Life was going just fine for Don Ransom until one day he realized the right side of his body wasn’t moving properly.
“I thought it was my rotator cuff problem. I tore it a long time ago so I figured that’s why it was like that,” said Don who also thought he had a stroke.
His wife, Terri, convinced him to see a physician who referred them to a neurologist. The neurologist told Don he had Parkinson’s disease.
“It was like a kick in the head. Being an athlete I thought ‘this is it. No more sports.’ There are so many other worse things out there that I could have gotten. But I figured the lesser of two evils was Parkinson’s so I could deal with that,” said Don.
Over the past nine years, Parkinson’s has taken its toll on the man who once enjoyed playing tennis, baseball, basketball and running marathons. Don said every day it takes a little bit out of you – each day poses new challenges.
Some days it’s difficult for Don to get out of bed let alone attend church or see his beloved Indiana Pacers play live. When he gets nervous his hands shake more than normal. Eating with utensils has become a real challenge so Don has resulted to primarily eating foods he can pick up with his hands.
“Some things you learn to do and take for granted – like brushing your teeth or opening up a can of pop. For me, that’s a job,” said Don. “But really, any day I get to wake up is a good day.”
As the disease progressed, Don eventually had to retire from his job at the U.S. Postal Service. Although there are people with Parkinson’s who drive, he chose to stop driving. He grew tired of public whispers and stares at his condition, therefore Don has become somewhat of a recluse – even with his own family. He is adamant about people not feeling sorry for him.
Terri Ransom has had to take on much more responsibility now that Parkinson’s has significantly affected Don.
“It’s about understanding what he goes through. I’ll say ‘Don, why can’t you…’ or ‘Don, you didn’t do that.’ He’ll say, ‘you don’t understand this disease.’ He’s right, I don’t,” said Terri. She struggles with her own illnesses such as diabetes. Their young-adult children Don Jr. and Sienne, help when needed.
Although the Ransoms have found ways to bring a sense of normalcy to Parkinson’s disease, this condition has devastating effects on people’s bodies and lives.
Parkinson’s disease is a condition in which a region of the midbrain, called the substantia nigra, degenerates. That part of the brain is involved in coordinating motor activities. This results in shaking of the arms or other body parts; stiffening of the muscles in the arms and legs; people tend to lean forward and not swing their arms and walk with very short steps; eventual changes in the ability to swallow and drooling; lower voice volume; and shaky, small handwriting.
Dr. Michael Sermersheim, board certified neurologist at Josephson-Wallack-Munshower Neurology and St. Vincent Hospital said Parkinson’s is more prominent in whites, however African-Americans are still highly likely to develop the disease. It is also more common in men than women. It affects 6 million people worldwide. Also, the older one gets the higher the risk of obtaining the disease, but it can affect children and young adults. Parkinson’s disease is also more likely to occur in those with repeated head trauma such as boxers and football players.
The issue with the disease is that many of the symptoms Sermersheim lists are typical symptoms that can happen to anyone, particularly older individuals. It’s the combination of symptoms that physicians look for when diagnosing Parkinson’s.
Another challenge is that typically the disease comes on slowly – so slow that many people don’t realize they have Parkinson’s.
“When people have sudden awareness, it’s because of some other illness that causes an acute change,” said Sermersheim. “If someone gets sick, all their Parkinson’s symptoms suddenly become more obvious.”
Unfortunately, there are only a few medications that help sufferers deal with symptoms. Sermersheim said currently the only effective way to slow down the disease is vigorous aerobic exercise. Doctors don’t know what causes Parkinson’s disease and currently there is no cure.
That is where the Parkinson’s Disease Foundation (PDF) comes into play. Its sole mission is to fund promising scientific research for better medications and eventually a cure for Parkinson’s while supporting people living with the disease through educational programs and services.
James Beck, director of research programs for PDF said one of the foundation’s primary challenges includes funding clinical trials.
“The brain is not easy to access. It’s not like other diseases where you can take a tissue sample and study it in a lab,” said Beck. “It also costs lots of money to run a clinical trial. Other trials could be a matter of weeks, but for this, we’re talking 18 months to two years for a Parkinson’s trial. The costs are sometimes insurmountable for certain companies therefore there are very few companies tackling this issue.”
Another challenge is finding willing people to participate in clinical trials, particularly Blacks.
To gain momentum in their cause, the foundation has started the Parkinson’s Advocates in Research (PAIR) program. Through in-person trainings and an online course, the program provides people touched by Parkinson’s with the knowledge and skills needed to “pair up” with scientists and health professionals in advancing research and speeding new treatments. The Ransoms participate in this effort.
Don found out about PAIR from a PDF newsletter. He researched the program online and decided to attend the three-day conference. Terri was elated Don wanted to participate and supported him. They sought hope from others with Parkinson’s and came back to their home on the Northwestside of Indianapolis ready to educate the public.
In addition to participating in PAIR, the Ransoms have created a website called MinoritieswithPD.com. Don is able to use a computer and emails others who have been affected by Parkinson’s.
“This is a marathon, not a sprint. You just have to find your way to cope with it,” said Don. Despite his condition, he still enjoys watching sports on TV.
Familiar faces with Parkinson’s disease
Muhammad Ali, boxer
Johnny Cash, musician
Michael J. Fox, actor
Billy Graham, evangelist
Pope John Paul II, Catholic pope
Janet Reno, former U.S. Attorney General