Ruben, one of my fellow posters at our iVillage Parkinson's Board, asked us all to answer the question "What's
it like, Parkinson's?"...my answer to his question was:
Lauren Sue's LONG ANSWER to "What's is like, Parkinson's":
I had someone ask me this recently, Ruben. I simply had them hold my right hand. By doing this, they could feel the
rhythm of my tremor inside, since my low dose of medication is enough to calm the tremor, but not enough to make it go
away 100%. They couldn't believe what they were feeling. "You feel that all the time? You're always doing that
moving?". I guess I take it for granted, because I've felt that movement in my body for years now. Ofcourse, Parkinson's
is not just a tremor; it's also stiffness, it's pain, it's a whole host of things we know all too well...but
most importantly to me, I look at Parkinson's as a missing puzzle piece to many health issues that baffled me for years
before I got that official diagnosis that all of this I was feeling really was just Parkinson's.
I say "just" Parkinson's, because as bad as Parkinson's is, there are many other conditions it could have been that are
far worse... does that make any sense?
I try to look back on the early days when Parkinson's first surfaced, when trying to describe parkinson's to someone else.
Those first signs and symptoms I felt of Parkinson's were new and foreign to my body, scary and confusing,
but now it's a part of my every day. "Oh, this old tremor? Just ignore it, it's not bothering me!?!?!" No, I'm
not cold, I'm not scared, I'm not nervous, I'm not a lot of things I may appear to be, but I am shaking and I can't control
it. Parkinson's is like having a part of your body get a mind of its own. I may be standing here calm, cool,
relaxed; meanwhile, my right hand looks like it's conducting a symphony of fleas performing a 33 rpm record
on a 78 rpm setting. It's fast, it's rapid...it's always moving.
The person I had hold my hand to "feel" what it's like to have Parkinson's said, "that must be exhausting to move like
that all the time". Perhaps that is why people with Parkinson's tend to be more tired than others, all that involuntary
movement. Who knows?! One thing I do know, I am not Parkinson's and Parkinson's does not have me. I'm still the same
person I was before Parkinson's. Actually, that's not true. I think, after Parkinson's, I'm finding myself a lot
more introspective and I am realizing just how much I took for granted before this came along. I never would've thought that
by my mid-30's I'd have trouble with buttons or small objects, that I'd already be needing a cane (without Medication on bad
days), that I'd have a disability... I hope, if nothing else, my children gain one thing from my Parkinson's: take nothing
SHORT ANSWER to "What's it like, PD?":
it's a pain in the butt and until there's a cure your life will never be the same once you get it... BUT without it, I
never would've had the opportunity to meet some other really amazing people with Parkinson's. As much as I hate it,
there are some things to be grateful for because of Parkinson's.