On Saturday, March 18, over 200 participants attended the 14th Annual Cure PSP Awareness & Memorial Walk at Mackle Park. This annual event was created to raise awareness, educate the public, help loved ones heal, and honor friends and family who have a PSP diagnosis or have lost a loved one to PSP (Progressive Supranuclear Palsy).
The Marco Island event was not only attended by Marco residents, but instead connected people from around the world; letting them know they are not alone. Participants traveled from all parts of the United States, some traveled from Canada and two attendees were from Norway. A wide range of ages were also represented -- from 14 months to 92 years of age.
“The original walk 14 years ago started at Naples Bath & Tennis by Helen Lavelle, Cathy Orban and myself,” said Joan Reifler of Naples. “Helen and I bonded because both of our husbands died from PSP, and Cathy had lost her mother to it. We wanted to raise awareness and felt a walkathon would be great way to raise money for research, as well. So, that’s how it started in the early days. Today, Cindy MacDonald has taken it to a whole other level here at Mackle Park. What she has done is nothing short of incredible.”
The festivities began at 10:30 a.m. with registration. Mitch Kanefsky, co-facilitator of Southwest Florida Support Group for PSP at Manor Care at Lely Palms had a tent providing education and awareness of PSP and other tau protein diseases.
“Today, we are here to raise awareness and educate. PSP can present itself as early as age 53. Many are diagnosed with Alzheimer’s and Parkinson’s before being properly diagnosed. The official numbers of those afflicted by PSP are 5-6 in 100,000, but we know that statistic isn't correct. We have 4-5 individuals from Marco alone who have it and attend our support group at Manor Care,” said Mitch Kanefsky.
“My husband was diagnosed one-and-a-half years ago. We were fortunate with an immediate diagnosis. Our general practitioner sent my husband to a neurologist who, thankfully, was familiar with PSP. For most people, an accurate diagnosis takes 3-4 years,” explained Dallas Gory of Miami.
Cathy Orban provided entertainment throughout the event. A multitude of auction items and raffle prizes were on display. At 11:30, the memorial walk began around the pond at Mackle Park. Memorials lined the nearly one mile path. Groups of families, wheelchairs, walkers, strollers, and couples holding hands made the respectful walk honoring their loved ones.
“My wife was tested repeatedly at some of the best hospitals in the country. Her original diagnosis was Lyme disease. She suffered with PSP for 6 years,” said Al Johnson. “She attended this walk two years. This is my fifth year in the walk. Today, my entire family is here to honor her. Mary Lou passed away three years ago.”
After the walk, lunch was served in the Mackle airnasium. The day was filled with an enormous outpouring of love. Each person had a story to tell. Each life present had been affected in some way by PSP.
“My mother had PSP for 10 years although symptoms were present before the diagnosis. She was a very, very active lady who bowled and line danced. Then all of a sudden, she quit doing everything. Her balance wasn’t right and little by little her speech went away ... then her ability to swallow. She died of aspirating pneumonia. Literally starving to death. It is a horrific death for anyone to go through,” explained Cindy MacDonald, co-facilitator of the event. “It’s a cruel disease, and there's no cure; and there’s no treatment for it.”
The day’s activities concluded with Cindy MacDonald honoring Joan Reifler for her service and dedication, followed by the ever popular prizes. By the end of the day, there were nothing but smiles on the faces of all who had attended.
For more information about PSP go to curepsp.org or facebook.com/curepsp.foundation.