Introduction
Mike McConnell was not only the 1st person to agree to host an RV4TheCause professional seminar. He was the first to agree to set up a meeting for us to discuss planned giving strategies with planned giving professionals. But Mike was something much more. He was the first person we called about the RV4TheCause idea. His support and encouragement is why this project got out of the the starting blocks.
Meeting Mike
Accelerating the Cure, the Michael J. Fox Foundation for Parkinson’s Research (MJFF) bi-annual newsletter, featured stories of Parkinson’s patients in their own words – stories of grace, optimism and courage in the face of the daily challenges posed by Parkinson’s. Mike McConnell was one of those who told his story. He put a rather interesting positive spin on his PD diagnosis: “We’re all going to come down with health problems eventually. At least now I know what I’ve got.”
When writing the book Funding the Cure to promote philanthropy for the MJFF I quoted Mike’s comments in the introduction to the book. We then met Mike at the next annual dinner of the MJFF. Mike was one of those Energizer Bunny types you don’t easily forget.
Reaching Out to Mike
So when the harebrained scheme of driving around in an Airstream, with a dog named Elvis, giving estate planning presentations popped up one morning, Mike was the first person I called. Why Mike? Well, because he seemed like someone who not only enjoyed doing good, but was also willing to roll up his sleeves and pitch in. Calling Mike meant the likelihood that this project would not only happen, but succeed. Mike was the first person to volunteer to host a seminar. In spite of whatever adversity Mike faces personally, his enthusiasm and spirit encouraged us to continue this project.
Mike’s Experience
“Initially my symptoms were so minimal that the physician did not immediately identify what I had. Eventually I was diagnosed with Parkinson’s. It was 2004 and I was only 53.” Mike didn’t elaborate, but to me that is the emotional equivalent of a ton of bricks falling on your head.
“Although I don’t have YOPD [Young Onset Parkinson's disease], I was still on the young side. I have read that most people with PD are diagnosed in their 60s or 70s and eventually die of something else like heart disease associated with advanced age. But that isn’t always the case.”
Often the caregiver-spouse/partner is overlooked. Their role is not easy either. “Cindy, my wife, has dealt with this all pretty well. She’s kept a good sense of humor. She makes me do things for myself. She doesn’t automatically help me. But I’ve been handling all our finances and Cindy hasn’t been involved. But sooner or later we have to address this and consider options.”
In contrast to most people living with chronic illness, Mike has overall had a rather positive experience with how others have reacted and helped. “I’ve found that many people have been very accommodating and considerate. Going through security at airports even TSA professionals have helped me take off and put on my sport coat. Sometimes in a store someone will offer me a chair.” While Mike’s experience has been positive, it is more of a goal than the common experience. But it proves that sometimes it’s just the small things that can make a world of difference to someone living with chronic illness. A chair, help with a coat, …. The simple and easy things can mean so much.
Close Encounters of the Chronic Kind
What about the proposition that you don’t need six degrees of separation to connect anyone to chronic illness? “On a recent international travel trip to China with a tour group, we spoke with many people. One had inflammatory bowel disease; another has chronic obstructive pulmonary disease. A woman we became quite friendly with has had diabetes for 41 years, but no one would have suspected anything until she volunteered the information. Chronic illness is much more prevalent than most people think. Even some of the thin Madison Avenue models live with chronic illness.”
Participate in Clinical Trials and Help So Many
One of Mike’s missions is to encourage more people living with chronic illness to participate in clinical trials. More active participation will help accelerate research results and benefit everyone living with chronic illness. “Physicians face restrictions on recruiting participants for clinical trials so other efforts are needed. Most clinical trials are quite passive. Many reasons people are reluctant because of the time demands. If you’re working and there’s a 3 hour doctor appointment, it is hard. Others that aren’t working may have issues with mobility and transportation. The time and logistics are an issue for many. There are also fears. People fear that they may receive a drug they don’t want. Others are wary of receiving placebos if they participate in a placebo controlled trial. Some people don’t want experimental medications, others want to try everything. Most trials provide compensation for travel costs and provide a modest stipend for participating. Educating others as to the benefits to participation may prove helpful. I’ve participated in 14 clinical trials since I’ve been diagnosed. Half of these have been interventional, and about half only observational. Observational trials include having a PET scan, MRIs, intelligence tests…researchers just observing.” Hopefully Mike and others will be successful in encouraging more people living with chronic illness to participate in studies. If there is an impediment to your participating, financial, transportation, fear, or anything, instead of saying “no”, call one of the organizations helping those with your particular disease and ask if they can help mitigate your concerns. You can make a difference.
“One trial was an exercise program. They’ve discovered that exercise is a great benefit to those with PD. Many of the symptoms of Parkinson’s temporarily disappear after significant exercise. There is a brief respite from the tremors. It really works but in my case, it doesn’t last that long. Massage has also proven very therapeutic.”
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