Hi
I am sorry that I don't get here often. I do read more than I post, however. I read about some of you in the latest issue of Neurology Now (March-April, 2007 - page 42-43). Good article!


I frequently am asked to speak to different groups about what it’s like to live with Parkinson’s. This includes what it’s like for caregivers, also. Years ago, when I first started this type of advocacy, I collected thoughts from people with Parkinson’s and their families. I need to update my comments.

Could you send your comments here? Just put reply here. By posting your comments, you are giving me permission to use your comments for my presentations. Also, give me how you want to identify yourself in the presentation. For example, your initials or first name and what area you are from. For example, sign JBP in Wyoming, etc. Here is the requested format:


What it’s like to live with Parkinson’s: (Only 1-2 sentences)
Example: It’s like being in a runaway car; you know there’s a cliff up ahead, but you can’t stop it.

From: JPP in Wyoming



Please let me know this within the next week (no later than April 27)– I promise to report back how everything goes. THANKS SO MUCH! Hope to see some of you at the Unity Walk in New York City April 28!

Peggy

OK, I'll try

It's like drowning. You sink beneath the dark water with fear and despair. You bob up into the sunshine with exhilaration and hope. Over and over every day.

Thanks for being first, everett. I believe yours was one of the names in the Neurology Now article.

I noticed your signature quite about Big Pharma. that is who my next presentation is for - I will be speaking to 180 pharmaceutical reps in training for sellign neurological products. I know it seems that everyone is out for the almighty dollar in the pharmaceutical business, but I find that often there are some who can either identify with the comments I make or who are compassionate. If we can weave just one thread of compassion whereever we go, then it is worth the effort.

Thanks again!
Peg

It's like premature aging, which, along with continuous pain, includes cognitive losses, emotional detachment, and lack of self control.

Paula

It's like being on vacation without an itinerary. Never knowing what the next day will bring.

With regard to meds:
It's like walking in a never ending hilly area, where there is no down, only plateaus and more difficult ups. The first 15 minutes are a bit rocky and you have to take care to pick up your feet and take care with your gait so you don't stumble. The next 30 mins are flat and smooth, after that the next 2 hours are a slow climb up hill and each step is a bit harder than the next. Then you get to the peak, where the plateau is and there is another hill ahead.

With regard to dyskinesia:
Kyskinesia is like being a clown in a side show. One provides entertainment of everyone around. There is a positive side to dyskinesia. It can eliminate the need for a diet. We get to lose weight without one.

With regard to lack of smile:
People want to know if you are okay or they want to know why you are angery. My mother use to say to me, "Smile, you look so angry."

With regard to standing up from a sitting position:
Just more entertainment for the people around you. If there is nothing to grab hold of, you have to fold yourself into the "nose to tops", stand up and then unfold yourself. Oh yes, then you have to get your feet to move!

One more:
PD allow me to test my ability to pick things up off the floor, since I spend so much time putting things there...aka dropping things due to clumsiness.

to you Peg

Carolyn, your metaphors (I think they're metaphors) are just wonderful.

From BEM in PA:
Having PD is like falling down a mountain side. Once you've fallen, there is no turning round and climbing back up, the only way is down. At first you can grasp small trees and pause on rocky outcrops, but the mountain side gets steeper and steeper, the rocks get sharper and sharper, and even if you've survived, broken and maimed, almost to the end, the final drop off will kill you.

PD is like a bus that only picks up. Once you're on board you can never get off again.

PD is like old age. You no more say "Get well" to people with PD than you say "Get Young" to old people

paul, Carolyn, and BEMM - thank you! these are wonderful!

More??

Peg