Parkinson’s patients, caregivers find strength through grassroots support group
North Park resident David Higgins didn’t know what was wrong when he started feeling increasingly tired and weak, almost a decade ago. His feet resisted the urge to move, and walking across the room felt like moving through mud.
Then his friends noticed his changing walk and movements.
After experiencing slow but increasing symptoms, and ruling out other health conditions, Higgins was diagnosed with Parkinson’s disease in December 2011. Soon after, he formed a monthly support group with six other people who were diagnosed around the same time.
When the informal support group needed someone to work out the logistics of finding a meeting space and filing paperwork as a nonprofit, Higgins stepped up as a volunteer coordinator.
“None of us had any kind of professional experience with respect to counseling or helping people through difficult times,” Higgins said. “We had absolutely no experience at the time whatsoever, so I was pretty scared.”
Parkinson’s disease is a progressive and degenerative neurological disorder that impacts a person’s movement and coordination, according to the National Institute on Aging. Common symptoms include difficulty walking, lack of coordination, sleep problems, depression, memory difficulties, fatigue, shaking or tremors, but each person may experience a different combination of these at varying degrees.
There are treatments that can lessen symptoms by stimulating the brain or increasing dopamine levels, but a cure has not yet been found.
Building a community of people living with Parkinson’s disease and their family caregiver or care partners can make the daunting task of learning about a new diagnosis far less intimidating.
For Higgins, what started off as a small effort to build kinship among people going through a shared health issue grew to a large network of people, both living with Parkinson’s and caring for loved ones with the disease.
There were 400 to 500 people on the membership list by 2016, when Higgins made an offer to his doctor, Irene Litvan, to merge the network with the Parkinson and Other Movement Disorders Center at UC San Diego Health. Litvan is the director for the Movement Disorders Center and a neurologist at UC San Diego Health.
Today, the UC San Diego Parkinson’s Support Group Network is a resource for people living with the disease and their care partners throughout the county. As the COVID-19 pandemic stretches on, these meetings are continuing to be held virtually.
The network holds meetings for those diagnosed with Parkinson’s on the first, second and third Thursday of the month; meetings for care partners on the first, second and third Tuesday; and a monthly meeting for both groups on the first Wednesday of the month. There are also support group meetings for those with Young Onset Parkinson’s held on the second Sunday of each month.
Higgins’ husband, David Miles, has been at his side along the way, helping him both during the growth of the network and as his care partner at 比特币交易网home. Participating in the meetings has not only helped to educate Miles about Parkinson’s and the best ways to assist Higgins as the disease progresses, but it has also helped him to feel a sense of camaraderie as part of the community.
“I don’t feel quite so alone,” Miles said. “When you’re a care partner in the moment going through daily life, things happen, and with Parkinson’s, sometimes they’re surprising. We think of Parkinson’s as a movement disorder, and it’s always overseen by neurologists who are trained in movement disorders, but that’s just because those are the symptoms you can see.”
Chula Vista resident Diane Belcher was treated for a misdiagnosed resting tremor for several years before she was correctly diagnosed with Parkinson’s in 2016. Attending meetings through the Support Group Network has been critical for learning about and adjusting to life with Parkinson’s.
“I’ve learned through the meetings and not as much through my visits to the doctors, about things that I’m eligible for or will be really helpful for me in the long run,” Diane said.
Although it impacts about 1 percent of people and there are about a million people living with the disease throughout the country, according to the Parkinson’s Foundation, there is still little known about the disease, said Aaron, Belcher’s husband and care partner.
“Not all neurologists are really up on Parkinson’s, so the first neurologist that we were seeing was not too informed,” Aaron said. “We started our journey going from doctor to doctor, as many of the Parkinson’s patients do.”
Diane and Aaron said they’ve consistently attended meetings with the Support Group Network since she was diagnosed, and connecting with other people in their situation has been instrumental in helping them navigate the ups and downs of living with the disease.
“Whether it’s been in person or on Zoom, there’s something very powerful about the community and knowing that you’re not alone, knowing that people are overcoming challenges, and so if they can do it, so can I,” Diane said.
Diane recently received approval for deep brain stimulation surgery, where electrodes are implanted into the brain to carry electrical impulses that help decrease tremors and control motor symptoms, according to the Parkinson’s Foundation.
Throughout her journey, and as she takes these next steps to be treated, she has looked to those further along the path for guidance. In the future, Diane hopes to help someone else as so many other support group members have helped her.
For more information about the UCSD Parkinson’s Support Group Network, visit support4PD.org.
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