A glimpse of remote living with Parkinson’s draws viewers to unlikely TikTok star

With no running water and only a wood stove to heat his remote Quebec cabin, Mark Hogben starts each morning by making a fire and boiling lake water.

Then the 54-year-old signs in on TikTok to check the analytics of his latest videos and touch base with a global community of online friends, many of whom, like him, have Parkinson’s disease.

While TikTok is best known for viral videos of Gen Z dance trends and comedy sketches, the former Montrealer says he’s surprised to attract millions of views for self-shot clips of mundane chores that include chopping wood, fetching water and cleaning his chimney.

But what really caught viewers’ attention was the fact he does it all with a neurodegenerative condition. He says the first video in which his stage three symptoms are apparent drew the highest audience.

“I didn’t want to do a TikTok with my face in it because no matter how hard I try not to shake, it’s going to come through. After 200 videos, I made the first one where I talked and showed my face because I wanted to see how it would perform analytically. I introduced myself, secretly hoping I wouldn’t get any views. It got 2.7 million,” Hogben says of the clip, in which he does not explicitly reveal his condition.

“People recognized my Parkinson’s and started contacting me, asking me how I live remotely without any help and how long I’ve been in the bush for. I have talked to people all over the world who either have Parkinson’s or know someone who does.”

Hogben says he moved to his island refuge on Quebec’s Lake Kipawa about seven years ago, and has largely embraced the solitude – save for the twice-daily uploads for his nearly 164,000 online followers.

Before that Hogben spent 30 years in Montreal, where he worked for the computer game publisher Gameloft. His wife still lives there and visits him in the summer, along with their two adult sons.

He recalls being diagnosed with stage one Parkinson’s in 2015 after experiencing unusual tiredness, joint pain, and a tremor in his right pinky.

Unnerved by the early symptoms, he says he moved to his cabin about 600 kilometres away to fulfil a lifelong dream to live on the lake. He also believed the new lifestyle – including time spent outdoors, regular exercise, and more independence, as his doctors suggested – would help manage symptoms.

However, he also wanted to be alone.

“I’m very aware when I’m talking to somebody and their gaze goes to my shaking hand. I know what’s going through their mind. At the beginning, I didn’t want any more sympathy.”

Today, he says his Parkinson’s causes whole-body tremors, rigidity, slowness, and loss of balance. He can no longer tie shoelaces, so he doesn’t use any.

“I wouldn’t recommend this life to people with Parkinson’s but it has worked for me. Out here, I’m forced to be active and independent to survive. The doctors tell me to keep doing what I’m doing,” says Hogben.

Daily TikTok uploads and the online friends he’s made have helped him through the dark winter months. He says making videos, responding to comments, and checking his analytics keep him creative and busy, and that helps him avoid boredom and loneliness.

He reassesses remote living each September when he has an annual neurological check up in Montreal.

“I see life like a canoe trip,” he says. “Sometimes, you don’t know where the portage is until you get there. I’ll keep doing this as long as I can; I’ll figure out tomorrow when I get there.”

His videos are not really about Parkinson’s – as of March 30 he’d only mentioned it twice since joining the video-sharing platform. But he says people with the disease find him on TikTok and he welcomes private messages and conversation.

And they, along with his other followers, have been key to helping him regain his confidence.

“Once I put it out there that I had Parkinson’s, I stopped worrying about it,” says Hogben.

“Now, when someone sees me shaking at the grocery store, it doesn’t bother me. Thanks to TikTok, I’ve already had a million people see me shaking — one more isn’t going to make a difference.”

— Spencer Gillis is a freelance writer focused on culture and sports who lives in Montreal. He is a fellow in Global Journalism at the University of Toronto’s Dalla Lana School of Public Health.

This report by The Canadian Press was first published March 31, 2022.