Wednesday, 4 February 2015

Not A Bad Day

It's been a long day today, long enough that my morning blog is now an evening blog; a situation which seems to be ever increasing. My day started early, with waking up so that I could be at the ALS clinic by 12:30 PM. After the clinic, I went immediately downtown to pick up Kate so we could go to dinner and a movie. After the movie I dropped her off in the deep south of Calgary and made the trek back to my apartment in the northwest of the city. As the White Rabbit said "I'm late. I'm late."

The clinic visit went pretty much as expected today, with the usual mix of good and bad news. The good news is that my progression remains slow and my breathing is still good, almost unchanged in the last year. The bad news is that I am still progressing, with measurable, though very small, losses in my arms and hands. The folks at the ALS clinic are going to help me with an application to the Alberta Income Supplement for the Handicapped, which will add about $400 to my monthly income. It's not an answer to all my problems but it is one of many things I will need to have in place soon.

Perhaps the most significant issue of the day was my possible involvement in a new drug study using a drug called Pimozide, a drug which is particularly effective at stabilizing neuromuscular function, meaning it can strengthen the connection where the motor neuron meets the muscle. It is hoped that this strengthening of the neuron connection will slow the progress of ALS. Unfortunately one of the possible side effects, one of the issues the study will have to deal with, is an increase in blood pressure and potential heart problems. Since I already have had to deal with athersclerosis, including a couple of minor heart attacks, angioplasty and seven stents in various arteries, along with the DVT in my left femoral vein, I am not a good candidate for this trial.

This is not all bad news, however. The money from the Ice Bucket Challenge is making its way through the research system. Projects with have languished thanks to lack of funding are now being funded. Studies with have been on hold for lack of money are now moving forward. There are some exciting new studies coming up and I am on the list. There is a study involving a herbal source medication which is starting in a couple of months; I am an ideal candidate for that one. The money we raised is already starting to make a big difference. There is more exciting research happening now than has happened in years.

So while my day was long, it was certainly worthwhile. On top of it all, I got to have dinner with Kate and we went to see The Imitation Game, the movie about Alan Turing. Not a bad day, not a bad day at all.

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