Video – Traveling Along Lake Ontario Raising Awareness for Lyme Disease One Paddle at a Time
By Cecilia Nasmith/Today’s Northumberland
Ian Parish, age 44, made a overnight stop at Cobourg’s Trailer Park this week as a break from his summer project of paddling from one end to the other of Lake Ontario to raise awareness of Lyme Disease.
The journey began 16 days ago at Niagara-on-the-Lake, with a pretty rough first four days due to his Lyme Disease RA (rheumatoid arthritis).
To the best of his belief, his Lyme Disease originated when he was growing up as a marsh kid in Long Point, “constantly playing in the marsh – we call it swamps over there, just as a local term.”
Lyme Disease is an infection that crosses the brain-blood barrier relatively easily. In some cases, it can affect the central nervous system, causing irreparable damage to the those who have it long-term.
“For a period, it destroyed my life. I didn’t have a life, not able to do normal things, not able to get off the couch,” Parish recalled.
The heavy work he did made him come home with great swollen joints. Doctors he consulted tended to blow off his concerns or chalk it up to arthritis.
Though he hasn’t really felt comfortable talking about his journey with Lyme Disease, he wants to get past that in order to raise awareness through his circuit of Lake Ontario.
“I have experienced the social stigma as it pertains to Lyme Disease, because the general public hasn’t been made aware of what it is,” he told Today’s Northumberland.
Even friends who mean well can be dismissive, which he finds traumatic.
“And often you don’t react well. Combine that with the damage in your central nervous system, and it compounds the issue for people with Lyme Disease.”
Finding the right doctor who prescribed just the right antibiotics made a lot of difference, helping him get his life back.
“There’s a misconception that there is a single drug, but it’s not just one drug. It’s a multi-drug process,” he said.
The struggle is too familiar for those going through this same struggle. Parish is even aware of a lawsuit that has resulted, and he hopes for a positive outcome – not just for the complainant but for the thousands of people like him looking to be taken seriously.
“One of the most common things with people with Lyme Disease, really, is self-isolation,” he said – perhaps because of the social stigma, perhaps due to change in their neurological system.
“I feel very fortunate in my fight with Lyme Disease because I seem to have beat a number of its symptoms, especially the really severe symptoms. A lot of the pain issues I used to have, I have been able to kind of get past those sorts of things.
“But there are still a few times a year where there’s thing that go on with my body that end up putting me in the hospital. And then there’s never a resolution to any of them because they can’t find the issue.
About they only thing they come up with at this point is that it’s likely the central nervous system, due to Lyme Disease.”
Parish recalls all those years ago as a marsh kid, how blissfully unaware they were that such a thing as Lyme Disease existed.
“I can’t tell people not to go outside and not to play,” he said.
Medical literature he has reviewed tells him that about 30% to 40% of those who do contract it will always have problems or never recover. He hopes the research will be done to get to the bottom of these anomalies.
“I would just like to see a consensus on the truth about what’s actually happening,” he said.
On a happier note, Parish said, “I was always a kayaker.
“I was about 10 or 12 years old when I got my first boat and, if people could have seen what I was doing as a kid, they would totally understand why I am doing this,” he declared, recalling those days of paddling across Long Point Bay as a kid.
“Taking on a Great Lake, paddling the coast, enjoying the breeze is totally in line with the way I have lived my whole life.”
Seeing homeless encampments along the shorelines was not something he was prepared for, but any homeless people he has met have been friendly and even hospitable. It’s the kind of thing he has seen most in the big populated centres like Toronto and St. Catharines.
“On the northern lakes, you don’t see that – it’s not part of the landscape.”
Though his stop on Cobourg’s shore coincided with a brutal heat wave, Parish said his thick kayaking suit actually protected him from the heat, much as desert dwellers rely on their heavy robes to shield them from the sun.
