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Re: Question from a "lurker"
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Sorry Inez, this went into my junk mail and I just saw it. I am 65. nina
On Jan 30, 2007, at 6:17 PM, Inez Ramos wrote:
I am a 49 year old who has had PD from the age of 16. diagnosed at the age
of 22 in 1980. I would like to know how old is Nina which wrote:
From: _nina@xxxxxxxxxxxx (mailto:nina@xxxxxxxxxxx)
When I was diagnosed twenty one years ago my neurologist said with
all the research being done and the new drugs, that if I had to have
a neurological disease, Parkinson’s was the one to have. Am I lucky
or what? I’ve bought raffle tickets, played bingo, entered all kinds
of contests and have never won anything; but for some unknown reason
my ticket to join the Parkinson Parade was picked. And it changed my
life!
For some reason, when I am asked “How Parkinson’s has affected my
life, I seem to have a problem coming up with a quick answer. I
tried to figure out why that should be such a hard question for
someone who has lived with Parkinson’s and worked for the Parkinson’s
community for 21 years.
Over the years my symptoms have multiplied and worsened. Because
there is not a day that goes by that allows me to forget I have
Parkinson’s, I often reflect on a story that makes me smile and
reminds me of the difference in being a pessimist or an optimist.
A young boy, placed in a room filled full with toys, sat in the
middle of the room without touching one of them. There were so many
he couldn’t decide which to play with. A second little boy was
placed in a room full of horse manure. He dove in and tossed it one
way, then another. After about an hour, as he was dragged from the
room, he was heard crying, “Wait…with all that horse manure, there
must be a pony in there somewhere!” My way of living with a body
that reminds me every three hours to take medications is to keep
looking for the pony.
Because Parkinson’s is usually described as “progressive,”
“debilitating” and “incurable” I know the problems I face today will
seem inconsequential tomorrow, but I refuse to feel “debilitated.” I
prefer not to dwell upon the negatives that make my life difficult,
but rather upon the positives that make my life full.
· While taking medication every two hours may force me to live
by the clock, I’m grateful I live in a time when there are
medications available. Without the chemical camouflage from the
cocktail of medications I take, I wouldn’t be able to walk at all.
· Although my symptoms first forced me to give up tennis and
skiing and then later, give up my walker for a scooter when the
medications don’t work, I am, nonetheless grateful to have the mobility.
· Although I hate seeing a photo or video of myself with my body
contorted or moving abnormally, at least it opens an opportunity to
educate someone about Parkinson’s.
· Although I’m afraid I’ll lose my balance and fall when I lean
over for a hug, I love that someone wants to give me a hug.
I could go on, but you get the idea. I guess you could say that
Parkinson’s has brought facets to my life that I never could have
foreseen– while it has done a lot to me, it’s done a lot for me.
There is no doubt that Parkinson’s has changed my life. It would be
foolish of me to say I’m lucky that I have an incurable, progressive,
degenerative disease, but…
·Without Parkinson’s, I wouldn’t write HAPS monthly newsletter for
2300, which has given me a personal way to reach out and touch
thousands and in return, so many have reached back and touched me.
Without Parkinson’s, I would have missed the opportunity of meeting
some of the most courageous, inspiring, amazing people I know.
Without Parkinson’s, I would never have had the PASSION or
opportunity to fight for and represent the Parkinson community with
legislators in Austin and Washington, or help co-found two
organizations involved with medical research that give the hope of
removing the word “incurable” from the description of Parkinson’s.
And with Parkinson’s, the love and devotion that Joe, my husband of
forty-four years, and I have shared has become even greater because
of our commitment to fight the fight and work toward that common goal.
Life is similar to a game of cards. We have no control over the hand
dealt us. However, we do have control over the way we play the
hand. There's no point in blaming the dealer for a bad hand. The
trick is to play it out with all the skill and determination we
possess. I’m not smart enough to find a cure for this disease, but I
am determined to do my best to make it possible for some researcher
somewhere to find a cure.
In short, I decided that if I have to ride in the Parade, I’d prefer
to do it on a pony!
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