Larry Gifford: Behind the Parkinson patient viral video

In a video seen and shared by millions, a retired Royal Marine suffering from advanced physical symptoms of Parkinson’s is asked by a neurologist to touch his own nose and then touch her finger. As someone who was diagnosed with Parkinson’s in August 2017, this is a common test that I’m asked to do each time I see my neurologist. My family, friends and colleagues are hyper-aware of all things Parkinson’s. Many of them highlighted this video for me to watch. It is amazing, but do you know what you’re watching?

In the video, the man’s hand wags uncontrollably in front of his face unable to will it to do much of anything. He flinches as he flicks his own nose harder than he’d like to have. He’s asked to pick up a plastic water cup. He takes a deep breath and silently commands his body to do so. He crushes the cup in a vice grip and flails it about. Had it been filled with water, it would have all spilled about.

A retired Royal Marine suffering from the degenerative Parkinson’s Disease. Watch the moment his world was changed forever after undergoing a life-changing therapy for Parkinson’s using Technology pic.twitter.com/amODSeE8IJ

— Kevin W (@kwilli1046) October 11, 2018

His family painfully watches it all — you see how they are physically distraught by the extreme tremors. Fifty seconds into the video, the neurologist switches on the electric stimulation deep in his brain. You can see the change immediately. It’s as if he’s awakened. Suddenly he’s alert, his eyes flash with surprise, and a smile creeps across his face.

The neurologist asks, “does that feel better?”

“That feels great,” he says. His family, amazed at the transformation, exhale in laughter and are visibly relieved.

The neurologist repeats the tests from earlier and the tremors have all but disappeared. The retired Royal Marine once again has command of his body. But, now he’s lost control of his emotions. Tears well up in his eyes. He uses a tissue to catch the happiness streaming down his face. At the end, he looks around the room at his family and says, “that deserves a round of applause.”

Indeed it does.

Deep Brain Stimulation (DBS) is life-changing for some people in the Parkinson’s community. It’s a late-stage option for people with Parkinson’s who no longer see results from Levadopa-Carbidopa medication which creates synthetic dopamine. In cases that qualify for DBS, fine wires are inserted into parts of the brain and are electrically stimulated. Usually, the wires connect to a battery that is implanted.

It is important to note, this is not a cure for Parkinson’s.

Parkinson’s is a movement disorder, but it’s more than a shake, a tremor, or a halted gate. In fact, some people with Parkinson’s never develop a tremor. It’s not just a physical disease. Parkinson’s is a collection of symptoms which, in addition to everything you see, includes many non-physical symptoms like loss of smell, bladder issues, depression, anxiety, sleeping issues and more. And there is no cure.

(You can find more on the symptoms on the parkinson.ca website.)

However, for approximately one per cent of Parkinson’s patients worldwide who experienced extreme physical symptoms and received the treatment, Deep Brain Stimulation is miracle-like. DBS can improve tremor, rigidity, slow movement and walking problems. A friend of mine in the U.K., David Sangster, is hoping to get DBS and has been documenting his journey on YouTube.

Unfortunately, in Canada, access to Deep Brain Stimulation isn’t consistent from province to province. There is a several-month wait in Ontario and a six-month wait in Alberta. However, people with Parkinson’s in British Columbia have to wait three years for an initial consultation and another two years for the surgery. There is virtually no waiting in Saskatchewan. Why the disparity?

In B.C., there is only one neurologist who performs the procedure. Saskatchewan has three.

I hope I never need DBS. But, if and when I do, I don’t want to wait for five years to access it. There is an active petition to change the situation in B.C. and expand the DBS surgery program. Please read it and sign if you agree.

If you want to know about my journey with Parkinson’s check out my podcast “When Life Gives You Parkinson’s” You can subscribe so you never miss an episode. It’s free so what are you waiting for?

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