With no running water and only a woodstove to heat his cottage in a remote corner of Quebec, Mark Hogben begins each day by building a fire and boiling water from the lake.
Afterwards, the 54-year-old logs onto TikTok to check out analytics for his latest videos and connect with a global community of friends online, many of whom, like him, have Parkinson’s disease.
While TikTok is best known for its viral videos of Gen Z dance trends and comedic sketches, the former Montrealer says he’s surprised to attract millions of views for clips showing him performing mundane tasks such as cutting wood, fetch water and clean his chimney.
But what really caught the netizen’s attention was the fact that he is doing all this with a neurodegenerative disease. He says the first video in which his stage three symptoms are apparent was the one that caught the biggest audience.
“I didn’t want to do a TikTok showing my face because no matter how hard I try not to shake, it’s gonna be noticed. After 200 videos I did the first where I spoke and showed my face because I wanted to see how it would work analytically. I showed up, secretly hoping I wouldn’t get any views. She got 2.7 million,” Mr. Hogben says of the clip, in which he does not explicitly reveal his illness.
“People recognized my Parkinson’s disease and started contacting me, asking me how I live remotely without any help and how long I have been in the forest. I’ve spoken to people around the world who have Parkinson’s disease or know someone who does.”
Mr Hogben says he moved to his island hideaway on Lake Kipawa about seven years ago and has largely embraced the solitude – save for the videos he uploads twice a day to its nearly 164,000 subscribers.
Before that, Mr. Hogben spent 30 years in Montreal, where he worked for the video game company Gameloft. His wife still lives there and visits him in the summer, along with their two adult sons.
He remembers being diagnosed with stage 1 Parkinson’s disease in 2015 after experiencing unusual fatigue, joint pain and a tremor in his right little finger.
Troubled by early symptoms, he says he moved to his cabin about 600 kilometers away to fulfill his lifelong dream of living on the lake. He also believed the new lifestyle ― including time outdoors, regular exercise and greater independence, as suggested by his doctors ― would help manage the symptoms.
However, he also wanted to be alone.
“I’m very aware of that when I’m talking to someone and their gaze lands on my shaking hand. I know what’s going through his head. At first, I didn’t want any more sympathy.”
Today, he says his Parkinson’s causes tremors, stiffness, sluggishness and loss of balance throughout his body. He can’t tie his shoelaces anymore, so he doesn’t use them anymore.
“I wouldn’t recommend this life for people with Parkinson’s disease, but it worked for me. Here, I have to be active and independent in order to survive. Doctors tell me to keep doing what I’m doing,” says Hogben.
Daily uploads to TikTok and the friends he made online helped him through the dark winter months. He says making videos, responding to comments and analyzing data from his videos keeps him creative and busy, which helps him avoid boredom and loneliness.
He re-evaluates his lifestyle every September during his annual neurological exam in Montreal.
“I see life as a canoe trip,” he says. “Sometimes you don’t know where the portage is until you get there. I will continue to do this as long as I can; I’ll see tomorrow when I get there.”
His videos don’t really talk about Parkinson’s – as of March 30, he’s only talked about it twice since joining the video-sharing platform. But he says people with the disease find him on TikTok and he enjoys the private messages and conversations.
And these people, along with her other followers, have been key in helping her regain her confidence.
“Once I announced that I had Parkinson’s disease, I stopped worrying about it,” notes Mr Hogben.
“Now when someone sees me shaking at the grocery store, I don’t mind. Thanks to TikTok, I’ve already had a million people see me shaking — one more won’t make a difference.”
— Spencer Gillis is a freelance culture and sports writer living in Montreal. He is a Global Journalism Fellow at the University of Toronto’s Dalla Lana School of Public Health.