Who are we?

The members of the Parkinson's Creative Collective are eleven very diverse people with Parkinsons Disease who met on the Psych Central NeuroTalk PD forum. Sharing the difficulties of living with a chronic illness, we joined forces as volunteers to write a book intended to assist those touched by the diagnosis of Parkinson's Disease not only to learn how to cope with it but to learn how to flourish with it through personal advocacy. The members represent a microcosm of the larger population of Parkinson's. We are men, women, old and young. We are late and early onset and have, collectively, over one hundred years of experience dealing with a wide variety of Parkinson's issues. We have each benefited from reading how others have dealt with those issues and now wish to share those experiences and our own with a wider audience.

The PCC website is an extension of the work we have done on The Peripatetic Pursuit of Parkinson's Disease, but has also become a project in it's own right, and represents a way to carry the work of the book into a wider context, and encouraging others with PD to find a creative voice that will benefit the global PD community.

What is Parkinson's Disease ?

Parkinson's Disease (PD) is a progressive degenerative neurological disorder for which there is currently no cure. Widely seen as a disease of old age, it can and does affect people of all ages. It is estimated that there are approximately 4,000,000 sufferers of Parkinson's Disease worldwide, with estimates that this will rise to around 6,000,000 by 2030. It is treated with dopamine replacement therapy, which initially can be very successful, but which over time may become as difficult to live with as the disease.

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We know Parkinson's will not kill us, but there are no survivors. Our mission is to be able to post a banner announcing the cure... Bob

Parkinson's is the body make-over from hell !! Paula

Parkinson's Disease is a life disorder that only affects those things that are affected by the brain, including movement, either too much or too little, balance or the lack thereof, and cognition making some of us at the same time, less driven, more creative, less dependable, more compassionate, less decisive, more thoughtful, less extemporaneous, and more eloquent. It is a disease where each of us is different and yet the same, where we are both joined and separated by our experiences, where we begin alone in our journey toward understanding and through the search for answers join in a community of those who know exactly how we feel. Parkinson's Disease is both the bane and the blessing of our lives whereby through learning how to live with it we can become, together, better human beings than we were before. Pam

PD with all its manifestations of motor and non-motor symptoms is a fascinating disease and a complex puzzle to solve. I would have enjoyed solving this enigma a lot more if it was not residing in my own head! Girija

Parkinson's affects everything, you wake up with it, you go to bed with it, it incessantly reminds you of it's presence, it is a constant companion that you could do without! Lindy

"Shuffling and shaking with YOPD...we bring sexy back." Laura

The word "psyche" means spirit, or soul--the location of the ability to cope with the peculiar suffering that is Parkinson's: the day-to-day discomfort, frustration, pain, apathy, and confusion that go on for decades before the inability to move takes the weary body. We can fight it or accommodate it, we can learn increasing frustration with it all; we can learn grace, patience, spiritual strength, and courage; or we can give up and refuse to be alive for the rest of our lives, with a great array of variations in between. Jaye