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Support available for people struggling with Parkinson’s | Sound Off
By Eileen Brown
I felt compelled to write this after reading of a local woman’s dismay over her husband’s disgnosis of Parkinson’s disease (June 23, Whidbey News-Times). She regrets they may not realize the dreamy future they had planned on, but one must remain the pillar of strength for their partner and never abandon hope.
I believe there are more people than we know living with Parkinson’s up and down Whidbey Island. While most deal with it through their family doctor or neurologist, some never get help and remain isolated.
Medical research continues to look for what causes this puzzling disease that strikes people in their prime (Michael J. Fox has youth onset Parkinson’s that usually shows up when people are in their 30s), or at about age 60, just when you are about to stop working so hard and enjoy life more.
What causes Parkinson’s? In a nutshell, there is a breakdown of nerve cells in the brain that results in not enough production of dopamine. Not enough of this naturally-occurring substance affects your body’s ability to control its movements so people with PD might exhibit a tremor or shuffle when they walk, muscles stiffen, you may have cognitive problems and swallowing difficulties. Eventually, some Parkinson’s people may experience dementia.
The condition follows its own course with each person. When I was diagnosed 10 years ago, I had a slight tremor in my right arm that has become more difficult to manage. Now I also have a tremor in my right leg. Parkinson’s can leave one fatigued, depressed and anxious over the future. My doctor said I was basically in the driver’s seat in controlling the severity of my symptoms, in other words, by reducing stress (no more packing appointments back-to-back in one day) and adding a rest period in the afternoon. The shaking is not as obnoxious.
Luckily for Parkinson’s people, there is Carolyn Hansen, an incredible Oak Harbor woman who lends her compassionate leadership to two support groups, one in Oak Harbor and one on South Whidbey. She arranges for speakers to visit, hands out news items, suggests carpools to a regional workshops, and copies stacks of material to read and pass along to those who aren’t quite sure if a group is for them. Support groups are a safe place to voice a concern or speak frankly about your experience. Everyone there has had associated physical problems and drug reactions; no one is encouraged to see a particular doctor or go it alone. Whatever is shared is held in highest confidence. There is trust among those who walk the same path.
I urge anyone with Parkinson’s to avail themselves of the North Whidbey Parkinson’s Support Group that meets at 1 p.m. on the first Friday of the month in the Cherry Hill Club House, 547 NW 12th Loop off Crosby Road, or the South Whidbey Parkinson’s Support Group, meeting at 10 a.m. on the second Tuesday of each month at the Bayview Senior Center. The North Whidbey Group established its own wiFi bowling league and made the front page of the recent Senior Center publication, The Bridge.
Carolyn is caregiver to her husband Wayne. She knows first-hand the importance of supporting those who care for PD people. She urges caregivers to bring their spouses or clients if they have PD or any other movement-related disorder.
You will receive a name badge, be offered a cold drink and pointed toward a comfortable seat that suits your hearing or sight. Then everyone settles down as Carolyn begins her announcements. For example, when the UW’s premier deep brain stimulation surgeon came to Mount Vernon, practically the entire group went and had a private audience with this expert. Last meeting, a dance teacher came to find out how much interest there would be in a dance class for PD people in Anacortes or possibly Oak Harbor at the Senior Center, and two people from Home Place Care described their services as respite caregivers and who is eligible.
Meetings run about 90 minutes to 2 hours so everyone has time for questions and follow up. Ramps and accessible restrooms are provided, of course. By the way, Carolyn will be happy to speak to you beforehand at 279-1785.
Parkinson’s isn’t funny, but we can still find the humor in small things. It’s good to laugh in the face of a degenerative disease that can dramatically affect one’s future. Not personally affected? You probably know someone who is. The disease is on an upsurge in other countries, but the causes and cure are still to be found.
Parkinson’s people are all around you. Look into our faces and you will see a reflection of yourself. We refuse to give up. Staying informed makes an enormous difference. If you know someone who ought to read this, please pass it on.
Eileen Brown, former columnist for the Whidbey News-Times, lives in Oak Harbor.