Phil’s Parkinson’s Story
I spent my career as an engineer in the aerospace industry, almost never sick and not really conscious of medical research. Then my wife Jackie started having balance problems and falling. After three years of traipsing to different doctors and neurologists with no clear diagnosis, I pushed harder and was eventually referred to Dr. Nutt at the OHSU Brain Institute. Within five minutes we had a diagnosis: PSP (progressive supranuclear palsy). It wasn’t good news, but at least we knew what we were up against.
Two months after she passed away, Dr. Nutt gave me a diagnosis of my own: Parkinson’s disease.
That was in 2011. Since then, I have been coming to OHSU about every six months to see Dr. Nutt. I also have appointments with Jenny Wilhem for physical therapy and with Dr. Hogarth, who is the OHSU leader for the Parkinson's Progression Markers Initiative (PPMI), a research study for people with Parkinson’s disease. One of the goals of this research is to come up with a diagnostic tool — like something as simple as a blood test—for Parkinson’s. I’m also involved in a clinical trial now and am doing very well.
I think very highly of the whole team at OHSU. Dr. Nutt has always been personable and able to explain complicated things in a way we could understand, and Dr. Hogarth is a great person; I like working with her. Jenny Wilhelm was able to tailor an exercise program for me that is enjoyable (really) and has improved my mobility.
I love being involved in research. You find out about discoveries as they are happening. I participate as a research advocate for the Parkinson’s Disease Foundation; I get to interact with researchers and patients, and bring them together. I helped start a support group in my hometown, where I see people with Parkinson’s disease and encourage them to get involved. I’m also on the board of the Brain Support Network, which helps promote and facilitate brain donation to study neurological disorders. Soon I’ll be going to Washington, D.C., where we’ll meet with the Parkinson’s Action Network and visit members of Congress to try and get more funding for Parkinson’s research.
It’s important to be active, do lots of different things and stay positive. Attitude does make a difference. It’s also crucial to be your own health advocate. Too many people tend to be lethargic and not push for medical solutions. Don’t just assume the doctor is in charge; find out for yourself. Learn as much as you can about a disease. Get out there and do everything you can to help come up with solutions.
I made a commitment to Jackie that I would commit the rest of my life trying to help with research—and that’s what I’m here to do.