Well It's been a while, but I figured I shouldn't leave this blog to dwindle... I swear I'll try to keep it updated at least once a week.
Now for the updates:
I'm married! My partner of 8 years and I finally tied the knot in a civil handfasting ceremony on Aug 27th. It was a great ceremony, and a fun reception. We also went to Quebec City for a few days for a honeymoon, which was great.
On the ALS front:
I'm enrolled in the Ceferetoxin study, and learned that I am on the genuine drug because I have some of the genuine side affects. It is also slowing the progression of the disease fairly significantly, though the central line kind of sucks.
When I enrolled in the study they needed to install a Hickman Line into my jugular, and the tube comes out of my chest. Luckaly I told them I was getting married and they put the exit site as low and to the side that they could. It was still a scary as hell procedure because I was wide awake for it with local anaestetic, but I made it through and have now had the line and have been taking the drug for 9 weeks. Now every month we have to drive to Toronto so I can endure all the tests they require which include blood tests, ultrasounds, muscle, breathing tests and a whole slew of others.
I've also agreed to take part in two other studies, one is a quality of life study... and some of the questions are about religion, but I guess that it factors into some people's lives... just not mine. The other one is a speech study which measures how well I can speak over the long run... it should be interesting.
Now for the most exciting news yet.... Scientists in Chicago have found a common mechanisim in ALS patients... all ALS patients. I don't think I can express exactly what is happening... so I'll let the media do it for me: http://www.latimes.com/news/nationworld/nation/la-na-als-study-20110822,0,3524095.story
Needless to say this is really exciting news, and I'm very hopeful this will lead to a treatment or cure. So support ALS research!!
I think that is all I need to report, so hopfully I'll be able to update next week.... especially with school starting :)
Until Next Time,