An interview with Jeffrey Sloan: Parkinson’s Pie
Biography
Born and raised in Michigan. Oldest of five siblings. I earned my Bachelor of Arts degree from Michigan State University. I spent most of my career in data management and IT Leadership roles. Diagnosed with PD in September 2019. Retired early in December 2020 not because of Parkinsons but simply because I wanted change. My father was diagnosed with PD in early 2020 so I assisted with his care along with my siblings.
Can you tell me more about your Advocacy?
Shortly after my diagnosis I started to research as much as I could about PD. I became involved in drug trials and soon realized that although there is a lot of information available on PD it requires an immense effort on the patient to find it and advocate for ones self. That’s when I decided to share my and my father’s PD journey to help others navigate their journey. I became involved in Rock Steady Boxing and the Michigan Parkinson Foundation where I am now a PD mentor to assist newcomers. Of course, MJ Fox Foundation has been a great source of information so I decided to give back to them through support of their US government funding work which is accomplished mostly by providing my PD story to my representative’s office staff so they can better understand what it’s like to live with PD. While I was doing all this i was also capturing details of my journey to be put in a book format which others can reference and potentially ease the burden on the newly diagnosed. The book is complete but not yet published and is titled: Parkinson’s Pie. I’m also starting to assist the Kirk Gibson Foundation and plan to be volunteering some of my time there to help where I can.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Helping others by sharing the knowledge I have picked up along my PD journey. I became involved when I was diagnosed and immediately wanted to help. I learned there is a thriving community of PWPs and their care givers who are starving for information.
What type of goals does individuals with Parkinson’s have when working with you?
Someone to speak to who understands them and what they are going through.
What effect can your Advocacy have on an individual with Parkinson’s?
Gaining knowledge o PD and how to care for it and that it’s not an immediate death sentence. We all control how we can respond to this disease.
What would you like to see as a future goal for your Advocacy?
Publishing my book and completing book 2.
What events do you participate in?
I believe strongly that exercise is medicine so bike 5 days per week, light strength training 5 days, box 3 days, walk as much as possible. I attend support group meetings and help to coordinate some activities, for example in June I arranged for the Kirk Gibson Foundation to speak at my monthly support group.
How does this also assist the caregivers?
Mostly my book will provide caregivers with real life perspective of a symptom from two people’s point of view and help them better navigate caring for their loved one.
How can someone get in touch? What is your website?
jeffrey.sloan@me.com
How can others also become advocates for awareness?
Dr. Ray Dorsey (Ending Parkinson’s author) said that my book “Calls for the amplifying of voices of those affected by PD” which is exactly what’s needed by everyone impacted by this disease. Exactly what I’m doing and exactly what you’re doing as a caregiver and advocate for your mother.
In your opinion what is the key to effective advocacy?
Consistency and amplification
How can we better fundraise to support a cure for Parkinson’s?
This is an excellent question. Fundraising effort can always be stronger, but I think another way to look at it is from the cost perspective. How can we improve and speed up the drug approval process? Perhaps utilizing AI can accelerate the process and drive costs down so our fundraising dollars can go further?
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Big fan of all activities, especially Rock Steady Boxing. For example, today I rode a stationary bike for 45 minutes, and walked 2 miles before lunch. Then I attended RSB for 2 hours and meditated for 15 minutes after. Frankly I beat right now but I know how much worse I feel when I don’t exercise.
Why should people who don’t have Parkinson’s care about this?
At the rate the disease is growing, chances are increasing that someone you love may one day be impacted.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes – me and my father. Perhaps my mother too but she was never officially diagnosed
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Become active in advocacy
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
Support https://www.togetherforsharon.com/shop/