I wonder

I wonder if neurologists visit this site and read our posts.

I wonder if politicians and lobbyists visit and review

I wonder if the pharmaceutical companies check to see what we think of all their drugs

I wonder if anyone hears us

or do we just speak among us?

Listen world, find us some relief

A cure would be great

But I fear it would be too late

For those of us here already

You see

We're sleepless at night

and tired all day

We move all the time

just not how we have in mind

My brain says step right

my legs twist and I stumble

and I get tired of being so humble

My brain says walk straight

Clean up that gait!

I'm frightened

Can it already be too late?

We move all the time

but it's not what we have in mind

We're sad and depressed

Then we're glad and obsessed

We call out to each other

Be strong! Move on!

But don't get me wrong

We move all the time

it just not the right kind

So to all those who are here

and to all those that hear

We're as patient as patients can be

We want you to know

that there's so much to fix

We move all the time

but it's really not fine

18 Replies

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  • WOW!!! Chris, you it on the head! I love your poem, and hope you don't mind if I share with friends!?

  • not at all--share away

  • GOOD P;OEM CHRIS

    LOVE JILL XX and a:-)

  • Very thought provoking. Maybe we should tell our consultants to look at this site. They would certainly be surprised and could learn a lot. Maybe even a way to THE CURE is hiding amongst our posts.

    Sue :-)

  • Beautiful poem. We're listening even if the politicians, physicians and pharmaceutical companies are not. I Wonder what would happen if we all decided to send a question, inquiry, poem, song, letter to each of the above mentioned people? Someone is bound to take notice? Aren't they?

  • yes

  • Thanks for the nice compliments on my creative rambling!

    Oh I think we get noticed. . .especially when we lurch like we've just had a couple cocktails! But like moving all the time--it's not the kind of attention I had in mind.

  • Great poem... wouldn't it be great if we could get a specialist Doc to volunteer to review clinical issues maybe once a week. They could change out every week so it would not become burdensome for any one individual. Could also include Therapists, Psych's, RN's etc.

  • Love the poem I wish the Dr and Drug Co and the lovely SS Dept of the Good Ole USA would take a closer look at PD and it's effect on peoples lives...

  • Thank you, I enjoyed the poem. You hit the nail on the head, Chris. Neurologists, pharmaceutical companies, politicians, and lobbyists could learn so much from this website. This site is not only informative; but shows the humanistic side of this terrible disease. You can read about the clinical all day long; but have no idea the toll it takes on PD patients and their families unless you are close to the disease. We are the voices and faces of PD.

    My neurologist told me he didn't know how I feel because he doesn't have Parkinson's. How do you respond to that?

    Cheri :)

  • At least your neurologist was honest! I actually really like my neurologist, but I still think seeing a patient in a clinical setting vs seeing how pd affects those patients on a day-to-day basis provides a very different reality.

    PD is tough. It's not terminal. It's not a cancer that can be removed. We can't fight having it. It's like an unwanted rude guest whose duration is long long long. We take our pd with us wherever we go. And it makes our lives and the lives of those we love very difficult!

    Chris

  • I didn't mean to imply differently, I like my neurologist too. I totally agree with you on the clinical setting vs life on a day-to-day basis.

    I have been told I won't die from PD, and I should look at it as a chronic condition, such as hypertension, that I will have to manage for the remainder of my life. For some reason, I'm not feeling it. :) I'm not bitter or angry. I still haven't quite wrapped my head around this. I'm learning to cope and living each day to the fullest.

    Best wishes to you, Chris.

    Cheri :)

  • I would respond by changing neurologists!

  • Great! Thank you for that.

  • Thank you for the poetry - one day at a time slowly.

  • I say we have to let people know..I would like to go on the news or something. We have to speak out to others and let them know what it's like to live with this disease.

  • I for one read the question but it is difficult keeping up,

  • It read as much as the parkinson's will permit me. Not near as many as I would like to

    read and respons. My health keeps me off the computer sooner than I would like to

    turn off. May you have a great summer.

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