By Chris Anselmo — 03/17/2014
I always opt for hand-written notes vs. typing. I like to be able to write out my thoughts on paper, and it forces me to pay attention to my ideas as I write them. Unfortunately, the legibility of my notes deteriorated rapidly later on in the day, which happened to correspond with caffeine deprivation.
All joking aside, the first day of presentations was intense, and extremely informative. The session began with opening remarks from the CEO of the Muscular Dystrophy Association, Steven Derks, followed by an introduction of the MDA’s newest Goodwill Ambassador, Reagan Imhoff. I have to say, Reagan is full of energy! She is wise beyond her years, and will make for a great ambassador for the MDA in raising awareness for muscle disease.
After the opening keynotes, the discussion turned to clinical diagnosis – mainly the tools available to clinicians to diagnose patients on a genetic level, and the usage of MRIs and ultrasounds in aiding diagnosis and monitoring changes over time. Diagnosis is an imperfect science, but to see in action how genes are sequenced, and the decision making that goes into whether or not to test in the first place, was very eye-opening. There are considerations that I never even thought of. I admire the work of everyone involved - doctors, genetic counselors, and researchers, to name a few. It certainly is not a cut and dried process. The discussion made for a great prelude to the panel tomorrow on ethics in genetic testing.
After lunch I attended the breakout sessions corresponding to exercise and rehabilitation – two fields that interest me specifically. I found the exercise presentations to be informative, and it reinforced the advice I was given personally, to not go overboard, but also not to stay sedentary. With exercise, the only consensus is that there is no real consensus. It is very patient and condition specific, with very few studies to point to in order to give specific guidelines on what the fine line is between beneficial and detrimental exercise levels.
The final presentation of the day is the one that hit home the most for me. It had to do with pain, which I know all too well. As my condition worsens, it is something that I have to deal with on a daily basis. My shoulders have weakened to the point that it strains my neck, giving me frequent headaches. My legs and joints are always sore. It’s nothing to complain about though – hearing anecdotes about what people with other diseases are going through, a little soreness here and there really isn’t all that bad.
I am so glad that pain was highlighted as its own section, and am thankful to the MDA that this was addressed. It really is a major day to day consideration for people with muscle disease that, as the presenter Dr. Gregory Carter mentioned, is oftentimes overlooked. Until there’s a series of breakthroughs and treatments, managing the quality and enjoyment of life for patients must be a top priority.
To not be in pain is a great feeling, which I hope everyone with a muscle disease can someday experience!
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