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.

28

The word is in, and I'm transferring to GF Strong Monday morning at 9:30.

I was also able to stand up from a chair on my own today, but it was about 2 feet high, above the average height of a chair. Still, it's progress. My goal is to be able to get up from a sitting position independently within a few weeks, using both my arms and legs.

Unfortunately, it's looking like I won't make the Seattle Exchange this year. I was looking forward to it. I'll still be sure to get a T-shirt.

27

The head nurse for my ward came in today and told me I'm number three in line for GF Strong. The two ahead of me are from VGH but may not be ready to go yet, which means I might jump past them. The soonest I'll transfer is Friday, but that is unlikely and it will probably be some time next week. Games night might just be at GF Strong next week.

I spoke with one of the neurologists yesterday and asked him how long he thinks it will take for me to get back to 100%. He said it could be a year. Next, I asked him how long it would take to walk without a walking aid. His estimate was three to four months. Nerves regrow at a rate of about 1mm per day.

When all of this is done, I want to go travelling. I'm thinking Thailand in February or March 2007 if I'm in a good enough condition by the new year. I want to ride an elephant while I'm there. I also want to sleep in a hut on a beach with the sound of the waves nearby. I'm sure Thailand also has a lot of temples and cultural things that would also be worth seeing. I need to do some research.

26

I won't be transferring to GF Strong until Thursday at the earliest. The intake nurse at GF Strong is off until Wednesday, and she is the one who can say if it will be days, weeks, or months before I can get in. I'm hoping for the prediction of DAYS.

25

Wow. Seven comments within a day of the last post. Thanks for all the kind words.

I'd like to think that recovery will take a few weeks, but the reality is that it will take much longer and I will probably still be doing physio even after I get released from GF Strong. Things are still on an upswing, which is definitely a good thing.

I've been thinking of painting my apartment, since it's been empty now for nearly six weeks and will be for the near future. Everything is white, and there are lots of corners, so I can have fun with different shades of colours on the different walls and have it painted while I'm gone. I've got a pile of colour samples, mostly earthtones ranging from yellows to browns along with a few greens and greys. I think the kitchen would look good with a brick red colour on the wall with the Bua print and a grey theme in the bathroom. I need to consult someone with actual interior design skills first before I buy any paint.

24

All of the TPS Reports have been completed and I'll be on my way to GF Strong as soon as a bed opens up there. The schedule at GF Strong will be an hour each of physio in the morning, afternoon, and late afternoon/evening. Any treatments I might require will be done at VGH, since it's closer. The dialysis centre is right across the hallway from Amy's lab, so I can drop in on her if any further plex treatments are necessary.

GF Strong is located at 4255 Laurel St, just off Oak St and W 26th Ave. The #17 Oak will take you there from downtown. The easiest way to catch it is to get off the Skytrain at Granville St and walk one block down to Pender St, where you can get on between Seymour St and Richards St.

It looks like they have stricter rules about leaving the facility than St. Paul's, where I've been able to come and go as I please, as long as someone is there to help me and I have no tests or treatments scheduled. Return times for evening outings must be before 9:30pm Sun-Thu and 11:15pm Fri/Sat, although it says that special cases may be made. That's all I need to know. :) There is no word if I can get Internet access there.

I've been doing some work with the physiotherapists almost every day. Yesterday and today, we went to the physio gym for about half an hour and did some exercises. I was able to use the exercise bike, and even though it was at its easiest setting, they were surprised that I was able to do it. My biggest strength gain has been in my arms being able to sit down. As long as there are bars on both sides of the seat, my arms are strong enough to hold my weight while I sit down. That's something I couldn't do a few weeks ago.

23

I finally posted the photos from Amy and Sarah's birthday. Now that I have day passes at the hospital, I can go home and have Internet access. It is very convenient that the hospital is three blocks from my home.

A doctor came by yesterday and was surprised that I was still there. He thought I had been transferred to GF Strong already. It sounds like I'm going there this week, but no one can tell me when.