i didn't know what happens when you push the thanks so I tried it out on you Vicki because that post was very compassionate.

thank you,
paula

Ditto, Ditto, Ditto

comes a time, when the party is over and you have just your introspections to keep you company as you wait for the peace and painless sleep. you remember the little things that you didn't allow to bother you at the time but now seem so blatent...the little boy at church who stared at me in my wheelchair and asked his mom loudly "what's wrong with that lady?" his mom quickly tried to remove her son from my vicinity but i called out to him and he cautiously came towards me. it's ok, i tell him, to wonder about things that you don't know about. i tell him that i have a disease-like i am not at ease with body and that it is called parkinson's. i explain to him that, like a car needs spark plugs to make it run smoothly, people need something called dopamine
and that since my brain doesn't make dopamine anymore, i don't run smoothly. i shake and i freeze and i have all sorts of unpleasent things that happen to me. i tell him that it isn't contagious but that it can happen to anyone so he must always listen to his own body. we solomely shook hands and with a self-satisfied smirk on his face, my new friend went to tell his mother. this incident gives me a good feeling-like maybe i made some small inroad into the ignorance and fear that people feel around us. then i remember the other day, when i ran into my old friend jeanie. haven't seen much of her since i becoming really symptomatic-not much at all. i was with my kids and jeanie asked them how i was and what i had been doing. i just stood there, feeling like an idiot savant, listening to my kids give her a quick
and very kid-slanted view of my recent activities.
she said she had to go and finally looked in the direction of my face and said good-bye. i was floored by the realization that my illness was a threat to her security and well-being. if i could develop this disease, then the next step in reasoning had to be that she was also vulnerable and she didn't like facing that possibility. much better to not face it head-on; if she ignores it-it might go away. i could actually feel the fear coming from her. i scared the bejeebies out of her! this thought made me feel badly and wonder what this new-found power to make normally good people turn tail and bolt would do my already skewed psyche. finally, as merciful sleep began to take me to that painless place, i thought that life is like that: you take teeny steps forward and then get shoved back ten giant steps.

Not my usual" tongue in cheek,take the bull by the horns" self in response to this thread.
I am sitting reflecting over the years.Trying to remember what "normal" is like.
And I can`t recall "normal." It seems like I have always been like this...each day laboured,a struggle,another battle or obstacle to face...yet another strategy of coping to pull out of the bag.Just when you think you`ve cracked it...something else...always something else to fill that part of your mind that is given over to Parkinson`s disease.
Oh,to wake up in a morning,spring out of bed refreshed,and eager to start the day.Instead the bodies mechanics lurch and slowly grind themselves into a semblance of order,fighting the pain of dystonia before my first cup of tea.
Then hoping someone close doesn`t spring a spontaneous outing into the air,That would mean looking them in the eye,gritting ones teeth,and smiling a response of " I`d love to go..." knowing that the day ahead will be fraught with major obstacles and pain...lots of physical pain.
Or...instead,a furtive glance downwards whilst you search for excuses not to put yourself through the rigours of an outing,which to the healthy ones,is a breeze.We almost feel we have earned an olympic medal if we manage to slap butter on a slice of bread.
Yet...still I am not sad.I have been dealt this hand of cards,and like all of you,will keep on playing them to the best of my ability,until such a day arrives that I deal myself the joker...and do what I`ve always said I would do,when no longer functioning as I would wish.
Or hope for the ACES to come out with the advent of a cure.

We manage.We spend our lives managing first,and living second.
But hey....what terrific managers we all are.

Yes...I guess we should at times,tell it as it is...give each other an almighty hug,a knowing smile...take a deep breath in,renew our resolve,and carry on the fight.
What else is there to do....?

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