As I said in my previous post for week 104 I am finishing the ASCEND trial. 2 October 2014 is my last visit to the clinical research center.
Why did I stop
I could continue and definitely receive Tysabri (natalizimubab) but the risk of my getting PML is too high for me to continue. This is my personal feeling as well as the advice from the consultant, Ben Turner, who is running the trial at the Royal London Hospital. If I was on Tysabri for the trial then I do not believe it is effective in slowing down the rate of progression of my SPMS. I do not know if and when I will be unmasked and find out if I was a placebo.
What I could do
In Jan 2012 I took the decision to be medically retired. Then I was more than capable of assembling and folding up the Travelscoot mobility scooter on my own. I could lift it up from a railway platform and put it onto a train. I cannot do any of those tasks now.
What I can’t do
Compared to two years ago now I am much less stable on my feet, and I have an appalling sense of balance. Now I definitely need a rollator to walk around the house, two years ago I did not need one. I started to use one a year ago though it might have been a good idea if I had started using one earlier. These days I cannot lift my left foot up onto the next step on the stairs at home. Two years ago it was possible but it was a big effort.
Arm in a sling
After the shoulder operation I must live with my left arm in a sling for a few more weeks. So I effectively have only one arm and this is holding my walking stick; walking is now an even more accident prone activity. Obviously this does affect my walking speed. So arm in sling means my physical decline is even more obvious.
I had 2 years of infusions so this was just a wrap-up session. Walking test results were significantly worse than normal, as I expected In 6 minutes I only walk 139 M, normally I normally manage 200+ M. The 9 hole peg test with my right hand was about 30 seconds.
So its bye bye ASCEND trial and I’m sure I was on a placebo. Shame I could not continue on the real thing but I do not want PML.