9

Yay! More blood tests! I hate needles. The GP I saw yesterday just moved here from Port Alberni and has been practicing for 9 years. He seems good. He ordered a chest X-ray and abdomen ultrasound because of the weight loss and also some more blood tests. I did the X-ray today, but the ultrasound won't be for 2 weeks.

The neurologist I saw today took my information and did the same examination all the others did. He thinks it's a myopathy or atrophy and that it's genetic. Both my parents have to be dormant carriers of the genes in order for that to be true. I asked him to just schedule a biopsy without waiting for the genetic blood test results. If it ends up conclusive then we can always cancel it. Otherwise that's another week of waiting since I'll be further back in the queue to get the biopsy done. Whatever I have, it's rare.

He is going to refer me to a physiotherapist who can hook me up with some exercises to tone my muscles. Any other exercises could make things worse.

8

I just weighed myself. My normal weight is 165-170 lbs. I'm at 141.6. That's 25 pounds under my normal weight. I know I've lost weight, because I've been wearing my belt at 4 notches instead of 2 for the last month (about a 2" loss on my waist). I never thought that it was that much. A friend also commented that I'm looking really skinny.

I am seeing a GP tomorrow afternoon. I'll definitely bring this up. I have lots of questions.

7

I had my parents over at my place for dinner tonight. They are so worried about me and want to spend time with me, so I invited them to my place. To get to my apartment after work, I got off the bus and then turned into the lane to walk over to the entrance with no stairs. I missed my footing a few feet into the lane on a pothole and went down. Since there was no way I could get up on my own, I called out to the first person who walked past and asked for a hand getting up. The first person was this black dude who came over and offered his hand to help me up. I don't have the strength in my legs to get up with just a hand for support and he had to pull my body up.

As coincidence would have it, my parents drove into the lane right as he was lifting me up. They stopped right away and jumped out of their van. By then I was standing and stable but they ran to me and my dad grabbed me. The guy took off and I didn't get a chance to thank him. I think they scared him away, rushing over so fast. My mother later told me she thought I was in a fight with him. That's ridiculous. I called out a thank you but I'm not sure he heard me. That really sucks, and I feel bad, because most people are conditioned to say "no" whenever approached on the street, and this guy helped me out right away.

It's really easy to imagine right now how hard it would be for someone in a wheelchair to get around. I notice the little things like the sidewalk ramp depressions on the street crossings for people to wheel themselves up on.. things that are just taken for granted. On the flip side, I also notice how relatively easy it is to get around; elevators are everywhere, and there are ramps almost everywhere that there are stairs. Twenty years ago that wouldn't have been the case, but it still doesn't make it easy. I'm taking a longer route to walk to work from the bus stop in the morning, but there is less chance I will fall down.

Last week I was really depressed from going to see a bunch of doctors and not knowing what was happening to me. Thursday and Friday really lifted me up, as did Sunday. I was really depressed on Thursday and didn't even bother going to work after finishing with the neurologist. I went to the opera on Thursday night and even though it's not my thing, I'm very glad I was able to spend time with some close friends. I would go again just for that. On Friday, I went out to the Caprice and even though I sat for most of the night, I still went up and danced a bit, holding one of the girls' hands to keep stable. Besides.. someone had to watch the alcohol while everyone was up dancing. I also now know that it takes two Heinekens for Mike to go up on the dance floor. On Sunday, a new friend I met about a month ago called me up in the afternoon because she had thought of me and had bought an herbal treatment that she thought might help. She wasn't home when I picked it up but had left a card with it. That card is now in my living room next to my photos.

I will do something special for everyone close to me. I just need to think of what to do.

6

The neurologist I saw on Monday (a different one from today) wants to see me again. His receptionist called me earlier and she set me up with an appointment for Tue May 9. That's a long time away. She'll call if there are any cancellations, so I can get in earlier.

5

I just got home from seeing the neurologist this morning for EMG testing. Having electricity pulsed through my nerves and then long needles stuck into my muscles is not a pleasant experience. She doesn't have a diagnosis but said it's not due to lack of exercise or an injury and at this point is likely a problem with the muscles or the connection between the muscles and the nerves. She ordered a genetic blood test for spinal muscular atrophy but told me not to read too much into it yet. The blood sample goes to the BC Children's Hospital for analysis and takes two weeks to get the results back. They may also do a muscle biopsy to analyze a sample of my muscles. I won't know anything for a while, until they call me.

I talked to my mom and told her what happened but left out what the blood test is for.. I don't want to worry her too much. She is certain that there are no muscle problems in her family history.

The benefit of having a unique last name

BC Hydro just contacted me. I worked for them back in the Fall of 2002 and I am eligible for some sort of profit sharing program with their employees. They didn't have my current information on file and apparently I never responded when they send me a letter a few years ago, so they were going to write off the payout. But my name stood out and someone from HR looked up my last name and contacted my parents who forwarded the message to me (since I'm not listed in the phone book) . There is now a cheque for me on its way in the mail.