Wayne MacLaughlin from Rise Above Parkinsons, Inc.

Please tell me a little about your background.

I grew up in Cape Cod, MA, so I am a Boston sports fan.  I met my wife Dawn in high school, and we have been married for 37 years. I retired in 2018 after 30 years in IT management having worked in Financial Services, Healthcare Marketing, and Insurance fields.  I was diagnosed with PD in 2011 where I was given a prescription and a next appointment in six months and sent on my way.   For years I treated my condition as an annoyance not knowing any better.   This progressive disease caught up with me when in the spring of 2018 I awoke one morning and could not get out of bed.  Modifications to my meds got me on my feet and into retirement.  In 2020 I underwent Deep Brain Stimulation (DBS) surgery which has been highly successful.

Can you tell me more about your organization?

Rise Above Parkinson’s mission is to help those living with Parkinson’s disease access the services and support they need to rise above their diagnosis. The average annual indirect and non-medical costs for a person diagnosed with Parkinson’s disease is over $19K – over $25K when combined with caregiver burden.  Our mission is to help our applicants reduce this financial burden by providing grants.   They may be making difficult decisions about which necessary services they can afford.   We have helped people pay for doctor’s and PT visits, exercise classes like Rock Steady Boxing, safety equipment like grab bars and walkers, medications, and a whole lot more.

Unfortunately, the need far outstrips available resources, so we currently only operate in Florida.

Just as important is for me to make sure they have the access they need to information, neurologists, and the PD community.  I do a surprising amount of education.

What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?

I know exactly how our applicants feel and what they are dealing with because I have been going through it myself.  We have experienced the financial impact of PD firsthand.  Being part of the community, we’ve heard others share that they wish they could go to PT, or get a PD walker, for example, but can’t afford it. We started Rise Above Parkinson’s to do something about it.

What type of goals do individuals with Parkinson’s have when working with you?

Some of our applicants have a specific ask in mind when they apply, but many do not.   We help them figure out what their greatest need is and try to fulfill it.

What type of training and how long are the programs?

All my training has been “on the job” as I live with Parkinson’s.  While the financial assistance we provide can be delivered quickly, our relationship with our applicants is ongoing.  In addition to being able to reapply each year, I support them as best I can by listening and helping them discover things that will help, and they know I have their back in whatever way they need.

What effect can it have on an individual with Parkinson’s?

Three areas we help with: connection, safety, and independence. A lot of our applicants feel isolated; we try to help them connect with their local Parkinson’s community. They may feel unsafe or unsure of themselves when trying to perform everyday tasks of living. We help them access the tools that will help keep them safe and improve their independence.

The feedback we get is what makes it all worthwhile. Stories of being able to go out and do things independently because they feel safe with their new walker, of not feeling like such a burden on their care partners. The emotional impact is hard to assess – when someone feels supported and cared for, and feels more independent, it can have a huge effect on their mental state.

What would you like to see as a future goal for your programs?

We’d love to grow the number of people we are able to help each year, including expanding beyond Florida. We do get inquiries from PD families outside Florida quite often. But to be able to help these people would require a lot more funding.

What events do you participate in?

You’ll find us at local Parkinson’s events in the Tampa Bay area, including the Parkinson’s Foundation Moving Day, their upcoming January Florida Chapter Symposium “Living with Parkinson’s”, and we’re really excited about our first “Pickled for Parkinsons ™” Pickleball tournament fundraiser event, to be held in the Tampa Bay area in early 2024.

How does this also assist the caregivers?

The assistance we provide helps the whole family. Often it is the caregiver who applies on behalf of their loved one, and they experience great relief knowing their person can access something that will be of benefit. As one example, we have provided assistance for in-home nursing care, which allows the caregiver to free up some of his/her time and emotional energy.

How can someone get in touch?  What is your website?

https://riseaboveparkinsons.org/

How can others also become advocates for awareness?

Be active, meet people.  Support those who have PD and help those who don’t understand it better.  I am a member and an advisor to the Philip Shayman Parkinson’s Program which is run by the partnership between the Tampa JCCs and Federation, University of South Florida Health, and Tampa General Hospital.   I also volunteer at Nova Southeastern University and let physical therapy PhD students practice their craft on me.

If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?

The variety of Parkinson’s symptomologies. Generally, when people think of Parkinson’s, they think of tremors. They aren’t aware of how many different symptoms are associated with this disease, or the different forms Parkinson’s can take. Raising awareness around the variety of symptoms would help the public better understand what Parkinson’s families go through, which might in turn drive more funding for Parkinson’s programs.

If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?

How many people with Parkinson’s does it take to change a light bulb?

All of them as we are all in this together!