An interview with Tim Brown– Giving Voice To Those Who Have None. Atypical Parkinsonism Awareness on October 29, 2023 by George Ackerman, Ph.D, J.D.
Biography
Originally born and raised in the Greater Toronto Area of Ontario to working-class parents. I’m the middle child of eight children–four boys and four girls. I now call the small town of Ayr in southwestern Ontario home and have now for thirty years. This is the second marriage for my late wife and myself. Together, we have a blended family of six adult children who blessed us with seven grandchildren.
Please tell me a little about your background.
I attended public school from kindergarten to Grade 8, junior high for Grade 9, high school Grade’s 10 through 12 and college for two years. Throughout high school, I worked part time in a hospital food services department and continued to do so while attending college for a Food and Hospitality course. I spent the first half of my working life in management positions in the restaurant industry and later on, as an owner/manager of my own quick service restaurant. Post recession in the early nineties had me choose a completely different vocation… the automotive parts manufacturing sector. I was working in the research and development portion of the business until I left work permanently because of illness in December 2013.
Can you tell me more about your organization?
The PSP Chronicles is a series of nonfiction books–a collection of journal entries detailing my personal journey with PSP–Progressive Supranuclear Palsy, an atypical Parkinsonism. My books are the platform which I use for disease awareness, advocacy, and funding for research through 100% of royalties going towards the PSP-CBD and MSA nonprofits.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Raising disease awareness every opportunity I get. Why? Over 95% of medical professionals have never heard of PSP-CBD and MSA. By raising awareness, we create understanding. Understanding leads to support. Support leads to further research so badly needed for treatment, better still… a cure.
What type of goals do individuals with Parkinson’s have when working with you?
We have one shared goal–a cure. Until that time, we continue to raise disease awareness, advocacy, and support towards treatment with the focus on slowing down disease progression and better symptoms management.
What type of training and how long are the programs?
Training is on the job of caregiving, and it continues until the loved one passes. There are many online groups and forums providing helpful information and moral support for all who need it… all at the click of the mouse.
What effect can it have on an individual with Parkinson’s?
I would like to think these efforts will have a positive impact. Knowing you have someone in your corner to advocate on your behalf should provide a measure of comfort and assurance.
What would you like to see as a future goal for your programs?
I would like to see a time where and when you can advocate on someone’s behalf without educating the health care team first.
What events do you participate in?
I have created several PSP-CBD events on and offline.
There is the PSP-CBD Triple Crown
https://www.youtube.com/watch?v=06ntLIxQZJA
Parodies for PSP: Symptoms by the Numbers
https://www.youtube.com/results?search_query=symptoms+by+the+numbers+tim+brown
Imagine, Re-imagined:
https://www.youtube.com/watch?v=-P6PelX_M-M&t=41s
Jack and Stan: https://www.youtube.com/watch?v=eLQBslbbTl8
PSP Mornin’ Comin’ Down:https://www.youtube.com/results?search_query=psp+morning+coming+down+tim+brown
Book reading with CurePSP and All Stripes: https://www.youtube.com/watch?v=ATnjzUSl2G4
Rare Disease Day
https://www.youtube.com/watch?v=zfKmdm7j5X4&t=47s
https://www.youtube.com/shorts/vqP0cqK4ezA\
PSP & CBD Ice Cream Challenge Facebook Page. First week in May—This event encourages engagement from group members and all others by eating ice cream or other frozen dessert and to share your pictures with friends, family, and others with the #ThinkIce Cream #ThinkPSP-CBD
How does this also assist the caregivers?
These events let caregivers know that they have me in their corner.
How can someone get in touch? What is your website?
They may contact me on my FB page–The PSP Chronicles. They can also reach me through messenger on my personal FB page, Tim Brown, and additionally by email pspchronicles@gmail.com.
How can others also become advocates for awareness?
Because there is little knowledge about PSP-CBD and MSA, often, family caregivers, other family and friends thrusted into the role of advocate. Wanting only the best prognosis and outcomes for their loved ones, these “others” carry the banner of awareness. They take every available opportunity to talk up and to educate others on disease awareness.
Is there a genetic component in PSP-CBD and MSA?
This is the most asked questions by others. The short answer is no. According from research to date, these diseases are familial in less than 5% of diagnosed cases.
In your opinion what is the key to effective advocacy?
Persistence through passion, especially when you, a loved one or friend affected is by the disease. SAY IT LIKE YOU MEAN IT.
How can we better fundraise to support a cure for Parkinson’s?
Create more fundraising opportunities to encourage all, and not just those with a personal connection to the disease, to participate in bringing about further disease awareness and support.
What other activities do you undertake to help improve and support your daily living i.e., exercise and alternative remedies?
I use visual aids, such as my daily checklist to stay on routine. After I complete each task, I mark it off. There’s unintended benefit to this–added muscle memory. By performing these daily tasks, my mind and body know will me know if I’ve missed part of my routine. The importance of daily exercise can never stress enough. It makes all the difference in mobility, balance, effectively lessening some disease symptoms. Exercise has proven to increase brain plasticity, helping to maintain, or and create new neuronal connections.
Why should people who don’t have Parkinson’s care about this?
PSP-CBD and MSA are prime of life diseases. They are not exclusive and make no distinction between who will or won’t be affected.
Have you had any family members or relatives affected by Parkinson’s disease?
I am the only known person in my family now, and in previous generations, with a PSP diagnosis. I had an aunt who passed away in recent years with Alzheimer’s.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Hope… it does matter.”