BRANDON, Fla — During the last several month's many support groups have slowly transitioned from zoom meetings back to in-person gatherings. For one group it’s been an extra-long wait because they’re based upon keeping themselves moving in a way that’s Positively Tampa Bay.
Ed Linde isn’t just knocking down bowling pins he’s knocking down barriers. He was diagnosed with Charcot-Marie-Tooth Disease, or CMT, when he was just five years old.
“It’s not a fatal disease but it can be debilitating,” said Linde.
Over the course of Ed’s life the neurological genetic disease slowly wore down his ability to use his hands, legs and feet, but it didn’t wear down his spirit.
“Adaptation is a big word in my vocabulary, whether it’s bowling, whether it’s dancing, whether it’s riding a motorcycle, if I can find a way to do it, I’m going to keep doing it,” said Linde.
It’s that motivation that defines the men and women who call themselves the Tribe of the Funky Feet, a support group for people living with CMT and their families.
“You know, ‘yes’ I have CMT but I am strong with my CMT so I think honestly it’s a strong community that I’m so blessed to be a part of,” said Sarah Gentry.
Along with numerous activities, the group also has an array of discussions that are positively Tampa Bay, building up moral and learning from one another.
“The first meeting my wife went to she came home in tears because she didn’t realize that some of the issues that I had are part of my disease,” said Linde.
“When we left that meeting I told him I felt about this small and he goes, ‘why is that,’ because everybody in the room was just like you and I had no idea,” said wife Vicki Linde.
CMT affects one in 2500. The Tribe of the Funky Feet said it’s important Tampa Bay knows what the disease is and what’s being done to strike back.
“A lot of people haven’t heard of it, they immediately think CMT, Country Music Television, so really it’s removing that and telling the story of those who have CMT,” said Gentry.
For more information go to cmtausa.org.
