An interview with Harry Starkey: Joining the fight to improve outcomes and find a cure for PWPs with enthusiasm and passion– Parkinson’s Association of Northern California on November 3, 2024
Biography
I’m a mechanical engineer and athlete. Professionally, I’ve worked in the water space here in California managing water districts, mostly focused on agricultural water supply and distribution. Though I love my career, I’ve always viewed myself more as an athlete than a water professional. Sports have been a big part of my life. I played college basketball and later became a tournament tennis player and an avid paddle surfer.
Can you tell me more about your organization?
I’m on the Board of Directors for the Parkinson’s Association of Northern California (PANC).
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
It was out of loneliness and desperation that drove me to connect with a support group and then apply to be on the PANC Board. In both instances, I found a community that gave me hope and more importantly, an opportunity to help others with Parkinson’s. My passion is encouraging PWPs to exercise big, bold and loud!
What type of goals do individuals with Parkinson’s have when working with you?
I am currently the project manager for an initiative to improve Parkinson’s related services in the rural farm communities of the San Joaquin Valley. We recently received a private donation to seed this initial step in the project. The project is initially focused an area of California particularly affected by Parkinson’s because of farmworker exposure to pesticides. The project benefits from the many years of study by the UCLA neurology department on this area of California known as “Parkinson’s Alley”. This region has an increased per capita incidence of people with Parkinson’s. For most of my profession, I worked in the agricultural space and have a fondness and great respect for farmworkers. It pains me that there could be a PWP wasting away without the support services that I am lucky to benefit from. Our goal is to improve education of not only PWP’s in rural communities, but also clinicians that attend to them and lastly to provide ways of improving clinical services in the rural communities of the San Joaquin Valley.
What type of training and how long are the programs?
Parkinson’s Association of Northern California provides training to people in the fitness, physical therapy, and wellness industry on how to help people with Parkinson’s. We also provide respite grants for caregivers who simply need a break to recharge. We also support numerous support groups in Northern California that are so important for PWPs. The rural farmworker initiative is in its infancy. We are having a summit in a couple of weeks down in Fresno to kick off the initiative. Our initial goal is to try to increase collaboration between research institutions like UCLA and other organizations that are working to improve outcomes and services in rural agricultural communities for PWPs.
What effect can it have on an individual with Parkinson’s?
Support groups, simply put, help people know they’re not alone. It’s a place to get encouragement, love and information. We provide training for non-medical exercise and wellness professionals to design programs that improve symptoms and levelize the progression of the disease. As we all know, exercise is fundamental to dealing with Parkinson’s. The rural initiative is in its infancy, but it could really mushroom into something marvelous and quite significant. There’s a groundswell of support in the country for helping people that have suffered from exposure to Pesticides and particularly Paraquat. We’re excited about the prospect of advancing this program and building upon the important work done by the neurology department at UCLA.
What would you like to see as a future goal for your programs?
Specifically, I would like to see better education with the rural farmworker community. It’s important to figure out ways to build their trust not only in the medical system, but in technology. Farmworkers are fundamentally distrustful of both for fear of deportation. This lack of trust is a real barrier but is a challenge that can be overcome with patience and the right approach. I hope that we can build trust through the various farm worker organizations and provide improved clinical services to improve the outcomes of rural farmers with Parkinson’s.
What events do you participate in?
Parkinson’s Association of Northern California host probably the largest independent Parkinson’s conference in the country. Recently, we had 800+ attendees at our conference up here in Sacramento. It was a well-received and positive day of learning and connecting. I also participate in Movement Day and look forward to any conference that I can get to related to Parkinson’s.
How does this also assist the caregivers?
Our organization provides respite grants to caregivers. It’s a very simple process where we fund a support caregiver so that the primary caregiver can take a break and care for themselves.
How can someone get in touch? What is your website?
Parkinson’s Association of Northern California website follows: https://www.panctoday.org/
My email address is Hostarkey@gmail.com
How can others also become advocates for awareness?
There are so many resources out there that are available online. I think it’s important for newly diagnosed people with Parkinson’s to connect with a Parkinson’s buddy to help them begin to navigate their journey with hope.
In your opinion what is the key to effective advocacy?
Understanding what you’re advocating for and leveraging various media platforms with a persistent message.
How can we better fundraise to support a cure for Parkinson’s?
I think having a celebrity face for Parkinson’s is very important. Michael J. Fox has been an absolute beacon for the cause. I’m hoping that Kirk Gibson can supplement MJF’s important work. I also think Brian Grant is doing a great job. I think getting more of the celebrities that are affected by Parkinson’s out in front, increases awareness and improves people’s desire to give.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I’m grateful that I was very active for my entire life and I’ve always desired to be active. I think that has caused my symptoms to be relatively mild. My fitness routines now are very Parkinson’s specific:
- 150 minutes per week cycling and/or swimming at 85% of maximum heart rate.
- Three days a week of Rocksteady boxing.
- 2 to 3 days a week of strength and flexibility training.
- I also work with a personal trainer who has been trained by my organization PANC to work with people who have Parkinson’s. She assists in balance and mind/body exercises. In particular, while we box, she makes me recite my phone number backwards and call out states in the union….. very fun and challenging!
Why should people who don’t have Parkinson’s care about this?
Because it’s the fastest growing neurological disease in the world. There’s clear progress that could be made through better practices in handling of agricultural pesticides. Banning paraquat in California and the United States would go a long way towards minimizing exposure and the potential of contracting the disease particularly for rural farm workers.
Have you had any family members or relatives affected by Parkinson’s disease?
Fortunately, not.
If you had one song that would tell us more about you or represent your life which song would it be?
It’s a B side song by Elton John. The name of it is Curtains. It’s a sad song that, in my opinion, is loosely about endings in life. I’ve always been somewhat of a melancholic person and strangely find great comfort in this song.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Let’s keep fighting for and continue supporting one another until that is found. We are not alone. Let’s keep moving our quirky bodies and advocating for a cure.