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.