Tuesday, May 24, 2011

Hello Again!

Hi everyone,

I know that there might be some out there wondering what happened to me. Well unfortunately the news is not that great. I took some time off because I was facing some health concerns which turned out to be real concerns. Here's the story:

I have been tripping a lot, a lot. I figured I was just clumsy, but one of my falls really hurt my hip and ankle which left me limping. I had been going to physio for the issues with my hip, but it wasn't getting better. I also saw a chiropractor who really did help my back.

I also noticed that when my hands were cold I couldn't use them properly. I could still use them, but couldn't do things that required a really fine dexterity like undoing buttons.

Anyway, one day I fell and could not get myself back up. I mentioned this to my chiropractor, and she offered to give me a neurological exam. When she did we found that I could not lift the toes on my right foot, could not lift my right foot, and my left one was not fairing much better. Instead of trying to treat me she sent me to my doctor. I made an appointment that day, and saw my doctor the net day.

My doctor did another neurological exam and referred me to a neurologist. The neurologist he sent me to did a very in-depth exam and noted that my hands were fairly weak as well. He ordered some MRIs, a nerve conduction study and an electromyography, which is not a fun test.

The neurologist who did the nerve conduction study and the electromyography believed that I had ALS, aka Lou Gehrig's disease, but sent me to the ALS clinic in Toronto for more tests before making it official.

Well I went to the clinic, and after several more tests it was concluded that I do have ALS. Obviously I'm not particularly happy about it, but at the very least I know what is going on. For those of you who don't know ALS is a syndrome which causes the death of the motor neurons in the brain and spine. This causes a progressive weakness in the limbs, and can cause problems with the mouth such as speaking and eating (I've avoided this one), but it can also eventually affect the diaphragm which affects the lungs.

I've been told that ALS usually affects people who are 40+, but I'm only 27. My doctor also told me that because of my age I can expect a slow progression so I probably won't need a wheelchair for a few more years, and can expect a fairly regular life span, but I will need a lot of assistance devices around the house, and will need to get in touch with the disabilities office at my school.

They don't know what caused ALS in my case, only 10% of all cases are genetic, and the other 90% are still a mystery, and there is still no sure for ALS. My doctor has given me medication which is shown to slow down the progression of ALS by 20%, and I'm going in for screening for a clinical trial Wed for a drug which may be able to slow it further.

So that is what has been going on with me. Since typing is something that I won't be able to do for an extended period I have also thought about starting a youtube channel, but I'm lazy :P

Anyway I hope to post more often while I can.


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