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Thursday, December 27, 2012

How Long have You had Parkinson's disease?

I get asked this question, a LOT and I really don't know how to answer it correctly. I was OFFICIALLY diagnosed at age 47, on August 30, 2007. But is THAT the correct answer?? 

The Judge at my Social Security Disability hearing decided my Parkinson's began a year earlier, on August 1, 2006, but was she correct?

I used to THINK my Parkinson's started in the summer of 1999, when I couldn't make my right index finger double click my computer mouse at work, but was it THEN?

Or did it start EARLIER? Like back in 1995 when my handwriting suddenly got smaller.

My Wonderful Husband says my right hand had a very slight tremor before we got married, and that was back in 1985. So, was it THEN?

Or does it date back to my childhood? I was acting out dreams (and scaring both my parents or the neighbors I would awaken by ringing their doorbell at 3 am) when I was about nine or ten.

Does it have to do with the big crack in my skull I got when I attempted to occupy the same intersection at the same time as a UPS truck at the ripe old age of six?

Does it date back to my birth? My Dad had Parkinson's. Is it a family thing?

The answer is: I DON'T KNOW.

NO ONE KNOWS. Not my Doctors, not the experts, no one.

But does it really MATTER?

Except for the purposes of determining the amount of my disability check, I'd say NO, it doesn't really matter.

BUT, how do I answer the question when I am asked?

I usually say since 1999, because that's when I became AWARE that there was a problem. Prior to that day when I went into work and couldn't double click my computer mouse, I was OBLIVIOUS. 
I didn't even NOTICE that my handwriting had changed. I only realized it a few months ago while researching a story for my book, Parkinson's Humor.
I didn't KNOW I had a tremor when we got married until hubby mentioned it to my Doctor a few years ago.

So, maybe the best answer is...



  1. I'm sure that you go back over those little signs as carefully as a detective sifts for clues. I have been doing that as well, since I developed really overt signs. I know that I've been symptomatic for some time prior to March, when the first overt tremors began.

    On a happier side note, your wedding picture is absolutely stunning and Wonderful Husband looks dazed and delighted and completely blissful; you both do! Much love, JC and Mary

  2. I used to think the foot shaking was just no big deal. When my neck felt "twitchy" I never thought about it. It just didn't feel right. My friends tell me NOW that the meds help me move better quicker, "Hey, you're doing better." Never knew I was doing badly to begin with.

  3. Thanks again for the continued inspiration!