Shake, Rattle and Roll: It ain’t all bad

By A.C. Woolnough
Reader Columnist

“You have Parkinson’s disease.” Those four words rock your world, and nothing is ever the same. PD is progressive, it is chronic and it involves the death of thousands of brain cells. It can lead to psychosis (visual and auditory hallucinations), dementia, flailing movements, freezing gait and a host of other motor and non-motor symptoms.

A.C. Woolnough.

On the other hand, it ain’t all bad. I’d like to explore some of the positives, some of the gifts I’ve received, since my diagnosis five years ago — it is important to know some symptoms may show up years or even decades before being diagnosed. PD has sharpened (and perhaps warped) my sense of humor. Frequently, when I do presentations, I show a slide of the most interesting man in the world. The caption states, “I don’t always get a disease, but when I do, there is no cure.” Call it Parky humor.  Here’s another: When my brother went to college (more than 50 years ago), he ended up in Cleveland and never left (in 1952 and 1969, the Cuyahoga River in downtown Cleveland caught fire and burned!). I ended up with Parkinson’s. I win! 

As an aside, my brother and I are very competitive. He is the older brother and I have always been determined to do anything he could do, but better or faster. We’ve had a cribbage tournament going since 1967. Last fall, we got together for a week-long golf excursion near San Antonio. He is a substantially better golfer than I am, but I use my PD as an automatic handicap, so we end up about even. Then again, I keep score, and my pencil includes an eraser. While in Texas, we re-started a ping pong war from high school that left both of us out of breath and frustrated we’re slower than we used to be. No matter, it gave us an opportunity to get together —something we’ve learned to appreciate more and more as we get older and older. Given our family history of relatively early death, we never know when, or if, we’ll have a chance to renew our long-standing battles. For what it’s worth, neither one of us knows who’s ahead in our various competitions — nor do we really care.

 Those who know me are aware that my competitive streak goes well beyond my brother. Pamela won’t play Scrabble or most games with me because she is focused on having fun, while I simply want to win. My Parkinson’s has tempered this competitive spirit — a little. Now, I focus more on cooperative projects and activities. Much of the credit goes to patient training and repetition from my angel, Pamela. Now, when she asks, “Would you rather be right or be happy?” “I want to win!” is no longer my default answer. After all, I need to conserve my energy to defeat Parkinson’s.

PD has also provided an opportunity for travel. My competitive nature supported my decision to apply for a spot on the Parkinson’s Foundation People with Parkinson’s Advisory Council. It was a competitive process that involved short essay answers — right up my alley! Serving a three-year term on the council humbled me greatly. I am fortunate that I can still travel — and like to travel — as the work required multiple trips to New York, Miami and Washington, D.C. Many PWPs more highly qualified than I can’t make that kind of trip and were unable to apply. Frequently Pamela and I have extended our stays to explore and play tourist. 

As a staunch advocate of research, I was fortunate to be invited to New Jersey for training as a research advocate. That opened doors for me to participate in research projects at Columbia, NIH (National Institutes of Health), Portland, Seattle, Pullman and Sunnyvale, Calif. More travel! Throw in the grant reviews I’ve done for the Department of Defense, national and regional foundations and Universities. That’s about 75,000 miles since diagnosis — the equivalent of three times around the world!

Better treatments and an eventual cure rely on research. Research relies on funding. My best guess is that nation-wide foundations, regional organizations and local groups contribute in excess of $100,000,000 (yes, over one hundred million dollars) toward research, education, advocacy and quality of life issues. The government also contributes to the research pool. Unfortunately, less than 25 percent of research proposals are ever funded. That’s one of the reasons I’ve gone to Washington, D.C., the past four years to meet with Idaho senators and representatives promoting federal funding for neurological research. Yes, more travel.

The best thing that has happened since diagnosis is the people I’ve met. From donors, to care partners to those with PD, to advocates, to researchers, to clinicians, therapists and even pharmaceutical reps, I am amazed and impressed with the Parkinson’s community. They are selfless, determined and willing to do their part to get us closer to the holy grail — a cure. I started to name a few of these incredible folks but realized they would fill up this entire issue of the Reader —something I don’t think Ben, the publisher, would appreciate. Let it be enough that I know who you are, and know that I appreciate the work you do, and I love the person you are. You have my perpetual thanks.