David Vaughn

It was an exciting moment when I brought our mail into the house and saw in a letter from the Parkinson's Action Network that I had been awarded a scholarship to attend the 2005 11th annual Public Policy Forum and Congressional visits in Washington, D.C. There was to be more excitement awaiting me upon arrival at the hotel. I met face-to-face with friends with whom I have corresponded by computer and mail for several years. These persons and I have shared our hurts, our struggles, our losses, our accomplishments, and the work of Parkinson's advocacy. I was standing among friends who have made my days brighter as they shared of themself with me.
 

I was amazed and thankful for PAN's choice of topics for presentation and discussion, with the researchers and professionals in Parkinson's disease knowledge and advocacy who were invited to participate, with the care and hospitality we received from PAN's employees and volunteers, with the advocacy training, and with the scheduling of our visits to Capital Hill with our respective representatives and senators.

I left Washington, D.C. with fresh knowledge and advocacy training, with a deep appreciation for the work of the Parkinson's Action Network, and with hope of better therapies and for the ultimate cure of Parkinson's disease. I left though with something else....with the bonding with precious persons with whom I share a common disease. There was a warm feeling we were among family, and in this family there is caring for one another.
David R. Vaughn
 
United Methodist Minister on disibility leave due to Parkinson's disease
Congressional Coordinator for the state of Tennessee for PAN
Officer in the Lakeway Area Parkinson's Support Group
Member, chaplain, and member of the Angel Team for People Living With Parkinson's (PLWP)

I was diagnosed with young-onset Parkinson's disease in 1993 at the age of 35. I had to go on long-term disability in March 2000 due to motor fluctuations. I am a Congressional Advocacy Coordinator for PAN (Pennsylvania).
My book, PARKINSON'S DISEASE AND ME: WALKING THE PATH, was published in May 2003. I am currently taking distance education classes at Penn State World Campus to earn a certificate in Writing Social Commentary. That subject seems to be right up my alley. I also do volunteer work for my church but my top priority is exercising to maintain my mobility.
 

I am single with no children but have three special young ladies in my life who are like nieces to me, Rebecca, Natalie, and Katie. I also have a very rambunctious cat named Parker who has taken over my putting green. He uses his front paws as putters.

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!!