New treatment for Parkinson’s
With Parkinson’s disease afflicting up to one million people in the United States, a number of island residents and their relatives have found themselves struggling with the debilitating disease as well.
On Tuesday, July 10, 2018, the Senior Advisory Committee sponsored a talk at the Community Center by Mary Ellen Thibodeau, RN, Coordinator of the Information and Referral Center of the American Parkinson’s Disease Association (APDA) at Kent Hospital. The program drew 26 islanders.
Acknowledging some successes from the traditional medications and therapies prescribed for treating Parkinson’s, Thibodeau pointed out that physicians have developed a perhaps lesser-known surgical procedure—Deep Brain Stimulation (DBS).
Pacemaker for the brain
DBS, Thibodeau said, was pioneered twenty years ago, noting it might be thought of as a “pacemaker for your brain.”
This operation has been credited with some astonishing results, though Thibodeau stressed the “procedure is different for everyone.” Still, she added, it has been known to reduce medication doses, has in some cases significantly improved quality of life, and, in the best situations, has returned four to six hours of normal daily living to patients.
Thibodeau brought along a colleague, Mark Fiore, a representative of Medtronic, the technology company responsible for making Deep Brain Stimulation surgery possible. Fiore explained that Medtronic made the pacemaker and all the equipment for the DBS.
It should not be thought of as a cure, he said, but “rather a process to stimulate your brain to help you move better.”
Not always what you think
Thibodeau pointed out that “Parkinson’s is not always what you think it is... It’s more than just a hand tremor. Half of those diagnosed with the disease have no tremor at all.” Others do have what is referred to as “essential tremor.”
Nationally, doctors diagnose as many as 60,000 new cases each year. Parkinson's strikes more men than women. The average age of the onset of the disease is 60.
Among the early symptoms of the disease, Thibodeau listed “stiff shoulders, microscopic handwriting, hanging arms, and a soft voice.” She described two specialized therapies that target symptoms of Parkinson’s: one, known as “Big,” is a physical therapy program; the second is “Loud,” which focuses on speech therapy.
On the general effectiveness of medications, she noted that basically they “only cover the symptoms.” They seem to work well for a period of five to six years, but after that are less effective, she said.
Assessing the medical community in Rhode Island, Thibodeau said, “We have good primary care in the state, and good neurologists. Most of our doctors recognize the symptoms of Parkinson’s.” She extolled the medical team at Rhode Island Hospital, which is home to a specialized Movement Disorders Program.
Thibodeau pointed to a one-day program of evaluations — known as a Fast Track Day — that Rhode Island Hospital has established in order to accelerate individuals’ assessment for DBS eligibility. A nine-doctor team working in one day eliminates the need for Parkinson patients to go through weeks of tests.
The day of screening also allows physicians and patients to evaluate and weigh the benefits and risks involved in the DBS procedure. Both Thibodeau and Fiore stressed the importance of consulting with the patient’s physician before exploring the “journey to DBS.”
Thibodeau cited Dr. Joseph H. Friedman as an internationally known specialist in Parkinson’s. Friedman is affiliated with both Butler and Rhode Island Hospitals. She also mentioned a very fine team of neurologists working at R.I. Hospital in this field.
She explained that in addition to providing resources to patients, the American Parkinson’s Disease Association also supports patients’ families.
Those interested in learning more about the DBS procedure or the work of the American Parkinson’s Disease Association may write Mary Ellen Thibodeau at firstname.lastname@example.org or call (401) 736-1046.