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Friday, April 30, 2004

Friday quickie

I had a bit of trouble getting the computer to work, and that kept me from posting for a while. Linda figured it out--bad cable. It always ends up being something like that.

This morning Linda rode the air bike for 15 minutes and logged over 1.3 miles. Thought you would want to know. It's really cool when you start measuring in miles again.

Thursday, April 29, 2004

i never know what to say. after five books. you would think that i always know what to say, but i don't. today i got up by myself from the mat, i walked a llittle bit, and don is playing on the computer beside me. that's all.


Monday, April 26, 2004

hi guys. what's up? i'll just walk away from all this.

Sunday, April 25, 2004

Brain lessons

It's been a while since it occurred now, but I know lots of people are still interested in what caused Linda's stroke. I am far from a brain expert, but I can explain it as I understand it from the summaries I got from doctors. First it helps to understand something about how blood gets into the brain. Like all parts of the body, arteries bring oxygenated blood from the heart and veins bring blood back. In diagrams of the body, you'll often see arteries in red and veins in blue. The following diagram (stolen shamelessly from the internet) shows arteries only, but it has the detail needed to understand Linda's stroke.

Diagram of arteries

My apologies in advance to anyone who really knows how this stuff works.

Most everyone is familiar that the large arteries on each side of your neck are the carotids. More important to Linda's stroke are the smaller ones in the back that run up each side of the neck vertebra. They are called the vertebral arteries. Notice that they join together at the base of the scull to form a singular artery called the basilar artery. This artery forms the primary blood supply for the part of the brain that was damaged in Linda's stroke, the Pons.

The following image is one of Linda's actual MRI films. You'll notice that the carotids show up very prominently, and behind them the vertebral arteries can be identified, joining to form the single basilar artery.

MRI of vessels

What is significant about the film is that the basilar artery just stops. There are not left and right branches extending up from it as you would expect after seeing the diagram above. As it was explained to me, an MRI shows flowing blood. If there isn't a flow, there isn't an image. So you don't see a clot as such in an MRI, but you detect its presence by the lack of flow where you expected to find it. Linda apparently had a clot in her basilar artery which interrupted the flow of blood to both the left and right side of her brain.

In the very plain words the neurologist used only minutes after seeing Linda, "This is bad." These kinds of strokes kill people. Obviously that didn't happen this time, although it has left us with a lot to recover from. Interestingly, the anatomy of the brain provides a mechanism for adapting to the clot. In the diagram, just above where the basilar artery branches, you'll notice that lots of arteries join together in a kind of circuit. This is referred to as the circle of Willis.

In a healthy brain, the typical blood flow would be up the basilar artery to the left and right branches and back through veins (not drawn) with some "leakage" into this circle. With the basilar blocked, you can expect these leaks to reverse direction and blood to arrive in the Pons from the circle instead. Now, you'll notice on the diagram that these vessels are drawn pretty small. This isn't the ideal way to get blood, but it can apparently keep you alive if you are lucky. Over time, the vessels can dilate and provide more blood, but it isn't immediate, and in the meantime brain tissue is going to be damaged and die. As we understand it, brain tissue does not regenerate. You have to learn to get by with what is left, and that is what rehabilitation is for. You retrain other (nearby) tissue to take over tasks that used to be done by the parts that were lost.

And of course our rehabilitation is going very well, which, in the end, is probably more important than exactly what caused the stroke.

Saturday, April 24, 2004


Apparently on Thursday, Linda told the PT that she liked having one of the days of the weekend off from therapy. According to her, he said he would see what he could do, and perhaps he did, because we had today free. It's a funny thing, because we did several things that were really therapy things. I guess the therapy things you do to yourself are better than the ones that someone plans for you.

We started on the computer, and Linda sent her second email. She is getting faster on the keyboard even though we have done hardly any practicing.

I also agreed to spend time this morning just working on standing up. She has been frustrated by her right foot, which hurts quite often. The cause is almost certainly putting weight on the outside part of the foot instead of spreading it across her sole. So we sat on the mat, and stood up over and over, working on different things. We worked on foot placement, weight distribution between her two feet, leaning forward enough before pushing up, etc. We did sitting too, since you need to do that before you can stand up again. Lyndsay will be really pleased with Linda's sitting when we finally get to that in OT (assuming Linda does it the way she is supposed to--she still gets lazy sometimes). Later in the day, Linda mentioned that the standing practice helped.

And just because that is not enough, we did electrical stim on Linda's left arm. We had gotten cleared to do it by Lyndsay as long as someone was around to supervise, and Molly was in the gym today. Linda has found that really helpful before, so it was nice we found time to work it in.

There was a new first today, Linda's first McDonald's. Mary and Phil brought Ellie and we all went. The food wasn't actually all that hot, but we enjoyed it anyway. Linda can eat fries on her own, with ketchup even. I helped her with her burger. For a while I was helping Ellie and Linda and eating my own food. I sort of wished I could have another hand on my body somewhere.

We followed that by a trip to the store to pick up a few things. Linda didn't really enjoy that so much. Different people like to look at different things in the store, and they pause for different amounts of time in different places. Since I was responsible for getting her around, we naturally paused longer at things I would look at than things she would, even though I tried to avoid doing that. So she was kind of bored.

This evening we played Trivial Pursuit (genus IV--our favorite). We did it for fun, but don't be confused about one aspect of the game. It's therapy. She had to roll the die, hold the cards and read them out loud. It is an OT and ST activity wrapped together. We didn't finish, and I was a bit ahead, but that doesn't really mean much. Linda and I almost always finish nearly simultaneously, fighting it out for the center, even when one gets an early lead.

One funny thing happened tonight. I mentioned that Linda often cries at things that aren't (very) sad and laughs and things that aren't all that funny. It's called labile emotion. She had some labile crying in the gym this morning when we were working. Tonight when we were playing, she had a bunch of labile laughing. It's hard for her to roll the die in the game, and it often ends up on the floor. After a while she would start laughing every time she dropped the die, more than reasonable (even though it was kind of funny). When it happens, it's kind of like being at a slumber party where everyone gets the giggles. I start laughing and she laughs even more.

As far as labile emotion goes, the laughing is really the better part. Linda says it is all horrible, and I suppose it is. Any time your body expresses emotion that you don't really feel, that has to be not nice. But I don't mind the laughing. I don't mind the crying either, but the laughing is certainly more fun and upsets people less.

I also understand now why Linda used to laugh every time I kissed her. I can't tell you how many times she spit on me that way.
From somewhere behind me a weak voices rises up, "Coffee!"

I was going post something, but Linda wants to work out. Sorry. Talk to you later.

Thursday, April 22, 2004

Fight night

You probably didn't know, but Thursday night we always have a fight. There are several reasons for it. One reason is that we're both tired. The staff does case conferences on Thursday, so her therapists always have lots of new ideas to try on Thursday. Today Linda tried walking sideways and backwards, for example. She said both were disappointing failures. I'm always coming back from Kirksville, so I am tired also.

Many of Linda's problems today revolved around speech. She said no one understands her when I am not around to interpret, and she can't always get what she needs. For example, her dinner came tonight without a drink and she couldn't ask for them to bring up a Mountain Dew from the fountain. She said her nurse was Asian (i.e. accent was also an issue) and it wasn't even worth the effort of trying. One of the other nurses grabbed a drink from our room. They should not have had to do that. Linda's meals are provided. I suppose I'll steal my drink tomorrow to create parity. The fountain is sort of on an honor system, but I have always honored it.

She also had a lot of labile crying today, i.e. crying at nothing. Unfortunately, her therapists and nurses generally misunderstood it, so she had to endure a lot of comforting that she didn't need. She cried at the same time she dropped her sandwich, so that must of been it. Then one of the other patients said something, so that must of been it (Linda says she didn't even hear what was said). Thank goodness one of the evening nurses, Denise, came in and fed Linda her dinner. I think they might still be in the meal room trying to comfort her otherwise.

It's too bad that a day of being comforted for feelings you don't have is really something that will make you cry.

And we always have to fight about when we are going home. Every time Linda has a release date, she decides that it will be her final going home date, and they choose the dates on Thursdays so it is relevant all over again every week. I want to wait and see how we feel when it gets closer. Her original date was Apr 15th, but she clearly isn't ready to go home even now. Then it was Apr 29, and now May 19. She insists that she will have the skills she needs in 4 weeks (although she insisted about the other dates too), and I always tell her that I'd like to wait and see how they are shaping up when we get there. The more skills she has before she leaves, the less care she's going to need later.

I don't know how she baits me into these dumb fights. It doesn't make sense worrying about it now anyway; there are plenty of things to work on and spend energy on. It's like fighting about whether you are going to have a fight in 4 weeks.
Since I am in a quizzing mood: Last night I put Linda to bed (on her side) at 10pm and went to grade. She can roll onto her back on her own, so she does that when she feels like it. When I came back at 12:15am she was "trussed up" in pillows. Still on her left side, there was a pillow-wedge propped behind her back, she had a pillow between her knees, and she was hugging another pillow between her arms. She did not choose to be this way. How did this happen?

I know I haven't posted an update for a while. After Monday, things have quieted down some, so there seemed less to say.

On Tuesday, we went to see a neural ophthalmologist to see about Linda's double vision. It was in many respects very much like any other eye visit. As far as eye function, her eyes had no physical damage (caused by brain swelling for example) and her glasses are the correct prescription for her. To help with her double vision, they prescribed a prism that glues to the lens of her glasses and shifts the image for one eye.

With the prism, Linda can see one image again, at least sometimes. Her eyes still have some tracking problems, so when she looks in a new direction it takes a minute for the images to reconverge. She says that it is very annoying, and she prefers to just continue patching one eye. It does seem that her tracking gets faster as she wears the prism, but I don't have any real way to measure it to be sure. She describes the world as "too 3D." I told her that that didn't sound wrong to me. She has been looking at the world in 2D for two months. Getting back to 3D might be as noticeably different after as going to a 3D movie is. Sometime I'll try to do a "Linda vision mockup" in the gimp so you can see what it looks like. It won't reproduce that sick-to-your-stomach feel, but maybe you'll get the idea.

One of the best parts of the trip was the van ride to the hospital. Last time we went for something, Linda had to go on a gurney. This time she was in her wheel chair. On the way she commented, "It... is... nice... to... look... out." We talked about how we had just been using the new letter board during our last trip and how we had forgotten it and been unable to communicate. That was only 6 weeks ago. Linda said, "Now... I... am... walking. Cool."

The eye doctor had requested Linda's CT scans and such as related to her diagnosis (which he never actually used). So we retrieved them from Boone, and they came on a CD. You'll know I was annoyed to find that you have to use a viewer program that comes on the disk--a Windows application. Luckily it runs great under Linux using the Windows emulator. Sometime I'll post a little lesson with pictures about the circle of Willis and the basilar and vertebral arteries, at least as I understand them.

Finally, a quiz question. What is the most dangerous activity most people engage in? If you are a neurologist, you're not allowed to answer.

Monday, April 19, 2004

Things to be proud of

Today was quite a day of rehab. Linda was busy basically from 8:00am to 2:00pm with meals or therapies. Tonight she said she was proud of several of her accomplishments. She has never said that about anything before.

This morning, her task in OT was to sort dominoes. Three sets of colored dominoes were placed on a table and mixed together. All she had to do was separate them into three colored piles. She did exactly the same task last Tuesday in 8 minutes and 23 seconds. This morning, her time was a blazing 5 minutes and 20 seconds. The OT said she had expected Linda to improve, probably by about a minute. I think that puts her actual time this morning well into the "impressive range."

In her afternoon OT session, Linda did a kneeling exercise. They have her kneel against a really large mat and then lift one leg up onto the foot. It looks something like the bended-knee wedding proposal posture. She has done it once before, and it is very hard. It generally requires 3 people to get her into that posture, and it stretches all kinds of muscle groups. Last time she did it, it was so difficult that when she came out of it her muscles completely spasmed. We didn't even try the other knee. Today she did it successfully on both sides, about 10 minutes on each side. No cramping.

The real triumphs of the day came in PT, however. She walked between the parallel bars again this morning. This afternoon, since her mother was here, the PT moved her 3:00 session to 1:30 so Marilyn could watch. Linda began with a demo run of the parallel bars, because that is a good show. Then she switched to her platform walker, which is more difficult. She was doing really well for about 30 feet, needing very little assistance. As a jest, I said, "I'll give you 5 dollars if you walk all the way back to our room." Since my money is her money it isn't much of an offer.

She did it. Linda walked with the platform walker and some assistance 178 feet from the gym to the door of our room. It was tough, her legs were shaking, and she was sweating. People were turning to watch and sort of quietly cheering. It was something to be proud of.

Since our therapies ended at 2:00 we went out. I needed to get some records from Boone for her appointment with the eye doctor tomorrow and she came along. She was still hot from working so hard, so I turned the vents of the car air conditioner on her (something she usually dislikes because it is too cold). We talked a bit, which should tell you how her speech is improving. The car is a hard talking environment because I can't look at her lips, and there is a lot of background noise. I said that she had been working pretty hard in that walker, and she replied in the sort of broken speech that she uses right now, "It; is; a good thing; I; am; wearing; deodorant!"

We visited with a few people at Boone that didn't see her when we went a few weeks ago then grabbed some coffee in the lobby and some Dairy Queen drive-through on the way back. Our preferred DQ treat is the mocha chip blizzard. We parked ourselves in the meal room a bit early and had ice cream and coffee before dinner.

During dinner, one of the other PTs came into the meal room for something in the cabinets. Bonnie said about Linda's walking, "She must have thought she was headed for the door." Linda said, "More; like; the; bathroom!"

Linda is resting at the moment. We might do something passive tonight like watch a movie, or maybe it'll just be early bed. She said reading Harry Potter would be too much work today (because she still has to turn pages and that means moving).

Sunday, April 18, 2004

Another big day of visiting.

Two new skills to report. First, Linda can roll her tongue again. Second, after dinner tonight, we worked again on rolling over. Linda successfully rolled from her back to her right side twice without assistance. She can't quite roll to her left, and she probably can't do either in an actual bed yet, but it's a start.

Saturday, April 17, 2004

Date change

Not too much to report. We had an exhausting day of visiting today. I forgot to post before, but Linda's date did actually get changed this week. We just didn't know yet. It was extended by 3 more weeks to May 19.

In case you forgot, this is a good thing. They will extend her if they feel she is continuing to benefit and be rehabilitated.

Friday, April 16, 2004

Friday night

What's new today? Well, first I got to see Linda work with the parallel bars myself this morning. She had an OT session this morning where she worked on pulling herself from sitting to standing, using the bar in front of her. She also did a good bit of just standing behind the bar with a mirror in front of her so she could check her posture. The OT had her remove one hand from the bar at a time and touch her ear, and her balance remained good. She can even remove both hands from the bar and balance for a bit before she teeters over backward (don't worry, we never let her do that).

After 30 minutes of that, we had our morning PT session. Yesterday went so well that they wanted to demo for me. So we wheeled between the bars and helped Linda stand between them. I can report that she really does do the walking without support, and with minimal assistance at all. The process is ordered like this. First slide both hands forward on the bars, so you are leaning forward (making sure your hips come forward too, so your butt isn't sticking out backward). Then shift weight onto one leg. This is often over-exaggerated for the purpose of learning. Bend the opposite knee and lift the foot forward. Then start over and use the other leg.

I can't tell you how amazing it was to watch that. There she was, my slender little wife, dressed in a bright yellow T-shirt and blue jeans. But her back was straight and tall, and she was gripping the bars firmly and concentrating and just doing it. I can't really describe it except to say that she looked strong. You'd almost think she has a spinal column made from steel cable. I've not seen many things in life so simply inspiring. Someone should write a documentary about her.

She ate her first Doritoes today. I couldn't believe it when the speech therapist said we could try it at lunch. I couldn't believe it again at lunch when she was actually eating them successfully. This afternoon was more what I had actually expected. We grabbed another bag from the vending machine, but they made her cough so we put them away. Maybe she was just tired. We can try again another time.

She was a bit down at dinner tonight. I noticed, but I thought maybe she was just tired. Later she finally admitted that she was down, about walking ironically. This afternoon, she got her first walker. It's just like the walker you would expect to see an older person use, except it has platforms for her to rest her forearms on. I think perhaps they were adjusted a little low for her. In any event, it's different than the parallel bars; easier and harder both. Linda found it pretty hard this afternoon, but I don't think she gives herself credit for how tired she was. I reminded her how well this morning went and I believe it cheered her up. Her PT works this weekend, so maybe she'll get to enjoy a bit more success tomorrow. I'm sure they'll work on it.

It's funny how one little hard spot is what you focus on even in the middle of enormous success.

Thursday, April 15, 2004

Prepare to be amazed

Yesterday, Linda pulled herself up in the standing frame from sitting to standing. She can't quite get up without using her arms to pull, but even that is still really something.

Today, Linda stood unsupported between the parallel bars for 4 minutes. Then she walked, without support, between the parallel bars. No one helped her push her feet forward or place them ahead her. She reports that she walked the length of the bars this way, about 15 feet.

She is also making progress dressing. This morning, the OT put Linda's shirt over her head this morning and she got her arms in on her own. She can also lift her jeans up to her hips. She brushed her hair some, and her teeth some, both without support on her elbow.

She's still feeding herself some unassisted. She says it is very tiring, but she also likes feeling a little more independent.

She worked on the "scoot transfer" yesterday again. It is going very nicely. She only needed minimal help to get through it, and we've been encouraged to try and use it where that makes sense so she can get better.

They also kept Linda's release date on Apr 29th, although those things are always subject to change as long as you are continuing to improve.

Finally, Linda typed her first email today. It was two sentences long, and took a lot of work. If you didn't get an email from her, just know that you are not the person she would choose to send her first email to.

Wednesday, April 14, 2004

Some weeks are harder than others

I can tell as the week wears on that I am getting tired. Lots of things are getting under my skin. I already told you about Linda's back pain not getting reported to the doctors because I was in Kirksville. I was there this morning so I reported it myself, but the doctors weren't finished with rounds when the med nurse came at breakfast, so she couldn't get Linda's ibuprofin (to her infinite credit, she ran them down and got them to sign the order after I mentioned it). I think I'm going to have to coach Linda on sticking up for herself. A day and a half is long enough to hurt before you start complaining to everyone. We also got a spinal X-ray out of the deal just to make sure nothing serious is wrong.

She told me last night that they dumped out her coffee when they cleaned the fridge. They did. Maybe it didn't have her name on it, but I had something tossed too, and I know it was labeled. I think she was a bit disappointed that I hadn't brought another back with me. I'll get her some tomorrow.

Today she told me that they don't feed her all of her meals when I am not there. I got to see an example of that this morning, because I left to take my shower during breakfast. I was just finishing up when breakfast group ended, and they brought her back to the room. I asked her if she had eaten everything, and she told me no. They hadn't offered it to her (obviously she needs to complain louder). I asked if she, at least, had drunk all of her fluids, since the doctors are particular about her drinking enough. Her orange juice hadn't even been opened. So I went back to the meal room and retrieved it from the cart. Apparently the same kind of thing happens a lot when I am not there. If she isn't done when the time ends, things just stop anyway.

It is still hard for Linda to ask for things. Even though her language is good, people still don't get it when she asks for something without context. She's often a bit slow, because it takes some effort, and people don't always hang around to see if she needs anything. I think I need to explain to her the principle of assertively pressing the call light until they figure out that you need something. It's been kind of bothering me since I found this 4ft tall SMILE poster in the work room. SMILE is an acronym that lays out the room protocol. I don't remember what the letters actually stand for, but I remember the M stands for announcing yourself by name (making your Mark). The last part is essentially, "Do you need anything else?" before you leave.

Oh, how much simpler life might have been if more people had asked that question back when Linda had a harder time communicating. It's no wonder she wanted me to spend nights at Rusk. Nurses would ask, "Are you wet?" but not, "Do you have to go to the bathroom?" Guess who was wet 20 minutes later? It's better now, but I still dread getting a new night nurse who hasn't worked with us. Just this week we somehow regressed to the, "Are you wet?" stage. And I'm over on my cot prompting, "Do you need to go to the bathroom? Did you kick the light by mistake? Do you need anything else?" Maybe if I wasn't tired it wouldn't be so annoying.

Since I am all complaints, I thought I would add that tonight one of my cats pooped diarrhea on my bed, so I am washing all of my bedding in addition to my clothes. Like I needed that hassle. She (the cat) does it to express discontent. Perhaps you'll be appalled to learn that when we were at the hospital and thought Linda was going to die, I realized I would be able to put the cats down. They are the single thing that most makes me desire to be a gun owner. I'm always held back by the need to store and secure a weapon, and I don't want that trouble, so they live. I bet Jen Creer will be glad she adopted Boone when she reads this.

There was a big revelation today. Several times when I asked Linda about why she was crying, she would tell me, "It's just part of the stroke." That's really common with strokes, and I knew that, but I can honestly say I didn't really get it until today. Lately she has told me that people misunderstand her a lot, including me. The crying was one of those things. She had had a crying spell just before our morning OT session, and Lyndsay came in on the end of it. She had some information about the crying, including what it is called (although that escapes me at the moment).

The summary is that she will often cry when she isn't really upset. She described it as kind of like being pregnant again. The important thing to understand is that it's really more physical than emotional. It turns out that she laughs a lot in the same way, but that usually isn't quite as embarrassing as the crying. So we are developing a protocol, starting with, "Are you sad?" Because if she isn't really sad, we should work on stopping the tears, not comfort (which is just annoying). The system for stopping the tears consists of interrupting the physical pattern of crying: breathing slowly and deeply, relaxing her forehead, etc. It's likely to get easier with practice, particularly now that we understand it better.

Tuesday, April 13, 2004


I came to Kirksville today for class. They got a test, which I'm sure thrilled them. I don't think it was too hard, so maybe it really did.

My back is feeling better today. Taking yesterday off from lifting was very helpful. Getting back to my office helped too. Just going through my old patterns; sitting at my desk, walking to the mail room, etc. I just got more relaxed. Which is not to say I am perfect, but I'm definitely getting better.

I forgot to mention that on Sunday evening I let Linda use a straw. It was somewhat "against the rules" since she isn't really cleared to use a straw with thin liquids, except for small experiments with the speech therapist. I told Linda that the rules didn't apply at Pizza Hut, but that if she coughed I was going to take her straw away from her. Tori is always saying', "Be careful!" She did great. She said she didn't even have to think about it, it just worked.

Her speech keeps getting better. Yesterday she started making good S sounds. Tonight when I got back, she told me about her day without the spelling board. I still had to have her spell some hard words orally. She reported that she fed herself today, about half of one of her meals and without anyone supporting her elbow. That is very good.

She also told me that she did her first sliding transfer. I didn't see it, but I gather that she was able to use her arms and legs to slide from the mat to the wheelchair (or vice versa) pretty much on her own. I'm pretty surprised, and she reported that Fred was also very pleased (and I think that pleased her in turn).

Linda's back still hurts today. Apparently the doctors never got word of it. I didn't see them, since I left early. I told the nurse, who said she would leave a note for them. Unfortunately if I'm not around to tell the doctors things, they have a tendency not to find out, and they don't really take the time to ask Linda things that don't have easy yes/no answers (they forgot to ask her today if she was having pain unfortunately). It takes too long to figure out what she is saying.

Monday, April 12, 2004


Last night we went to Pizza Hut. We had a good time. The biggest event of the evening was going to the bathroom. The door of the bathroom is too small for a wheelchair, so I had to carry Linda in. There's one restaurant in town we won't be going back to. It wasn't really a big deal, and we laughed a good bit, but when you can choose, you choose places that accomodate you.

There were two big events today, one for me and one for Linda. For me, at 5am this morning I hurt my backing helping Linda into bed from her wheelchair. The transfer wasn't particularly difficult, but when we finished all of the muscles around my sacrum just sort of squeezed tight and stayed that way. I've been trying to take care not to hurt myself, doing a bit of stretching and making sure to use good form for transfers. It got me anyway. It was possibly the most painful my back has ever been. I felt elderly, not able to sit down or get up once sitting. The absolute hardest was getting in and out of the car.

So I took the day off from transfers and had the staff do all of them today. I've just treated myself gingerly, stretching some and trying to gently move and limber up. And ibuprofin. Tonight I seem to be getting better, and I hope that the worst has passed.

Linda's big thing today was using the computer in OT. They have a Windows computer in the gym for people to work on mousing and keyboard skills, find apartments (for going home), etc. Naturally, it has viruses at the moment and is broken. So I brought my Linux laptop down and we plugged it into the network port. I saved the first thing Linda has typed since February:


lliinxcdda xzsays di
hik. ellie is ere here. sorryaboou thre mistafkeds. but thid iethe firfst timr
ei've typed. i havee nothing to sayyy. lidsa ysau s hi too...... iliiiiiiikkkkkkkke theeee boooooooooooooooootherrrrrrrrrrrrr llllllllllllehhhhhhhhh ilike theeeeee ogtttttthhhhhhhhff fffffffffff v

i like the other keybiard bedddddtter. ilike the exercise.

wr emeber the finger stuff. walking \]][ and eating,. walkingg c

You can see that she started with her name (Linda says hi). We told her not to worry too much about mistakes, and to type anything she wanted. We also tried two keyboards, the laptop and a regular keyboard. The repeat was more of a problem with the regular keyboard, which has more "travel" in the keys, and eventually I turned repeat off altogether. That helped a lot. Some of the last things are responses to questions. She likes the exercise of trying to reach the [Backspace] key on the top line, she prefers the laptop keyboard, her hardest exercise was a finger exercise in OT, and her most memorable moments have been walking and eating.

Sunday, April 11, 2004

Lent never really ends when you are in rehab.

Saturday, April 10, 2004

Saturday morning

Linda is desperate for you to know about her afternoon PT session yesterday. They had planned on doing the Light-gait machine, but on a whim, they decided to do some assisted walking instead. What that means is Fred had her stand up, put her arms on his shoulders, and take some steps while he kept her balance. If you want to know what this looks like, think junior high dance. They went about 12 feet, farther than they intended really.

Since it went so well, they sat on the mat to rest and did it again. The second try was about 15 feet and her steps were slightly better. That is, her form and technique improved. For the third effort, they decided to go as far as she could handle, and I followed with the wheelchair so she could stop wherever she got tired. Well, they went about 40 feet, and really she just got better and better. So, it was very encouraging.

We've been trying to focus on "going home" skills, even though that must still be several weeks off. Obviously, walking is a going home skill, as is almost everything. This morning, Linda and I worked on rolling over. One of the PT students remarked that there are about a billion ways to do this, and no two people really do it the same. In fact the same person doesn't always do it the same way either. So we just parked ourselves on a mat, with Linda on her back, and she gave it her best try.

It wasn't perfectly successful, but I think it went pretty well. Linda can't quite roll from her back to her side without help, but she is very close. I expect all the struggling this morning built some new muscles, so next time will probably be even better. She did lie on her side for some time, just reveling in the feeling. She often lays on her side in bed, but it's not the same because she's propped on pillows and stuff. This was real side laying.

We also rolled to her stomach, which wasn't so great. That's still pretty hard. I know babies usually go from their stomach to their back first, but I don't think it's the same for grownups. After we were done, Linda told me that she never laid on stomach much anyway because it wasn't good for her back. We'll keep working on it anyway. A girl likes to get a backrub every once in a while at least, so it's worth pursuing.

Linda's face and head continue to itch annoyingly. It's probably the single thing that exercises her arms the most. Last night, for the first time, she was able to scratch her face and forehead as high as her hairline. The nurse noticed it when they were doing her shower, and it was cause for a small celebration. All of the nurses kept poking into our room to see her new "trick". Today, she's weak again and can't quite reach, but if she did it once, she'll be able to do it again.

Friday, April 09, 2004

Two months

The two month anniversary of Linda's stroke went by on the 7th. I've felt more tired since the moment I flipped the day calendar over to that day.

Ellie was tested for Linda's blood clotting condition. She doesn't have it, so there's no reason to expect her to have these problems. I wasn't overly nervous waiting, but I was glad to have it turn out negative. Either way we would have delt with it.

Wednesday, April 07, 2004


First, to answer a request: Linda is still on the yellow play dough. We don't get to it every day, but since you asked, I do have a play dough story for you. Last Thursday, when I was gone, one of the nurses gave Linda her putty in bed to work with in the evening. It turns out that the putty can get pretty soft when you work it with your hands. After about 15 minutes, Linda rang the call light for the nurse. When the nurse arrived, Linda had her hands spread across her middle. She was hiding her putty underneath which had fallen and was slowly seeping into her shirt.

They tried a few things to clean her up, including ice to harden the putty. The final solution was alcohol wipes, which did a pretty good job after about 20 minutes of good labor. We now have can of yellow putty with a pink tinge.

In other news, Linda did the "plank" exercise again. Today she held it for about 15 seconds (twice), so a bit longer than yesterday. We also did some shoulder stretching and some electrical therapy on both forearms.

He big triumph of the day came in PT. She had indicated this morning that she would like to do the bike again for her afternoon session. What made it different this time was the bike. The first first bike was something like a tractor seat with pedals out to the front, so it was pretty easy to sit in. We just put a belt around her to keep her secure. Today, she rode a standard stationary air-bike. It was a bit tricky getting her up on the saddle, but that was about the hardest part of getting started. We tied her shoes onto the pedals so she wouldn't slip off and set the clock for 5 minutes.

At first, I had my hand on her back for balance and she used only the pedals (there are also arm grips on the bike which alternate with the pedals). After a few minutes, she added the arm motion as well. After her time was up, Linda indicated that she wanted to keep going, so we set another 5 minutes. Since she was keeping her balance on her own, I removed my hand, and she ran the bike completely on her own for the entire time. Even the head doctor came down to the gym to complement her on it.

Ellie came to visit today. She was cute and adorable as always. We decided to take Linda from the meal group where she usually eats, and she went to the cafeteria with us for lunch. It was pretty fun.

Tuesday, April 06, 2004

New activities

Yesterday and today we have been picking up a few new activities. Yesterday our PT brought out one of those large rubber exercise balls. The activity was relatively simple, Linda had to sit on it. It's not as easy as it sounds. First, Linda's reflexes are impaired, so her balance correction isn't as fast as it used to be. Second, the PT is continually situating her to positions of imbalance so she has to work hard and correct herself. All together that spells a pretty difficult workout (probably even for regular people with good reflexes).

Today our OT introduced a couple of new things and an old thing. The old thing was laying with weight on her elbows. The people from Yoga will recognize the activity as a variation on "plank". To karate students it looks a bit like a front break fall. Many people watch television in this position. We rolled Linda onto her stomache and from there lifted her head and shoulders off the mat, and tucked her elbows under her. That's it. She just had to hold that for about 10 seconds.

The first time we did this exercise, it was so bad that Linda just cried. Today she did it three or four times for 10 seconds each. That's not to say she enjoyed it, but it's still improvement.

Our OT also took us to two new machines. The first is called a "hand bike", and it is like a bicycle pedal set on the table. You hold the pedals with your hands and run them round and round. Linda had a bit of trouble holding her right grip, but there are a pair of gloves to support that. Even on the minimum resistance it was difficult, but Linda was able to slowly rotate the gear. Her goal was 10 revolutions repeated several times. She did well enough that next time we'll probably just put some time on the clock and let her go.

The second machine was a tricep press, i.e. weight lifting. In this case it is really weight "pressing". You wheel the wheelchair between two handles that have a counterweight on the back. Then your press down over and over to exercise your arms. I didn't tell Linda, but I only had 3 pounds on it for her (although I don't know what the machine itself weighs). When she gets a bit stronger, I'll be able to let her know how far she has come.
Tuesday morning

Everyone loves Linda's hair. Well, she would like it a bit shorter herself. I told her we'll cut it again here soon. I expected some of the nurses to comment, but it seems we can't walk down the hall anywhere without compliments. And the women also point out the highlights, remarking on how good they look.

I don't know about you, but I think I might have gone a whole lifetime without noticing that someone highlighted their hair. There must be some "woman gene" that helps them detect hair changes, since it's almost always women who comment. I don't think it codes on the Y chromosome.

This morning we were drinking a bit of coffee in our room when I said to Linda, "I'm stiff and sore. My back hurts, and I have a headache. I think I'm working too hard."

She didn't even pause, and clear as anything responded, "I know I am!" Boy did we laugh. I thought that moment deserved a special morning blog. She does work hard.

Sunday, April 04, 2004


Linda ate Chinese food today. It probably wasn't officially on her menu, but we ordered delivery and were just really careful. As usual, she did great. And she loved it!

Linda also got her hair cut today. I did it. And before you imagine her with a butchered top, understand that I have been cutting her hair for about 7 years. It turned out pretty nice, and Linda looks just like herself still. Jen came and highlighted her hair. It was the first time Linda ever had her hair colored. It looks more like the blonde she had when we were dating, so you might say she looks like her old self.

Linda (sitting here) reports that we went to the mall today. We spent most of our time at Target picking up a few necessities and clothes. We intended to eat out, but that fell through. That's why we decided to order Chinese.

Saturday, April 03, 2004

Friday and Saturday

I stayed up late talking/spelling with Linda on Thursday, so I, at least, was tired on Friday. Linda never seems overly affected. The day was pretty ordinary. Standing and walking (assisted) in PT. Electrical therapy in OT. Various tryings to talk in ST. Our OT did run long. They were trying to get the electrodes on her arm placed just right to stimulate her index finger to extend. She can use all of the other fingers on her hands pretty well now, but still can't get that one finger out (on either hand). That extra therapy left her pretty tired by afternoon.

She had a late ST session that started pretty badly. We went outside for it, but the sun was too bright and distracting, so we came in. Linda was pretty tired, and not trying all that hard, which left her essentially mute. That was when I discovered a trick to getting her voice out. If you get in her face and yell at her, she'll yell back (at least for me) and it's better than normal. She gets more voice out, and more of it goes through her mouth instead of leaking through her nose. I now think of myself as her speech therapy drill sergeant. I work at getting up her ire, and then I make her say things.

Linda was very pleased to be able to walk about 20 feet in the light-gait machine. This was at the very end of the day too. The light-gait holds most of her weight so she can concentrate just on taking steps. That is more distance than she ever made before. Eventually she gets tired and stiffens up so the therapists really have to help her.

Last night I re-did her nails. It was all easy except the painting, which takes a pretty steady hand. I still did a passable job, and I think she enjoyed it.

This morning she had only speech and physical therapy. PT was standing in the standing frame and getting ultrasound on her sore shoulder, so routine. Speech went very well, however. It was morning, and Linda was weak and airy again, so I showed the therapist how well yelling at her could help. Pretty soon we had her doing passable Bs and Ps and even some Gs and Ks (very difficult sounds). Today her speech was the best I had ever heard it. I told her she might just consider yelling all of the time. It really isn't so loud as to come across as yelling, and she is much better.

In fact, her speech was so good this morning that when we went outside to the courtyard, Linda and I had a complete conversation without resorting to the letter board or even oral spelling (or at least not much oral spelling). I could understand everything she was saying with a repetition or two. We have never done that well before. It was very exciting.

This afternoon we went out to the coffee shop downtown. Tomorrow I think we may do the mall again. Linda really likes to get out. So do I.

General requests

Speaking of coffee... If I haven't mentioned it before, Linda generally has a standing request for Milky Way coffee drinks from Java Co. She generally orders them light on the hazelnut (so they switch the amount of hazelnut and caramel in the drink they make for her). She likes them cold, but no ice, since it melts and dilutes it before she gets it. We'll put it in the fridge and chill it for her here.

She also always enjoys your emails and notes. It is relatively common for an email or piece of mail to arrive which I lay down and forget. She doesn't forget, and I soon find myself spelling with her, ON THE TABLE... CARD... and such until I remember.

Friday, April 02, 2004

Taking Ellie to the doctor

Yesterday I took Ellie to get her blood tested. That meant first a visit to our family doctor. As usual, there was a bit of a wait, with Ellie and I together in one of the rooms for about 30 minutes.

Sitting quietly with Ellie gave me a chance to see her the way a lot of people probably see her. Being 2, she was of course interested in everything in the room from the tongue depressors to the chair with the stirrups on it, and I watched her explore. I was wondering whether inside her skin she might have blood that clots too easily, like her mother. For those moments she struck me as frail, and fair, and delicate, like an animated (perfect) porcelain doll.

Thirty minutes is a long time to wait when you are 2 though, and soon I had my own daughter back. She demanded to get into all of the drawers and touch the sterile supplies. She wanted to leave and get her "gramma" from the lobby. She wanted to do everything but wait, and she let me know in no quiet way. Now that's my Ellie. Red in the face, insistent, and stomping her feet in protest. Luckily her dad has a quiet stubbornness too, or she might really get out of hand.

We finally met with the doctor and ordered our blood draws, which were actually done over at the hospital. The lab people there were terrific. Ellie was a bit short on sleep (which is partially responsible for her impatience) and was antsy. They quickly produced a little white bear and asked her if she wanted to hug it. We were taken to a sort of large closet for the draw while the techs checked over the order. No one wants to take blood twice from a toddler because they took too little, but they don't want to take too much either.

The closet was full of little vials with different colored caps. Many of them were blue, which is clearly Ellie's favorite color right now, so she was quite content checking them over. The rubber strap that they use to make the blood vessels pop out on your arm was also blue, which she noticed too. She asked them, "I take that home?"

The draw itself was textbook perfect. Ellie sat in my lap, and I held her legs between my knees and her left arm in mine. One tech held her right arm against the table and the blue strap went around. She never saw it coming of course, but she has good veins like both her parents, so it was easy. There was a single stick with an impossibly thin needle and then about a minute of drawing. I think Ellie was stunned more that someone would intentionally hurt her than by the hurt itself.

It was over pretty fast, and I wanted a quick distraction, so I asked her if she wanted to play with frogs upstairs. In the emergency room there is a really terrific play table filled with plastic frogs and lizards that you move around by holding magnets under the table. When Linda was originally in ER for her stroke, Ellie and I played at making the frogs kiss to pass time.

After we did some frog kisses and played with the "snakes" (lizards) we transitioned to Java Co. and Ellie shared some coffee with me. We also had some chocolate orange cheesecake which I can gladly recommend. It was wonderful.

I don't know how long it will take to get the results. I hope they are negative of course. I don't know what will be the course of action if she is positive. I guess we'll have to see what experts have to say in that event. For now we're just waiting.

Thursday, April 01, 2004

We started the second DVD of Fellowship of the Ring last night, but we stopped part way through. One part of recovery for Linda is itching from time to time around her face and head which is apparently nerve-based. She can't reach her own face, so I often try to itch for her. Whatever the cause, it was too distracting for her to really get into the movie, so we decided to stop and go to bed. Maybe we'll get a chance to finish it sometime in the next few days.

One thing that she mentioned yesterday was that she was able to completely relax when we were watching the first part. Usually even when she is calm there are some things that don't relax fully, like her index fingers. I don't know if it means much or was just a fluke. I do know that I felt completely "normal" when watching it. You don't really move or talk much during a movie, so sitting next to a woman who doesn't talk or move easily isn't really any different. It was just the two of us doing something we've always done together.