Tuesday, February 8, 2011

Looking Back In Time …

The other day I was going through our photo album pulling out pictures to send to my daughter.  During the process I started comparing pictures of me twenty years ago with recent ones.  What a shock!  This is not a vanity issue.  It was a realization of how the progression of the disease has changed me physically.


Yes, I look in the mirror every morning.  And, yes, I know what I look like today.  Yes, again, some of the change has to do with the normal aging process.  However, I never really “looked” at myself as I did when I had two photos of me side-by-side.
  • Face:  The facial muscles have declined dramatically.  Where I had temples twenty years ago, I now have indentations.  My mouth and smile were once level.  Now, the mouth droops and the smile looks like a lopsided sneer.  My face’s shape is now linear … making me look much thinner than I am.  My neck can only be described as … well … “pencil neck” stands out as a good description.
  • Hands:  The change in my hands is also very noticeable.  The left hand is far worse than the right.  Between the index finger and thumb is a large cavern of skin.
  • Limbs:  My arms and legs have lost almost all definition.  They are now long, thin bones with flesh (and very little else) hanging on them. 
  • Torso:  Everything just hangs on my chest, stomach and hips.  I cannot find any muscle definition at all.  My dress clothes use to be tailored and fit very well.  Today, shirts and pants, whether dress or casual, hang on me.
The reality of this comparison is that, yes, I have lost muscle mass and tone, but I am amazed at how much of a difference twenty years has made.  When thinking back on the dutasteride trial results and the 2% loss of strength every year for the placebo group, I multiply “2% x 20 years” and WOW that is a lot of muscle loss.

This proves what I have been saying for some time.  The benefit and curse of Kennedy’s Disease is that it is a slowly progressive disorder, but it never stops progressing.


  1. Superb blog post, I have book marked this internet site so ideally I’ll see much more on this subject in the foreseeable future!

  2. Comparing yourself to a photo 20 years younger is humbling for anyone. Think of the 20 years of life you have enjoyed since the photo, and resolve to have a fine time today.

  3. Although father time, and KD have both taken there toll, we need to remember how fortunate we are. So many diseases take a toll on our mind. After twenty years I can see that you are sharp, and eloquent. Your ablility to share, to teach, and to mentor are an incredible gift to us all. Thank you. Your Daughter


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