48 weeks so I am almost half way there
I started the MS–SMART trial on January 7th 2016 and I take the MS-SMART pill twice a day. Its now 48 weeks so I am almost half way there. This two year trial is looking at 3 different drugs to find out if there is some neuroprotection in any of them.
48 weeks so I am almost half way there
Needless to say my MS is progressing slowly. The tips of my fingers are now quite numb. My double vision is getting worse. Walking is impossible unless I use a walker or rollator. The MS affects many other bits of me. I had to go for some tests on Friday 9th December. Here are details of two of them.
Nine Hole Peg Test (9HPT)
Hmm, MS is making this test more and more difficult for me. Picking the pegs out of the plastic bowl and then putting them into the holes is getting trickier and trickier. I know I geting worse and worse none the less it is testing how well I can use my hands and arms.
Now I need a new strategy
I can’t pick the pegs out from the bowl this makes me feel a bit incompetent. Instead I must slide a peg up the side and then grip the bit that is hanging over the edge Now I can pick up the peg and put it into a hole. Three years ago it took me about 25 seconds to do the test now it is nearer to 40 seconds to do the test.
Paced Auditory Serial Addition Test (PASAT)
This is the sort of test I prefer. I am given a number every 3 seconds and I must add that one to the one I heard before and give the answer. I need to concentrate, do simple arithmetic and I not need to remember previous answers. What is there not to like about it? What’s more l got 56 out of 60 answers correct. I know I did well last time even though I was not given my score.
These results didn’t reveal anything new.
I know I’m getting clumsier, my walking and my balance are deteriorating. The question is, how fast is the disease progressing? There is good news; my cognition is not seriously affected.
The trial will finish in spring 2018
The plan is to announce initial results in autumn 2018. If one of the drugs in this trial offers a degree of neuroprotection then put me at the head of the queue.
December 2016
I am delighted that your cognition is not seriously affected and wish you all the best for the forthcoming year.
Hello Barbara,
Many thanks for the good wishes. Been feeling physically better this week, my FES was adjusted on Monday. I will talk about it in next blog. I’m sure there is a lot more that goes on in the mind with MS than we really believe. Yes there are obvious physical and mental problems but state of ones mind can have a huge impact
Do you know the name of the drug? Many thanks.
Hello Judy,
Sorry its a double blind random controlled trial. When I will find out and it will be published. I finish in Jan 2018 but not too sure when I will find out about the drug