I feel like Princess Fiona (Shrek)

... is like having two bodies and one brain!
cs in ca.

The first few years aren't bad. I was dx'ed at 39; had symptoms for several years before.Then things get tougher, the medications don't work "smoothly" and you are overwhelmed at times, with rageing dyskinesias (very uncomfortable, uncontrollable, movements) where your arms and legs take on a life of their own, flailing about and desperately wishing that it would just stop. Then there is dystonia which can happen anytime. Dystonias are like muscle cramps, many people who have experienced wry neck, and "toe locking" can relate to this, it is one of the painful things about PD.
Falling down is another thing that results in a lot of pain. After you have fallen down many times, you are covered in bruises, cuts and gashes; some people break bones, and the more you fall down, the more likely you are to get weaker and fall down more. You also get weaker from spending too much time in bed, recovering from the latest fall. You choke on dry food. You get very depressed at all you have lost; your job, your friends; in many cases your family abandon you. Sometimes you think of suicide.
One of the big problems is that you often look able bodied outwardly. If you are young, other able bodied people suspect you of malingering, and since you were healthy and able at one period of your life, you become filled with guilt and even question your own sanity. Many times a spouse will not believe that you are as sick as you say you are and marriages become split, often because of financial issues.
Finally, you are left a shell of a human being, no longer able to support yourself while facing an increased need for "extra" funds for medication and other medical needs.
And worst of all, you just keep living, and the disease just keeps progressing. Sure , you have a "good day" every once in awhile and participate in some activities, even to the point where people think that nothing is wrong with you, making things even worse for you, because they think that you can "turn on" a good day when you want to. This just leads to more guilt and shame that PD is "all in your head", and to others that it is "really nothing at all". It is the 'non-belief" of the troubles that one suffers from this horrible disease that is particularly disheartening. If people could look at advanced PD patients like a painful terminal cancer patient, they might just slightly understand what most of us are going through. cs

Having PD has taught me how to really utilize sticky notes....when I can remember where I put them.

Thank EACH and ALL of you for your comments! I never could h ave found the words that are as descriptive as what you have used.

And Todd, it is fine with me for you to use them. This forum is public domain, but I like to show a sampling of how far-reaching the coverage is. If any of you have objectios, speak now or forever hold your peace! lol

(Rosebud - Princess Fiona is a very good comparison! I don't get quite as green as she does, however. lol)

Peggy

OK, I feel that the human body is only a sort of power plant that the brain has invented to stay alive and well fed. Once the brain starts to misfunction, it doesn't realize that it needs all that clumsy structure full of arms and legs and fingers and toes, and that's when disaster strikes and chaos ensues.
Sometimes I feel like a car without an engine and sometimes like an engine without a car. And since I'm in full philosophical mode, here's this from Kierkegaard:
Life is a deadly disease!

A real long time ago when I saw a person with Parkinsons for the first time I have to admit I sat at the table and kept looking at him. He had a set face that never laughed at my jokes or smiled even and the thought came to me later that night that i was looking into the face of a crying heart.

So to me the Face of Parkinsons is looking into the face of a crying heart

Some PWP lose muscle tone in the facial muscles and have an expressionless look on their face and dont necessarilly have a crying heart..It just appears that way

IT's very diffficult to hold your piece forever; loooks pretty strange too. . ol'cs

LOL
I needed that one!
Peg