Deep brain stimulation helps Parkinson’s patients get back to their lives
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.
For more information: Heather Bonecutter, Communications Specialist, 304-285-7256
Manahan recognized as top advocate in America for Parkinson’s
CHARLESTON, W.Va. — Charleston’s George Manahan has been recognized for his work to advance Parkinson’s research by the Michael J. Fox Foundation. During a recent event in New York City, Manahan was presented with the inaugural Hero of Advocacy Award by the foundation for his longstanding efforts to bring awareness of Parkinson’s to West Virginia.
“I didn’t even know they had an award since it’s the first time they’ve given the award. What it does is highlight the great things we’re doing here in West Virginia and the partnerships with West Virginia University, CAMC, and Marshall Health. It was very surprising, but at the same time I think it highlights all of the great work we’re doing here,” said Manahan.
Manahan was diagnosed with Parkinson’s Disease in April 2010 and set out to make research to find a cure his mission. At the time, there wasn’t much support in the Charleston area.
“There were no activities or programs in Charleston specifically. We’ve created things from the bottom up,” he said.
Among the highlights is the West Virginia Fox Trot, a benefit race and fundraiser which has generated more than $530,000 in the past 10 years for the Michael J. Fox Foundation. Manahan of late has successfully shepherded legislation through the West Virginia Statehouse and had it signed by Governor Jim Justice for creation of a Parkinson’s Disease Registry. He’s also successfully persuaded U.S. Senator Shelley Moore Capito to be the lead sponsor and introduce the first-ever legislation in Congress solely devoted to ending Parkinson’s.
Fellow Charleston Support Group member Chelsea Kinzinger, whose father has PD, introduced Manahan at the gathering.
“George has demonstrated his unwavering, steadfast commitment to getting things done as both an advocate and a patient, particularly so when it comes to making powerful and needed impact with positive, forward-thinking, common-sense recommendations for new laws and government funding for Parkinson’s,” Kinzinger said.
“In West Virginia, we’re simply one step away from an individual who can make a decision. In other states, it’s two or three degrees, in West Virginia it’s just one degree. We know who the decision-makers are in West Virginia and that’s half the problem. We can go to them and hopefully seek some change that needs to occur,” he said.
Manahan said he’s encouraged about the level of research and feels strongly Parkinson’s could one day be eradicated.
“Research is advancing in a lot of areas. There are new drugs coming out there are new mechanical devices. We’re excited about the future. It’s a great time to have Parkinson’s if you’ve got to have it, he said.
WV Parkinson’s Registry Will Help Search for a Cure
CHARLESTON, WV (April 11, 2022) – There is no cure for Parkinson’s disease, but new efforts in West Virginia may help speed therapeutic research.
West Virginia is believed to have the nation’s third highest population with Parkinson’s disease. But that’s an estimate. The numbers may be higher. Experts say the research is lacking, and there is still too much unknown.
On Monday Gov. Jim Justice signed House Bill 4276 into law, creating a West Virginia Parkinson’s registry. He said the data collection and research effort marks a new beginning to help eradicate a terrible ailment.
“It is the first step to putting us on a pathway to solve the riddle,” Justice said.
George Manahan is a West Virginia business leader and activist who lives with Parkinson’s. He said the charting project will collect statewide data that medical experts say will lead to new research findings to help stop, slow or reverse Parkinson’s.
Manahan said the more than 7,000 West Virginians who also live with the degenerative brain disease can help provide answers.
“Our new registry will provide solid data of how many people in our state have the disease and where they live,” Manahan said. “We’re going to look for clusters. Are they in a certain location? Do they work in a certain industry? Hopefully the data will lead us to answer questions like what causes Parkinson’s disease, and can we find a cure.”
Manahan said the data collected will be used by in-state researchers that can enter into an agreement with another state registry. The data will also be sent to the Center for Disease Control and Prevention, where it can be used by national and international researchers. Manahan said growing the database will widen the search for a cure.
Dr. Ali Rezai, of the WVU Rockefeller Neuroscience Institute will lead the registry effort. Along with WVU, registry research will include doctors and patients from Marshall University and Charleston Area Medical Center. Rezai said West Virginia is already a national Parkinson’s treatment leader.
“We have patients from 30 states come to West Virginia for the care of their Parkinson’s,” Rezai said. “We are leaders in the world for advanced therapeutics with deep brain stimulation, focused ultrasound, treating Parkinson’s tremor and gene therapy starting in a few months.”
West Virginia is the first state to partner with the Michael J. Fox Foundation in establishing a registry.
West Virginia is also the first Appalachian state and first rural area to have a Parkinson’s registry. Rezai said the work here is long overdue.
“Many of the studies are done in large metropolitan cities,” Rezai said. “It’s time to learn more about what happens to the Parkinson’s community in Appalachia and rural states.”
(Courtesy of WV Public Broadcasting)
Boxing program for Parkinson’s patients celebrates first year with results, new video
CHARLESTON, WV – Charleston’s Rock Steady Boxing program for people with Parkinson’s disease was initiated in June 2016. The international boxing-based exercise platform (www.rocksteadyboxing.org) was started in Indianapolis and helps people battling with Parkinson’s with strength, stamina, agility, balance and more. There are over 500 Rock Steady affiliates around the world with almost 20,000 participants. The Charleston Rock Steady program is only one of two Rock Steady programs offered in West Virginia.
“I’m inspired every day by the effort, determination, and grit that each person gives,” said Jamie Tridico, owner of Advanced Physical Therapy, and the class leader. “It has been incredible to see the progress in every person who participates.”
The class is part of three free exercise programs offered by Tridico and the Charleston Parkinson’s Support Group. The exercise class schedules, as well as the schedule of support groups, can be found under the Resources section on this website.
The Charleston Parkinson’s Support Group also unveiled a new video, produced by Filmanatix, promoting the Rock Steady Boxing program and the results that it is having in the daily lives of its participants.
“In just five years, the Charleston Parkinson’s Support Group has established free exercise programs, two monthly support groups and 5K race that raises over $50,000 annually for Parkinson’s research,” said George Manahan, support group coordinator. “We are proud of the impact we are making in people’s lives.”
For more information, contact George Manahan at (304) 546-6174.