Country Club of Lakewood Ranch couple turns to Neuro Challenge and neighbors for help during parkinsonism struggles.
When Country Club's Miriam Boots learned her husband Craig Boots had a parkinsonism disorder, she knew she had to educate herself about how to best assist him.
One thing she learned quickly was that seemingly small lessons turned big in terms of importance.
After the diagnosis, a neighbor suggested she call the Neuro Challenge Foundation for Parkinson's, which led to her being assigned a care advisor, Ellen Schaller.
As Schaller explained all the important first steps, such as identifying quality neurologists in the area, she also added some tips, such as urging Miriam Boots, who is 71, to accept help from her neighbors and friends. She said if she didn't accept help, her neighbors would stop asking if she needed it.
"That's important because this can become quickly overwhelming," Miriam Boot said.
The advice also paid dividends — in actual cash — immediately.
Schaller had recommended a discount medical supply company for Miriam Boots to buy a wheelchair. When a neighbor offered to pick up the wheelchair, it saved Miriam Boots a $95 delivery charge.
Craig Boots, a mechanical engineer, was diagnosed with parkinsonism in April 2020 just when the COVID-19 pandemic was growing in its impact.
"It was a double whammy for us," Miriam Boots said.
Always in good shape, Craig Boots was having trouble keeping up with his wife when they went on walks.
"He was complaining of malaise," Miriam Boots said. "We went to the cardiologist and regular physicians."
They eventually came up with the parkinsonism diagnosis. Craig Boots, a former Lt. Commander in the Navy who flew S-2 submarine trackers in the early 1970s, began to experience hand tremors.
Miriam Boots said she was fortunate to find Neuro Challenge, and Schaller.
"She is the listening ear," Miriam Boots said of Schaller. "At first, everything is such a shock. Neuro Challenge helps you find your way, and it's free."
One of the important steps for Miriam Boots, with the help of Schaller, was finding a professional caregiver so she could take a break a couple days a week.
"Our caregiver (Kenyan Smith of Smith Essential Homecare) has been a Godsend," Miriam Boots said. "She comes twice a week and she has become a personal friend."
Because Miriam Boots feels her husband is safe when he is with Smith, she can relax when she visits with friends.
It also helps that Craig Boots, 76, has been handling his misfortune with what his wife calls "grace."
"He is such a gentle, kind soul," she said. "He is facing all those road blocks."
How do they get through it? Mariam Boots said the answer is simple.
"We've been married 31 years," she said. "We love each other."
Besides contacting Neuro Challenge immediately after a spouse or family member is diagnosed with Parkinson's or parkinsonism, Miriam Boots had other tips.
1. "Trust yourself. Doctors are being proactive in testing medicines. But you are your best advocate. When he was on medication, he wasn't functioning at all. I could see the medicines were not working."
2. "Keep hope. One doctor told us that no medicine would help. I didn't like the answer. I am not willing to give up on other things."
3. "Make sure your home is safe. Get an assist bar for above the bed, and in the bathroom. A neighbor helped me put up the support bars."
4. "Step back and let him do more. I let Craig do things himself. I am always after him to keep moving."
5. "Listen. Craig is a mechanical engineer so I know if I listen to him, he can tell me ways to do it better. It's easy to start thinking you know best."
6. "Continue to be social. We do driveway visits and people are so gracious. I live in a wonderful neighborhood. We went to a Cinco de Mayo party and he was going to stay in the car. But three guys came over, and out he came."
7. "I am a former librarian so I need to give libraries a plug. He is a slow reader now and they have an app called OverDrive where you can get audio books."
8. "You want to have lunch with the ladies, but also keep friends who can do things spur of the moment."