2005 PARKINSON ACTION NETWORK (PAN) FORUM

By Pam Gehrts, Sacramento, California

February 12, 2005

I returned several days ago from the 2005 Parkinson Action Network (PAN) Forum in Washington D.C. It was my first PAN Conference and the feelings of connection and excitement are still with me. It was so great to finally meet the individuals that I have corresponded with for several years in cyberspace. Having a face to put with a name and the stories I had read so many times on the BrainTalk and the PLWP websites completed the human connection.

Here’s my story. I’ve had Parkinson’s disease for fourteen years – since age 35. I was formally diagnosed about eleven years ago. I’m now 49 years old. Needless to say, I’m a young on setter (YOPD). Due to PD, I was forced to retire from my career as an urban planner about nine years. At that time, I had two young children, ages 11 and 6. I had started a successful woman-owned urban planning consulting firm and I had the credentials (a Master’s Degree) and extensive work experience. I was on my way to the "good life" – then PD hit and everything changed.

For the first five years, I was in denial. I didn’t take any PD drugs and persevered in spite of this insidious disease. Naively I thought no one noticed my tremors and slow movement. Finally, everything caught up with me and I started taking Sinemet, which got me through the next four years. However, after four years on Sinemet, the dreaded dyskinesias hit and I went down hill fast. I had extreme pain from dystonia in my legs and I lost over 40 pounds from the constant and violent dyskinestic movements. In spite of my loving family and supportive husband, the daily physical pain from PD was unbearable and at age 48, life was not worth living anymore. On December 22, 2003, I had a bilateral DBS/STN operation a UCSF in California. DBS is not a cure, but it gave me back most of my life. I no longer have the unbearable leg pain and the dyskinesias are gone. Alas, no PD treatment is without its side effects. Due to the DBS, I now have slurred and delayed speech and my facial muscles are scrunched up. This is a small price to pay for relief from the terrible physical pain of PD.

For me, the 2005 PAN conference gave me the opportunity to meet other kindred spirits who had stories like mine. I met wonderful and brave individuals with fighting spirits who will not to let PD win the battle. There is definitely power in numbers. It was intriguing to hear of the cutting edge research being done by medical experts on the quest to find better therapies and a cure for this disabling disease. It was empowering to fine tune my advocacy skills and get pointers from the experts. And, most importantly it was invigorating to go to Capitol Hill and communicate our need FOR A CURE to the decision makers of this powerful nation. For all of this, I thank Joan Samuelson and the dedicated staff at PAN for giving us the tools to effectively implement our voices. Thank you for a wonderful conference!!