Drug Trial - Day 0 - August 23, 2015

I'm sitting in a busy terminal with my computer and my mixed emotions. I feel a little nervous,
some excitement and a weird sense of solidarity, although my participation has little to do with myself.

Before I get into my reasons, I want to explain what the trial is and what is happening in my life over the next few months.

Tomorrow, I will begin participation in a drug trial for Myotonic Dystrophy, which is the disease that my son, Aulton, and I have. I'm fairly asymptomatic, but the disease affects essentially every part of Aulton's life. I will be traveling to Salt Lake City every week for over a month, then at two weeks, one month and then, two months (concluding in January).

The drug, when given to mice and primates, stopped the progression of the disease and reversed it. It CURED Myotonic Dystrophy! If the trial goes well for adults, there is a good chance children will be participating in a similar trial next summer. So, a lot is riding on the trial.

First, I want it to be clear I'm doing this for Aulton. Yes, it's selfish, but that's why I'm doing it. Of course, after I thought of him, my thoughts naturally drifted to the other kids affected by this disease. I connect with their mothers through social media and support groups. I have met some of them. I also thought of the hope it could bring to me, as the disease is advancing in my body. If I had a drug that could help me function better, I would be able to better care for my children. This is hope for everyone who suffers from this disease.

When the idea of a drug trial was first presented to me, as something happening in the very near future, I was at a conference in Houston. The excitement was palpable. I was thrilled. However, this trial was not something that had anything tangible I could grab on to. I thought there would be ordinary people in some far distant land doing exceptional work that could prove so valuable for my family. The thought just didn't occur to me that I could play some small part in the work.

So, I'm putting bits of my life on hold and thanking God for this opportunity and for placing people in my life to help me do this. I pray I get the drug and that it works. But, either way, drug or no drug, this is something I need to do.

I will be keeping a brief log of my symptoms as the days pass to document any changes.

Symptoms Today:
myotonia in hands
chronic back and shoulder pain
muscle cramping in legs
severe menstrual cramping
increased weakness in hands
mild tiredness/lack of energy