An interview with Blake Mackey on Advocacy for Young Onset Parkinson’s Disease & Dystonia, July 24, 2023 by George Ackerman, Ph.D, J.D.
Blake is a 45-year-old Canadian resident, husband, and father of four. He has been a small business owner for the past 14 years. He was diagnosed with Essential Tremors at 39 and Young Onset Parkinson’s Disease/Dystonia at 43. He has faced the challenges of ADHD, ASD, anxiety, and depression for most of his life. Blake is an advocate for all the medical communities. He is a registered volunteer with Parkinson Canada and is a part of their mentorship program. He also volunteers with the Gray Strong Foundation out of PA, USA. Blake is developing a social support network app for the disabled, chronic disease, mental health, and care partner communities. He is a firm believer that everyone needs a strong support system no matter who you are, where you come from or what challenges you face.
Please tell me a little about your background.
I was diagnosed with YOPD (Young-Onset Parkinson’s Disease). My wife and I own an on-site commercial service company that specializes in paint equipment. I travel all over Canada servicing and maintaining automated colourant dispensers. We service other equipment as well but that is our core equipment.
People with young-onset Parkinson’s disease (YOPD) may have a longer journey to diagnosis, sometimes seeing multiple doctors and undergoing several tests before reaching a correct conclusion. As with Parkinson’s diagnosed later in life, YOPD is diagnosed based on a person’s medical history and physical examination. When younger people and their clinicians are not expecting Parkinson’s disease (PD), the diagnosis may be missed or delayed. It’s not uncommon for arm or shoulder stiffness to be attributed to arthritis or sports injuries before Parkinson’s is eventually diagnosed.
For more information on YOPD (Young-Onset Parkinson’s Disease) see https://www.michaeljfox.org/news/young-onset-parkinsons-disease
Dystonia can be a symptom of Parkinson’s and some other diseases and is a movement disorder on its own. Painful, prolonged muscle contractions cause abnormal movements and postures, such as a foot turning inward or the head tilting sideways. The symptoms usually begin in one body region — neck, face, vocal cords, arm or leg — and, in some cases, may spread to other parts of the body. The severity varies from person to person.
For more information on Dystonia see https://www.michaeljfox.org/news/dystonia
Can you tell me more about your advocacy?
I am just looking to help in any way I can. My wife and I own an on-site commercial service company that specializes in paint equipment. I travel all over Canada servicing and maintaining automated colourant dispensers. We service other equipment as well but that is our core equipment.
The app is a social support network app. designed for the disabled, chronic disease, mental health, and care partner communities. Its main goal is to allow people to find and create their own support network. The easiest way to know what it’s all about is to watch the 7 min power point video I have posted on YouTube.
Here is the link: https://youtu.be/GzTDw6yzx1s
Even though it has not yet launched, I already have more ideas and integrations for the app that I think will be a great help and benefit to the research community as well.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My diagnosis is what really ignited my passion, but I also had a grandmother who passed with PD.
What type of goals do individuals with Parkinson’s have when working with you?
To spread awareness obviously but also reduce the stigma and ignorance about PD through education.
What effect can it have on an individual with Parkinson’s?
I hope to help people learn to deal with and navigate through their diagnosis.
What would you like to see as a future goal for your advocacy?
I hope to help people connect with others to create their own support system.
What events do you participate in?
I am open and willing to participate in any events I can. I have attended 3 conventions to date.
PMD Alliance in DC, The Grey Strong Foundation/PMS Alliance: PD and You in Bethlehem PA, and WPC2023 (World Parkinson’s Congress).
How does this also assist the caregivers?
The app I’m developing covers a wide range of people including care partners.
How can someone get in touch? What is your website?
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Getting diagnosed was one of the hardest but also greatest things that has happened to me. It has given me a sense of purpose and passion to try and help anyone I can.
Michael J. Fox Foundation (2023). Dystonia. Retrieved from https://www.michaeljfox.org/news/dystonia
Michael J. Fox Foundation (2023.) YOPD (Young-Onset Parkinson’s Disease) see https://www.michaeljfox.org/news/young-onset-parkinsons-disease