Shake, Rattle and Roll: Who are we? What do we want? When do we want it?

By A.C. Woolnough
Reader Columnist

First, we need to establish who we are. As a community, we’re not exclusive — anyone can join. We do not discriminate based on age, gender, race or sexual orientation. Every year, we add about 60,000 new members. Our total group membership is about a million. For some reason, most folks don’t make a purposeful choice or join willingly. Who are we?

A.C. Woolnough.

About a million people, including me, have Parkinson’s disease (PD). Once we include partners, family, friends and co-workers who also live with the impact of PD, our community easily totals over 10 million individuals. That’s who we are.

Every day increases your chances of joining this select group. Age is the single largest factor in determining who joins and who doesn’t. You will never be younger than you are today. Tomorrow, you may be one day closer to becoming a member of our group.

It is of some importance that I wrote most of this column in Spokane, Portland and Seattle airports. I was on my way to the Parkinson’s Policy Forum (PPF) in Washington D.C. What is the PPF? The answer if both simple and complex. The first meaningful therapy (levodopa– essentially a chemical replacement for the loss of dopamine in the mid-brain) for Persons with Parkinson’s (PWP) was discovered about 60 years ago — and it only treats symptoms and is not without side effects. It is still considered the gold standard treatment. After more than six decades of increasingly more sophisticated research, the best we have are some new drugs and brain surgery — to treat symptoms — but there is no cure. In fact, we have no test to conclusively prove I have Parkinson’s. It is based on clinical observation or — wait for it, drum roll, please — an autopsy. I, for one, will opt for that choice at a later (much later) date.

Over the past few decades, many PD organizations and foundations arose — locally, regionally and nationally. They include Parkinson’s Foundation (my personal favorite), Michael J. Fox Foundation, American Parkinson’s Disease Foundation, Brian Grant Foundation, Davis Phinney Foundation, Northwest Parkinson’s Foundation and many, many others. Each organization competes with the others for dollars to implement their mission — including research for better treatments, improving the quality of life and searching for a cure. Our goal is to eliminate the PD community. We want a membership total of zero — as soon as possible.

Once a year, these groups join to prepare a proposal for presentation to Congress. This year, over 250 PWPs and care partners became a unified voice in Washington, D.C., for the Parkinson’s Policy Forum. For two days, folks from 47 states were trained to make an impact on Congress. On the third day we were supposed to ascend Capitol Hill to have personal meetings with senators, representatives and staffers. We had printed materials to distribute and we practiced making personal connections and telling our stories. Many of us have done this for several years (this was my fourth trip), and the energy and synergy are tremendous.

Then the worst spring snowstorm since the 1960s was forecast to hit the area. Schools closed, stores closed (even the Starbucks close to our hotel was shuttered!), airports closed, trains stopped and the primary purpose of the PFF (face-to-face meetings) was canceled. It did snow a few inches, and those of us from upstate New York, Minnesota, Idaho and the like simply smiled and shook our heads. To be fair, D.C. is simply not prepared for a snowstorm — no plow trucks, sanders, etc.

What a huge disappointment — all dressed up and no place to go. Many congressional offices did stay open but moving 250-plus people (most with some kind of movement issue) around and especially up and down slick marble steps was not a good option. It was clearly lemonade time. Wednesday became a day to make phone calls, send emails, post on Facebook, tweet, etc. The Idaho delegation (Joe Prophet from southeast Idaho and I) was able to contact staffers on the Hill and make a connection. For example, I made plans to meet with Sen. Risch sometime next week.

So, what do we want? Our unified proposal included three “asks.” First, we want funds ($5 million) appropriated for the CDC’s National Neurological Conditions Surveillance System. That mouthful of a title is for a national registry. It has been created by Congress, just not funded. This registry will help scientists refine and target research, build a better understanding of variances in toxic exposure, gender differences and geography. Second, the PD community wants Congress to continue funding NIH at least at present levels ($38.4 billion) of which over $150 million is for research to slow or halt the progression of PD. Finally, the request that has special meaning for me: restore funding ($20 million) for the Department of Defense Parkinson’s research program. This one is important for veterans and those service members with TBI (traumatic brain injury) or exposure to toxins. It is too late for my dad who had PD, who served 37 years in the Navy and saw action in three wars (WWII, Korea and Vietnam), but it isn’t too late for many others. I consider it an honor that I have served as a reviewer for these research grant proposals for the past two years. That’s what we want.

When do we want it?  Now.

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