The power of movement: Org provides support for Parkinson’s patients and their caregivers
Don and Judi Himmel are upbeat, positive people. That helps a great deal for dealing with their situation.
It has been 19 years since Don Himmel was diagnosed with Parkinson’s disease. Judi, his wife of 58 years, is a registered nurse whose practice dealt with Parkinson’s and related conditions before her husband contracted the disease, so she started with a solid base of knowledge to help her act as his caregiver.
“I was going to say I’m a retired RN, but a nurse never really retires,” said Judi Himmel, sitting in the living room of the Marco Island house where they spend six months each year. “I was a clinical nurse specialist. In my professional like, I led support groups, working with people who have neurological conditions.”
That probably makes her the ideal person to help manage her husband’s ongoing care. Don will tell you that, in his whispery voice. “She’s great,” he said.
In his case, Parkinson’s has progressed slowly, although more and more, he finds himself unable to do the things he would like to. Don spent his professional career as an industrial engineer in the Milwaukee area, and still supports the Green Bay Packers. But more active pursuits have slipped away.
Tennis went away, and two years ago, he was no longer able to drive. An avid walker who used to love long walks, he now uses a walker, shuffling slowly after Judi gives him a boost to get him standing. Judi takes him to the beach, including Tigertail, and he uses the balloon-tired beach wheelchairs.
Keeping moving is critical for “Parkinsonians,” as those in the profession refer to people with the condition, said Linda Goldfield. She is executive director of the Parkinson Association of Southwest Florida, whose mission is to help Parkinsonians and their caregivers.
“Movement is very important. It’s the only thing that delays the progression of the disease,” she said. The Parkinson Association, an independent nonprofit that is not a subsidiary of any of the national organizations involved with Parkinson’s – or Parkinson, in Goldfield’s preferred formulation, sponsors a wide range of classes and activities in various locations throughout Southwest Florida to help Parkinsonians stay active.
On Marco Island, Don goes to exercise classes that are held every Tuesday and Thursday, alternating between St. Mark’s Episcopal Church and Marco Lutheran. During the weekly four-hour respite class, they also host a support for Parkinson’s caregivers, which Judi attends. All programs are provided free of charge.
“Caregiver support is vital. We care just as much for the caregiver,” said Goldfield. “The stats for caregiver burnout are scary. About 70 percent of caregivers die before their loved one.”
One of the difficult early challenges in dealing with Parkinson’s is nailing down if that is really what you are dealing with.
“No two people have the same prognosis. We call it the ‘snowflake disease’ – people present in so many ways,” said Goldfield. “Many Parkinson symptoms mimic other degenerative diseases.”
“It’s not an easy diagnosis,” agreed Judi Himmel, the opposite of “you’ve seen one, you’ve seen ’em all.” “We say, ‘you’ve seen one Parkinson’s patient, you’ve seen one.’ In Don’s case, the first thing was, he noticed he lost his sense of smell.”
“At first, they thought I had a stroke,” said Don.
But losing the ability to smell is often a Parkinson’s marker, along with trouble speaking, tremors of the hand, impulse control, balance issues, rigitdity, joint pain and cognitive impairment. Again, each case is different.
Parkinson’s is twice as likely to strike men as women, and usually is associated with old age, although some people, notably including Michael J. Fox, develop the condition decades earlier. There is currently no cure in sight, said Goldfield. Medications can help with symptoms, and music often helps a Parkinsonian’s mood. This is very useful, as understandably, those with the disease are at least 40 percent more likely to deal with depression.
“There are wonderful national organizations, mostly fundraising trying to find a cure,” said Goldfield. “We concentrate our efforts on helping people live well through the progressions. We take our programming into the community, and it’s all done in a group format.”
From her vantage point as a former provider of such services, Judi Himmel said the Southwest Florida association does an excellent job of supporting those with Parkinson’s.
“They have wonderful programs. The respite care has a different theme every time. We’re very lucky with the speech therapist” provided by the association.
“People are devastated when they get the diagnosis – a chronic illness for which there is no cure. But there are many tools available to help you cope,” said Judy.
“Don has really been a trooper. For me, this is a labor of love – he’s the love of my life.”
To learn more, volunteer, or donate to help the work of the Parkinson Association, call 239-417-3465 or go to www.parkinsonassociationswfl.org.