You’ve Got Parkinsons!

These were the words that defined the end of my brief visit with a neurologist in 2009.  I knew NOTHING about Parkinsons.  The word itself scared me because I knew nothing about it.  After my primary care physician had ordered an MRI to rule a brain tumor in or out as the cause of my tremor, she had referred me to neurology.  The neurologist put me through a battery of what appeared to be ridiculously infantile motor tests.  What in the world, I thought, is he doing?  Touch your nose with your finger.  Snap your index finger to your thumb as quickly as you can.  Stamp your foot on the ground with your heel ~ quickly please.  Slap the front and back of your hands to your thighs.  At this point, I am thinking of the Ray Stevens song (Doctor, Doctor, Have Mercy On Me) where the man hops right up on the table like a cocker spaniel on all fours to get checked by the proctologist.  What is he looking for?  Next he has me get up and walk down the hall, turn around and come back.  Then he had me sit down.  “Look, Pal, you’ve got Parkinson’s.”  

I was given nothing with regards to reference material ~ no suggestions as to where to go to learn about Parkinsons.  I was not told what to expect with any form of progression of the disease.  In actuality, I was told nothing about the disease at all.  I was, however, told to take some pills three times per day, which later came in the mail, to the tune of over 800 pills in one bottle.  I looked at this very large bottle and wondered, what in the devil kind of disease do I have that requires such a huge amount of medication?  At the time, of course, I was still a pilot, an active general aviation pilot, and concerned about my ability to continue to fly while using these medications.

But I digress.  My wife and I walked out of the doctor’s office, in stunned silence.  With did not speak to one another until we got to the car, both in our own worlds, wondering what this meant for us as a couple, for our future, and for me, in particular.  I had all of these thoughts going through my mind and wondered, what should I do?  Luckily, I had a wonderful spouse with a talent for gleaning information from numerous sources and fairly shortly we had a pretty good idea of what Parkinson’s was all about.  Not necessarily how it was going to affect or impact us, but we understood a little more about the disease itself and the medications that were used to treat it.  

Two weeks post declaration of PD and more knowledgeable than we were, my wife searched out a support group.  I was in complete denial and didn’t wish to go to a support group, but she informed me what a wonderful wealth of information I could glean from each person in attendance.  After three months of her attending the support group meetings, I finally acquiesced and attended myself, now sure that the doctor must be on to something.  Fast forward four years and here we are in 2013, leading a support group in Riverside, California.  (rpsgca.org)

My questions for you are:  How many of you that are reading this went through a similar progression?  How many of you feel that this could have been handled better, and should have?  And how many of you feel that the medical community, especially neurologists, are letting their patients down by failing to provide basic information or even a simple pamphlet on what Parkinson’s Disease is?  Lastly, what do you think we, as patients, can do to get information into the hands of neurologists?