With Michael J. Fox as his inspiration, a Vancouver man with Parkinson’s disease is using his own media platform in a powerful way.
Radio program director Larry Gifford says the neuro-degenerative disorder is slowly stealing his ability to speak, so he’s using it while he still can.
“Yes, I’m putting myself out there but I’m hopefully making a difference and if I can leave a legacy… it’s the importance of sharing your story, while you can,” he said.
Gifford is the creator of a new podcast called “When Life Gives You Parkinson’s”. In it, he chronicles how he’s constantly coping with new challenges and how his symptoms are progressing.
“My right side is slower than my left, when I try to release it with my right hand, it doesn’t go so well, so I had to teach myself to throw with my left hand,” Gifford said in an interview with Global News.
“My brain doesn’t tell this leg to move so I have to drag it behind me,” he added.
WATCH: As her husband uses his own media platform to tell his Parkinson’s story, Rebecca Gifford is sharing how his diagnosis affects her family and how they’re coping
Diagnosed last summer at age 45, Gifford has young onset Parkinson’s disease. He says life as he knew it is slowly slipping away.
“I’m just so sore, it just hurts to type. This disease is just so random with how it decides to take hold of you on a given day,” he said.
There’s little known about the disorder and the range of symptoms a patient can experience is broad.
For Gifford’s nine-year-old son, Henry, the simple truth is days where his dad has the strength to play with him are few and far between.
“I want to go on his back but he can’t do that anymore,” Henry said.
LISTEN: Larry Gifford on the Ryan Jespersen show Nov. 14.
The hardest part, Gifford and his wife Rebecca agree, is the uncertainty of the disease and how quickly it will progress.
“I immediately assumed OK, soon I’m going to be caring for my husband and he’s 45 years old… but now I know he could be 20 or 30 years of thriving and being where he is now which is highly functional, but everybody progresses differently,” Rebecca said.
“There’s really no way of being able to tell, does he have two years of living and thriving the way that he is now with a few challenges or does he have 25 more years?”
For now, the Giffords are trying to cherish every moment and embrace their new normal, exposing their lives to help bring hope to others.
“It’s just our new normal,” Rebecca said.
“The fact that we have to be transparent and open, that makes it even more powerful,” she said, adding, “that’s good storytelling.”
Being so open about how Gifford’s diagnosis has affected their family is also helping them cope, she said.
“Along the way, it’s helping us figure it out and mostly him figure out what does this mean? How am I going to move through this? How am I going to take this into the years that I have left and what can I offer from it?’”
Gifford’s Parkinson’s story goes back about eight years. He says that’s when his symptoms started, first with a lazy foot.
He thought it was because he was overweight so he simply bought a lighter pair of shoes.
Over time, his strong radio voice started to soften but he didn’t think much of it at the time.
Then a tremor in his right hand triggered a visit to the doctor, which eventually led to his diagnosis.
He still works full-time, steering the ship at CKNW radio, so it was a surprise to his colleagues when he went public about what had been a very private battle.
“You would have thought that maybe he was at a meeting somewhere else and that’s why he wasn’t in the office and later you would find out he was at a doctor’s appointment,” CKNW contributor Niki Reitmayer said.
After coming to grips with his illness, he started doing what he knows best, telling stories — only this time, the story is about himself.
“My hope is that by telling my story, other people will tell their stories because that’s how we are going to make a difference,” Gifford said.
His goal is to raise global awareness and funds for research and to share information that will help other patients cope with their diagnosis.
He says mindfulness and positive thinking are keys to coping with the condition.
“There’s no hurry to get any place because I’m arriving with each step,” Gifford said.
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