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-   -   Tell it like it is - Need your input! (https://www.neurotalk.org/parkinson-s-disease/18014-tell-input.html)

stevem53 04-26-2007 09:07 PM

Quote:

Originally Posted by ol'cs (Post 92017)
IT's very diffficult to hold your piece forever; loooks pretty strange too.:D :D :D . ol'cs


Forever is very difficult..But without Sinamet, we could hang in there for a long time..:D :D :D

mamafigure 04-27-2007 02:47 AM

Having Pd is like being a a weaver who has run out of wool, you just keep reweaving the old stuff, trying to keep it all together, but knowing that each day some part of you is weaker than before.

Having Pd and dyskinesia is like watching the performance of a street performer, but the performer is you.

Trying to keep your cool is impossible when your tremors erupt each time you are nervous and you have to ask for help to get them stopped.

Having PD is like walking through thick gelatin or muck, up to your armpits. Just the movement of a few yards can leave you in painful exhaustion.

Having PD robs you of self worth, for the words that used to be your friend now lay twisted in your mouth or caught in the cobwebs of your brain, making you appear brainless. You feel as though your intellect slides out with each forgotten name and detail.

Kathy, dx with parkinsonism

melg 04-27-2007 10:59 AM

What's it like?
 
It's like being a fly caught in a spider's web that struggles and struggles to get free but finally becomes overcome with exhaustion and cannot struggle any more and the end arrives.

AnnT2 04-27-2007 08:45 PM

Living with Parkinson's is like tamping down your panic about the future while mustering up the courage to live the present while knowing today is probably for you the best it will ever be.

Ann

toadie 04-28-2007 09:13 PM

hey peggy
 
Learning to live with pd: living despite it or to spite it

:hug:

dx at 26, i'm 42 now
alota years under me belt,lol

libra 04-29-2007 08:15 AM

when you have pd
 
So far so good, it's been 1.5 yrs since dxed. Whenever you make plans for future, in your head you are saying, "but wait! I have pd, what will I be like then, can I even do these things then?"
You get depressed alot, you wonder sometimes if you even have it, your family doesn't think you have it, it's just you looking for sympathy, whining again.
You find out your company offers long term care coverage with an introductory offer of one month w/o a physical if you sign on, and that's the most exiting thing that has happened since you were dxed! Imagine, long term care insurance, so your family won't go broke when you finally need that much care. How exiting, yuck! Who wants to live that long, but you know, no doubt, you will need care.
You are tired constantly, feel sooo old. You don't know if it's the pd or your age or you've overdone it, but whatever, you blame everything on pd.
When you talk to people and somehow it comes up that you have pd, you try not to feel sorry for yourself and say, "Oh whatever, everyone has something!" But truthfully, no one knows what it's like to have pd. Even I don't yet, haven't really had it as long as some. So far, it's no picnic.
I had someone tell me yesterday that she saw Michael J. Fox on tv and he looked so bad! Was jerking everywhere, out of breath, etc. That made my day, but hey, she was just making conversation. Inside you're just praying you never get that bad.
Sigh, I know I sound depressed, I am, but not always, just today. I just switched from effexor to cymbalta, so maybe that will help.
Good thread.


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