April is Parkinson’s Awareness Month
MORGANTOWN, W.Va. – Parkinson’s Awareness Month is observed in April to raise awareness about the disease and its symptoms. Parkinson’s is a disorder that affects the central nervous system, causing tremors, stiffness, and difficulty with walking and movements.
In recent years, new medical, surgical, and minimally invasive treatments for Parkinson’s and other movement disorders have emerged that help patients improve their function and get back to activities they enjoy.
Susan “Sue” Chapman, 67 of Charleston, retired two years ago from her position as chief financial officer for the School Building Authority of West Virginia, though she continued to work as Director of Special Projects, assist with bond work, monitor legislation, and provide training for the organization until she fully retired. An athlete all her life, she noticed a tremor and dystonia, involuntary contraction of muscles, when she was busy during legislative session and didn’t have time for her favorite activities, extreme mountain biking, tennis, and ballet.
“That’s when everything really started surfacing. I knew something was wrong. I didn’t know what, but I knew something was wrong,” Chapman said. “I grew up with three brothers, and I’ve always been active. When I had to give up mountain biking, it wasn’t easy.”
When Chapman’s symptoms didn’t quite fit an essential tremor diagnosis and began to indicate Parkinson’s, her primary care physician referred her to Ann Murray, M.D., WVU Rockefeller Neuroscience Institute neurologist, for further testing and diagnosis. When Ali Rezai, M.D., WVU Rockefeller Neuroscience Institute executive chair and neurosurgeon, joined the Institute, Chapman already knew she wanted deep brain stimulation (DBS) to help manage her Parkinson’s.
Deep brain stimulation is a surgical procedure in which electrodes are implanted into the brain to deliver electrical impulses that control abnormal brain activity associated with Parkinson’s and other movement disorders. The electrical impulses are controlled by a programmable controller that is placed under the skin of the chest.
“I had gotten to a point where I knew how to hold my hands a certain way or sit so that I could look at someone from my left side so they wouldn’t notice the dystonia pulling my body,” Chapman said. “I researched DBS because the routine required by my medications began to control my life. I couldn’t eat protein within a certain time of taking my medication because it wouldn’t be as effective. My medication left me feeling foggy and not myself.”
Dr. Rezai performed Chapman’s first DBS surgery in June 2021 and the second later that year. She had already seen an improvement in her symptoms from the first procedure, but marks Dec. 29, the day that she was able to see the result of having both sides turned on, as the day her life changed.
“DBS gave me the ability to come off the medication that was causing me to strictly monitor my diet and be free from the head fog it caused,” Chapman said. “My husband, Bill, likes to say that my IQ went up 30 points, but it’s the freedom from the side effects of my medication. I had pills in my pockets, purses, office, and cars. If I didn’t have them, the tremors would come back. I was able to taper off the medication and not take it anymore.”
“Bill says that I’m his hero because of all that I’ve been through, but I tell him ‘the people that did everything are the heroes, sir. I’m not a hero.’”
Chapman no longer struggles with tremors, movement problems, and dystonia associated with Parkinson’s disease. And while she hasn’t returned to tennis, ballet, and mountain biking, she has become a pickle ball player and has plans to ride her bike on Rails to Trails with her husband.
She is still hard at work in the legislature, and successfully advocated for more funding to support the WVU Rockefeller Neuroscience Institute’s research on Parkinson’s. She is also an advocate for Parkinson’s patients and works with patients who are hesitant about DBS, going as far as shaving her head to show her support and solidarity.
“Dr. Rezai and Dr. Murray refer patients to me to talk about my experience,” Chapman said. “I tell them it’s a year-long journey, and you have to commit for a full year. People ask me if I was afraid. There was never any moment that I was afraid.”
“Bill also works with them because going through this affects the entire family, and it is important to know what you are facing. There are things your family should be ready for. You’ll come home without hair, and you have to work together during recovery.”
She recently attended the Michael J. Fox Foundation gala in New York and had the opportunity to meet others with similar Parkinson’s journeys.
“It was a humbling experience to meet these people and hear their stories,” Chapman said. “Having Parkinson’s and DBS makes you look at life through a different lens. Everything is crisper and clearer. I feel so blessed, and my whole family does as well. We are very thankful to everyone who has helped us on this journey.”
“Parkinson’s is not a death sentence. I’ve had many mantras in my life, and my mantra for Parkinson’s is ‘this will not define us.’ With the new treatments that have been developed, we have options, and this is the time to change our perspective about Parkinson’s.”
For more information about Parkinson’s disease and deep brain stimulation, visit WVUMedicine.org/RNI.