Dan is at St. Paul's now (until at least early next week most likely). He has an EMG tomorrow or Friday and will find out about the muscle biopsy tomorrow as well.
He's in the Providence Wing, level 7B, room 25. Visiting hours end at 8pm.
More to come...
Wednesday, May 31, 2006
15
I'm going to St Paul's Hospital. I have no idea how long I will be there, but my GP thinks it won't be more than a few days.
They don't have Internet access there, so Jer might post a few updates on the blog if I end up in the hospital for a longer time. If you e-mail me, I probably won't respond for a while. Phone calls are welcome though.
They don't have Internet access there, so Jer might post a few updates on the blog if I end up in the hospital for a longer time. If you e-mail me, I probably won't respond for a while. Phone calls are welcome though.
Tuesday, May 30, 2006
14
I feel overwhelmed. So much happened last week that I just didn't have time to write about.
I'm working from home this week. I really have to say how supportive my company and my coworkers are. This is the first place I've worked where employees are not treated as resources. My productivity has gone down significantly, but they are letting me take time off to go see doctors and take care of myself. Now, they gave me a company laptop so that I can work from home and continue to get paid. If I go on disability, that puts me into a negative cash flow (assuming I'm eligible - there is no diagnosis). There is no way I would have had the same support from management at my previous company, and because of its remote location in Langley, getting out to see a doctor would have been a day off rather than a few hours off.
At my parents' insistence, I went to see a naturopath last week. Naturopaths don't really deal with hard facts, but after seeing him, he thinks that I have a virus. He can't identify what the virus is, but after doing his tests, believes my pancreas is a problem. He suggested an IV vitamin C, which will kill off viruses. He seems very confident that he can reverse the problem. My faith in naturopaths is very low, but when the genetic test result came back negative on Friday, that gave me a bit more faith in what they do.
I also now have someone helping me with my diet, who I met while at the naturopathy clinic last week. He put me on a smoothie diet, with a bunch of supplements to make sure I'm getting all the nutritional value I need. They taste quite good and are very sweet from the natural sugar in the fruits. I'll probably get sick of smoothies very soon though.
I did a Vitamin C treatment yesterday and also lied in a hyperbaric oxygen chamber. The chamber is supposed to help regenerate my nerves. It makes my fingers tingle. I will give the alternate medicine a week or two to see if it helps. My mother is so insistent that naturopathy is the way to go because "people die in hospitals."
The doctors at the hospital want to admit me as an inpatient. They are worried that I might fall and break something in my body. If I do and it puts me in a bed, then my muscles will atrophy faster since they would not be used at all. They can also do their tests more effectively, since they can order the test and get the result back right away, instead of making an appointment in a few weeks and waiting another week for the result as an outpatient.
I'm working from home this week. I really have to say how supportive my company and my coworkers are. This is the first place I've worked where employees are not treated as resources. My productivity has gone down significantly, but they are letting me take time off to go see doctors and take care of myself. Now, they gave me a company laptop so that I can work from home and continue to get paid. If I go on disability, that puts me into a negative cash flow (assuming I'm eligible - there is no diagnosis). There is no way I would have had the same support from management at my previous company, and because of its remote location in Langley, getting out to see a doctor would have been a day off rather than a few hours off.
At my parents' insistence, I went to see a naturopath last week. Naturopaths don't really deal with hard facts, but after seeing him, he thinks that I have a virus. He can't identify what the virus is, but after doing his tests, believes my pancreas is a problem. He suggested an IV vitamin C, which will kill off viruses. He seems very confident that he can reverse the problem. My faith in naturopaths is very low, but when the genetic test result came back negative on Friday, that gave me a bit more faith in what they do.
I also now have someone helping me with my diet, who I met while at the naturopathy clinic last week. He put me on a smoothie diet, with a bunch of supplements to make sure I'm getting all the nutritional value I need. They taste quite good and are very sweet from the natural sugar in the fruits. I'll probably get sick of smoothies very soon though.
I did a Vitamin C treatment yesterday and also lied in a hyperbaric oxygen chamber. The chamber is supposed to help regenerate my nerves. It makes my fingers tingle. I will give the alternate medicine a week or two to see if it helps. My mother is so insistent that naturopathy is the way to go because "people die in hospitals."
The doctors at the hospital want to admit me as an inpatient. They are worried that I might fall and break something in my body. If I do and it puts me in a bed, then my muscles will atrophy faster since they would not be used at all. They can also do their tests more effectively, since they can order the test and get the result back right away, instead of making an appointment in a few weeks and waiting another week for the result as an outpatient.
Friday, May 26, 2006
13
The blood test result came back negative. It's not SMA.
That gives me a lot of hope. Today was the first time I left the hospital not depressed.
The next steps they want to take are a lumbar puncture and muscle biopsy.
That gives me a lot of hope. Today was the first time I left the hospital not depressed.
The next steps they want to take are a lumbar puncture and muscle biopsy.
Tuesday, May 23, 2006
Camping at Harrison Lake
I went camping for the May long weekend, from Friday night to Monday afternoon. I saw a rehab doctor on Friday morning, and when I mentioned that I had plans to go camping over the weekend, his response was, "I don't think so." He didn't actually say "no," so I took that as more of a guideline than a rule. Besides, with my condition getting worse, I want to be out doing things with friends and not staying at home. There will be lots of time for that if I can't overcome it.
I am never going offroading in my Accord again. Next time, we are renting an SUV. It is much less stressful when the vehicle isn't mine. We camped about 35 km north of Harrison Hot Springs, up Harrison Lake. The 35 km were along a dirt logging road, which involved driving through huge sinkholes and three streams, each stream up to a foot deep. Due to some logistics problems fitting everything into the car, we lost a lot of time unpacking and repacking everything and leaving behind things that we wouldn't need, first at Mike's place, then at Amy and Sarah's. We got to the logging road at around 9pm.
Sunset is at around 9pm, so it was dark going down that road. We went through a roadcheck entering the road; all they wanted to know was if we had any open alcohol in the car. After crossing the second stream, we drove up a hill and there was a truck with its headlights shining at us. As I approached within 10m of the truck, blue and red lights flashed on it and a conservation officer appeared out of the pitch black. He took a look at us and told us we were the first people to go past that weren't doing 500 things wrong and to bring more of our friends. I think Amy sitting behind me, holding a tupperware container of homemade cookies, might have helped too. If only he knew what our friends really are like.
I think we arrived at around 11:30. It was raining and it was a long drive going 10-20 km/h in the pitch black, with no way of seeing how deep the streams were in the dark. I could hear the sound of a river when we unpacked, but it was too dark to tell where it was.
The next morning, when I stepped out of the tent, my first comment was, "wow, there's a river next to us!" It was huge and fast flowing. Maj swam across it later in the weekend and ended up about 30m downstream on the other side.
There were about 25 of us altogether, and I am really impressed with the group of people there. I needed a lot of help getting around. I couldn't get out of the tent without someone lifting me up, nor could I get out of the lawn chairs (they were the foldable ones that you sink into). For some of the bigger, stronger guys, they just lifted me up like I weighed nothing.
We had a hot tub going on Saturday. Some of the guys brought an 8'x4' inflatable kiddie pool, a bilge pump, two garden hoses, and about 50' of 3/4" coiled copper piping. They put the copper coil into the hot embers of the campfire, used the pump to pump the water out of the pool through the garden hose, into the copper coil, then out to the other hose and back into the pool. Saturday ended up being the trial run. I think they gave up on it at around midnight or 1am after they couldn't get the water hot enough. Some of the guys tried it anyway and figured it would feel hotter if they did a river dance in the glacier cold river before going into the pool. They started earlier on Sunday and managed to get it hot enough to sit in by late afternoon. It wasn't as hot as a real hot tub, but it was warm enough. I really wish I could move around normally. I want to do all the stupid things that everyone else was doing.
I woke up on Sunday morning writhing in pain in one of my muscles or ligaments in my right leg. Amy went to get Sasha (a RN) who gave me some T3s for the pain. I felt a mild pain on Saturday but it didn't seem like anything. I think I overexerted myself from the drive to the campsite. I drove for more than six hours, and a third of that was constant braking and accelerating on the dirt road. I took T3s throughout the day, and then regular ibuprofen after that. The pain slowly went away over Sunday and Monday, and I haven't taken any Tylenol all day today. There is still a mild pain, but I can live with it. I would rather not take a pill if I can avoid it. The pain is there for a reason to tell me something is wrong, and otherwise I'm just masking the pain and might make it worse by exerting myself too much again.
I am very glad I went. Although it rained for almost the entire weekend, Sunday afternoon was awesome with the sunshine. I spent the weekend with a great group of people. It was really nice being waited on by the girls and having food brought to me, but I still would rather have been able to cook for myself. Thank you to everyone who helped me out over the weekend.
The photos are posted in the photo gallery.
I am never going offroading in my Accord again. Next time, we are renting an SUV. It is much less stressful when the vehicle isn't mine. We camped about 35 km north of Harrison Hot Springs, up Harrison Lake. The 35 km were along a dirt logging road, which involved driving through huge sinkholes and three streams, each stream up to a foot deep. Due to some logistics problems fitting everything into the car, we lost a lot of time unpacking and repacking everything and leaving behind things that we wouldn't need, first at Mike's place, then at Amy and Sarah's. We got to the logging road at around 9pm.
Sunset is at around 9pm, so it was dark going down that road. We went through a roadcheck entering the road; all they wanted to know was if we had any open alcohol in the car. After crossing the second stream, we drove up a hill and there was a truck with its headlights shining at us. As I approached within 10m of the truck, blue and red lights flashed on it and a conservation officer appeared out of the pitch black. He took a look at us and told us we were the first people to go past that weren't doing 500 things wrong and to bring more of our friends. I think Amy sitting behind me, holding a tupperware container of homemade cookies, might have helped too. If only he knew what our friends really are like.
I think we arrived at around 11:30. It was raining and it was a long drive going 10-20 km/h in the pitch black, with no way of seeing how deep the streams were in the dark. I could hear the sound of a river when we unpacked, but it was too dark to tell where it was.
The next morning, when I stepped out of the tent, my first comment was, "wow, there's a river next to us!" It was huge and fast flowing. Maj swam across it later in the weekend and ended up about 30m downstream on the other side.
There were about 25 of us altogether, and I am really impressed with the group of people there. I needed a lot of help getting around. I couldn't get out of the tent without someone lifting me up, nor could I get out of the lawn chairs (they were the foldable ones that you sink into). For some of the bigger, stronger guys, they just lifted me up like I weighed nothing.
We had a hot tub going on Saturday. Some of the guys brought an 8'x4' inflatable kiddie pool, a bilge pump, two garden hoses, and about 50' of 3/4" coiled copper piping. They put the copper coil into the hot embers of the campfire, used the pump to pump the water out of the pool through the garden hose, into the copper coil, then out to the other hose and back into the pool. Saturday ended up being the trial run. I think they gave up on it at around midnight or 1am after they couldn't get the water hot enough. Some of the guys tried it anyway and figured it would feel hotter if they did a river dance in the glacier cold river before going into the pool. They started earlier on Sunday and managed to get it hot enough to sit in by late afternoon. It wasn't as hot as a real hot tub, but it was warm enough. I really wish I could move around normally. I want to do all the stupid things that everyone else was doing.
I woke up on Sunday morning writhing in pain in one of my muscles or ligaments in my right leg. Amy went to get Sasha (a RN) who gave me some T3s for the pain. I felt a mild pain on Saturday but it didn't seem like anything. I think I overexerted myself from the drive to the campsite. I drove for more than six hours, and a third of that was constant braking and accelerating on the dirt road. I took T3s throughout the day, and then regular ibuprofen after that. The pain slowly went away over Sunday and Monday, and I haven't taken any Tylenol all day today. There is still a mild pain, but I can live with it. I would rather not take a pill if I can avoid it. The pain is there for a reason to tell me something is wrong, and otherwise I'm just masking the pain and might make it worse by exerting myself too much again.
I am very glad I went. Although it rained for almost the entire weekend, Sunday afternoon was awesome with the sunshine. I spent the weekend with a great group of people. It was really nice being waited on by the girls and having food brought to me, but I still would rather have been able to cook for myself. Thank you to everyone who helped me out over the weekend.
The photos are posted in the photo gallery.
Friday, May 19, 2006
12
Turns out that the doctor I saw today is an outpatient rehab specialist and not a physiotherapist. He did the usual tests all the other doctors did and then explained to me what was going to happen. He focuses on the prognosis, and he is going based on what the neurologist thinks I have. That means he is going to treat the symptoms and not the disease. He told me that any exercise I do at this point will just make me weaker and I'm at the point where he wants to check me into an inpatient clinic near the BC Children's Hospital to work on my strength. Normally they only accept patients who are already in a hospital. It will be a few weeks before that happens though.
Thursday, May 18, 2006
SMA
This is a pretty good overview of how SMA is inherited. The last paragraph describes what SMA does to the human body. It's really hard to believe that this is what I have with no family history. Both of my parents need to be carriers.
Source: http://www.fsma.org/exp_answer_19.shtml
Source: http://www.fsma.org/exp_answer_19.shtml
Question: What are the dominant and recessive traits of SMA? How does someone get it?
Answer: Dominant and recessive traits are specific terms used to describe different genetic disorders and refer to the way that a genetic disease is passed on from one generation to the next or inherited.
How are traits inherited? Each cell in our body contains a nucleus that houses DNA on structures that we call chromosomes. Each chromosome comes in two copies, one copy was passed down from our Dad (from the sperm cell) and one copy is passed down from our Mom (from the egg cell). This means that we have two chromosomes 1, 2, 3 etc. Genes, which are contained on our chromosomes, code for all the material (proteins) in a cell that tells it what to do. In general, we have two normal copies of each gene (one inherited from each of our parents). This basic information will help me explain the difference between a dominant and a recessive trait. For some genes, we absolutely need the two copies to be functional. For other genes, we are OK even if only one copy is functional. Mutations are changes in DNA that renders a gene semi-functional or completely non-functional. A dominant trait is one where we need both genes to be functional. For example, Amyotrophic Lateral Sclerosis (ALS) is an autosomal dominant trait. Individuals with ALS have one normal ALS gene and one ALS gene that has a mutation. Thus, all individuals that have a mutation in the ALS gene will most likely, at some point in their lives, display the symptoms associated with ALS even though they have one normal gene.
Childhood-onset SMA is a recessive trait. SMA is caused by mutations in a gene that is called SMN (for survival motor neuron gene). We only need one normal SMN gene for our motor neurons to develop and function normally. Individuals with SMA have two mutant SMN genes because they inherited one mutant gene from each of their parents. Because their parents each had one normal and one mutant SMN gene (they were carriers), they did not have SMA because one copy of SMN is sufficient. Thus SMA is a recessive tait, the fact that we have a SMN mutation stays hidden (recessive) until we produce a child that inherited the SMN mutation from each of his/her biological parents. So SMA is an inherited disease that is passed on from parent to child through their SMN gene. Both parents have to be carriers, that is, have one normal and one mutant SMN gene. In a recessive trait, carriers are asymptomatic (do not have any SMA symptoms). About 1 in 50 individuals are SMA carriers. This means that (in terms of probabilities) in about 1 in 2,500 couples, both would be SMA carriers. Each time two carriers have a baby, there is a 25% chance that the baby inherited both SMN mutations and will have SMA, 50% chance that the baby will be a carrier, and 25% chance that the baby inherited both normal SMN genes. Thus, for a recessive trait, each time that two carriers produce a child, there is a 1 in 4 chance that the baby will have the genetic disease in question.
SMA stands from spinal muscular atrophy. Because SMN is very important for normal functioning of motor neuron cells in the spinal cord, when SMN is almost completely absent, spinal cord motor neuron cells die. When these cells die, they stop sending messages to the muscles they are responsible for. Motor neurons are the batteries of muscle and tell muscle when to move and when to rest. Because the muscle is no longer receiving these messages, it wastes away or atrophies. I hope that this answers your questions.
Louise R. Simard, Ph.D.
Associate Professor
Centre de Recherche de l'Hôpital Sainte-Justine
January 2005
Wednesday, May 17, 2006
11
I saw my doctor this morning. He reviewed the blood test results from last week and everything looks fine. The neurologist who did the EMG testing on me a few weeks back wrote a long report on me and he showed me some of the things she wrote. She believes that I have Spinal Muscular Atrophy Type III. Normally, it's supposed to affect people in their late teens and early twenties and she thinks I've had it for a long time without noticing it. It will be three weeks tomorrow since I gave a blood sample for the genetic test, and still no result. My doctor has dealt with a few cases of ALS (which share some muscle weakness symptoms), but he's only seen this in a textbook before.
I will be seeing a physiotherapist on Friday. Hopefully, there are some exercises I can do that will help.
Also, I finally figured out yesterday how to get to my classroom at VCC from the Pender St entrance without going up any stairs. It takes a long time, but it can be done. I fell down getting off the trolley bus when I went home last night. The bus driver had to help me get back up. I'm looking forward to seeing those new low-floor trolley buses go into service.
Jer is now all moved in. I think he has watched more TV at my place in the last few days than I have in the 6 months I've been living there.
I will be seeing a physiotherapist on Friday. Hopefully, there are some exercises I can do that will help.
Also, I finally figured out yesterday how to get to my classroom at VCC from the Pender St entrance without going up any stairs. It takes a long time, but it can be done. I fell down getting off the trolley bus when I went home last night. The bus driver had to help me get back up. I'm looking forward to seeing those new low-floor trolley buses go into service.
Jer is now all moved in. I think he has watched more TV at my place in the last few days than I have in the 6 months I've been living there.
Wednesday, May 10, 2006
10
I have a roommate. Jer is going to stay at my place for a few weeks. My parents have a futon mattress that they use to have guests over, and they dropped it off tonight. I still need to work out some logistics, like finding a place for Jer to park his car, but hopefully everything will work itself out.
Tuesday, May 09, 2006
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.
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.
Sunday, May 07, 2006
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.
I am seeing a GP tomorrow afternoon. I'll definitely bring this up. I have lots of questions.
Wednesday, May 03, 2006
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.
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.
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