One couple's journey paves way for others
Editor's note: Messenger Post Media teamed up with the Parkinson's Foundation of Greater Rochester and UR Medicine Thompson Hospital to share this part one of a two-part series on Parkinson's in our community.
Dr. John Paul of Canandaigua says that looking back, he felt like something was going on, but the subtle changes in his movements were not all that bothersome. That is until one June day of 2002, when he could not get out of his chair. He visited his primary care physician and then a local neurologist. He underwent the most sophisticated testing available for Parkinson’s disease: The neurologist observed him walk down a hallway. John’s abnormal gait confirmed the diagnosis, and his journey with Parkinson’s disease began.
The symptoms of Parkinson's are variable, but the three hallmark symptoms of tremors, slowing of movement and a shuffling gait have been recognized since antiquity. By the 1960s, researchers had proved those symptoms are a result of decreased production of the neurotransmitter dopamine in a particular region of the brain. A combination of medications, called carbidopa–levodopa was developed, which converts to dopamine in the brain. This medication remains the back bone of treatment – supplemented by other drugs.
John was started on the medications. He and his wife, Pat Smith, entered what is known as the honeymoon phase of Parkinson’s disease. For the next five years the medications allowed John nearly normal activity. By 2008, however, at the age of 72, he was again having trouble walking and arising from chairs. The medications were helping, but not controlling his symptoms consistently. The prospect of being wheelchair-bound was looming for John.
John and Pat consulted with his Parkinson’s specialist and a neurosurgeon. Together, they determined that he might benefit from deep brain stimulation (DBS). This entails placing an electrode in the brain that is connected to a pacemaker-like generator. The electrical impulse from the generator stimulates the brain to produce more dopamine. The procedure was successful and once again, most of John’s symptoms were well controlled. However, the nature of Parkinson’s is one of gradual progression regardless of treatment. Being fully aware of the nature of his condition, John and Pat wanted to be pro-active and learn as much as they could about Parkinson’s disease and its management.
Soon after his recovery from the DBS surgery, John and Pat attended the annual Parkinson’s Foundation of Greater Rochester Symposium. There they gained information on support and treatment available in Rochester for families impacted by Parkinson’s. They were greatly encouraged by what was available, but discouraged that there was little similar support outside of Rochester.
John and Pat were married in 1989 while they were both working in New Jersey. Pat was a District Manager for ATT and responsible for a department of many employees. John was a Doctor of Veterinary Medicine working for a major drug company. He headed a department that developed new drugs and moved them through the FDA approval process.
John and Pat are people used to getting things done. Organizing and encouraging people to work together to achieve a goal is in their wheelhouse. They saw the need for a local Parkinson’s support group and soon had a plan in place. Twelve people attended an initial meeting in July of 2008; now over forty meet monthly at the Wood Library. In 2009 John obtained a grant from the FF Thompson Foundation which continues to help support the activities. The Parkinson’s Support Group of the Finger Lakes became John and Pat’s passion. Pat says, “The group is my job, I get to use my former work skills in retirement; it will be our legacy."
Support groups are an important part of the overall treatment of Parkinson’s disease. Medical management, including medications and surgery, is another part. Because of the specific deficits in speech and mobility, Speech Therapy and Physical Therapy form the third part of treatment.
In January of 2018, John became the first patient in a new program offered by the Speech Pathologists at UR Medicine Thompson Health, called Speak Out!. Over the course of twelve individual sessions, each patient is taught exercises to improve speech volume and articulation. The results can be dramatic. Therapist Inga Simming remembers one robust man whose voice had become weak. After working through the program his voice regained its former depth and power. "Now," Inga said, "his voice matches his body."
The individual sessions are reinforced with weekly group sessions called the LOUD crowd. These are held at Thompson Hospital and provide a time for graduates of the program to practice their new skills.
The most disabling symptom of Parkinson’s is that of decreased mobility, which leads to many other complications. Exercise and physical therapy are essential for averting those complications. Rehabilitation Services at UR Thompson Health offers an intensive program to improve walking and strength. Called LSVT BIG, it consists of sixteen sessions. Along with daily exercise and routine follow up, the patient can learn to walk faster with bigger steps, improve balance, strengthen their muscles and decrease pain.
Over the course of his 16-year journey with Parkinson’s, John has remained active and engaged with the greater community. He has sought out the latest treatments and therapies, and has benefited from them all. Unfortunately, over the last six months, his symptoms have increased. He can no longer walk without the use of a walker, he is much more fatigued, and needs help to safely bathe.
Parkinson’s is unusual for a progressive disease, in that even as symptoms worsen, they wax and wane day to day and even hour by hour. Families working with Parkinson’s disease experience life’s capricious ups and downs in a magnified way. It takes dedication, patience, and love to smooth that path as much as possible.
Dr. John Paul is a shining example of the resilience of the human spirit. He is frustrated with having to rely on a walker, with his speech problems, and with generally not being able to do all the things he wants to do. This accomplished, dynamic man has been given a hard road to travel. Along with Pat and many others he is continuing his journey with grace, humor, and determination.
The Parkinson’s Support Group of the Finger Lakes
Meets on the last Wednesday of the month. 1-3 p.m.
Thompson Health Department of Speech Pathology at (585) 396-6057
350 Parrish St.
Information for SpeakOut!
Thompson Health Rehabilitation Services at (585) 396-6050
350 Parrish St.
Information on LSVT BIG
Parkinson’s Foundation of Greater Rochester
1000 Elmwood Ave, Ste 1600
Rochester, NY 14620
Phone: (585) 234-5355
Moving Day Rochester
Moving Day Rochester, NY is the Greater Rochester Chapter’s annual fundraising walk event. It is a fun and inspiring fundraising event that unites families, friends and communities both large and small in the fight against Parkinson’s disease.
Where: Monroe Community College, 1000 E. Henrietta Rd., Brighton
When: Sunday, Sept. 30, 2018
Registration opens at 9 a.m., and the walk begins at 11 a.m.
Visit www.movingdayrochester.org to register or for more information
Any questions about how to get involved or how to donate to Moving Day, contact Kim Collins at email@example.com or (585) 234-5355