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Local Heros

Davis is one of many PD patients who does amazing things and maintains a positive attitude despite the debilitating effects of his disease. We meet people in every city who have overcome the great challenges posed by PD to make a significant impact in the world and we would like to share those stories with you. Do you know someone with Parkinson’s who inspires you in some way (athletic endeavors, positive attitude, etc.)? Please send their contact info to the DPF at info@davisphinneyfoundation.org with "Local Hero" in the subject heading along with a short description of why they are inspirational. We plan to feature a variety of local heroes on our website in the coming months.

John Ball

John Ball

John Ball is a 64 year-old Calilfornian who was diagnosed with PD 25 years ago at the age of 39. His children were 3 and 4 years old at the time of his diagnosis. John is fortunate that the primary treatment for PD symptoms, levodopa/carbidopa has worked very well during those 25 years. He takes several adjunct medications (COMT and MAO-B inhibitors as well as Amantadine, and a dopamine agonist) and has been able to regulate his symptoms without surgical intervention.

John writes, "When I was diagnosed and began taking Sinemet, I felt as if my body had been given back to me. I could once again run and hike and ride my bike, and I began to do these things immediately. I pushed myself to run a couple of 5k races, then a 10k, then a half-marathon once a year to check my state of wellbeing. Eventually I began to wonder if I could do a marathon. Finally, 13 years after my diagnosis, at 51 years old, I ran my first LA Marathon in March of 1996. When I finished, 4 hours and 29 seconds after the start, and nearly 2 hours behind the elite runners, I said "NEVER AGAIN."  I was thinking of those nearly 4000 runners who had finished ahead of me. My wife quietly pointed out that there were over 17,000 runners still out on course behind me."



That 29 seconds nagged at John and he began training for his next marathon A year after the first LA Marathon, he ran his second in 3:59:10. Although he hasn’t exceeded that time, John has completed 12 of the last 13 editions of the LA Marathon, plus a few others. His total stands at 18.

The best thing about running long and hard is that it clears my mind and refreshes my spirit. I also believe that it is replacing or refurbishing brain cells that have been attacked by the Parkinson's disease process. I don't have any concrete evidence that says I'm much better off than I would be had I not exercised as diligently, but I certainly believe it to be true. And I've seen the value of exercise in other PD patients. We all know exercise is good for our bodies, brains and emotional wellbeing -- irrespective of any disease we may be facing.  I say that it's even more important to someone facing a chronic disease like MS, Alzheimers, PD or diabetes. Besides, it's one of the few things we have almost complete control over.  We can decide what kind of exercise is best for us, as well as how much to do and when to do it. I say 'Do what you like, and do it often!' Running Catalina was very special to me because it was something I had long dreamed of but seemed out of reach. Now I know that it was there within my grasp all the time...I just needed to believe in myself and trust in the support of my friends and teammates."



Cheryle Brandsma

Cheryle Brandsma
Photo courtesy of Sundance Images

We met Cheryle Brandsma for the first time at the Copper Triangle ride in August of 2007. Completely unsolicited, she walked in to the DPF booth with checks in excess of $8,000! As we talked to Cheryle and learned more about her story, we discovered what a great source of inspiration she would be to others. Cheryle went on to become our biggest pledge ride fundraiser of 2007!

Cheryle, who reigns from Durango Colorado, was diagnosed 5 years ago at the age of 56. Cheryle describes her biggest challenge as being able to interact with the special people in her life. The PD does not allow Cheryle to display emotion as she used to, which created issues with her daughter. While the medication helps with this issue to an extent, it continues to be a challenge. Cheryle and her family are more aware of the problem and she finds other ways to communicate her reactions. Cheryle also finds help and inspiration from her psychologist, a paraplegic for more than 30 years.

Like many patients with PD, Cheryle had to deal with the depression associated with being diagnosed with a chronic illness. Cheryle writes, "My future looked dismal and I felt as if I had no control of my life. For years I had skied, hiked and climbed peaks, but knew I would no longer be able to do those things. Then a friend suggested I try Tai Chi, which seemed to improve my balance. Natalie, Maynard (my husband), and friends encouraged me to resume hiking and cross country skiing, which I now do with my family. A few years ago I started purchasing one-year Colorado hiking certificates. Then last year I decided to go for it and purchased the five-year pass. I think that change in attitude was an important milestone for me. I was ready for the 2007 Copper Triangle challenge. I have Parkinson's disease but that does not define or control me."

About one month prior to the to the Copper Triangle in 2007, Cheryle's family and friends encouraged her to participate in it. She had not ridden a bicycle for more than seven years because of issues with PD and had minimal experience with fundraising. She purchased a bike with low gearing that allowed her to feel more stable. She started riding and continued her hikes in the mountains to help acclimatize her to the elevation along the ride. She wrote a letter to family members and friends and the donations started coming in. At 61 years of age, Cheryle was able to ride 61 miles of the tour AND be the leading pledge ride fundraiser.

"People see me shake and move uncontrollably in an uncoordinated manner and stumble over words and are impressed that I can push myself to ride, climb peaks and accomplish other challenging activities. I had been afraid that strenuous exercise might make the Parkinson's worse, but now I know better. I'm getting stronger and I feel better mentally and emotionally. People frequently tell me how good I look. Doing something active to help support research makes me feel more in control of my life and is a tangible way of helping others. That gives me both joy and energy. I accept that I do have and will always have this nasty, progressive disease. I will enjoy an active life for as long as possible. Other sufferers deserve to experience the joy that I have found in confronting the fears and limitations created by this disease. I once read a meaningful quote from Norman Cousins that speaks to me, "Don't defy the diagnosis, but do try to defy the verdict."



Scott Eltringham

Scott Eltringham

Scott Eltringham, who lives in Washington D.C., was diagnosed with young onset Parkinson's disease shortly after his 31st birthday in 1999. Scott has ridden his bicycle over 25,000 miles with PD including a self-supported ride from Seattle to San Francisco and another from Boston to Bangor ME.

His first symptoms were the inability to rapidly wiggle his right fingers, and a tension in his right leg during bike riding. Several months of testing revealed that he had PD. Fortunately, the medication worked well for him for the next 6 years. Scott writes, "For me, PD is less about spasmodic movements but rather slowed movement, like moving in molasses without the sense of resistance, more pronounced on my right side. The main side effect was dyskenesia, sometimes so bad that it was difficult to sit in a chair. Due to the worsening side effects of the medication and two bad bike falls, I had to stop bicycling in September 2005: permanently, I thought."

Scott made the difficult decision to have Deep Brain Stimulation (DBS) surgery later that year. The surgery improved his life enormously, almost eliminating troublesome nighttime and morning dystonia, caused by withdrawal from the medication. An adjustment to the DBS a year later curbed the dyskenesia significantly enough that he got on his bike again on Memorial Day in 2007. When Scott had the surgery, he had an idea in his head that he would ride the Sunflower Revolution as his comeback ride in 2007. He did. "As I neared the finish, I was reflecting on the outstanding support of the other members of my riding group, Team Cholesterol, all of whom drove to Cincinnati to ride with me. Then as I crossed the finish line, the ride announcer said that we had raised more money than any of the other teams. What was already a powerful moment blossomed into a feeling so strong that it brought tears to my eyes. When I found that Davis was waiting at the finish line for my team, and it was all I could do to hold myself together."

"I do not think of myself as a hero, despite being called that by several people. My heroes are people like my wife, Sarah, and my friends and riding companions on Team Cholesterol; people who walk beside me not because they have to, but because they choose to. I think I inspire people with my attitude. My thinking is this: I could live worried or not worried; either way I'll get wherever I'm going. I know which way I'd rather spend my time. Sometimes that is easier said than done, but that's my philosophy. Part of what keeps me going is riding; both in the physical and mental sense. Physically, use it or lose it. Mentally, no matter what the PD or medication side effects are doing to me, the riding is refreshing."

Scott says that his greatest challenge is to get everything done in a day. "There are so many things to do. PD made me feel that way before surgery, because when the medication wore off, sometimes I felt like I had been hit over the head with a brick. The DBS showed me how I had been letting my world shrink, and allowed me to reopen it to all the interesting things in the world."

*Scott and Team Cholesterol raised over $7,000 for the DPF in 2007. In addition, Scott and his best friend, Jim Wade, co-authored a book of rides in the D.C. area and donate the profits to the foundation, so far totaling more than $10,000. Thank you Scott and friends for your support and being a true example of living life to the fullest!



Doug Bahniuk

Doug BahniukFebruary's local hero is Doug Bahniuk who rode his bike from Boise ID to Denver CO last summer, covering some 900 miles and crossing several mountain passes, including the 12,000 foot Loveland Pass.

Doug is 55 years old and lives in Ohio; a long time cyclist, he was diagnosed with Parkinson's disease in 2004. Doug describes his greatest challenge as not feeling sorry for himself and giving up. He writes, "Sometimes it's a temptation, after all depression is a common part of the disease. I know where this thing is going; I'm a biomedical engineer. So many people depend on me - my employees, my family, my ten year-old son -- and I know that to them, I am a leader. So I try to lead by example; I take the hardest job, I don't slack off, and I don't want anyone's pity. I still skydive and I continue to hunt. I just try to adapt (like using one finger to type) and say to myself this is just a new phase of life, I can handle it. There is no denying that Parkinson's makes life hard. Using my hands can be difficult, besides uncontrollably shaking, they often go numb. A couple of times I've lost almost all the strength in my left hand. But I can overcome these little things. When I start shaking I wait until it stops, when I lose strength I improvise however I can. It just takes a lot of patience. My philosophy about Parkinson's is: I won't let it dominate my life. By itself it's not going to kill me, at least not yet. It might cause me some difficulties on a ride, but I'm not going to worry about it, at least I'm doing something I love. And I refuse to be a helpless cripple in bed, riding is my way of living the best way I can every day."

Facts About Parkinson's Disease

Parkinson's disease is a progressive disease. As more cells die the symptoms of the disease worsen and treatment becomes less effective.

- National Parkinson Foundation