Parkinson’s group reacts to Williams’ death

by Jim Boyle

Editor

While the news of Robin Williams’ death and apparent suicide spread like wildfire the week of Aug. 11, nurse Heidi Olson, of Big Lake, became angered.

Not by the comedian and actor of critical acclaim, but by the news media and many on social media. She worried about the impact those reports, posts and tweets would have on the community of people with Parkinson’s disease. She runs a trio of support groups in Coon Rapids, Monticello and Elk River, where the nurse of 20 years sees people living fulfilling lives despite their condition. Members of her Elk River group who met on Aug. 18 were not as rattled.

“I think (the diagnosis) was just the final straw for him,” Judy McFarland said, noting his show “The Crazy Ones” had been canceled and this diagnosis came on the top of depression and his previous battles with addiction.

“I feel sorry for his daughter. I’m just glad Michael J. Fox is out there,” she added.

Fox, 50, another star actor, was also diagnosed with Parkinson’s disease but has continued a rather robust life and become an lightning rod advocate for others with Parkinson’s.

Some in the group suggest age, demons and depression were probably bigger factors than the diagnosis for Williams. They have accepted their diagnosis and have found with medication and leaning on others for support much of life goes on uninterrupted. That has been Olson said she hopes will continue with efforts to educate.

It was noted during the meeting that a high percentage of individuals with Parkinson’s have depression, but it can still be managed.

Those with Parkinson’s said their doctors ask them about depression, and most said they don’t have it and have told their doctors as much. One asked how the patient would know. Another said the doctor asked him, “Would you tell me if you were depressed?”

Olson suggested it’s an important question to explore. The group questioned how the Parkinson’s Foundation might respond to Williams’ death, with some suggesting that more education was needed about it in and outside of the Parkinson’s disease community.

Parkinson’s disease is a clinical diagnosis without a set of specific tests to prove one has it, members noted. Members of the support group and their spouses also said they have dealt with it by learning about it.

McFarland, a single woman, said she worried how she would deal with it and then she concluded  many other people have diseases and are in worse condition.

The disease’s first noticeable symptom is often tremors. A person who no longer walks with both arms swinging at their sides might need to be concerned.

Once diagnosed, it’s unpredictable, and patients say with medicine much of the disease is held at bay. But they also report there are “on times”  when the medicine works and “off times” when it doesn’t. Patients will have good days and bad days. Family members can get the wrong impression if they see them on a good day how bad it can be and vice versa.

Neurologists learn to trust their patients. The medicine can also push patients to the opposite end of the spectrum to schizophrenia when too much dopamine – a naturally occurring chemical in the brain – is created.

A newer member was advised at the meeting to talk to her neurologist about seeing little people while she’s in her kitchen peeling potatoes.

Olson printed off and shared the latest news related to the disease. It was something she got from Medical News Today about anti-inflammatory drugs.

She and members of the group welcomed a Star News reporter to listen in as they went about their meeting, which always starts with recap of how their month went.

It’s casual. It sounds like a typical volley among active seniors who like get outdoors, visiting their friends and family and going on field trips to museums, shows and events.

The group has been meeting on the third Monday of the month at the Elk River Activity Center for about two years. It’s for people with the disease as well their spouses, care partners, siblings, children and friends.

Every meeting concludes with this question: What are you going to do good for yourself?

 

Life goes on

This particular meeting, it was mostly couples and few singles in attendance.

Bill Carrington got things started on a sour note, but he kept his report upbeat and funny.

He made a couple trips to the hospital after some minor falls, he said. He also said he goes in for an operation later this month. As Carrington grasped for the words to tell what the surgery is for, a puzzled look took over his face until he reported he couldn’t remember.

“I hope the doctors remember,” Carrington quipped, drawing laughter from the group.

Then he remembered it was for kidney stones, but he added if that’s all that’s needed at this point, that’s not bad for all the abuse he’s put his body through in his lifetime.

He’s not sure how long he’s had Parkinson’s, but it has been years, he said. He didn’t get a formal diagnosis until recently.

Carrington is known by his friends with Parkinson’s and their spouses as the one who spices up the conversation. He’s even been known to bring up the topic of sex among this group of seniors.

Jim Gray reported it was a busy month for him and his wife, Mary, who provided the details. Jim, who has Parkinson’s, did say he cut the grass.

Highlights for the Grays included having the kids over and Mary met a girlfriend in Stillwater.

“I don’t know where the month went,” she said.

Penny Lieberg said the month went by fast for her and her husband, Levon, and included trips to the Mill City Museum, Val’s Drive-In and a show in St. Cloud. They also had a family get-together in the mix.

Kaye and Larry Vaske went to a family reunion, and it went well. It was a long drive, though.

“That was the hard part,” Kaye said of her husband. “We had to stop more (to get out and stretch).”

The couple is now preparing for Kaye’s sisters who are coming to town. Kaye is fussing over house more than Larry thinks she should, but he don’t say too much. He wouldn’t want to be anywhere else.

“The food’s too good,” he said.

The Vaskes also updated the group on a new grandson that came into the world prematurely..

“He’s now 12 pounds,” Larry Vaske said.

Bill and Joan Campbell had a big month, which was capped off by Joan’s 67-year Elk River High School class reunion. She and her husband were among those who made it to a luncheon at Rockwoods. The were 19 Elks from the Class of 1947 who made it. Joan was the chairwoman of the event, a title she says she will forever have.

Bill Campbell, one of the support group members with Alzheimer’s, graduated from St. Cloud Tech. He recounted his volunteer effort at a 3M Golf Tournament to raise money for Allina Hospitals and Clinics this past month. He chairs the committee in charge of magazines and programs, making sure they get distributed.

The couple is already making plans to go to Minnesota Gopher football game this fall. Asked what their connection was to the University of Minnesota football program, they said they’re sports fans.

They both attended St. Cloud State University, but they actually first met at the drug store in downtown Elk River.

Joan was the cute girl behind the counter serving ice cream sodas, Bill recalled. He was part of a work crew in Elk River putting in was then referred to as the “New Highway 10.”

When they saw each other again at St. Cloud State University, they recognized one another. Eventually they dated and married while Bill was in the service.

Levon Lieberg was the only one at the table whose tremors from Parkinson’s were visible at the meeting. The rest said they were on medicine that keeps the tremors at bay much of the time. Lieberg’s incessant movement didn’t stop him from chiming in and making it clear he was plugged in to conversation.

Aoulene and Bruce Hauschulz visited a friend from Annandale. Up next for them: Their oldest daughter turns 50.

McFarland reported she drove herself to the hospital after she began having some pains. Her support group members groaned and suggested she call 911 next time. She also had eye surgery on one eye and will have the other eye operated on soon. For fun  she went to Ramsey for a card-making session. She also volunteered some of her time at Guardian Angels.

Jerry, who didn’t give his last name, said he has had a pretty boring summer.

“It has been a nice summer, but nothing too exciting,” he said.

Group members said that can be a good thing.

Next month he hopes to go golfing with his son at Breezy Point.

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