I reach the bathroom I am shuffling with little tiny steps, but I make it by the skin of my teeth. When I finally come out of the bathroom, a line has, as usual, formed outside the door, of desperate people. Just as I'm wondering how to get through all those people the chatterbox comes to my rescue. He helps me back to the chair, and it does not take long before I realize that I have totally misjudged him. He may talk a lot, but

at least he knows that even though I walk like a drunk and talk like a drunk, I'm not really drunk, but wish I were..............where'd I put that bottle?

Well if it walks like a drunk and it looks like a drunk -is it a drunk?

I ponder as I look at all the temporarily healthy people around me. At 57, I am aging anyway so maybe it's youth I miss. I can't really say that I am the same on the inside either....drat. But just try getting it across to someone you haven't talked to in a while that it can be a good thing sometimes, well even overall........then who should I come across but a friend and liason between grassroots and the orgs. She was going to leave immediately and fly to China to adopt a baby girl there. What a sight for sore eyes. Someone I could relate to. A fine girl with her own row to hoe. This Round Table was a pretty big deal and tons of work for her, she gets her notice she is leaving for China the day after the Round Table and is sooooooooo busy and right in the middle of what's getting to be one of the last weeks of prep, her father has a heartattack and dies in his late sixties. Her husband is a pastor and her father was going to marry the church secretary. Should i go on?

Well, anyway there she was - and she looked like she needed a friend as badly as I did by then.......we made eye contact and both looked relieved........when I made my way over to her, as always, when I am not concentrating, no matter what is in my riight hand, it heads for the ceiling. So many times people have had to tell me I was going to spill whatever was in my climbing dyskinetic shoulder. Dang that must look weird, but I started feeling better when I looked over, and saw some guy hopping across the floor on one foot........

As I shuffled into the room I saw this woman doing strange things with her arm. The liquid that had been in her cup was now all over my face. As I wiped the liquid from my eyes, this strange man was hopping across the floor on one foot. I knew then I was in the right place.

The actual Paula-W is belly laughing now......carry on...

sitting inside the security booth,m peering through the one way mirror, I wondered it the the two of you had come together. It wasn't long before I realized that neither of you had an inkling that the other was here. Then again, why should you. That was a shallow assumption on my part...a bit like asking me if I knew someone else just because they wore the same brand jacket as I wear.

I had been watching for over 2 hours. I noticed all the stares. Some were of pity, a few of disgust (I never understood those) but most were of admiration and self evaluation. I read lips as a part of my job with security, so I had an advantage. One would stare for a while and then turn to a partner or friend and say, "I hope that if I ever get a debilitating disease I have enough of what it takes to go living like that person, as she nodded in one of your directions.

I too was amazed by your determination to be a part of life...not just being, but actually living. That involves taking life and wrapping yourself around it, refusing to let go until it includes you in its existence. At the party there were dignitaries, famous people, actors, etc. and two people with Parkinson's disease whom I added to my heroes list. Thank you for not giving up.

michael b.

I did notice that I was not the only PDer at the party. With my limp and cane and white hair, PD is not what comes to people's mind when they see me, they think "tottering old woman". I wish they'd skip the ''old", but 1938 is beginning to be a very long time ago.
But back to the party - I stayed in my chair and had a really lovely evening. At my advanced age you would think I had learned not to trust my first impression of people since I know that my first impressions are almost invariably completely wrong. The chatterbox, whom I had so misjudged, turned out to be both kind and clever and entertaining. He introduced me to all his interesting friends at the party, among them a woman who walked like a drunk and talked like a drunk. I knew, of course, that she wasn't a drunk but a fellow PDer. She had just won the battle over breast cancer. Her courage and strength were inspiring. Most of us have quite enough trouble handling one debilitating illness.
The woman I saw out of the corner of my eye spill her drink was not tipsy either, nor was the man with the expressionless face slow of mind or in a bad mood. Thinking back on the party I think there were a lot of PDers present. As ever, we're a part of the picture of everyday life. We get used to having PD, to the cruel distortions it imposes on our movements, the aches and pains, and we don't allow it to hold us back from joining the fun, from enjoying life.

birte

I was looking for the emotional side of Pd. I think we captured a little bit of it, but I don't think we have really expressed how we feel down deep...you know...in our private thoughts. Dare we speak them?


The Emotional Side


“Well, you're looking good.“ How often have you heard that line, followed by, “How do you feel?” How do you respond? Do you lie, tell the truth or find some middle ground on which both you and your friend, acquaintance or loved one can be comfortable? Do they really want to know the truth? Do you really want them to know the truth? Perhaps you don't really want the truth to be heard coming from your own lips.


Let's face it. Let's look it square in the eyes, go toe-to-toe with reality, call it what it is, be frank about it, make it perfectly clear, mince no words, tell it like it is, make no bones about it, be honest about it. Afterall, this disease is not like a cold or a sore throat that will make one miserable for a while and then go away.


This disease still has the words, “There is no known cure.” attached to it. It still has the prognosis of, “progressive, degenerative,” stapled to its nature. It is debilitating, in that it continues to sap the strength and vitality from every cell of the body, eventually making one feeble and incapable of self-care. So, how do I feel? Do you really want to know, or are you just asking?


I feel angry (displeased, mad, indignant, irritated, incensed, exasperated, enraged, furious), because I allowed this to happen me. Do I blame myself? Yes, I do. Do I blame only myself? Not in the least.

michael b.

but with humour - no, I don't really want my family and friends to know as much about my condition as I do. I don't want see them look at me and wonder if my mind is going to pot, if I've reached stage number this or that yet. I don't want them to anticipate my decline, but I do hope they will step in and help my husband when my decline does set in.
I want to eat my cake and have it too. I try to be as 'normal' as I can - to still be my old self, and not the feeble invalid I will slowly but surely become unless I kick the bucket before I get to that point. And at the same time I also want compassion, I want them to know that everything I do takes effort and perseverance and mulish stubbornness, and I childishly crave praise for my efforts and my successes.
Anger? Yes, I'm angry, I'm furious, but I'm most of all offended that nature has had the cruelty so to humble and humiliate me.

Come on folks! No matter how bad it gets, you are still breathing. You all obviously have a great sense of humor, you enjoy other people's company, you have a very creative nature, and you are all genuine, caring, people. You have found out you are stronger than you ever thought you could or wanted to be.

You have all aged with more wisdom than most people will have even after a lifetime of experiences. You all have been teachers to myself, you've corrected my errors, put up with my hysterics, my paranoia, my pushiness, my bullheadness.

I can't say how grateful I am to have met all of you.

Love,
Vicky