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.
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?
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.
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?
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!
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.
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.
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I leave here a translation from my last facebook post. Consider it as my 11 months FUS Surgery update. 
One step two step 
Disappointing Consultant appointment
Holistic POSITIVE results
How is Parkinson’s diagnosed 
