By Shaun Ryan
If you are diagnosed with Parkinson’s disease or essential tremor, you are not alone. And, with the resources available right here in Northeast Florida, you can really improve your quality of life.
This is the message that Alaine Keebaugh, Ph.D., wants to share.
“I want them to know where they can get these resources so they don’t feel isolated,” she said.
To achieve this, Keebaugh and others have created support groups for patients and caregivers of Parkinson’s disease. And starting this fall, they’ll be launching an essential tremor support group.
Neurologists will talk to attendees about current research and medications, and physiotherapists and occupational therapists will talk about the importance of exercise.
Groups meet at the COA Center at Flagler Health + Village, 351 Town Plaza Ave. at Nocatee.
Keebaugh, who holds a doctorate in genetics from Emory University School of Medicine, has had a front-row seat to some of the latest developments in the field of neuroscience. While at Emory, she observed a deep brain stimulation procedure that determined the course of her working life thereafter.
“It was one of those times in your life where you get shivers down your neck,” she said. “It was like: This is what I was supposed to do.”
On the recommendation of a Mayo Clinic surgeon, deep brain stimulator maker Boston Scientific hired Keebaugh. She and her husband moved from Atlanta to Jacksonville. Here, she got involved with Jax Hope Inc., a non-profit organization that supports people with Parkinson’s disease.
Parkinson vs. ET
Although both disorders involve tremors in sufferers, Parkinson’s disease and essential tremor (often called ET) are different. People with symptoms should see a doctor.
Parkinson’s disease is a neurodegenerative disease, and those with it experience tremors even when at rest. It is perhaps the more serious of the two because it gets progressively worse as neurons in the brain are lost.
Sufferers may eventually experience difficulty walking. They may become tired and cognition may be affected.
Although a small percentage of cases may have a genetic link, experts still don’t know what causes it.
Early signs may include a slight tremor in the hand or the inability of one arm to swing when the person walks. Some people report a loss of sense of smell, trouble sleeping, and constipation long before they are diagnosed.
ET, an action tremor, is not neurodegenerative. At rest, the victim appears symptomless, but the tremor appears once the person reaches something. They may have difficulty eating or drinking or signing their name. Otherwise, they are cognitively and physically intact.
ET is about 10 times more common than Parkinson’s disease, and about half of cases are hereditary.
An early sign could be a slight tremor in the hand. It may gradually become more noticeable and change sides and may even cause head shaking or voice shaking.
There is no cure for either disorder, but deep brain stimulation improves the lives of sufferers.
find their life
Keebaugh plays a key role in deep brain stimulation procedures and has seen their effectiveness firsthand.
“For many of these patients, it’s the first time they haven’t had a hand tremor in maybe 20 years,” she said, calling the experience “really rewarding.” .
Unfortunately, some surgical candidates fear it and choose to forego this revolutionary treatment option. Keebaugh said it’s not as invasive as it looks and “the quality of life it can give these people is amazing.”
“We can literally do this two-hour procedure and the tremor is gone,” she said. “It literally brings them back to life.”
After careful planning, the surgeon makes a small incision and opening in the back of the skull and inserts a wire-like electrode. This is connected to a battery placed under the skin under the collarbone. Throughout this time, the patient is awake but feels no pain, and the neurologist talks with the patient throughout.
Once the procedure is complete, the neurologist asks the patient to hold out a still trembling hand. Then Keebaugh turns on the device. And the tremors stop.
“They get symptom relief immediately after surgery,” Keebaugh said.
Once implanted, the programming can be adjusted according to the evolution of the disease.
This procedure is effective for Parkinson’s disease and ET.
Keebaugh said she had a “pretty cool job”.
“It’s exciting and rewarding,” she says. “You see people improving.”
The support group meets at 3:00 p.m. on the first Wednesday of each month. At the next meeting on August 3, Keebaugh will present “Advanced Treatment Options for Essential Tremor and Parkinson’s Disease.” The public is welcome.
Those interested in learning more about the support group meetings can email Pam Brunell at [email protected]
Additional support group information for the First Coast region is available at jaxhopeinc.org/support-group-assistance or by emailing [email protected]