39

I am now medically cleared to drive, and my discharge date seems to be finalized for Fri Sep 1.

38

I went swimming last night for the first time in a long time. I wasn't sure if I'd still be able to swim in my condition. The pool is modified for people to get in and out on a ramp, with wheelchairs that can go underwater. The deepest it gets is below my shoulders, perhaps a little under five feet. The weightlessness of the water meant I was also able to walk through it. It's been a long time since I've been able to walk normally, and it felt great to be able to walk around without holding on to anything for support. I'm going swimming in my pool at home when I'm out of GFS on the weekends. I've never used it before and I don't remember if there are stairs or a ladder to get in, but as long as someone who can swim and can get me out of the pool is there with me, there shouldn't be any problems.

My stay at GFS has been extended to the first week of September. This is good, because it means I get much more physiotherapy time than as an outpatient, but it also delays my return to work and a normal paycheque.

I've been pressing my doctor for a prognosis on how long it will take to recover and how well I'll recover, but he won't commit to anything. The best I got from him today is that the nerve regrowth will take up to two years for some longer nerves that extend down my legs, and at that point, whatever condition I'm in is probably where I'll be at for the rest of my life.

37

Krista came by to visit on Friday afternoon. I love conversing with her, she is a very open person to talk to and I feel comfortable discussing almost anything. She did make me realize how hard it is for some people to come to the hospital to visit a friend or family member, especially without the social support of another friend coming along. I know some other friends who have been avoiding seeing me in the hospital for mostly the same reason: they feel too uncomfortable being in hospitals. Krista wrote about her visit in her blog. Thanks Krista for the kind words.

I brought my camera to GFS. I'm going to take some pictures of what rehab is like and post them in my photo gallery. Then, those who don't feel comfortable coming here can see what they're missing out on.

Some time this week, I'll be meeting with my doctors and reviewing the plan moving forward. As it stands, I'm being discharged back home in two weeks. I will still continue rehab as an outpatient, possibly twice a week. It means I will go back to living alone, which makes me a bit nervous. There will be no call button to call a nurse if something happens to me. The other problem will be on the social side. I'll be working from home all day with no human contact other than over the phone, then stuck in my apartment at night, again, with no human contact. The doctors are telling me not to drive, and if I give them the impression that I will, there are steps they can take to have my driver's licence revoked. I'd rather not go through the hassle of getting it back. I'm not getting my freedom back any time soon.

36

It occurred to me how fortunate I am that none of this illness has affected my cognitive skills. I had to practice standing for extended periods of time during OT today and was given some cognitive games to stay occupied while I stood in front of the table. My occupational therapist was impressed with how easily I completed them.

Later, during lunch, I observed some of the people in the brain injury program in the dining room. Some of them had trouble speaking; some had trouble with motor skills; and some had lost intelligence. Given the two evils, I'd much rather have the physical problem.

Now, if I could only pinch those clothespegs enough to get them onto the bars.

35

My doctor told me today that generally the longer a recovery takes, the less chance there is of a full recovery. I've been at GF Strong now for nearly three weeks, and there is definite improvement since the PLEX treatment. My endurance has gone up, and I am more mobile than at my worst, but I haven't gone through any significant increases in strength. That's disheartening, because my tentative discharge date is just over two weeks away. The date could get pushed back, but only if I'm not in a condition to live independently at home. I will continue to be an outpatient, going back for physiotherapy twice a week.

My occupational therapist did a home visit with me today to see my apartment and what needs to change in order for me to be independent in my home. She suggested raising some surfaces, like my couch and bed. There are also special grab bars that can be installed on my bed to help me stand up. The big problem will be in the kitchen. I won't be able to carry heavy pots (or even light pots) from the oven to the opposite counter. Shopping will also be an issue, but there is a Choices a block away. It will mean many small purchases throughout the week that I can carry back.

It looks like I may also need to investigate the possibility of buying a wheelchair. I was hoping to just rent one for travelling long distances until I am well enough, but I may be stuck with one for longer than I'd like. I am supposed to meet with some dealers next week to get more information and find out costs, although I already know what a decent wheelchair costs.

As for work, they already have a laptop lined up for me so that I can work from home. I can't work from home indefinitely (and there will be times I'll need to be there for things like meetings), so I've looked into transportation options. The paperwork has already been submitted so that I can use the HandyDART service, but they are very rigid and only operate until 7pm. There is also one bus route that might work to get me to work in the morning, but it lets me off a block away, and I need to do some recon to see if I can physically travel that block on my own. Getting to the bus stop to go home will be more difficult, as it requires going down a steep hill, where I will lose control of the wheelchair. I live only eight blocks from work.

I've lost my freedom. I can no longer just jump in my car on a whim and go somewhere. Even though I can go home from GF Strong on the weekends, I'm stuck at home on Saturday nights because I have no way to get where I want to go - and typically can't participate because it requires full mobility.

34

My doctor came to talk to me this morning. We discussed my condition, and he said with my atypical symptoms (to any known condition) and because my motor neurons are affected, that it could be many years before I get back to normal, if I do. That's different from the "about one year" I've been hearing before. Perhaps they were expecting better results on the nerve conduction test last week. It also reminds me that my neurologist used the word "chronic" in the place of "acute" for the first time when we were discussing the test results last week. I had selectively forgotten about that. I'm good at pushing things I don't want to think about out of my mind.

I went over to VGH this morning for a follow up IVIG treatment. I'm supposed to get these every four weeks as a preventive measure. I don't really understand the need for it, but then the doctors don't really understand why IVIG works either.

33

Tonight, I was able to stand up from sitting on my bed at home. I haven't been able to do that for months.

32

I turned on the TV in my room this week. I very rarely watch TV and it's amazing how little there is to watch, even with nearly 60 channels to choose from. I didn't even recognize most of the shows. TV just sucks you in and consumes so much time that could be better spent on other things.

The nice thing about GFS is that they have devices to measure my strength, instead of using more subjective tests. The OT assessed my grip strength when I was transferred here, and then again this week, with signs of improvement. The reading was at 30 lbs for my right hand, about 25% of what someone my age should be at, but it still shows improvement in a period of just over one week.

I saw my neurologist again on Tuesday, and we repeated the nerve conduction test. The last test was in mid-July, and this test showed roughly the same results as the previous one, which means that there is no further degradation in my nerves. All the previous tests always showed poorer results than the one before. I'll have another nerve conduction test in about a month to see if there is improvement.

I started practicing walking in the physio gym without locking my knees. I've been out of commission for so long now that I have to retrain my muscles to walk, so that I don't limp or lean side to side from locking my knees.

Things seem to be improving, but it is very tiring. I'm going home for the weekend.

31

Today was a busy day. I did a one hour and two half hour PT sessions, as well as an hour of OT. I've added some directions on how to find me to the side bar. Visitors are welcome during the day, but I very likely won't be in my room. The staff have no problem with visitors in the rehab areas, so just meander down if you can't find me. The target I've been told is 3-4 weeks as an inpatient, then moving back home and continuing as an outpatient. However, that estimate can change, depending on my progress. I may be back home in time for my birthday.

I was chatting with the occupational therapist today while doing exercises and she mentioned that most of their GBS patients come from the valley, like Langley and Abbotsford. That's an interesting anecdote, since I worked out in Langley for 2.5 years.

30

I saw the doctor today, and it looks like I will be here for 3-4 weeks. It will take a few months to be able to walk without an aid, but I should be at the point of being able to walk short distances (like within my apartment) when they discharge me. A full recovery will still take a long time. The prognosis is good.

29

I'm now at GF Strong in the neuromusculoskeletal wing, room 440. Their priority is to take patients from VGH, which delayed my transfer from St. Paul's. The facility is nice and the atmosphere is a lot better than the hospital. One of GF Strong's criteria is to take patients who actually have the motivation to get better, so that they are not wasting their time on people who won't try. There are also no street people here. I don't have a phone next to my bed, so calls will have to go to my cell phone. They will have to be kept short before 7pm as I only have a limited number of daytime minutes.

The food here is far superior to St. Paul's. Lunch and dinner are served in the cafeteria, and you can just keep going up and getting more food. It's like two buffets everyday. Tonight, I had three slices of meatloaf, a side salad, rice, cooked vegetables, jello, and pudding. I also got a night-time snack delivered that I haven't eaten yet. It's some sort of meat sandwich. There is a fridge stocked with juices, puddings, cheese, and bread for the taking. At St. Paul's, once dinner was cleared away, there was no food on the ward until breakfast at 8:30 the next morning. I certainly won't starve here.

We have a computer lab in the building for patient use. I can check my e-mail without having to go home. Unfortunately, there is no wireless access from my room. Otherwise I would be setting up my VOIP line there.

Games night is on for tomorrow, probably around 6:30pm. Everyone is welcome.