Never, Never, Never Quit

Member for

6 years 11 months

It Was a Dark and Lonely Night...

I kicked my legs and thrashed my arms during vivid dreams of physical activity, and my dear wife awoke with bruises as I unintentionally connected with her.  That first symptom occurred more and more frequently over the ten years before my diagnosis of Parkinson's Disease.  It was seven years after the diagnosis when I learned that Rem Sleep Behavior Disorder (RBD) is a common early symptom for several neural degenerative diseases.

It's All in Your Head.

In late 2000 when, after over 25 years of high tech engineering work, the tremors in my hands became so embarrassing that I would hide them in my pockets.  Complaining to my doctor that I felt old, stiff, shaky, and fatigued he ordered several tests, which all came back negative.  “Nothing’s wrong with you”, he encouraged me, “you just need more exercise.  Get used to it, it's just middle age.”  But exercise just made the symptoms worse and it wasn't long until my hands shook so badly that I could barely even type at my computer.  Walking also became troublesome as sometimes my body would, without warning, start moving forward before my legs would respond, causing embarrassment as I would trip and stumble.  “You are probably just stressed with your work,” the doctor laughed at me during further visits, “it's all in your head, come back in another six months and I'll bet you'll find yourself better.” 

Even worse in six months, and in this miserable, degenerating condition I found another doctor.  This new doctor was also puzzled, but believed something was wrong.  It wasn't just stress, exercise, middle age, or my imagination, and he ordered more tests.  By now, over a year since I first sought help from the first doctor, I was also having difficulty swallowing, sometimes becoming choked.  Again, all of the tests came back negative, and I was referred to a neurologist.

More tests were ordered, all returning negative, and the neurologist, inexperienced with Parkinson's disease in younger patients and uncertain what to try next, finally prescribed Sinemet.  Within 20 minutes of taking the first pill I felt better than I had in years.  The relief was so wonderful that as I sat at my computer terminal, now able to type again, I cried, happy to finally have a name and a cure for my mysterious illness.

Don't Need a Part-Timer.

Of course, I soon found that Sinemet wasn't a cure and I was taking first one, then three, then five, then seven, pills a day, and still the symptoms were returning.  It was in 2002 when I could no longer work full time that my employer informed me that they didn't need part time workers.  So unemployed, I sought help from yet another doctor skilled and experienced in treating Parkinson's Disease and movement disorders.  He tried the range of antagonist type drugs, but nothing worked except the Sinemet, and I was now taking ten pills a day.  Finally we tried a relatively new drug, Azelect, and when taken with Sinemet it gave longer term relief and it seems to be slowing the progression.

Creative Minds Refuse to Stop.

Now in 2009, I am still unable to work full time and have obtained permanent disability.  While my body kept me from the professional work I enjoyed, my mind wasn't deterred.  Putting my engineering skills to work I began making wooden toys for my grandchildren, and then started designing and producing wood jewelry and other unique gifts. 

Even though I can rarely perform the detailed work for more than two hours spread across a 24 hour day, my mind is always busy designing.  My little hobby business,, may never show a profit but it has provided an outlet for my creative talents.  It has also connected me with other PD patients and we never stop encouraging each other.

Adversity has taught me that often obstacles are simply doorways to new opportunities.  I have also discovered that those with the most challenges often make the most reliable, creative, and dedicated employees.



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