Tuesday, March 22, 2011

Personal observations during recovery

I am almost healed and it feels good to be among the living again.  Since I started taking Dustasteride, I have been keeping a journal.  I reviewed it today and these are some of my observations about the last five days.

  1. Saturday I missed my first day of exercises in over three years … just too weak.  And, I had to move my long program from Monday to this morning because of weakness and an upset stomach.  I really missed my exercise routine.  I knew I had to “get back on the horse” this morning and fortunately I could.  By this afternoon, I noticed some muscle soreness. 
  2. Fasciculations increased dramatically for some reason.  The facial and hand tremors were the most obvious.  I will have to ask my neurologist if he is understands why.  I still have more noticeable twitching in the arms and hands today.
  3. Leg and abdominal muscle weakness was the most pronounced.  My ability to stand up from a chair and my balance were the most effected.  I am assuming that the legs are weaker because they are carrying 180# of weight.  Why would the abdominal muscles be so weak?
  4. I noticed a greater weakness in the left side of my body.  I know that muscle weakness is asymmetrical in those of us living with Kennedy’s Disease.  I question why the left side when my dominant side is the right?
  5. During my long exercise program today, I noticed my upper body strength today was very good … perhaps 90% of normal while my lower body was still 70-75%.  Abdominal strength is somewhere in between.
  6. Because of the wasting of the facial and upper body muscles, I look much thinner after only a few days of not, or only lightly, eating.  Two neighbors commented that I looked thin or asked if I was dieting.
  7. My wife takes far better care of me than I do.  Saturday I ate like I was well again (a cheeseburger, ice cream, and shrimp pasta with garlic-butter sauce).  Come Saturday night and Sunday, I paid the price the price for overindulgence.  When my wife took control of my wellbeing I quickly began to mend.
caregiver log
I am perhaps over-analyzing this, but I find it interesting.  I also hope to learn from my mistakes (that would be a first).


  1. Bruce:
    You are not overanalyzing your regime... I appreciate the fact that you are not only doing this, but you are also letting everyone who may be interested in starting out with Dustasteride (or any any other future drug) about both physical and mental side effects.
    As usual, I wish you the best in trying out this drug. Please keep us posted of any developments!!!

    BTW... What's wrong with a cheeseburger, ice cream, and shrimp pasta with garlic-butter sauce diet? I could go for that on a daily basis. :-)

  2. Luis, thanks for your positive thoughts. I always enjoy hearing from you. The three food groups (grains, meat, and dairy) are all good as part of my normal diet. However, when you a doubled over in pain and nothing is staying down or in, well maybe it is time to take a step back and figure out what will stay down and in. :-)


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