “Melodic Intonation Therapy” has been developed around that, and several people have told us about stroke patients who can’t talk, but can still sing. I’ve done a bit of Web research on it, and it looks like it’s mainly useful for people with aphasia, which is a disruption in the whole language center. That’s a much worse situation than Lynn’s apraxia, which is a disorder limited to the speech center.

From the beginning, Lynn had retained his use of language: He could read and write; he just couldn’t speak. On his first day in the hospital, he wrote me a note asking me to bring his book from home. At that point, I couldn’t imagine that he had any use of language at all, so I just assumed it was a comfort item for him -- he always has a book or two or three that he’s reading. So I brought the book from his bedside table at home, and he proceeded to plow right through it and ask for another one. That was one piece of information that made it clear that his language ability hadn’t suffered, just the speech. We are very, very lucky.

Anyway, Melodic Intonation Therapy works, apparently, by involving the right side of the brain, which controls musical ability, in the production of language, normally produced by the left side of the brain.

We’ve been trying some singing in our speech exercises, but Lynn’s language ability in song is about the same as his non-singing language ability. So, we’re just using it as just another way to practice speech, we’re not expecting miracles from it.

This last week, as part of our speech exercises at home, Lynn worked on a song that he used to sing with our family band, the Flapjacks, called “Old Bones.” It’s a beautiful nostalgic song, an old man’s look at his declining physical abilities and shrinking world:

“Old bones, inside an old raincoat,
Old bones, inside of my shoes….”

And later in the song:

“Sometimes, after the whiskey, I fall asleep in my chair.
And I dream that I’m a man, much younger than I am.
I’ll bet you think by now, I wouldn’t care.”

The chorus is life-affirming:

“But I love life, and I’d do it again.
Though I might not be much more than I’ve been…”

Lynn practiced it every day during our speech exercises at home. At the beginning of the week, the words were mushy and pretty much incomprehensible. By Friday’s session with Mary C., most of the words were pretty clear, and I think she could understand the gist of the song.

I get all teary-eyed listening, maybe because of his progress, maybe because the words are pretty much spot on. The song is still a ways from being ready for a performance, but it’s Lynn singing one of his old songs: a bit of what our life used to be, pretty much intact. No longer effortless or taken for granted. But it’s there.

The last verse of  “Old Bones” goes like this:

“Now’s the time for taking it easy,
Now’s the time for taking it slow.
Old bones don’t move so fast
  as they did in the past,
If I have to run, I simply don’t go.”

So we were playing around with the words, and came up with the new Ludlow version:

“Now’s the time for taking it easy,
Now’s the time for taking it slow.
My words don’t come as fast as they did in the past,
If I have to talk, I just let it go.”

On that note, I’ll sign off for today.

As always, thank you for your prayers and good thoughts.
Keep the faith.
Margo

Ludlow Update No. 14
March 22, 2007
Nine and a half weeks since Lynn’s stroke

Well, it sounds like a TB ward over here at the Hampshire Street Spa and Speech Center. Lynn has a cold, I have some serious hay fever-type allergies, and Kenny has some sort of cough or cold. We are all sick, and sick of each other’s hacking and coughing. Our twice-daily speech exercises (when we’re not too fatigued to do them) are interrupted a dozen times by one of us breaking into a rib-rending coughs. If it’s not Lynn wheezing and hacking away into his handkerchief, it’s me clearing the phlegm out of my throat.

Lynn is talking better and better, although it is still quite slow. Friends from Hawaii were in town last week, and they came to visit. Lynn talked up a storm, mostly one syllable at a time, and mostly intelligible. Our friends, Joy and Vickie, said they understood about 90 percent of what he said.  He’s had a number of phone conversations, and that seems to be working out.

Our big focus these days is on the “th” sounds, the “r” at the beginning of a word, and the “x.” The “th” sounds are tricky, sometimes there and sometimes not, sometimes sounding like an “s,” sometimes like a “t.” The “r” sounds like a “w” most of the time, although occasionally it shows up as an “l.” And all of it gets pretty much incomprehensible if he tries to say more than one syllable at a time.

Our speech exercises at home are series of words or sentences that I say, and Lynn repeats, trying to hit the sounds that he’s having trouble with. “Elizabeth is taking a bath” for the “th.” Or for the “x” sound: “Fax me the tax returns.” Our holy grail with the “x” sound is the sentence: “I used to work for the Examiner.” For some reason, saying “Examiner” has been impossible for Lynn. And it comes up all the time, any time anyone asks what Lynn did before he retired, which is about the second question people ask, after asking your name. So when he can say that sentence without bungling “Examiner,” well, that’ll be a great day. It sounded something like “Egg-glob-id-er” for a long time. It’s getting a lot closer now, but it’s still not quite there.

Also in the speech exercises are repetitions of flexing his face muscles, like alternately puckering up and smiling big, to work the muscles that have been injured by the stroke. Part of that exercise is for Lynn to whistle, which he couldn’t do about a week ago. Now he can, and it’s great fun. He has to whistle a tune, and keep whistling until I guess what it is. It’s not hard, of course, since we know all the same old songs… Those are the true dysarthria exercises, which the speech therapist Mary C. has explained a bit better to me. It seems that I had misunderstood her the other day when I thought she said there are no exercises for apraxia (Lynn’s main problem), that we were doing dysarthria exercises.

There are apraxia exercises, and we’ve been doing them -- those are the lists of words that we go over. And over and over and over.

We’re also using a metronome to help him get some rhythm and fluidity back in his speech. We take simple things that he can say easily, like “ma-pa, ma-pa, ma-pa” and turn on the metronome so he says one syllable per beat. And then speed it up. Or give him a harder series of syllables to repeat to the beat of the metronome.

Anyway, as I noted in the last Ludlow Update, Lynn is still improving, although the rate of improvement has slowed a lot. We are working on the same letters and sounds that we were working on a week ago.

Annie Nakao e-mailed from Hawai’i, asking if things were in a “steady state.” That seems like a good description. We’re finding our pace, getting used the routine of twice a week speech therapy, and once or twice a day speech exercises. I’m doing more jobs away from home, usually working 3-4 hours at a time. That seems to be the blocks of time that are available after the speech exercises and the speech therapy, and Kenny’s soccer games, and Jeez!! This must sound familiar to anyone trying to juggle work, kids, family, friends, health matters, exercise, oh! And maybe a bit of a social life.

So… this report got interrupted by several more days of “steady state.” Our colds/coughs/allergies are a bit better. Not much else to report. Lynn has been volunteering as a proofreader at the Lowell High School newspaper. Before the stroke, he had been helping out once in a while as an editor, and he’s still doing some of that. But he doesn’t need to be able to talk to proofread. He says the students are very polite about waiting for his words to come out when he has to say something. He’s clearly very happy to be the one who’s doing the helping -- and working on something where the roadmap is familiar.

That’s the short version, which is the only version today.
Keep the faith.

Margo



Ludlow Update No. 15
April 9, 2007
Almost three months after the stroke

The steady state continues. We’re in a rhythm: I’m going out on jobs, a few hours at a time. Lynn is at his computer terminal starting on the Tardy Times -- the tardiest edition ever!! He hired our young friend Jonah Varon to help him format it for the Web. So this year’s Tardy Times will be in the form a blog and/or Web site. Meanwhile, Kenny goes back and forth from school. Basketball season ended on a Thursday a few weeks ago, and Friday she went to the soccer team practice… That’s where she wants to be: a little bit overscheduled, and getting a good workout every day.

Lynn and I go to see Mary C., the speech therapist at Kaiser, twice a week, on Tuesdays and Fridays. And we work on speech exercises at home at least once a day, every day. We aim for twice a day, but that rarely happens these days. Mary C. has been taping Lynn’s voice and playing the recordings back for him. He says it sounds like the voice of a stranger, and sometimes he just holds his head in his hands. It certainly isn’t what he used to sound like, but I love it. It’s his familiar voice, with a much-reduced cadence and a sort of softness around the hard g’s and k’s. He still has trouble with th’s and r’s and he still gets stuck sometimes, but his speech is really pretty good. We were at Pauline and Rita’s for Easter brunch on Sunday, and I don’t think I had to translate more than a few times in several hours of conversation.

A few days before, he read his share from the Hagada at the Seder. We went to Laura and Joe Gold’s for the first night of Passover, and their family’s Hagada has long readings -- some poetic, some rote, some ritualistic. Lynn held his own, reading when it was his turn. It was really pretty moving. It’s not the kind of stuff he would normally read: The redemption of the Jews from slavery in Egypt, the many rabbis who have commented on it over the centuries, the various questions that we ask and answer every year. He would probably rather be reading a murder mystery. But there he was, using his reconstituted voice, the voice that we will never ever take for granted again, struggling a bit, taking it one syllable at a time, using the sounds and letters that he’s sweated to regain -- every one -- but actually sounding pretty good. Many an eye teared up among our dear friends at the Passover table.

That’s the short version.
Keep the faith.
Margo

Here’s the longer version:

In our speech exercises these days, we’re working on the “y” and the “r” at the beginning of a word, and blended consonants, such as “str” and “ch.” Much of what we work on these days are sounds that we thought we had pretty much nailed down, but then they stop working again. I was asking Mary C. for an explanation, and she said, “Nobody knows.” It’s just part of the mystery of the brain relearning this stuff. I envision parts of Lynn’s brain taking over the function of producing specific sounds, because the part of his brain that used to say that sound is no longer working. Maybe the part of his brain meant to control fine motor skills like tying his shoelaces now has to form the “th” sounds. It finally learns how, and does it for a while, but as soon as we stop focusing on it, the neurons return their attention to cutting up food, picking the tunes out on the mandolin, and the other tasks they are more accustomed to, more comfortable with. And then we ask for a “th” sound, and it’s just not there -- the neurons have to be shaken out of their lethargy, their comfort zone, their tendency to go back to the tasks they are used to. Old dog, new tricks. Except it’s old neuron, new tricks.

Lynn has been making plans for the family’s summer trips. He’s up for the whole nine yards, the whole complex schedule of our usual activities: The Bluegrass Festival in Grass Valley, Camp Mather, and the regular August trip to Anini Campground in Kauai. He’s clearly looking forward to the get-aways -- he’s convinced his older daughter Amy to come along with us to Kauai with her three sons. So that’ll be great fun. I’m a little worried about whether it’ll all be a bit too much, particularly the drive from the Bluegrass Festival to Camp Mather, which is a long, hard slog.

Meanwhile, I’m planning a bicycle trip with my friend Katherine for a few weeks in the summer. The idea is that we’ll celebrate turning 50 by putting a few miles behind us on cycles. We had originally talked about riding across the country, but we’ve scaled back a lot. As of now, our itinerary starts somewhere a few hundred miles north of San Francisco and ends a few hundred miles south of here. So we won’t ever really be out of range. And Kenny will be here with Lynn.

Kenny and I went away to Los Angeles over spring break, just for a few days to take a preliminary look at colleges. She’s a sophomore in high school, so this was just a sneak preview. We had a great time, driving with our friends Beth and Hanna Jones. We saw five colleges in three days, hooked up with our cousin Aviv, stopped by at the hot pink Madonna Inn in San Luis Obispo. Lynn was fine here by himself for a few days. I checked in twice a day, just to hear his voice and make sure he was taking his medications. The whole thing was confidence-building for me, and probably for him too.

I’ve been reading this book by Bob Woodruff and his wife, Lee Woodruff. He was an anchor and TV reporter for ABC News who was severely injured by a roadside bomb in Iraq. He sustained a very similar brain injury to what the stroke did to Lynn’s brain, although he had other injuries as well, much more life-threatening injuries. He was asleep, sort of comatose, for five weeks. So initially, he was much worse off than Lynn. Then he woke up, and could talk in more or less complete sentences almost right away, although he had a lot of trouble finding words. So his speech was not as damaged as Lynn’s was. He didn’t have to start from scratch in the speech department, as Lynn did. The damage in his brain seems to have been more to the language center, and less to the speech center. And the damage wasn’t as extensive as Lynn’s. But his other injuries were horrific. His brain was so swollen that the doctors took off the top of his skull, so his brain could swell and then heal without the pressure from the enclosed skull.

It’s an interesting book, and it’s well written. But I’m having trouble identifying with their family. Not sure why. They realistically describe the difficulties they’re going through, which I totally identify with: the mixed feelings, the anger, the helplessness, the gratitude for being alive, how incredibly difficult it is to just be patient and see how things turn out. But there is also this level at which their lives are very story-bookish. They have four kids, one of whom is deaf, and his life as a reporter and TV anchor kept him away from home a lot -- weeks at a time. And he keeps saying that his family is the most important thing to him, which of course must have become very clear to him after his injury. But before the injury, his job was obviously the most important thing to him: He missed a thousand little milestones in his kids’ lives, and he doesn’t seem to see the contradiction in claiming that his family is his most important thing. And the wife never makes him cop to that.

I think the book’s storyline could have been just as compelling if the injury had helped him evolve into having a greater appreciation of his family, rather than trying to say that from Day One, family was central. I don’t even know if that’s what makes their story sort of irritating to me. Another bit is that money and practicalities don’t ever seem to enter into their thoughts. They fly back and forth from Germany to New York and Washington, and stay in a hotel for months, and keep a rental car for weeks. They fly their children around to see dad for a few minutes. The sort of practical issues that would weigh on most people, and must weigh on most brain-injured veterans, just don’t seem to come up. Without even getting into the medical bills, and the loss of income, you still have: Who’s going to shop for food and cook dinner? Who’s going to take those four kids to their soccer practices and doctors’ appointments?

Their book focuses on their love for each other, and how that heals everything else. I believe as much as anyone else in the redemptive power of love, but damn! Four kids! In a coma for five weeks! Missing a hundred medical appointments with the deaf daughter even before the Iraq war! Getting in the way of a bomb in Iraq when you have four kids at home! Somebody needs to be a bit pissed off. I really don’t think some righteous annoyance would get in the way of being a supportive wife in this case.

Anyway, it’s a fascinating book, and I’m enjoying reading it even though I’m finding it a bit irritating at times.

That’s probably enough for now.
Keep the faith.
Margo



Ludlow Update 16: The lighter side of strokes
April 29, 2007 -- Three and a half moths after the stroke

Lynn is improving enough that he’s been going out on his own and just trusting that people will be patient with his slow and somewhat impaired speech.

He took the ferry last week from San Francisco to Marin County to meet up with his friend Jim McFeely. They were headed for an old friend’s retirement dinner. So, on the ferry, Lynn decides to treat himself to the one drink a day that the doctor allows. He goes to the ferry’s bar and orders a Jack Daniel's on the rocks. Instead of serving him, the bartender starts chatting him up: “Where ya been, buddy?” and Lynn tells him, slowly, carefully, one slightly slurred syllable at a time, about coming downtown to take the ferry over to Marin to meet up with a friend. And the bartender: “Are ya driving, buddy?” And Lynn starts to tell him that his friend will pick him up… And then he realizes that the bartender thinks his slurred speech is because he’s blotto drunk.

So he uses his standard explanation: “I had a stroke in January. That’s why I talk funny.” And the bartender seems to believe him enough to serve him one, and only one, drink. But the story’s been good for a sixpack of laughs.

So… like every catastrophe, this stroke has had its lighter moments. I’ve collected a few:

-------------------

When Lynn had no words at all, and he was still more or less paralyzed, he was clearly trying to tell me something. I thought he was indicating something around his face, some sort of discomfort. I guessed for what seemed like a long time: headache? pain? itching? So he wrote with his left hand, slowly, carefully, on the little whiteboard that we kept at his bedside: KLEEEEEN before I got it. Oh! Kleenex! And without thinking, I blurt out: “Why didn’t you SAY so?”

-------------------

Later, but while Lynn was still in the hospital, there was a days-long drama about passing the swallow evaluation. The stroke had affected the muscles around his throat, and unless you can swallow effectively, there is a danger of choking or aspirating food into your lungs. Until you demonstrate that you can swallow safely, your diet is restricted to pureed food -- like baby food. So several times a day, a nurse came in and evaluated his ability to swallow. And he continued to get very bland pureed stuff instead of food. So he finally passed the swallow test, and the nurse came to announce the results. “The good news is that you can eat food now,” she said. “The bad news is that it’s Kaiser food.” (Drum roll!)

-------------------

And after Lynn came home, we went to see Kenny’s team play basketball. After the game, Kenny was clearly unhappy with her play. We went over to the group of players on the side of the court after the game. And before we could say anything (or in Lynn’s case, not say anything), she said, in a totally disgusted voice, “Don’t even talk to me about it!” And then we all start laughing like hyenas.

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And, of course, I don’t know how many people have asked me if they could please come over to visit Lynn before he got too much language back, because they would cherish a visit in which they could get a word in edgewise.

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As he started to regain some speech, one of Lynn’s first words was “duh.” The night he could first say “duh,” our friend K.C. Jones dropped by to pick up his daughter Hannah, who had been hanging out with Kenny. And K.C. says, “Great, ‘duh.’ Next word to work on is ‘Whatever.’”  …  The same day our friend Kevin was over giving Kenny a guitar lesson. He’s the father of a very strong-willed 5-year-old and 11-year-old who is just coming into the pre-teen sarcastic stage. And he said, “Jeez, with Lynn saying “No!” and “Duh!” your house is going to sound just like my house.”

-----------------------

One of the first days Lynn was home from the hospital was “arena scheduling” day for Kenny. It’s the day that the Lowell High School students all get turned loose in the gymnasium to sign up for next semester’s classes. This semester, she was assigned to the last group. (Last semester, she was in the first group, and still didn’t get the classes she wanted.) So she was stressing a lot about it. She had charted out about a dozen possible schedules, taking into account various sections of her desired classes being full or available. We were talking about how she could call us during the day if she needed moral support. And she started going, “I’ll be calling you and saying, ‘Oh mom, it’s horrible, awful, terrible.’” And I said, “No dear, the worst thing that will happen to you today is unpleasant or maybe just bad. Because ‘horrible, awful, terrible’ is finding yourself alone at 1:30 in the morning on the bathroom floor, mute and paralyzed, unable to call anyone to help you.” So, you know, we all laughed and she was able to relax a bit.

---------------------

So, a bit later in the process of regaining speech, Lynn was talking very slowly, one syllable at a time. It made his listeners lean forward to catch every word, as if every word was some earth-shaking truth. So one day, we went by the house of our friend Jerry Schimmel, who was Lynn’s buddy in high school, and who lives up the hill from us. Jerry wasn’t expecting us, and he came to the door a bit disheveled. I averted my eyes and tried to be polite. Meanwhile, Lynn starts struggling to get some words out and we both lean forward to try to figure out what he’s saying. I have no idea what Jerry was expecting, but something along the lines of, “You’re my oldest friend. Thank you SO MUCH for your kindness over the years” would have been appropriate. So Lynn is slowly enunciating, not very clearly, and I’m guessing one syllable at a time. I start laughing so hard I can’t translate for Jerry, because Lynn is saying: “Your --- fly --- is --- open.”

---------------------

A similar scenario: We were trying to explain to some friends how hard it is to play charades all day long. Lynn’s speech was still at the stage where I had to translate almost every word. So I give my little rap about how if you have language, it doesn’t matter how the information is organized in your brain. You access the information and express it in a form, language, that everyone else gets. If you don’t have language, you have to share with the world how the information is organized in your head. You make associations that you hope the other person also makes. You have a history with the word or phrase or concept that you hope the other person shares… It’s tricky. So Lynn starts with his thoughts on the matter, with me translating every word. “Charades -- is -- hard,” he says, “because -- she-- has -- her -- head --up -- her -- ...” And at this point, I stop translating.

--------------------------

Jerry, Lynn’s old friend from high school, started on a mock novel called “The Ludlow Condition,” sort of a noir novel about a lurking silent character who emerges from the shadows every so often. That’s when I realize that women everywhere can stop looking for the strong, silent type as the population ages, and look for a new kind of man: The strong aphasic type. He’s silent, but not by choice.

Th-th-th-th-that’s all, folks.
Keep the faith.
Margo



Ludlow update No. 17
June 2, 2007
Four and a half months after the stroke

Lynn’s speech continues to improve, although the rate of improvement is so slow now that it’s harder and harder to get motivated to do the necessary speech exercises. We’re supposedly doing them every day, but the truth is we probably only do them every other day or so. He’s able to say virtually all the sounds at some times, and most of the sounds all the time, but there is this odd circular thing happening -- just about every day, there is some sound that he can’t say. Some days it’s the “th” at the end of the word; some days it’s the “l” in the middle of a word; the “r” at the beginning of a word comes and goes… So we have this experience of working on a particular sound, nailing it down pretty well, and he can say it for a while, and then without warning, a week or so later it’s gone again.

The main speech issues, though, are clarity and speed. He can formulate sentences and say anything he wants to say, but as he speaks, there is a constant trade-off between clarity and speed. If he thinks through what he’s going to say first, and talks slowly, it’s all pretty clear and just about anyone can understand him. But that is very slow, and the listener has to be very patient, both in waiting for him to begin, and waiting for him to finish. If he rushes into a thought, and tries to speak at a sort of normal conversation pace, he’s pretty hard to understand.

So, that leads to the main communication issues now, which are patience and interruptions. When Lynn’s talking at the pace he needs to for clarity, there is a pause between almost every word -- and the pause is about the length of the pause that we are culturally conditioned to interpret as meaning “It’s OK for someone to jump in with a comment here.” So, Kenny and I jump in to finish his thought, interpret what he’s saying, or answer what we think he’s going to say, usually before he finishes a sentence. So he feels like he’s being interrupted every time he starts a sentence, because he IS being interrupted every time he starts a sentence. So that’s a huge frustration for him, never being able to actually finish expressing a thought. Even if Kenny or I correctly finish his thought for him, which sometimes happens, he still feels like people aren’t listening to him. And if we incorrectly interpret the direction he was going, which also happens quite a bit, it’s even more frustrating for him.

On the other hand, those of us listening have the feeling that we never get to talk, because Lynn saying a half a sentence will take up the conversational space of several sentences for anyone else. You can imagine the fun we’ve had sorting this out. I am forced to work all the time on patience, patience, patience -- just wait until he’s done with the sentence, even if I’m sure that I know what he’s going to say. The man needs to finish his thought in his own time. Patience has been my life’s work, anyway. I have always had a hard time waiting for others… I’ve set up little mental work-arounds my whole life: always carrying a book or magazine so I don’t get annoyed if I have to wait for something. Doing little exercises to occupy myself when I have to wait a few minutes in line or in traffic. But this whole thing is so in my face, I just have to breath, wait, relax, try to be patient.

And for Lynn, it’s excruciating, you can tell. His whole life is about telling stories, being the guy who knows the funny anecdotes, singing songs and playing the mandolin with his band, chewing the fat for hours with friends over a beer or two. His reading and writing are fine, so in the daytime, while I’m out working and Kenny’s at school, he’s at his computer, e-mailing, writing, reading -- doing fine. And he forgets that he can’t translate that fluency into speech. So I’ll come home and he’ll launch into a story about what he read or found out today, and get balled up immediately, usually stuck on one of the first few words out of his mouth. It’s just hard right now.

In other news, we’ve discovered another oddity, another weird little mystery about speech. When he gets stuck on a word, for instance “finishing,” if he says, “I can’t say ‘finishing’,” then he can say it in that sentence. So, we’re using that as one way to get unstuck now. He’ll just announce that he can’t say whatever word is stopping him, and voila! There it is.

We’re finding other tricks, too, for instance: Breathe! When Lynn gets stuck, sometimes I can see that he’s not really breathing, he’s just trying to force a word out, so I remind him to breathe. And he stops, take a deep breath and then sometimes the word comes out in the more relaxed exhale. Sometimes, and sometimes not. And sometimes he just finds another word that can substitute -- which is not such a chore for a guy with his vocabulary.

Our friends and relatives have been incredibly patient with the pace of speech: Really trying to let Lynn finish his thoughts. Sometimes Lynn even gets impatient with himself, and asks me to tell a story for him -- one of his stories that I’ve heard enough times that I can do a fairly good job on it, or describing something that happened to both of us. So his stories get told, but maybe a bit faster and without exhausting him.

When we end up in larger groups, Lynn is pretty much out of the conversations. The way he describes it is that by the time he’s formulated a sentence to jump in, the conversation has moved on. I think that’s part of it, and that’s clearly a frustration for him. Another part of the problem, I think, is that in larger-group conversations, it’s loud enough that his hearing aid doesn’t help much.

The new hearing aid helps a lot in one-on-one conversations and smaller groups. I thought his hearing impairment was starting to affect the speech therapy, and so we went to Kaiser and paid a big pile of money for a new, improved, advanced, digital, all electronic hearing aid. And it does work a lot better than the last one he had, particularly since he’s managed to not take this one into the shower yet, or run it through the washing machine. He’s clearly hearing better, and there are sounds he can differentiate now that he couldn’t without the hearing aid. (Without the aid, he couldn’t hear the difference between “eke out” and “eat out,” so it was pretty much impossible for him to articulate the difference. Now he can hear the difference, and sometimes articulate them differently.) But it’s still an imperfect system -- when there is a lot of background noise, or many conversations going on at once, he’s lost.

I’m trying to figure out a way to combine some yoga-type breathing and stretching with the speech exercises we do at home. Part of the point is that if he can do some sort of breathing and relaxation, sometimes the words come out more easily. And part of the motivation is that he had not fully recuperated from his hip operation when the stroke happened, so he is very, very stiff at the hip, stiff enough that it is a bit of an ordeal to put on his socks and shoes. So I had been suggesting yoga to improve his flexibility and to help him learn some sort of relaxation and breathing technique. As anyone who knows him can imagine, he thought yoga would not be quite right for him. That’s being too polite. Let’s just say he ridiculed the idea. That may also be a bit too polite.

Anyway, eventually his speech therapist, Mary C., said something about breathing and posture and wouldn’t yoga be a good thing. Now, he worships Mary C., so that changed the landscape of the discussion. So after some negotiations, we settled on a agreement that I would go with him to a yoga class, once a week, until Camp Mather (mid-June) and we’d see if it had helped by then and we’d reassess at that point. A friend of mine recommended a teacher who does a “senior/gentle” yoga class, which we call “yoga for old people.” We’ve been going once a week, trying to work it around my work schedule and his Kaiser schedule.

That’s the short version.
Keep the faith and be well.
Margo Freistadt

Here’s the longer version:

We’ve managed to go to yoga most weeks for the past six weeks or so. The class is very gentle, but also pretty rigorous. There is a lot of stretching, and holding poses that emphasize being conscious of your posture and your breathing. The teacher, Osha, is amazingly patient and helpful -- if you can’t bend over and touch the floor, you can bend over and touch your shins or your knees or your thighs, wherever you start from, she’ll work with you. The other students have been very welcoming and supportive -- refraining from ridiculing either of us, even though there is plenty to ridicule. Most of the students are older -- several are in their 80s, and look extremely healthy and flexible: something to aspire to. At least one other student is recovering from a brain injury. The class seems to function as an informal support group.

So Lynn, the exact opposite of a yoga-kind-of-guy, is giving this a shot. The weight that he’s lost has helped a lot, but it still is not really a great fit. He’s still a gigantic, relatively stiff guy lumbering through these poses that the smaller, slender, flexible people twist into.

And there’s this bit at the beginning of each session, where we close our eyes and do a sort of call-and-response “OM” chant. The teacher does a long “OM” while exhaling, and then the whole class responds with an “OM” that vibrates the room. And I just assumed Lynn was holding back his giggles during that part, waiting for the stretching, the physical-education, physical-therapy part of the class to start. So one day after class, Lynn started telling me how much he enjoyed feeling the vibration in the room from all the other students’ chanting “OM.” I wouldn’t have been any more surprised if he had folded his legs into a pretzel and stood on his head. Lately, he’s been conceding that it may be helping his flexibility a tiny bit.

Yoga and speech exercises sound unrelated, but I think in Lynn’s case, the yoga might help him be a little more conscious of his breath, which can help him get unstuck. Mary C. works with him on his breathing in her speech therapy. So, I’ve been trying to work it into our home speech exercises. A lot of that has to do with inhaling deeply, and working on really differentiating the vowel sounds and articulating them loudly and clearly as you exhale.

And much of the yoga class is not that different from physical therapy, as one of our basketball buddies pointed out. Lots of physical therapy exercises are related to improving posture, balance, range of motion, stretching, strengthening… And that’s pretty much what yoga is about. If Lynn can regain some of the flexibility and strength that he had before his hip operation two years ago, and maybe even improve on that a bit, a hundred little daily things will become less difficult. Things like putting on his shoes and socks, picking up dropped coins, getting in and out of the car, getting things from the lower shelves in the house.

The weight that he’s lost has made even tying to do yoga possible.  He’s continued to slowly lose weight, and has probably lost about 25 pounds over the past six moths. He still big, and in no danger of fading away, but he is significantly thinner. When I hug him now, I can clasp my hands together behind his back. That’s a first. I used to not be able to reach all the way around him.

A variety of factors are involved: 1) He gave up refined sugar a few months before his stroke, and has stuck with that restriction through this whole ordeal. 2) He eats less, and says food doesn’t taste as good. 3) The blood-thinning medication he’s on, Coumadin, has a strict limit of one drink a day. His doctor had restricted him to two beers a day about six or seven years ago, and that was a pretty significant reduction. And now the restriction is one beer a day, he’s pretty good about sticking to that. So the pounds have been slowly coming off. His blood pressure went down -- his doctor said that this is pretty typical: you only have to lose 10-15 pounds for your blood pressure to come down a lot.  So there’s a lot of good news on the physical front.

On the speech therapy front, the slowing down of progress has motivated us to try to find an expert or two to consult with about whether there is anything else we should be doing. We had thought of doing that quite a while ago, but Lynn was progressing pretty well, and we felt like we were doing as much as we could already without becoming totally overwhelmed. We haven’t actually called anyone yet, or made an appointment, but we’ve decided that we’re going to.

We’ve tried some other things, too. At Mary C.’s suggestion, Lynn has gone to a speech therapy group sponsored by City College, which meets at the Stonestown YMCA’s senior center. He went once a week for a month or so, and now they are breaking for the summer. We’re not sure that’s the right speech group for him, because most of the people there have memory problems or word-finding or cognitive problems, and not strictly the apraxia that Lynn has. I feel like in most of these programs, and even with Mary C. at Kaiser, we end up wasting a lot of time on tests to see if Lynn has cognitive damage. The other day, Mary C. pointed to a bunch of things around her office to see if Lynn could quickly find the words for the computer, the monitor, the desk, a bottle of water… Almost the whole intake interview at S.F. State (for the program that he didn’t get into anyway) was a cognitive test. I’m pretty sure that if Lynn had much cognitive damage, I would have noticed by now. His brain is as functional as it ever was. He thinks his reading is 100% of what it ever was, and his writing might be at 90% of his former ability. So he hasn’t lost his language ability, just his ability to speak fluently. And I’m hoping there may be someone or some program out there that would focus on this exact problem, without the detours into cognitive testing. Or maybe just once a week with Mary C. at Kaiser and daily exercises at home should be enough to keep making progress. But it would be nice if an expert could tell us that.

Anyway, that’s probably enough for now.
Keep the faith.
Be well.
Margo


 
Ludlow Update No. 18
July 28, 2007
Six months after the stroke

Bonus feature this update!!
The very, very short version:

Everything’s pretty much all right, pretty much the same. Lynn’s doing fine. We’re chugging along.

Be well.
Margo

A somewhat longer version:

We’ve pretty much taken a vacation from our speech exercises for the past month, and nothing bad has happened. Earlier on, when we stopped focusing on speech exercises, Lynn regressed immediately and severely, and I was afraid that would happen now if we lightened our focus.

But it hasn’t. Starting in mid-June, we went to the bluegrass festival at Grass Valley for a few days of music and camping, and then to Camp Mather for a week of relaxation and music, and then I went on a bike trip for a few weeks of exercise and escape. And here we are, having done no speech exercises at all for more than a month, and Lynn hasn’t regressed much at all. He hasn’t progressed, either, but nothing scary has happened. His speech is pretty much where it was a month ago -- he’s understandable, but it’s slow going.

During the week at Camp Mather, Lynn had people to talk with most of the time, at meals in the dining hall, while sitting around Birch Lake, while hanging out in the afternoons and evenings. It’s a big weeklong family reunion and reunion of old friends from Kenny’s preschool days, so there were probably dozens of people who love Lynn who could hang out and converse with him. Everyone was patient and kind, and he got a lot of talking in -- slow talking, but talking nonetheless. So that was probably way better than any speech exercises would have been anyway.

An aside about slow talking: If you have a minute, go to the Internet and listen to the old Bob and Ray routine “The Slow Talkers of America.” It’s on YouTube and also as a sample at shop.npr.org (search for Bob and Ray Slow Talkers). It’s a hoot and a half, and it gives a bit of the feel of how things are at our house.

During the 15 days I was away on my bicycling trip around California, I had hoped that Kenny would do some speech exercises with Lynn. She’s seen us doing them enough to get the drift -- she’s 16, smart, and fully capable. Lynn took her to one appointment with Mary C., the speech therapist at Kaiser, so she could see the expert at work. But somehow, the speech exercises never happened at home.

I asked Kenny about it, and she said Lynn never asked her. And I asked Lynn about it, and he said, yeah, he never asked her. She’s 16, and would way rather hang out with her friends. And he’s 73, and the speech exercises are hard, not really anyone’s favorite time of the day. So someone has to be the one who says: “It’s time for speech exercises now.” And I guess I was the one who, more often than not, was the one. It seems like Lynn wasn’t able to pick up that bit of the skein. So the whole thing unraveled a bit.

So anyway, the enforcer is back. And we’ll get back on track. Just to break out of character, Lynn was the one the other day who said: “It’s time for speech exercises now.” And we did some speech exercises, in the car coming back from dropping Kenny off for two weeks of sleep-away camp at Camp Jones Gulch. I had to admit that I couldn’t remember any exercises. So, it took a few minutes to get our groove back, but we did, starting with the basics: the breathing exercises, working through the vowels, and then on to some specific sounds that needed work: the “ch,” the long “a,” the “s” sounds in San Francisco, etc.

So, that’s the short version.
Be well,
Margo


The longer version:

Whew!! It’s been a long time since the last update, and I’ll just pick and choose among things to report.

One:
CAT scans. We went to see Dr. Doster, the neurologist at Kaiser, the day before I left on my bike trip. My cycling buddies, Katherine and Carol, had agreed to delay the trip’s start one day so I could go to this appointment with Lynn, and it was a good decision. Dr. Doster showed us the CAT scans of Lynn’s brain, and even more importantly, explained what they showed. She fired up her computer, and explained that the white areas in the brain were dead cells, very damaged tissue, and as she showed us one slice after another of Lynn’s brain, you could see where the damage is. The damage, she said, is very focused, in the precise part of the brain where speech is produced. We again had the odd experience of wowing a doctor. She had studied Lynn’s CAT scans, but hadn’t seen him in months, and obviously had certain expectations of how impaired his speech would be. She asked him to say very, very simple stuff like “No ifs, and or buts,” which Lynn aced, of course. And she just shook her head, with that look that we’ve seen from others, like Mary C., who just can’t believe that someone whose speech center looks like his does, can still speak. So, even though for us, Lynn’s level of function is a frustration and a huge challenge, we have these hints that the same physical damage leaves many other people with a much worse result.

On her computer, the doctor traced for us where the blood vessels are in the brain, and offered a theory as to why Lynn was paralyzed just for a few days, and that problem resolved itself without treatment.  She thinks he had a clot that blocked blood flow to the section of the brain that controls movement on the right side. The clot blocked that vessel for a bit, and then got unstuck, allowing blood flow to resume to that part of the brain, so there wasn’t much permanent damage. He was paralyzed just from the shock to that part of the brain of being for a few minutes without blood. After getting unstuck, the clot moved farther down the blood vessel to the part of the brain that controls speech, and that’s where it stayed long enough to kill the tissue downstream. The CAT scans at S.F. General and Kaiser didn’t show a clot, so the presumption is that the clot, after doing its damage, broke up by itself.

That’s just a little window into how capricious this is. If the clot had stayed a few moments longer in the place where it originally lodged, Lynn would have been paralyzed. And the speech therapy that we’re doing now would be just part of a much larger physical therapy regimen.

Dr. Doster said that, basically, the tissue in the speech center is dead. And the speech that Lynn can acquire now is a function of other parts of his brain learning to take over the job of the dead tissue. So, we’re looking at that same theory we had from the very beginning, that Lynn’s language and speech abilities were already spread out more in his brain than they are in some other people. Or it could be that speech is such an important part of what Lynn is that he just willed other parts of the brain to pitch in more forcefully and more rapidly than most others do. Dr. Doster said, in answer to our questions, that the more we work, the more speech Lynn will regain -- which can go on for months and even years after a stroke. That’s the focus we have to keep, because now the progress is so slow that it’s very hard to motivate ourselves for speech exercises.

Two:
We met, through the speech therapist at Kaiser, another stroke patient with similar speech frustrations to Lynn’s. Her name is Moher Downing, and when we first met her, I thought that she had almost no speech impairment, because her initial social stuff, the “Hello,” “How are you?” and so on is very good, very polished. I was so excited for a few days, because her stroke was about a year and a half ago, and I was thinking: Wow! If we keep working hard, Lynn could be like Moher in another year. But we went to lunch with her a few days later, and when we moved to more extemporaneous conversation, her speech was about the same as Lynn’s, and she had some other problems, too. So I was very disappointed, just for our own prospects. But she was really interesting in a lot of other ways. She was, until her stroke, an AIDS researcher and activist who had started out as an anthropologist. She had her stroke in Tanzania, while on an AIDS project. Even though she was on a team with doctors, they didn’t realize right away that she was having a stroke. When they did realize what was going on, it took two days to get her to a hospital. She had to be airlifted to Nairobi, Kenya. It took several weeks to get her back to the states. She was hospitalized for several months, I think she said. Her story made Lynn’s hour and a half in the bathroom trying to get help seem pretty tame.

And then, about six months after her stroke, her husband died of lung cancer. She seems to be in deep, deep mourning for her husband, of course. She invited us to her home, which is a third-story apartment way up in the Fairmount neighborhood in Glen Park with incredible views of the whole city from every window. She’s on the third floor of the house, but the hill is so steep that her apartment is approached on a level walkway from the next street up the hill. Her apartment is basically a shrine to her late husband, Luis Kemnitzer, including a larger-than-life-size cutout that appears to be a portrait of him, at about age 70 with a full gray beard and a big sculpture of a penis balanced on his bald head. He was an anthropology professor at S.F. State as well as a social activist and honorary Sioux Indian who lived in a commune of anarchists, according to his obit, written by Marianne Costantinou in our very own former newspaper.

We went to lunch at a little place in Glen Park with Moher. Like Lynn, she appears to have no particular cognitive damage, but her speech impairment is similar to Lynn’s, and her speech cadence is a lot like Lynn’s, with the pauses that make me want to jump to finish the sentence for her. She also has some “word finding” problems, which are very common for people with speech impairments. Lynn seems to have been spared, but every medical person we’ve seen has tested Lynn for this. Moher’s manifests itself like this: she’ll be speaking, slowly, like Lynn, and then there’s a word she just can’t find. So she picks up a pen that she keeps at hand, and writes the first letter or two of the word. Then she can say the word or someone at the table can guess it. Talk about mysterious! The part of her brain that can spell knows the word, but the part of her brain that controls speech can’t find it. That was the most bizarre display ever for me. And she did it a dozen times during lunch. Like the speech therapists say, you just figure out compensating strategies that work for you.

At lunch with Moher, we realized that our lives had overlapped in several ways already, before we all ended up with the same speech therapist at Kaiser. Not so unusual for long-time San Franciscans, but still... Her husband, Luis, and she had been at S.F. State during the same years Lynn was teaching there. And Luis had won a Grammy for the liner notes for a huge anthology of American Folk Music, which we have, and Lynn had listened to over the years, and read the liner notes. Luis had been on Alcatraz during the American Indian occupation from 1969 to 1972, which Lynn had covered for the Examiner, so they had probably crossed paths there. Moher and Luis were volunteers at Martin de Porres, where I used to volunteer in the soup kitchen, so we might have run into each other there. And our friend Marianne wrote his obit. Lots of overlap.

So, anyway, Moher was a cautionary tale for us as well. She writes with her left hand, not because the stroke crippled her right hand, but because she fell in the shower at her health club after the stroke and hurt the right arm. She uses a cane for balance, but she wasn’t using it in the shower at the club. Lynn has complained of equilibrium problems since the stroke, and I’ve taken it seriously enough that I put a grab bar in the shower a few months ago. But Moher’s loss of the use of her right hand was vivid enough that Lynn and I both resolved anew to be attentive to his equilibrium issues.

Three:
Yoga and other general health topics. Lynn has decided against continuing the yoga. Our original deal was that he would go to yoga once a week with me until Camp Mather, and then we’d reassess the situation. I think it was helping with his balance and his flexibility. It did seem like it was less of an ordeal to get the shoes and socks on, that sort of thing. But he’s not convinced it helps much, and he really was suffering through the classes. I think it might get easier with time, but he’s not ready to put that much effort into it. So, we’re talking about other sorts of stretching or physical therapies that he can do, walking more at the very least. We’ll see.

He continues to lose weight. He’s lost about 35 pounds since January -- with a combination of factors at work. He calls it the stroke diet, and there are several stroke-related factors helping. He eats more slowly, and says he doesn’t have the appetite that he used to. The blood-thinning medicine has required that he cut his beer consumption down to one a day. He’s been pretty good about that, and that really cuts out some calories. He gave up refined sugar just before the holidays last year, and he’s stuck with that restriction through this whole ordeal, which seems amazing to me… I think if I were having the health problems he is, I’d be self-medicating with chocolate as much as I could.  … He also has been taking a gout-preventing medicine called allopurinol, which has made it so he doesn’t get gout attacks. In the past, when he lost weight, he would get terrible gout attacks as soon as his body started breaking down fat. So, it was really, really unpleasant for him to lose weight. So the allopurinol helps a lot. Anyway, he’s still in no danger of fading away, but he is healthier. His back seems to hurt less, which seems to be a side-effect of losing weight. Hope so.

That’s probably enough for now.
Be well, and keep the faith.
Margo


Ludlow Update No. 19
October 30, 2007
A final word or two -- or three
Nine months after the stroke

So things have been rolling along here at the Hampshire Street Rehab Center and Spa, and our lives have returned to what now passes for normal. We’ve found a steady state that’s workable. It’s very different in some ways from our life before Lynn’s stroke, but it’s sustainable and it’s working for us. I’ve found less to report these days, and I’m thinking it’s about time to wrap up this saga and sign off. Just until the next disaster, OK friends?

Lynn’s speech is still moderately impaired, so it’s pretty clear by now that he probably will never be the man who talks effortlessly in long paragraphs again. He still talks in long paragraphs (He IS still himself) but it is no longer effortless. He has persistently ignored the advice from Mary C., the speech therapist, to simplify his sentences, speak more sparingly, use simpler language. He talks in the same complex, metaphoric, lengthy way he always did, with frequent historical digressions, it’s just that now it takes a lot longer. He sometimes just gives up, but more often, he relies on the patience and goodwill of the people around him. It works. It’s slow and painstaking sometimes, but it’s how we live now. I’m not going to say it’s easy, because it’s not, not for him, and not for me. Both of us lose patience on a regular basis and are less angelic than we could hope for. But we are still very conscious of how lucky we are with this outcome.

The weekend before last was a good example of how Lynn copes with the speech disability. He had been arranging a memorial celebration for a dear old friend who passed away. He did much of the organizing by e-mail and snail mail. He talked on the phone when he had to, but the much of the heavy lifting he did without having to speak a lot.

At the memorial gathering itself, he spoke for a few minutes, and explained about his speech disability, I guess so people wouldn’t think he was drunk so early in the day. (His slurred speech and slowed cadence make him sound a bit like a drunk.) People were patient and kind. The bulk of the speaking he had asked other people to do -- readings, recollections, announcements, etc. In the past, he spoke pretty regularly at gatherings like that -- weddings, memorials, retirement dinners, going-away parties, whatever. But this worked out fine -- the things that needed to be said were said, it was just other people in the speaking roles.

People who see Lynn every week or two tell us that his speech is still improving. Those of us who see him every day are not experiencing it that way. I feel like he’s at a plateau, not improving much, but not regressing either. That’s how he explains it when people ask him how it’s going. Mary C., whom we see every two weeks, is one of the people who says he’s still improving. But I’m afraid I don’t see it.

I think it’ll stay this way unless we make a major commitment to bear down a lot harder on the speech exercises. We have been criminally lame since June. The pattern is circular: Lynn’s improvement slowed a lot, so it became harder to get motivated to do the speech exercises. And as we did less and less of the exercises, his speech improved even more slowly. We do speech exercises once a week or so, if that. During the period when Lynn’s improvement was steady and obvious, we did exercises more like once a day.

It would be sort of leap of faith to bear down and work hard again at the speech exercises. You work and work and work, and you might get better and you might not. What you do know is that if you don’t work at it, you won’t improve much. Anyway, that’s a conversation we have to have: Are we going to just accept this level of speech impairment, or are we going to make some sort of commitment to crank the level of speech exercises back up to once a day for a month or so and see what happens? Or are we going to try something else? Find another expert to advise us? Find another religion to follow, other than worshipping at the feet of Mary C., speech therapist?

That’s the short version for today: We seem to be at a plateau and wondering if we like the plateau enough to just live here.

Keep the faith, and thanks for going on this journey with us. And thanks again for the support of all kinds that we got from all directions when things were really, really hard.
Margo

Here’s the longer version:

Lynn still has trouble with the same old bugaboos: The “k” at the end of word, “l” in the middle of the word. Sometimes he can say “str,” “thr” and those sorts of blended consonants, and sometimes he can’t. A “y” at the beginning of a word is usually a problem. It’s really just a few specific sounds, and they vary on a daily basis, that he has trouble with.

His main issues are clarity and speed. If he talks slowly, one word at a time, the speech is pretty clear, except for a few of the harder sounds. But if he tries to go faster, or if he launches into a sentence without planning, his clarity suffers a lot. If he wants more clarity, he has to go slowly. It’s a trade-off, a frustrating trade-off.

His endurance has increased a lot. At first, if he tried to talk for more than 10 minutes or so, his muscles just stopped cooperating. It’s not like that at all now: He can talk pretty much indefinitely (his friends will remember this), as long as he doesn’t try to go to fast.

His weight loss has leveled off; he has dropped about 35 pounds and seems stable at about 210. He looks healthier than he has in many years. “It’s an illusion,” he says when people tell him how good he looks. Last weekend, for the memorial, he put on the suit he bought for our wedding 19 years ago, and it was loose on him. For a number of years in there, he couldn’t even button that suit up. So he’s lighter than I’ve ever seen him. He still jokes about writing the book, “How to Lose Ugly Fat on the Stroke Diet.” The problem, he says, is trying to figure out how to induce a stroke. His heart doctor told him the other day that he doesn’t want him to lose any more weight. Hmmm…. That’s not something you hear every day.

The weight loss has made his back problems pretty much go away. He had been having back pain that made going for walks longer than a few blocks pretty much impossible. We’ve been walking around the Mission District to test his limits, and the other day we took a walk at Lake Merced, and we haven’t found the distance where his back starts hurting yet. This is good. This is very good. Too bad he had to have a stroke to make this happen, but we’ll take the good where we find it.

We still have in mind that we want to find an expert in apraxia and go have a consultation, but we haven’t done it yet. It’s still on the list.

On the paperwork front, Lynn was without health insurance coverage for about two weeks because of a spectacular mess-up with Kaiser. The whole family had been covered by a COBRA health insurance policy for 18 months after I left the Chronicle. At the end of that time, we were supposed to transfer to individual coverage. Kenny and I did that with a form on the Internet, and the transfer went more or less smoothly. Because Lynn is over 65, and on Medicare, and the form needs to be filled out in triplicate, his transfer couldn’t be done on the Internet. I telephoned for the forms to be mailed to us in August, for an October 1 deadline. The forms didn’t come. I called twice more in September, and the forms still didn’t come. As the deadline approached, I called again, and was told we should go into the Kaiser office and fill out the form. So we did, in the Geary clinic building in San Francisco. The member services woman there was very helpful, gave us the form and double-checked our answers. She faxed it for us, and gave us the fax confirmation form. No problem. So October 1 came and went, and we assumed everything was all right. And then about October 6, we got a letter from Kaiser saying the form we filled out was the wrong form and therefore Lynn was denied coverage. So he had been without health insurance for about six days before we even got the letter. I have no history of cardiac trouble, but if I am ever diagnosed with heart failure, it will have started there.

As you can imagine, I was on the phone faster than the paramedics would have hooked up the defibrillator. Over the next week, I was on the phone for HOURS. Eventually, I found a supervisor who could make decision outside the regulations. This was necessary, because according to the regulations, if the wrong form is filled out, no matter who gave it to you, you are screwed. There are no exceptions. I explained: He is 73 years old. Over the past 15 years, he has had two heart attacks and a stroke. He needs to have health insurance. We were offered coverage for Lynn for $950 a month. That’s when I asked to talk to a supervisor. And the supervisor passed me on to another person whose job it is to fix screw-ups.

Kaiser had in its records the dates that I had called for the forms, and we were able to document that we had faxed the form from the Kaiser office in San Francisco. So, Kaiser accepted responsibility for the mess-up and patched together an interim policy and paid for a month of coverage for Lynn to tide him over to the beginning of November, which is the next entry point for the Medicare coverage to begin. But he was without coverage for about two weeks. So anyway, that’s why I don’t go to scary movies or ride the roller coaster at Santa Cruz. Ordinary life -- just trying to keep our health insurance -- is scary enough.

In other news, over the past month or so, we set Lynn up with a studio at the Hunter’s Point artist colony. He’s found that there are just too many distractions at home. He thinks he’ll make better progress on his book and on our annual holiday letter, the Tardy Times, if he has a place away from home to work. He’s still working on last year’s edition of the Tardy Times, which he had just started on when he had his stroke.

Apparently the studios on the old base at Hunter’s Point are for visual artists only, but the visual artists are allowed to share the rent. And some of them are willing to sublet to writers, because writers are quiet and don’t take up a lot of room. So the office manager out there helped match Lynn up with an artist who needed a writer, and we’ve rented the space. We got Lynn an old computer for the studio, and a new printer, and worked through the inevitable glitches. (Apparently there are two different kinds of USB ports. Who knew??) The current plan is that he’ll keep his work on a little flashdrive that he can plug into the computer at home, and the one at the studio. We moved some of the boxes of his research for his book out there on Thursday. And Friday, he worked out there for maybe four hours, and reported he had made some headway.

So, he’s launching off and doing the things he has to do, returning more or less to our normal life, picking up where he left off before the stroke. The Tardy Times will be the tardiest ever this year, but it’s in the works. I’ve suggested that he cut himself some slack, and call this one a two-year edition. Otherwise, he’ll just have to start on another one as soon as he’s done with this one. He’s mulling that over. His book project, a true crime story about a murder that took place in 1898, has been on hold since the stroke. He’s done probably three years of research, on everything from the effects of arsenic to the treatment of female criminal defendants in the 1890s. As you can imagine, he went on some long digressions in the research -- spent weeks delving into the whole “Bleeding Kansas” story, the immigration of pro- and anti-slavery activists into Kansas and Nebraska in the 1850s. “Bleeding Kansas” was tangentially related to his story because the future murderer, at that time a child, and her family immigrated into Nebraska at that time. Anyway, he had a wonderful time with the research, and now needs to write, and I think we’ve got him a place to settle in.

So, I thought I’d end this saga with a poem that Lynn wrote when he was still much more speech impaired than he is now. Our friend Lisa Petrillo had mailed us a set of those little poetry magnets. Lynn messed around with them for a while and came up with this poem, called “Stoke.” (He made the word for the title by cutting up other magnet-words.)


                 Monument

A flop in the can takes me down
I open my mouth, but no sound
I could be dead -- so surreal!
How come I can see hear and feel
     -- stroke

Dad on his butt -- his anatomy
Is rigid and livid -- not free
My voice is in prison -- no scream
A river of thoughts in a stream
            -- solitary

Absurdly I speak not a word
But rhythms of metal are heard
An angel appears in the night
Comes to me and asks
        Could you write?

             -- s To k E






So, that’s all for now. Look for the Tardy Times to be published, perhaps online, sometime in the not-too-distant future. Look for Lynn’s book sometime before the global warming floods coastal California. Thanks for going on this journey with us; thanks for endless support and help.

Keep the faith.
Margo