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Monday, May 31, 2004

Homework results

We had pretty good success with getting up off the floor. That's not the same as saying Linda can get up on her own, but I would say it was better than when we tried it at Rusk. And Linda succeeded at something that will make Fred cheer. She successfully got into the "all fours" position (i.e. crawling). She's never even gotten close without being reduced to tears. I asked her how it felt, and she said she wanted to panic. I asked her why, and she said "future pain." It didn't hurt, but she was afraid it was going to.

We also did her dowel exercises, a shower, and managed to get her in bed by 10pm.

On a totally unrelated note, I snipped 4 very fragrant blooms from my roses in the back yard yesterday, two yellow and two sort of purple. My timing was perfect. About an hour later that hail storm came through and would have demolished them. I'm such a sucker for those roses. I'm not usually much of a plant person, but I really like them for some reason.

Settling in

I think we're starting to settle in. Most things are put where they belong, and we're starting to do other things. We've been out to visit yesterday and today. Sometimes that is easier and sometimes harder. The more people there are, the harder it is for Linda to be heard and understood. She hasn't said, but I think being a klutz bothers her some. When you are around your friends, you feel kind of uncool dropping food on yourself.

She is getting better at the step and getting in and out of the bathroom. Those are the hardest tasks around the house for her. It turns out that she uses the kitchen sink for things like brushing her teeth, because you can get to it with the wheelchair. It's taller than the other sinks, but she can reliably stand up there when she wants. Unfortunately clutter always accumulated there before, so it's worse now.

We had pancakes for breakfast. I love our pancakes. That was something I definitely missed when we were gone. We had lunch out and dinner was brought in. Except for some dishes, today was a pretty easy food day.

Staying up late and getting up early (for the last few days) left me kind of worn today, but I got a little nap earlier this evening and I'm feeling better. I should check to see if Linda wants a bath tonight. It takes about an hour to get her bathed and changed for bed if she does, so I don't want to start too late.

We also agreed to do some "homework." We've got dowel exercises to do yet, and our PT gave us an assignment to "get up off the floor" as soon as we could. He said that it would be a good idea to do it when it doesn't matter. That way the first time you get up isn't after you've fallen and given yourself a bloody nose. Blood never makes a situation more fun, so it's better to practice without first if you can.

Saturday, May 29, 2004

T Plus one day

So, we've been home a day. And most of you are wondering how it is going. We're both tired, but things are coming along nicely.

First impressions. Linda's new wheelchair is wider than her old one. That's good because her loaner was too narrow for her hips. But it's also an adjustment. After a few months you become accustomed to where you can fit. Linda can still make it through the house doors (except the bathroom of course), but it's harder than when we practiced, and I noticed she has bruised one of her hands. I removed the door to our bedroom to make that easier--we never closed it anyway. I also cleared stuff away from the doors so she can hit them more straight on. We'll see how Linda adapts. Worst case, we remove the rails and she has to push on the tires (which means getting dirty hands). She hasn't asked for that yet.

I've been completely busy around the house. My first task was to get more grab bars up. I got pretty good ideas about where we would need bars when we visited. I put up 3 bars yesterday and one this morning. One perk to all this work is that Linda doesn't have to walk sideways with her walker just to go to the bathroom. There are enough holds that she can walk securely without her walker, and it is much easier.

This morning I got Jon B. to run me around to hardware stores and we got the makings for a back step. The back door has a 12" step--pretty hard for Linda. We built a 6.25" step for the back that is deep enough for Linda's walker. She can step down, reposition the walker, and step down again; another great improvement in ease. I'm so proud of our step. Total construction time was 55 minutes and it was almost perfectly square and level. I had to put only the smallest of wood chips under one corner to make it completely wobble free.

I also did a bit of plumbing. I had to put a new neck on the shower. It went fine, but I was reminded of doing things like that on the farm as a kid. Back then, when I was small, it was sometimes my job to go down with the plumber into wells that needed work. Mostly, I had to hold stuff, like the Teflon tape. Very hand stuff that. I used some today. Sometimes I feel like my whole life was practice for the last few months.

I still haven't put away our stuff. It's not that easy moving back into a house you haven't occupied for 4 months. Not only do we have extra stuff from the hospital, but some of our old stuff is in the way. Just about everything you do is a potential problem for a wheelchair. For example, the air conditioner is in the front room, so we are accustomed to using a fan in the hallway to move air to the back of the house. You can step around a fan, but you can't wheel around one, so that's out. Every time I lay something down, I realize it's in a wheelchair path. I'm going to have to learn new places to put things.

We did find time to go to the coffee shop and discovered that several of our friends anticipated that and showed up to visit. Smart people, our friends.

Linda and I went to Hy Vee this afternoon. I noticed that the doors in are pretty narrow. I notice all kinds of things like that now. I wonder what you do if you have a slightly bigger chair than Linda's. Maybe you just don't by groceries! Yeah right. Maybe you shop at Walmart.

When we left Hy Vee, I had my second handicap parking annoyance. If you've looked, proper handicap spaces are nice and wide. That's particularly important for us, because Linda needs room to get the wheelchair up on the passenger side of the car. So I always park on the left side of the space. Someone decided that the extra space would be a good place to park their car, 2/3 in our space and 1/3 in the next handicap space. No room for a wheelchair. The passenger was waiting in the car, so I asked him to move his car (well, technically I didn't ask, but he knew what he needed to do). Their handicap placard apparently belonged to the passenger, because he hobbled around painfully to drive the car through to an empty space just across. Missouri tags 104 TKH.

This evening left me swamped. Linda used to do more cooking than I did, but often we did some things together. I'm pretty much doing most of that right now. We had grilled ham, steamed asparagus, and watermelon tonight. Linda needed some help eating the watermelon, but not so much. Picking out the seeds with a fork makes a great OT exercise.

She's sleeping now. I should get to bed too, since she'll wake me up tomorrow at 6:30am and want to start the day.

Friday, May 28, 2004

We're home!

I know a lot of you have been checking all day. What can I say? Coming home is hectic business. We were up at 6:30am and had breakfast around 8:00am. We had some discharge paperwork (which Linda signed herself). At 10:30 they called the Code Derek over the loudspeaker and Linda came down to walk.

The hallway out of Rusk is the only carpeted hallway in the building. I set her walker at the edge where the carpet begins. I placed her new wheelchair at the other end of the carpet. She came down in her old loaner chair. I told Fred I wanted that chair left behind her empty (sort of symbolic).

Fred brought her down. I cut the ID bracelets off her left arm and we walked down between two walls of clapping people. She stopped at her new chair and several of the people who knew her the best came up to wish her well and give her hugs. Then we proceeded to the car and left for home.

Starting off:

Hugging Tori (speech therapist):

Hugging Fred (physical therapist):

Out the door:

And so it begins...

Thursday, May 27, 2004

Last post from Rusk

Well this is finally it. The last post from this little computer room. After I'm done, I'm going to remove my hub and extra network cables, and it will look like it did before I arrived (except the computer works now).

Today was sort of a celebrating day. We had therapy this morning, but we went on an outing to the mall this afternoon with another patient and two therapists. We had planned it before and decided not to change it just because we were leaving. We've gone over the skills for home enough to be reasonably comfortable anyway. Our OT was one of the therapists, so she and Linda went shopping for pants that would be practical for her without being embarrassing to wear.

This evening we ordered pizza with some of the evening nurses that we have gotten to know during our stay, and we all told stories. It was a pretty relaxing night on the floor, so we had plenty of time for socializing. Earlier, they helped us pack our room and take down our posters and pictures. It now looks like a sterile hospital room again. They already know who is going to move into our room when we leave.

Linda's new wheelchair arrived today. She's been in the old one for so long, that the new one feels both better and worse. Overall, she likes it quite a bit. She'll adjust to the differences soon enough, and it will break in and be easier to use in some ways.

So now we're set to go. Tonight we go to get to bed on time. We'll have discharge paperwork in the morning, a little more packing, and Linda's walk of fame after that. I know a lot of the staff are really looking forward to it, and so are we.

See you at home soon.

Wednesday, May 26, 2004

T minus 2 days

We can really feel the end approaching. Lots of people are coming up to us and congratulating us on finally getting to go home. We are taking pictures with the people we spent the most time with. And we are starting to count 'lasts,' as in, "This is the last time you'll ...."

Fred was out today, so we had Bonnie for PT. It's always interesting to work with a new therapist because they look at things from a slightly different perspective. At first this was really confusing for Linda (who didn't know which suggestions were 'right'). Now, however, it is nice to get new ideas. This morning they did stretching and this afternoon they walked on the carpet. Linda is still practicing to walk out on Friday morning.

In OT, Linda did a block puzzle something like a tangram but a bit simpler. She had to use her left hand only, but it was pretty easy anyway. That was nice to see. This same puzzle once reduced her to tears during a weekend therapy session, so you can see we've made a lot of progress. She also did more dowel work to strengthen her arms. Lyndsay encouraged us to continue the dowel work at home since it doesn't really require much equipment and it has been so helpful.

They brought a wheelchair to try with Linda, but it was too tall. The equipment company didn't have one that was short enough for Linda, but they tried one of the chairs they had in stock and adjusted it to its shortest setting. It was still way too tall, so they are going to order a different one overnight, and we should be able to get it tomorrow or Friday morning (before we go) at the latest.

Wish list

Lots of people are asking what we need. I feel kind of like a new parent--I don't really know. Unfortunately I don't have a whole host of friends who have gone before and can anticipate our needs. I'm pretty sure we aren't going to be in desperate trouble when we get home. If it were going to be like that, we'd stay at Rusk longer. Some things I can anticipate, are

  • More bars: I have some in my trunk and I've started finding the studs in the house, so I have ideas about where they will go, but I expect to do some of that when we get home.

  • Back step: I'll need to make a back step about 6" tall, although the exact height isn't critical. I expect to use 2x6's with a thick plywood top. It should be about 8" deeper than Linda's walker (which I haven't measured) and probably a bit wider than the door. If you have a truck and are handy I might be calling you.

  • People to visit: Linda doesn't need lots of support, but she needs someone to spot her for transfers, and help getting drinks, etc. We won't need it all of the time, but sometimes so I can be gone, and I think we'll know better as time goes on.

I sort of expect it to work out just like a new kid. You get a lot of 0-3 month clothes and after three months, you don't have a lot. A few people anticipate that for you, so your kid doesn't have to go naked while you buy more clothes. I expect a lot of care and attention right away, and after a while there will probably be just a few. Maybe I'm wrong, we'll have to see.

Sorry I can't be more specific.

Tragedy and comedy


Linda's car has a boo-boo. Marilyn fell asleep just north of La Plata, crossed the yellow line and put Linda's car in the ditch on the other side. Luckily, none of the oncoming traffic hit her. As I understand, the car was drivable, but the front bumper and fenders are damaged, probably from bouncing into the ground hard. Marilyn and Ellie were fine, although Ellie was pretty scared. And yes, I was just tormenting you by describing the car first, which I can do because everything seems to be OK.

Linda didn't seem too upset, but it will be some time before she can drive a car anyway. When she can, she'll probably do better with a newer car that is easier to drive.


This morning the nurses out in the hall were goofing around. One of them in a mock helpless voice said, "Help, I've fallen and I can't get up!"

Linda looked at me with a crooked smile and said, "That's not funny." Boy did we laugh. She knows first hand actually--we practiced on Monday, and she can't get up (yet).

Tuesday, May 25, 2004

Code Derek

We're still getting ready for home, which means focusing on home skills. This morning, Linda and Fred did a flight of stairs (13 steps) down then up. It's a lot harder than the practice stairs. The stairs are deeper, and there is only a handrail on one side. It left her pretty winded, but not too tired to finish off with a little walking with Fred (and no walker). He kept her from losing her balance, but he was still impressed by how well she did when tired.

In OT we worked on transfers. It probably doesn't seem like much, but transfers that Linda can do without help become more important at home. It allows her to be home with people who don't have the skill to lift her.

Linda has decided to walk the last stretch of carpet out of the building. So last night we went down with the walker and practiced; we'll go again tonight. I learned today that the staff is planning a Code Derek for our departure. When we are ready to go, they'll call the code over the PA. Then nurses and therapists will line up along the walls to say goodbye. They often do it with patients that have had long stays like ours. We've been here 3.5 months, and we've worked with almost every therapist in the building. The code name goes back to the first patient who got that kind of goodbye.

I hope Linda can walk while crying.

Monday, May 24, 2004

Finals week at Rusk

According to one of the doctors, we are in what is often referred to as finals week. Everything is focused on the things we need for home. I brought pictures from our visit that show various things about the house. In OT this morning, we started filling out the paperwork for the equipment we'll need: a wheelchair, a walker, a commode, at least. Tomorrow we'll focus on more on skills, especially transfers on carpet (which were one of the harder things).

It PT, we totally focused on skills. I showed Fred a few pictures and we discussed our strategy for the back door. He pretty much agreed with what we used on Saturday and offered a few helpful suggestions. We'll need to build a step for back there, but I think we can handle that.

This morning, at my suggestion, we worked on sideways and backward walking on carpet. That's pretty hard stuff, but it's how we get into the bathroom. I showed him diagrams of our bathrooms at home, and we talked about how to access them. Linda has the hardest part in all of this though. She has to do the walking.

This afternoon, we put Linda on the floor and talked about how you get up after you've ended up there. In general, the goal is to not get onto the floor. But the world isn't a perfect place, so you realize it's going to happen sometimes and you practice for it. In fact, Linda missed a transfer yesterday and ended up sitting on the floor, so the lesson felt a lot more pertinent to her today. She can't get up by herself, but we know generally how to do it, and as she gets stronger that will change. For the meantime, she shouldn't ever find herself alone on the floor anyway.

After the floor, we walked over to the "curb" they have and practiced stepping up. That's the skill for the back door. We walked back to the wheelchair when we were done with the curb, because we wouldn't want to go soft on Linda. Oh yes, she had to wheel herself back to the room at the end of the therapy (building those arms for the carpet). She's quietly reading a book at the moment, lucky to be awake.

Sunday, May 23, 2004

The birds and the bees and the kittins

When Ellie was here the other day, she proudly announced, "I have little kitties! You wanna see um?" That's right. The reluctant cat owner (me) has even more. We have 4 brand new kittens, each about 4" long. Only days old.

Here's a picture, so you can think about which one you want to adopt when they get older.

Saturday, May 22, 2004

Back to Columbia soon

Before we head back, I have a few more notes to jot down, so I figure why not jot them down for the whole world to see? We definitely learned a few things today. One thing I did not expect is that Linda prefers to use the back bathroom. It is so small as to be a closet, so I just figured it would be a no-go. But since it is so small, she has less walking to get in and out. I guess it'll have to get a grab bar or two.

I also realize we'll need a bar next to the back door. Since it's obvious we'll go in and out that way, and she needs to walk there, it will be best if there is something sturdy to hang on to.

Alas, this house has the weirdest configuration of studs inside the walls. Some appear to be 18" on center (standard I believe). In other places it is 14" and in others it is 12". Oh well, we'll work it out.

We also need a way for Linda to call from one end of the house to the other. Her voice doesn't carry over the sound of an air conditioner. I think I have it covered though. I bought a couple of x10 devices (which you can get at x10.com--although I have to warn you, they have the most annoying ads on the internet). I will probably put a remote controlled lamp in each room and give her the remote. She can flip the lights if I don't hear her. For today, I told her to turn the TV on and raise the volume (which she just did--works fine).

That's pretty much it I think. We know what we need to practice: 1) more transfers on carpet, 2) walking sideways and backwards in the walker, 3) way more walking on carpet, and 4) more up and down steps. I don't know if she should do a bit more without her air casts (ankle support); we didn't use them at home.

We also probably need to build an extra step at the back door. She was too tired to step up when we came back from lunch this afternoon. We may also need to move a few small tables so it is easier to get around, but most of the major stuff seems OK. There's probably more (which I'm sure we'll discover soon enough when we come home to stay), but I think those are the big things.

Posting from home

Ahhh... How nice it is to use my own computer again.

We're at the house obviously. It's interesting what is different than you expect. First, I thought we would come into the house through the front door (via the deck) because the deck has two reasonably-sized steps and the back door has a single unreasonably tall step. That was wrong. Since it was raining, the deck was slicker than I was comfortable with. So I backed the car into the garage and we braved the back door. It was OK, but it used skills that we just barely had. Just yesterday we did navigating a curb with the walker.

It is clear to me that the walker is going to be more important at home, where we don't have a cornucopia of grab bars.

One good point: Linda can get her wheelchair into every room of the house except the bathrooms. We knew the bathrooms were off limits already, but it wasn't clear that she'd be able to get into some of the other rooms like Ellie's room our bedroom. Since she can, we won't have to rearrange the house.

The bathrooms are hard. She has to walk sideways and backwards using her walker. We practiced sideways for the first time (in the walker) yesterday, and just made up the backward thing when we realized we needed it. We also practiced with a commode, since walking isn't required. It's still kind of hard because of the carpet. So far, this is what causes me the most concern. There's only so much effort you can require for going to the bathroom.

Other than that, it's gone pretty well. I think we're going to go out and eat now. Maybe you'll see us.

Friday, May 21, 2004

Friday night

We spent both of our PT sessions today working on skills. This morning we revisited car transfers. We've been doing them for some time of course, but today the goal was to have Linda transfer without assistance. It went without a hitch. Linda can do that well, so I expect we'll just do them that way from now on.

This afternoon we worked on the walker. We started with walking sideways. The walker is too narrow to fit in the bathroom, but Linda should be able to walk with it sideways though the door fine. Then we worked on using the walker up and down a curb. Finally, we did stairs again. Needless to say, that was a pretty exhausting 30 minutes.

I haven't mentioned speech much lately, but Linda keeps working on pitch and duration with some nasality exercises thrown in, and she seems to improve gradually. Her speaking is definitely becoming easier for people to understand, even to some extent in noisier environments. As an aside, I am definitely going to write some speech therapy software, because there should be a free software offering in that arena. If nothing else, it would allow Rusk to have one more computer available (there is a good bit of competition over the one we use).

Friday morning quicky

We spent our OT session this morning working out things that Linda will need to be as independent as possible. I hurt my back again and can't do transfers right now, so I'm particularly interested in how she can transfer without me lifting her. I'm taking the day off from transferring so we can go to Kirksville tomorrow and see what we'll need at home. You can try to plan, but until you go see it, you can't really know. I expect a lot of next week to be focusing on those kinds of issues. In PT too.

Yesterday we went to the mid-Missouri American Stroke Assoc. picnic in Columbia. It was a relatively small gathering, but it had interesting moments. It was interesting to see the disagreements among the survivors about what to expect. One woman was saying you'll keep seeing improvement indefinitely. But another man there said that he didn't see improvement any more, although his stroke was 14 years ago.

Last night, Linda transferred on her own between the bed and the wheelchair. It made our nurse cry. She also went to the bathroom entirely on her own (and yes she told me to report that). It took 45 minutes--10 minutes to get her jeans down and 30 minutes to get her jeans up (they were tight). She's going to have to wear something other than jeans at home.

Thursday, May 20, 2004

New date

Linda's date was changed today in case conference. They moved it up to Friday 5/28. The rationale was that with Monday being a holiday, there wasn't going to be that much therapy after that Friday anyway, and we might as well come home early. Linda is pleased I think, although she is going to miss the people here too.

I'm disappointed. At first I was just surprised, but I am disappointed. When you are doing therapy, you measure every success. Your balance is better than it was last week. You can reach the bar next to the toilet with both hands now when just a few days ago it was only your right arm that was strong enough. You can move faster and more precisely than the last time we measured.

But for going home, you note what you can't do. You can't walk safely alone even with a walker. You can't go to the bathroom alone. You can't eat without someone to cut up everything first. You can't get a drink for yourself. You can't be understood on the phone to call for help. And you can't get up if you fall. You can't even crawl.

I have to think about how things will work. When I take Ellie to day care, I will have to dress Linda and bring her too, or I have to have someone stay with her. Both are things you can do, but I had hoped that Linda would be able to be just one tiny bit independent by the time we came home.

The doc saw me in the hall and asked me what I thought about the new date. I don't have the energy to put on faces, so I told him I was disappointed. He said we can talk about it. But if the date changes now because of me, I will be the villain. So I think it will have to stay.

Just the fact that my opinion alone could change the go-home date is an indication of how messed up it is to be dependent. One person in a marriage should not have total power over the other. It isn't natural.

But it's not like I'll be trapped with her all day long. She'll still do a lot of outpatient therapy, probably every day at first, and I won't always have to be there for it.

Since we are in a morbid mood today... This month is stroke awareness month. Strokes are
the third leading cause of death in the US. They are the leading cause of long-term adult disability. The symptoms (Linda had all) are:

  • Sudden numbness or weakness of the face, arm or leg, especially on one side of the body

  • Sudden confusion, trouble speaking or understanding

  • Sudden trouble seeing in one or both eyes

  • Sudden trouble walking, dizziness, loss of balance or coordination

  • Sudden, severe headache with no known cause

The doctor in Kirksville never once said the word clot to me. He never asked if she was using birth control.

The leading risk factor is high blood pressure, although smoking is also a major risk as well as several diet-related factors. Women with blood clotting disorders may be as much as 30 times as likely to have a stroke on birth control as the general population. According to a recent medical paper on the topic, about 5% of white women have genetic defects of this type.

Wednesday, May 19, 2004


Last night, Linda made cookies. Her sister Mary helped some, but mostly socialized. Linda's jobs were stirring, which was very hard, and putting the cookies on the sheets. Cookie batter is quite stiff. They made two kinds of cookies. Linda was in the chocolate chunk pecan group. The other group made oatmeal raisin. Both turned out really good.

Today I was in Kirksville finishing my last grades before noon. I also had to do mundane things, like get my oil changed. In my seclusion at Rusk, I don't keep up with the news much, so you'll imagine how surprised I was when gasoline was $1.989/gallon. One more penny would have made it double what I remember in graduate school. That's what you get I guess when you elect an oilman president (although Linda always reminds me that he wasn't elected, he was appointed by the Supreme Court). I wonder what different things in the world would have been mucked up by Al Gore. Personally, I think I would probably wreck the software industry.

When I got back, Linda told me she had a "very good" day. That's better than she usually reports, so I believe her. She did dowel work in OT, and standing and sitting in both PT and OT. She told me that it went better with Fred than Lyndsay, although she didn't say why. I suspect it's because Fred was working on it from a strength and balance perspective and arranged the exercise that way. Lyndsay would be looking for independence. Living skills are always way harder than regular exercises.

One practical skill that Linda did have today was "scooting." She scooted from the wheelchair to the mat. She also laid down and sat up on the mat without assistance.

Ellie came today, and Linda tells me that she was very good. They played catch with a balloon and with a beach ball. The beach ball was harder because it was slippery. Linda tells me she was not as good at it as Ellie. Oh well.

Today, Linda started pushing herself to therapies. Lyndsay suggested it yesterday to build strength because we have carpet at home and it is way hard to push the wheelchair on carpet. Linda says, "Fred made sure I did it." He told people they couldn't give her a ride, although he did relent twice and help her out himself.

Tonight, we did some working on transferring to and from an armchair. We got the idea in the apartment, and there are two perfect chairs at the end of the hall in "Ellie's office." Ellie's office is just two arm chairs down by the smoking deck in north hall where she would be delighted to show you her imaginary puppy. We go there almost every visit at least once.

Tuesday, May 18, 2004

Back in 232

Big news. They had to rearrange patient rooms again, and they asked Linda if she wanted her old room back. She said yes of course, so we are in 232 again. I'm glad. For one thing, there is a bit more room for us. But, I also suspect they may put the back part of the hall in "lock down" which means that you can't get out unless someone buzzes the door open. It happens from time to time when they have someone paranoid that may try to escape. Needless to say, being "locked down" would be even more demoralizing than just having a roommate.

Fortunately 232 is on the free side of the doors.

Monday, May 17, 2004

Change of address

We've moved. We are now in a two-person room, 236. Linda seems upset, but it's not hard to tell exactly because she cries so easily. I can't say for sure, but probably the June 2 date just became a lot more solid. The doc will really have to be persuasive to get her to stay after this.

Sunday, May 16, 2004


Today was the first time I found someone illegally parked in a handicap parking space that I intended to use. It was some fancy luxury car I'd never be able to afford, and it had it's emergency flashers on as if to say, "Yes, I know I'm parking illegally, but really, I'll only be a few minutes. I don't deserve a ticket; no one will be inconvenienced."

Impressions of apartment living

We moved into the ADL apartment about supper time last night, when the nurses announced that the "honeymoon suite" was cleaned and ready. They had even left licorice on the pillows--they didn't have any mints on them. We were there until about 10am this morning.

It went OK. We had 10 hours of consecutive visitors yesterday, with about a 20 min break at 4pm, so we were both tired pretty tired to be trying the apartment. Linda also had a cold which bothered her quite a bit too. On the other hand, we didn't have Ellie, so you can imagine harder scenarios.

The apartment itself has a kitchen, living-room, bathroom and bedroom. It is quite spare. Linda pointed out to me that there are no pictures on any of the walls. The living-room, hallway, and bedroom have a thin utilitarian kind of blue carpet. The bathroom and kitchen are tile.

Part of using the apartment was handling Linda's medications which came in 9 little bottles. That was a bit more than I expected, since they have been discontinuing some of her meds lately. Luckily there was an elaborate laser-printed schedule with all of the doses for the day. You just have to be careful and precise. I suspect the schedule will be simplified still more before they send us home.

The first difference we noticed was the carpet. The first transfer I did with Linda twisted her foot. It hurt but didn't hurt her, although she was a bit annoyed at me. Carpet makes it easier to transfer in socks, but harder in shoes. It also makes the wheelchair harder to move (although not so bad as the carpet at home which is even thicker).

The bathroom in the apartment has a door that opens in. I had never noticed the doors much before, but getting the door open or closed while you have a wheelchair in the bathroom is not so easy. We probably won't bother closing the door at home when we're alone, although our bathroom is so small that it won't ever have a wheelchair in it.

We watched Pirates of the Caribbean on the big TV (even though we just watched it last week). Linda said we should watch it again since it is the loudest movie we have, so most suited to a big TV.

After the movie, I gave her a bath. That was one of the big goals of the stay. We used the same shower bench we always use. It is like the one we will buy for home. We did OK, but it was harder. It was harder for Linda because she had to get in and out of the tub and there was less to hold on to. It was harder for me because I had to lean over more to reach.

It was nice to have a regular bed, one long enough for me. Linda sleeps on the right side of the bed (facing up). There was an extra hospital bed stored in the bedroom of the apartment; sort of the one obvious reminder that this isn't a hotel, it's a hospital. That made it a little hard to get to that side of the bed with the wheelchair. So for bed transfers I positioned Linda's chair, then climbed over the bed to help her.

There was one way that the apartment was much better than a hotel. It didn't smell like smoke. I hate to stay in hotels because even the non-smoking rooms (especially the bedding) smell like smoke, and my allergies make me miserable. Unfortunately I was allergic to something else in the apartment (maybe the shower?) so it was actually much the same as a hotel. But at least it didn't stink.

Linda told me this morning that she was afraid to roll around because she didn't want to fall out of bed. I don't think there is much danger of that, but she did once get caught by the rails on her other bed, and she has been paranoid since. I told her that I slept OK, especially after 2am (my back had been hurting until about then). She said, "I didn't toss and turn." We both kind of laughed. She can't literally toss and turn, but she did not even move much because of the fear. She coughed quite a bit during the night because of her cold. I'm callous, so I ignored her.

Personally I would have been happy to skip getting up for medicine at 6am, especially since Linda declared that she was awake and wanted to stay up. I didn't really get to vote, so we got up and dressed her, and I made omelets for breakfast.

It is frustrating to cook in someone else's kitchen. It is harder in a 'demo' kitchen. No pot holders, no paper towels, no sharp knives. There was a sharpening rod in one of the drawers, so I honed my pocketknife and used it.

This morning we practiced getting in and out of an armchair to the wheelchair. We were interested to see how far Linda could get on her own. She can do it with very little assistance, so I can see she'll be able to get in and out of chairs like our red wingback chair relatively soon. Longer furniture, like the sofa, will take a bit longer. She really needs both armrests to push up on right now.

Saturday, May 15, 2004

Saturday afternoon

Ellie was here to visit. We took her to McDonald's and then to the park (Linda's idea). I don't think Linda enjoyed it as much as she expected. When she is at Rusk, she is eager to go out. But when she goes out, she feels like a freak and wishes she were back. The background noise in a restaurant pretty much makes it impossible to understand her, so she can't really chat.

The weather was nice for going to the park. It was sunny and warm. Ellie was excited to see the playscapes, so we wheeled Linda over to the end of the sidewalk. Ellie ran toward the swings which are hung very high. She needed help, so I had to leave Linda parked by herself watching while I helped Ellie play. I asked Linda first if it would be OK or heartbreaking. She said, "Both." Ellie did have a good time at least, and she was very good.

They were cleaning the apartment when we got back, so we should be able to get into it soon.

Saturday morning

I forgot to update the blog last night, even though I have a few things to post. First, for those of you desperate to know how my grading is coming, I'm basically finished. I have all of my Stat grades calculated and entered into Banner except for one make-up. It's sitting in my office, so I'll get it when I get to KV next time. But I feel done, which is the important thing.

Linda did some sideways walking yesterday. She asked to do it actually. One of the PT students had suggested it a couple of weeks ago, but they had never gotten to it. Linda has been intrigued about it since, so it was nice that she finally got to do it. Basically, they stood up in the parallel bars, and she stepped out to the side until she had done the length and then came back. Like everything it was hard; she was using different muscles than you use for regular walking.

In speech therapy, Linda used a computer program to work on different voicing skills. They have this collection of computer games you run with your voice. By varying pitch or loudness, you make things move to score. Most of the games Linda worked on were focused on pitch, trying to help her increase her range. There are also games for developing breath support. Some are quite challenging. I tried a few, and I have very good breath support. I can sing a note much longer than most people can because of all of my music training.

I did a little searching, and I can't find a free software equivalent, so naturally I intend to write one. I've already done a little research into other sound-related programs I can build from, and I got the sound drivers on my laptop going. So I'm off to a pretty good start. We'll see how it goes. If I get too busy, I can always farm it out to a student for a capstone project.

Tonight, we get to stay in the ADL apartment. Rusk has two apartments you can practice living in. They are not handicap accessible, except for some grab bars in the bathroom--i.e. they are basically just like home. That means they have a regular tub for showers, kitchen counters at standard height, carpet, etc. They have a regular, flat, non-hospital, bed (for two). Linda is nervous, but she can't say why. I think it will be fine, and it's here in the building, so we can still get help if we need it. We'll see soon enough.

Thursday, May 13, 2004


I was in Kirksville today for a meeting (and, alas, some grading). Apparently, Ellie and Marilyn awoke with an early storm this morning. So they came to see Linda. Linda tells me that Ellie was good.

I forgot to check the "board" to see if Linda's going-home date has changed. The doctor has been softening Linda up in case there should be another change, but I would guess that they will wait until next week if they do. I'll let you know if there is a change.

There's always a bit of "catching up" when I get back to Columbia. Today it started off pretty cute. I asked Linda what she did today and one of the first things she told me was, "I made Fred curse today." I gave her a questioning look, so she went on, "It was a good thing." They used the standing frame today. Fred always brings the wheelchair over and says, "Stand up." So today she put her arms on the arm rests and did just that. Definitely a moment worth a little happy swearing.

She did dressing this morning for OT. Later in the day she put together a puzzle and did some dowel work on the mat. She is still working on getting enough strength to do it sitting up so she can join the dowel group.

One new thing on her schedule for the first time today was circuit group which is just a group for doing the various weight-lifting machines in the gym. The patients rotate through the machines and do each one, and a bit of free weight work is mixed in. Some of the weights were really hard yet, and she had a hard time controlling some of the free weights like the dumbbells. But I get the impression that she felt generally positive about it.

Wednesday, May 12, 2004

Standing tall

Linda's tallest accomplishment today was standing. I know this doesn't sound like that big a deal since she has been standing for quite a while, but actually it is. The difference is that today she was working on standing balance. She had no Fred (in fact she was working with a different therapist), no frame, and no bars to hold on to.

Actually that is a bit of an exaggeration. She did in reality do the whole exercise between the parallel bars, and the therapist did catch her when she lost her balance which happened quite a bit. But the focus of the activity was standing without help. Her strong inclination (which is common in recovery) is to bend too much at the waist and stand too far back on her feet. That is she wants to fall backward on her butt.

So today they worked on what we would call in karate "tucking your butt" and standing forward more on the fronts of her feet. Then she can balance, and she did a pretty good job of it. She asked to do it again in her afternoon PT session as well, and was able to stand for 1 min 10 sec without any help.

We baked brownies in occupational therapy. It sounds like goofing off, but mundane tasks are actually very hard. Just as one example, consider that everything at Rusk is built at wheelchair height, but the apartments have standard height counters just like home. Try cooking or doing the dishes sometime in your kitchen while sitting in a chair the whole time. Other simple things like stirring are a real coordination challenge, so it's quite an activity.

If we worked on life skills every day, I think it would kill her. Behind me, Linda murmurs, "It would."

Tuesday, May 11, 2004

In the pool

We did a bit of therapy in the pool today. It would sound nice, a warm 91 degrees F, but in reality it is very hard work. Linda hated it and has resolved not to get in the water again. I'd go on, but grading calls to me. Bye.

Monday, May 10, 2004

Lifting weight.

She makes this look easy, but it isn't.

Sunday, May 09, 2004

A triumph of free software

On Friday night I installed Linux on the broken Windows PC in the gym. It had been broken for weeks and had gotten to the point that it wouldn't even boot. It runs great now. It didn't take people long to perceive that it was up again, and I notice they are already browsing the web and checking their email on it.

All in all, I'd call it one small success for free software.

In case you don't know, free software is my philanthropy. Just to be sure we're on the same page, if you think free software is about programs that don't cost anything, or about the deliberate copyright infringement of software, then you don't really know what it is. Free software is about freedom.

I make it a point to only use free software when I can. And the software that I write is always free software.

Ask me about it in person, and I'll probably tell you more than you ever wished to know. But try not to ask me in front of Linda. She's heard it all before.

Just PT this morning, although Linda walked farther in one run than any other time except the day she went back to our room in the platform walker.

Ellie visited today with Mary. She was her usual, sort of cranky, self. So it was kind of taxing. The first 15 minutes with her are always just great. Then she becomes herself again.

Ellie has been asking to watch Babylon 5 for 3 months. It was something the three of us would do in the evenings together. So I attached the DVD player to the big screen TV in the day room and started one of the movies, In the Beginning. We didn't finish it. The truth is, Ellie doesn't care for the show nearly as much as the narrated beginning, so she usually loses interest. But we watched for a while. I think next time we will bring one of the video game consoles back to the room. The common area has too much noise for really watching TV.

Linda and I were going to go to the coffee shop this afternoon, but Linda was too tired after visiting and wanted to lay down for a bit. We decided to go to dinner at Pizza Hut instead. We went to the same one we went to before--yes, the one with the totally-not-accessible bathrooms. Linda said the pizza was good, and we can walk well enough to use the bathroom more easily now. The pizza was good.

I was disappointed that we didn't go out for coffee, so Linda and I went after pizza. We shared a small white chocolate mocha and a piece of cheesecake. It made me feel better.

Saturday, May 08, 2004


Just for you blogger addicts: We had therapies today, both PT and OT. Physical therapy consisted of the standing frame, and occupational therapy was work on rolling over, which Linda does better all of the time. She can even roll in bed sometimes now.

We went to the Thai restaurant for lunch with Ellie and Marilyn (sort of for Mother's day, I guess). That was pretty taxing, but we did get to know most everyone in the place. Ellie played with people's babies and toddlers, and she just sort of went up and flirted with anyone else who would pay attention.

Ellie really didn't want to be separated from us today when it was time to leave. She insisted that Mom and Dad come home, and she accompanied it with huge crocodile tears to make her point. I don't think she was actually more upset than 2-year-olds get about anything they can't have, but she did get Linda crying. Because of the labile emotion thing, Linda can't generally watch a person cry and not join them. It's sort of like those people who can't resist sympathetic puking in certain situations.

We napped for a bit this afternoon since we were both wiped out. Then we had a few visitors, which was really nice. This evening, we've just been reading a bit, but now I'm off to do a bit of grading. I'll be glad when that is done.

Thursday, May 06, 2004


Today was the first time I dreaded driving back to Rusk. Thursdays are case conference days, and that means they talk about going-home dates. That usually means a fight between me and Linda. Thankfully, I was wrong this time.

We haven't been told yet, but I noticed that Linda's going home date on the board was changed to June 2; another two weeks apparently. Linda suspected that she was going to be extended after talking to the doctor this morning, and it appears she was right. It's the right thing to do; Linda is still improving well and she doesn't really have the skills she should have for going home yet.

I'm glad of course (except for having to sleep on that cot two weeks longer), as will be her friends. She seems to be a bit disappointed but not overly much. I notice that she readjusts to the new dates very quickly. As usual, she assures me that this is the last extension, just like the previous one and the one before that. I know better than to disagree with her now. We'll just work hard and see what happens.

She had a good day of therapy. She worked on exercises with a short baton to see if she would be ready for "dowel group." She wasn't quite strong enough for that yet, at least not sitting, but she was pretty successful while lying on the mat. Her OT was pleased.

She tells me that she did some more walking with her walker today and it sounds like that went pretty well also. So I think she had a pretty good day.

One other note: Linda has adjusted to the prism on her glasses. Actually she did some time ago and I forgot to mention it. She started out wearing it for an hour or two in the mornings. She also wore it for going out, because people stared a lot at her patch. After about 5 days, her eyes were tracking together quickly and she found the prism as good as or better than the patch. She reports that the double images without the prism are getting closer together, but she still prefers to have the prism for now.

I'll have to get a few new pictures since she looks more like her old self than ever now.

Wednesday, May 05, 2004


Well, Linda was very proud of her performance yesterday. She sat up from flat on the mat 3 times.

This afternoon, she did the stairs (much improved from last week) and followed with 80ft in her walker. We happened to go by the main doc on the way and he was quite impressed. After that, she spent her OT session doing weight training. She is getting stronger all around.

The last therapy of the day was speech. We worked on Linda's vocal range and had her do Mary Had a Little Lamb again. It's pretty rough, but recognizable; and it was a bit better than last time.

This afternoon we taught Mary (i.e. twin sister) how to do transfers with Linda. Someone else can lift Linda around for a change.

Case conferences are today. They decide going-home dates at them. Even if they change Linda's, I think she will insist on coming home on the 19th. So it looks like she's going to need a wheelchair for going home. She can walk, but there is a difference between being able to walk and walking all of the time (and safely without assistance). I'm sure we'll work it out.

Monday, May 03, 2004


It's a good thing Linda took it easy this weekend, because she hit everything hard today. In OT this morning, Linda did weights. She keeps getting stronger, and her form is better as her coordination improves. We started on the tricep machine. She sits between two handles which she presses down along her sides, like a 'dip,' only sitting and further apart. The second machine was like a pull-up. She wheeled under a bar hanging from a cable which runs over a pulley to a stack of weight, and she had to pull it down to her lap.

This afternoon she walked with her "regular walker" in PT (so I could see it). It went very well, and the therapist said she should retire her platform walker. So we have now retired two assistive devices, the light-gait and the platform walker. She didn't seem all that pleased with her performance, but I noticed a small crowd gathering to watch her do it. People were very impressed. She sets her standards too high.

In speech, we started working on pitch. Actually, Linda and I had worked on it yesterday, so we already had a bit of a head start. Yesterday, I nagged her over and over with "Do, Re, Mi", moving around the scale and having her try to match the pitches (or even to just make some sounds higher than others). Today we met in the Meredith's office, because she has a keyboard. I thought it went nicely. We found the pitches that Linda can match. She has a range of about 4 steps, just enough for Mary Had a Little Lamb. She can't exactly sing it, but she did manage to match each of the notes in it, more or less in order.

Tonight at dinner, we had a funny moment. At least it was funny to me, so I'll share it. Linda ordered a chicken salad croissant. It was messy and hard for her to pick up, even when cut into parts, so she wanted some help.

"I need help with my sandwich."

I wanted to check my email and update the web site while she finished dinner, so I said, "Well, just tell them, and I'm sure they'll help you. And if they don't, tell them you want to take it back to your room, and I'll feed it to you later."

She still wanted help, so I added that we could have time to do something later or watch a movie if I did computer stuff while she was eating. "So, you gonna be OK?"

She looked at me with wide emphatic eyes and answered, "No, it's on the floor." She had already tried and dropped some of it, and was obviously not being successful. So I fed her the sandwich and I'm here now. After dinner.

While we were eating, she lamented the fallen bite, saying, "I really wanted it too."

Saturday, May 01, 2004

Scenes with Linda


Thursday, driving back from Kirksville, I noticed a lilac bush just before the last turn into Rusk. Technically it is on the grounds of the cancer hospital, but it might as well be in our back yard. Linda loves lilacs (and the sentiment has rubbed off on me) so yesterday we wheeled over to smell the flowers which are in bloom right now.

The first thing I can share is that it is very hard to roll a wheelchair on grass. Really hard. Luckily I only had about 12 feet of it. We just went backward. I brought her as close as we could get without rolling in the mulch and then I bent down the boughs for her. She said, "It's like smelling Ellie."

Since I am a very literal person, I responded with, "Do you mean that Ellie smells like lilacs, or that it is nice like smelling Ellie?"

"It is nice."

One of the grounds keepers drove by on a motorized carts and snapped off a flower for us, so our sink has the scent of lilacs right now. We commented on it at lunch, and one of the therapists is a huge lilac fan as well. She said her family has a wonderfully fragrant indigenous lilac. She is going to bring us some cuttings the next time she is home so we can have one of our own. Is that cool or what?


I've been thinking about Linda's desire to go home since our fight, and since mentioning it to Dr. Joe, the psychologist. When we were leaving Rusk to go to the coffee shop this morning, I mentioned that Rusk must feel a bit like a prison. You have to sign out, but you can't really stay out. You have to be back for medications and therapies, and you have a 9pm curfew.

Linda said, "Not being able to talk is more of a prison."

Love Actually

The movie Love Actually just came out on video, and we have been waiting for it (since seeing the movie in the theater). Today I grabbed a copy, propped the bed up tall, and we watched it on a mini-DVD player.

The very first frames in the movie show people kissing at the airport. Linda cried. She's vulnerable to that kind of stuff now because of the whole labile emotion thing. I recognized it right away, and asked her if she wanted me to pause the movie. She didn't, so we kept playing and she kept crying--until we started laughing.

So, I am laughing, and Linda is crying and laughing. I asked her, "How am I going to take you to Harry Potter?" The next movie comes out in June.

She laughed, "I don't know!" We decided that we'll just have to sit in the back of the theater.

Actually, she's just balances me out now. I tend to laugh at non-funny points of movies--and way too loud. I suppose we'll just be in the theater next to each other with her crying and me laughing.
Quiz solution

It was recorded in the comments, but if you missed it. The most dangerous activity people regularly engage in is driving. Here's what I wrote in the comments:

OK, driving is it. Just for context, remember the primary causes of death in the US. At the top of the list are lifestyle things I think, like heart attacks and cancer. Right behind is car accidents.

Rusk is like a living museum of car accidents (plus a few random things like the strokes). I asked the PT if he had a sense how many wore a seat belt.

He said, stand in the middle of the building and look south. They had seat belts (spinal injuries). Look north. They didn't (brain injuries).

Except for Linda and a poor fellow that was the victim of a chiropractic neck manipulation that severed the vetebral arteries, you can pretty much guess that any young person in the building had a car wreck.

Speaking of chiropractic, according to one source, you are 5 times as likely to have a stroke within one week of a chiropractic adjustment of the neck. Something to think about.
What a week

Linda says this was a boring week. I felt good about it though. Linda says, "I did not do anything neat." That's probably true. Linda can pretty much do everything now, and the focus is starting to change to getting stronger. On Wednesday, she did a lot of weights with her arms and lots of squatting exercises for her legs. She's been pretty much a noodle since.

This morning, finally, Linda seems a bit less tired. I asked her if she wanted to type, but she said no. Typing is very exhausting, and she wants to enjoy her "not tired" feeling a bit longer. I may be able to talk her into it this evening.

We had some big firsts this week. Linda tried the stairs for the first time. Fred was a bit reluctant. He likes to save the stairs for last because they are the very hardest thing, and he doesn't want it to discourage patients. But Linda is pretty hard to discourage, so he was OK with it. It took three of us, plus Linda, to get up and down 4 steps. So we did it twice of course. It was a lot of work for everyone, but especially for Fred and Linda. I just now asked Linda if the stairs were actually the hardest thing she has done yet, and she said, "Oh yeah, no contest."

Linda is feeding herself all of her meals now. We just cut up her food and arrange it, and then she pretty much goes. It's a bit messy, but not as messy as Ellie used to be. She'll probably just graduate from feeding group soon and get a little help from me or the nurses instead. She doesn't really need feeding group for swallowing any more, and we have for some time been free to eat wherever we like.

Speaking of eating, Linda is now officially allowed to use a straw. The order was recorded early this week or late last week. She had been cautiously using one for some time successfully. She was also changed to a regular diet from mechanical-soft (which wasn't bad either). She can pretty much eat whatever she likes, and she does. She orders Mountain Dew with every meal except breakfast. Last weekend, I was commenting to my aunt and said, "I think she feels like with everything that has happened she is allowed to have Mountain Dew for every meal if she likes." I noted that she never skips dessert either. Linda looked over and very clearly said, "I can have anything I want." It had a distinct air of entitlement to it.

Speech is going pretty well. Linda is getting easier to understand. Her "pressure consonants" like P,B,T,D,K are getting better and that really helps. We also have a lot to work on. She still speaks in a monotone for the most part and loses breath support quick. But she does just get better and better at everything, so there's no reason for despair yet.

We have nothing on the schedule for today other than meals. We'll work on something--we always do. But it seems like a good day for getting out some. This time when we go to the coffee shop, she'll be able to drink her own coffee. Cool.