For Outlook resident Ian Robertson, living each day with the degenerative, central nervous system disorder known as Parkinson’s isn’t an exercise in gloom and doom. In fact, it’s quite the opposite for the avid curler and hockey instructor, as he believes that a positive attitude is more helpful in approaching life with the disease.
"It really hasn't changed my life all that much," said Robertson, sitting down with The Outlook. "I mean, it HAS changed it, but I still curl, I still dance, and I still do everything that I used to do."
To Ian, tackling life with Parkinson’s is all about embracing every new day with vigor instead of wallowing in self-pity.
"I've had Parkinson's since 2012, and when I went to my first support group meeting with (my wife) Sue, we were quite disillusioned by it," he explained. "It was all this woe-is-me sort of crap, so I hadn't gone to another one for five years. We went to another one just two or three weeks ago, and again, they were talking about the elephant in the room, which is death. Nobody likes to talk about death, and I'm going, 'No one likes to talk about LIVING!' So I put a rant on Facebook, and I had a lot of people saying, 'Why don't you start your own group?' and I thought okay, I'll give it a go."
With that, Robertson created a Facebook page entitled, ‘Parkinsons- My Super Power’, where he extolls about living with the disorder by way of articles, opinions, and light-hearted cartoons.
He’s also set a date and location for what he hopes will be the first of many Parkinson’s support group meetings in Outlook. The first meeting will be held on Wednesday evening, May 10 at the Outlook Legion Hall.
"It's not necessarily about giving people more feedback or information, it's really just about 'How are you coping?'," said Ian. "Parkinson's is sort of like a designer disease; there could be 100 people there with the disease, but it treats them all differently."
Robertson says the support group meeting will focus on discussions about how people are coping with Parkinson’s, as well as sharing ideas on living with it and how to be proactive in tackling the everyday issues that come with the disorder.
"The discussion will vary, and what we want to try and do with this first meeting is set up a few topics where we'll divide into groups and talk about things like 'How did you handle your diagnosis?', and other things like sleep disorders and foot cramping," he said. "It's about getting their ideas written out and presented. One of the things about Parkinson's is you lose the volume in your voice, so it's a good practice to get up and speak."
Ian doesn’t shy away from discussing his disease, as he points out that it’s quite visible when sitting and having a conversation, and he even finds ways to poke fun at it when he’s out on the ice with young hockey players.
"I run a goalie school with Travis Harrington, and we work with Sask Hockey and Hockey Canada," he said. "Working with the kids, I've never been one to shy away from it. I get asked by the kids all the time, 'Why are you shaking?' and we just sort of make fun of it and move on from there. So technically, I guess I've been teaching about Parkinson's ever since I got diagnosed because it's visible, and I'm visible when I'm out with the hockey rink. So starting this group up was really not a problem for me. I found that the ones we went to were more for those with Parkinson's to listen instead of react or be pro-active at, and that's what I want to try and do; have them be more pro-active."
Robertson feels that other people afflicted with Parkinson’s may get lost in their own grief, and that there are other diseases out there that make him see a different perspective on his own ailment.
"I feel that anybody that I've dealt with, they almost don't want to be visible," he said. "Maybe that's just my opinion, but to me, they're traumatized by having a disease. Having had a sister pass away from ovarian cancer, there are a hell of a lot worse diseases I could get than just sitting here and shaking away."
As someone living with the disease, Ian says his own daily life isn’t all that different than it was before the diagnosis. Routines may change, and there are some physical setbacks, but it doesn’t affect his life too drastically.
“I don’t think I struggle daily with any of it,” he said. “You change your life a little bit, as I do get a little tired, and because I’ve lost my sense of smell, it means I lost my sense of taste. My foot cramps and loss of smell are probably the two biggest drawbacks for me, as the cramps can affect your sleep. But I’m still able to do everything I always did, just maybe a little slower.”
If the first Parkinson’s support group meeting in Outlook is successful, Robertson hopes they become a recurring event in the community, and he urges anyone living with the disorder or otherwise affected by it to come out and share in the discussion.
“We’re probably looking at trying to meet once a month,” he said. “Probably not during the summer, as I’m not around in those months because I run a hockey school in the city; we rent a house and stay up there. But it all depends on how the group wants to meet. After I posted the info all on Facebook, I’ve had a lot of people approach me and ask ‘Is it just for Parkinson’s?’, and I suppose it doesn’t necessarily have to be just for that because I’m sure there are some similarities that people are going through. But if I have any expertise, and I’m not saying I have any expertise at all, it’s with Parkinson’s. However, if someone with similarities thinks they can get something out of it, I have no problem with them showing up.”
The Parkinson’s support group meeting at the Outlook Legion Hall on Wednesday, May 10 starts at 6:30 pm.