My husband, Rick, and I are high school sweethearts, we met at 13 and started dating by 17. Twelve years ago we started planning our retirement and I noticed Rick was exhibiting some motor problems.
Since I was a physical therapist (PT), I suspected Parkinson's disease (PD). When the doctors confirmed the PD diagnosis, it was not really a shock... it was more of a disbelief. As we get older, we think about some health issues we might have to endure, but Parkinson's was not even at the bottom of the list ― it wasn’t even ON our list.
We had envisioned our retirement years sitting on the beach, traveling, enjoying our grandchildren. It is not EXACTLY like that. While yes, we sit on the beach, we have a newfound purpose now. We made a promise to each other to not let Parkinson's be our life.
We learned to live with it. I put my PT cap back on and we started to work together. We went back to the basics since Rick’s body and brain were not in sync. He could not understand why he was bumping into doors and tripping. For months we worked on these issues. All throughout I would educate myself on the disease and was truly amazed and excited with the ongoing research and development.
Our physical therapy made a huge difference. He no longer bumped into corners or tripped. Our frustrations and fears eased up because of our newfound understanding. We were learning to cope. We signed up for clinical trials, expert briefing webinars, and began seeing a movement disorder specialist. The Parkinson's Foundation became our new friend.
We continued to live our lives as if PD were not there. Rick became involved with our club. He has never shied away from being visible, even when his symptoms were also visible. We began mentoring families new to PD, helping each other cope.
And on a fateful day, we met with the Parkinson's Foundation CEO. We discussed Foundation programs and I talked about my frustration as a physical therapist and a care partner. There needed to be more training for physical therapists since we experienced firsthand how the right therapy program and therapist made a difference. The CEO said that they were working to launch a physical therapy program. I was intrigued! Rick and I wanted to help get this program moving.
Our engagement with the Parkinson’s Foundation really took off. We have never met a more engaged and focused group of people working together to improve the lives of the Parkinson's community and strive towards a cure. Rick and I are so thrilled and honored to be partnering with them in many of their projects.
In 2017 we went to New Orleans to meet some of the PT faculty and students and we were delighted to see their excitement and newfound PD awareness. We discussed the importance of the physical therapist really knowing how to treat and help their patients.
The Parkinson’s Foundation kept their promise and launched the Physical Therapy Faculty Program. Designed to improve physical therapy care in Parkinson’s, this program trains faculty leaders who go on to educate physical therapy students. Rick and I are so proud to be part of this and partnering with the Foundation.
There is no time to waste, receiving the best care is critical. We are now working with the Foundation to launch an online physical therapy certification program by end of year. This will allow existing PT’s to receive a Parkinson’s certification. When people with PD need to see a physical therapist, they can soon find one that has completed Parkinson’s training or a certification.
Onward with our journey, the Parkinson Foundation connected us with a couple in our area. We agreed that we needed more resources in Palm Beach County, FL. So, we hosted a symposium with the help of the Parkinson's Foundation. Afterwards people asked me how they can get involved. Soon after, the Foundation brought new educational programs to our area ― we were thrilled.
Hosting an event inspired me to start a local support group, “Knowledge Is Power.” We now host ping-pong for Parkinson's and boxing. We are also heavily involved with Moving Day, where I’m Team Captain and am excited to present.
In 2019, Rick and I, along with the Parkinson’s Foundation went to Capitol Hill to lobby Congress during a discussion on PD medications ― cost, availability and lack of insurance coverage. The Parkinson Foundation is our advocate. We need to keep our voices loud and clear.
This is the journey we are on. We have learned to put Parkinson's into a closet and close the door… even though it constantly shows its face. We are fulfilling a promise to each other, Parkinson's does NOT dictate our life! Life will get harder, but we will work harder. We will never give up on HOPE.
New research and discoveries are constantly happening, we are on a fast pace moving forward to find a cure. We all hold the answers. We must do our part to support the critical work of Parkinson’s Foundation and researchers. They need our help. Follow your passion, ideas, thoughts ― they are important to our goal! Are we making a difference in the Parkinson's community? Absolutely!
For Rick and me, getting involved gives us some control and empowerment over this disease. Our journey has evolved, but we will not allow this disease to lead us. We will beat Parkinson’s!
Shelley Friedland is a passionate Parkinson’s Foundation advocate and volunteer. She is a member of the Foundation’s Leaders in Research program, is the President of the Florida Advisory Board, an advocate for the PD GENEration initiative and is involved in the 2020 and 2021 Care Partner Summit.