An interview with Tracy McBee on PD Advocacy, July 29, 2023 by George Ackerman, Ph.D, J.D.
I’ve been married for 33 years, and we have 3 boys. I attended Alaska Pacific University for both undergraduate and masters. I have a double major in Accounting and Organizational Management and an MBA in Information Technology. I’ve had 2 careers. Hotel management and communication technology. I enjoy being in nature, especially the mountains. My favorite outdoor activities are skiing and snowboarding – yes, I can do both. My absolute favorite place is the pool. I teach, I do my hardest workouts there. It’s the one place I’m guaranteed to balance my body and soul.
Please tell me a little about your background.
I’ve always loved championing a cause that I have a personal connection to. Both of my parents are diabetic. For many years I raised money, wrote to lawmakers, talked to people about living with the disease, and educated myself. When I was diagnosed with PD I just changed causes. I knew within 6 months of being diagnosed that I wanted to do all I could to advocate for PD. The more I learned about the disease and the landscape of the community, the more I wanted to do whatever I could to help. I’ve done everything from filling out online surveys about my symptoms to raising money to starting up a support group.
Brief background – When were you diagnosed with Parkinson’s?
I was diagnosed in 2018. I was very active prior to the diagnosis. A foot injury sidelined me for almost 6 months. During this time my body started freaking out on me. I had zero energy, my brain was very foggy at times, and my hand movements made me feel like I was in a slow-motion scene from The Matrix. During this time, we spent time with family out of state. My nephew is a former Golden Gloves Champion who is still involved in the boxing community. His gym sponsors Rock Steady Boxing where he is a certified coach. After spending a few days with him, he had the courage to tell me that I looked, acted, and sounded just like many of the folks in his class. He knew this was very different from my normal self and encouraged me to seek a neurological consultation. I followed his advice!
Can you tell me more about your advocacy?
I’ve done everything from filling out online surveys about my symptoms to raising money to starting up a support group. I have written to my lawmakers and attended conferences and webinars to educate myself about the needs of the community.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is helping others be their best self. I quickly learned that PD is like firing a shotgun. The ammunition comes from one place – the disease, but the shot placement is scattered all over. It’s things like:
- There are a plethora of research opportunities, but not enough people interested in participating to fill the program.
- There are great programs, resources, exercise classes, etc. but most of them are for retired people. There’s not enough for young onset.
- There are not enough MDS to meet the growing number of newly diagnosed PWP. It makes me sad when I hear about PWP who must travel hundreds of miles to see an MDS. Especially when they can’t afford it.
- New meds are hitting the market with many in the pipeline, but they will be cost prohibitive for many years to come.
What type of goals do individuals with Parkinson’s have when working with you?
I have found that many people don’t have a lot of goals. I feel there is a level of complexity surrounding this disease – if you’ve met one person with PD, you’ve met one person with PD – that makes most people exhausted just trying to get through the day. They simply don’t have the energy to even think about awareness or advocacy.
What effect can your advocacy have on an individual with Parkinson’s?
I love this question because I prefer the personal approach. I can be an example by my actions and not just my words. I can take time to listen and share. I can encourage journeys and be there to celebrate the victories.
What would you like to see as a future goal for your advocacy?
To have a standardized water aerobic exercise program endorsed by an organization like the National Parkinson’s Foundation or APDA similar to what the Arthritis Foundation has.
What events do you participate in?
I am currently involved in:
- The planning committee for the Parkinson’s Association of the Rockies (PAR) annual E3 Conference.
- YOPD Meetup Group of NOCO (Northern Colorado) sponsored by PAR.
- Quarterly MJFF online survey of symptoms (not sure the official name)
- Pedaling for Parkinson’s
- Punch for Parkinson’s
How does your advocacy also assist the caregivers?
I feel that any efforts made on behalf of a PWP should have a positive impact on caregivers.
How can someone get in touch? What is your website?
Tiktok – @snarkymommy65
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
You are a person with Parkinson’s, but you are so much more!
How did you get involved in advocacy?
My MDS gave me a copy of Davis Phinney’s “Every Victory Counts”. I used this as my primary source to learn about the disease. I really like how the book is laid out to include personal insights from PWP. This got me thinking about my life and what I was not willing or ready to give up. I started framing my hobbies and interests within the PD world. How can I translate these into making a difference or having an impact for others with PD.
I was officially diagnosed as YOPD and discovered that most of the support groups, exercise classes, and educational seminars were geared towards an older population. I still work full time and my youngest was still in school. The traditional PD programs did not work for me. I remember asking PAR every chance I got (bugging them really), “You’ve got this wonderful organization, why don’t you have any programs for people like me?” I educated myself about research opportunities and put my name on every list I came across. I have participated in one UC Health program and interviewed several others. I have been active my whole life – skiing, hiking, fishing, biking, and swimming.
I have taught Water Aerobics for almost 20 years. When I heard PAR was starting up Aqua classes, I reached out and asked, “How can I help?”. I helped Delisa get the Louisville class up and running last year. I’m hoping to take a class in NOCO. Teaching PD AquaFit – I saw people’s balance and gait improve significantly. I had a participant tell me I was the voice in their head as they walked, “Eyes up, look ahead, find something to focus on”. I saw people who were very shy gain confidence. I even had a participant tell me his family noticed a big change in his physical abilities. I have met several PWP in NOCO who regularly participate in Aqua classes. All of them tell me they would love to have a class tailored to specifically help with their symptoms. My husband and I have participated twice in the Denver Pedaling for Parkinson’s. The team we were on – Chasing a Cure – was the top fundraiser for several years running. I love to ski, but Covid took me off the slopes for 2 years.
When I came back, I discovered my disease had progressed and skills had digressed to the point where I wasn’t overly safe anymore. I was not ready to give up sliding down a snowy mountain just yet. My youngest son suggested I try snowboarding instead (I’d done some snowboarding about 10 years ago). We went to a local sledding hill to see if it was even possible. I did well, so I decided to invest in lessons. I reached out to the resort’s ski school director and explained my situation. I asked if he had someone on his staff who either had experience working with someone like me or who would be willing to learn how to work with someone like me? This is how I met Keith. Keith has been teaching in CO for 20 years. The resort arranged a call between us before my first lesson so he could learn more about me, my experience, where I was at with PD, and what my goals were. Prior to our first lesson, he reached out to a fellow instructor at Steamboat adaptive ski/ride program for advice.
I attend advocacy webinars and follow PD advocacy groups on social media to keep up with the government side of PD. I was recently invited by MJFF to attend a call with CO Rep. Diane DeGette to promote support for The National Act to End Parkinson’s. Unfortunately, the call was postponed, and I was not able to attend the rescheduled time. However, I was deeply honored to be asked to participate. I met Paul French from PAR’s BOD at the Punch Out PD fundraiser in Ft Collins and started to attend the Friday class at Title Boxing.
A short time later, Paul asked me to be a guest speaker at the HARP support group to promote advocacy. I met Kristi shortly after she came on board with PAR. We spoke a few times and I expressed the desperate need for YOPD activities and support. She told me about her husband, and I immediately asked, “What can I do to get the ball rolling?”. Fast forward 6 months and we have a core group of YO PWP meeting once a month in NOCO. It is wonderful to meet and talk with people rowing in the same boat as you. To have a safe space to talk about life, challenges, dreams, accompaniments, and failures. To celebrate and mourn with each other. I have helped answer questions for newly diagnosed PWP – helping them overcome fears while advocating they seek a path that will give them the best quality of life today. My latest advocacy efforts have been on TicTok. There are a growing number of YOPD using InstaGram and TikToc to educate, advocate, and support others. My posts are all centered around the following statement – I’m a Person with Parkinson’s, but I’m so much more. You can find me on TicTok @snarkymommy65 and InstaGram @mcbeetracy.
How can people start to become advocates?
- Start with your passions, hobbies, and interests. Then ask yourself how you can use this to help others?
- Educate yourself about PD. But not just the disease. Educate yourself about the overall PD landscape. This will give you a starting point and direction to use what you love to do to help others.
- Ask, ask, ask…How can I help? What can I do? Where can I – fill in the blanks?