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.
Monday, August 07, 2006
Thursday, August 03, 2006
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.
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.
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.
Monday, July 31, 2006
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.
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.
Sunday, July 30, 2006
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.
Friday, July 28, 2006
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.
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.
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