This event happens every year although in 2020 it was a pseudo-partial-virtual event. This video was made in 2019 by our local TV station WLWT – Channel 5 in Cincinnati and the video only ran at noon. Cheryl got to be a TV star for a bit. Richard Childs – the reporter who put together this piece with his videographer and the rest of the team at WLWT did a great job reporting on a small fund raiser.
She has thrown what is left of her cognition into raising money for the Gardner Neuroscience Institute at U. C. Health doing research into causes and treatment of Parkinson’s Disease.
Sunflowerrev.org is the official site for the annual fund raising event. In 2020 Cheryl called her team “SMILE” in an effort to brighten everyone’s spirits. (Feel free to go to the website and donate – reference team SMILE)
The history of how Cheryl became involved with the money raising aspect of aiding research adds to her journey with Parkinson’s Disease. Early on in her diagnosis period, our family doctor sent her to another neurologist who did a bunch of tests and ruled out a lot of other maladies. Ultimately he gave her some Sinemet samples and said – take these three times a day and see if your symptoms go away. Come see me in a week or so.
She took the pills and like a miracle all of her movement issues disappeared. Returning to the neurologist in a week, he simply said – you have Parkinson’s disease. At least this is how she always tells the story. Reporting back to our family doctor, he spent more time describing PD and set her up with prescriptions to treat the initial phase of the disease. The symptoms are initially mild and merely annoying. The symptoms though are degenerative and anyone who has it or is a care giver to a person who has is will tell you, it gets much worst over time. Many do not progress beyond a mild movement disorder. Many develop dementia due to build up of Lewey bodies in the brain. Some hallucinate. Some are merely confused and have some short term memory loss. Some exhibit delusional behavior and are convinced that their spouse is messing around on them with other men or women. The range of symptoms is broad.
A friend of Cheryl’s who has a sister with PD invited her to the symposium associated with the Sunflower Rev It Up for Parkinson’s fund raising event. This too was a virtual event in 2020 as so many things were but she went with her friend a decade or so previous to that year. A young doctor described loss of smell to be an early sign of Parkinson’s. It was Cheryl’s first noticeable symptom. The one that caused her to ask – is it normal for a person to loose their sense of smell as they get older? Our family doctor replied – certainly not. (Let the testing begin.)
Cheryl got the doctor’s contact information and wrote a short email describing her symptoms and asked if it would be possible to regain her sense of smell. This doctor who is now Cheryl’s neurologist but at the time was not, wrote back and told her that it was unfortunately unlikely that she would ever recover her sense of smell. He is a busy guy but he took the time to reply to a person not his patient. Her immediate action was to discover if the doctor was taking on more patients and she became one of his about six months later.
This describes pretty well the initial part of our journey through life with Parkinson’s disease by our side. These days Cheryl has many of those other symptoms that I describe above. I have learned a lot of techniques for helping her.
We have had long conversations about where we are. We are constantly monitoring symptoms and adjusting medications. Consistency seems to be the most important aspect to focus on with medication.
I found the video at the top again today. It reminded me how far we have come. Cheryl is most at ease and happy when she feels like she is making a difference to others with her disease. She has participated in this fundraiser and will continue to do so. She started a support group at our church for folks with chronic conditions most of these are Parkinson’s patients. She is participating in a research study at the U. C. Health Gardener Neurological Center.
Images from this year’s virtual event. Whoopadiddie!
This was supposed to be our big celebration year. Our marriage is fifty years old this year. The golden one snuck up on me. We were married in 1970. “In lieu of gifts, please donate to sunflowerrev.org” — was part of our invitations to our small party. The pandemonium struck so we had to socially distance. The church hall we had intended to use was down for the count. But the virtual event raised twice as much money for the research as the previous year. Whoopadiddie everyone!
(Whoopadiddie was what Grandma always said to get everyone to smile or laugh in group camera shots. But you knew that, didn’t you?)