Being a 53 is not an excuse

After reading the "Natural History of SBMA" study, one of the first things I said was, "Aha!" The study explained or verified several assumptions for me. It also made me look back a little more thoroughly on my progression. I found it helpful and haunting in some respects. I do not like to dwell too long on the negative aspects of living with Kennedy's Disease unless it serves a purpose (e.g., preparing for the future). I also do not like to make comparisons, but this study really made me think.

• The average CAG repeats of the 223 patients studied was 46.6 with the range being from 40 to 57. I have 53 repeats and that is at the higher end of the spectrum.
  
• I always wondered why I was fortunate enough to see my onset in the early 30s while several others with Kennedy's Disease did not start seeing symptoms until the 40s and 50s.
  
• I also wondered why at first the symptoms progressed slowly, but since the mid-50s, the progression seems to be accelerating.
  
• I thought that leg weakness was my first ADL, but now I believe hand tremors were first (mid-to-late 20s). I remember holding a coffee cup and saucer at my mother's house and the cup was vibrating.
  
• I knew that pneumonia was dangerous for those of us with Kennedy's Disease (I lost a brother this way), but did not realize that dysphagia (choking – dry drowning) could be a cause of death.
  
• Before I started practicing Qigong, my Serum CK was 800 and rising. I was lifting weights and using a treadmill … pushing myself to the limits several times a week. Within a year after starting Qigong, however, my CK had dropped to 272 (almost normal). It remained in the 270 to 350 range thereafter. This proved that exercising "smartly" did not increase the damage to my muscles.
  
• My Serum AST and ALT have been mid-range (normal) throughout the progression.
  
• My total cholesterol has also been normal with very little fluctuation through the years (at least I have some good genes).
  

These last three bullets along with my cholesterol, weight and blood pressure are positive signs regarding my general health. I need some good news occasionally, right?

I do not believe I have ever used Kennedy's Disease as an excuse not to do something. At times, however, I have used Kennedy's Disease as a reason for not being able to do something. It was normally because of safety concerns. Other times, it was because of a known inability to complete the task (previous experience) like mowing the lawn, cleaning the gutters, or climbing a ladder.

When I was younger, however, I often used Kennedy's Disease as an excuse to push myself even harder (and occasionally too far). In my forties and early fifties I just could not accept that my legs were not strong enough to do certain things any longer. Because of this irrational thinking, I experienced many falls and several injuries.

Today, I choose to believe that "acceptance" is far better than injury and it is different than "giving up." Perhaps I am just a little smarter these days. I sure hope so.