Wednesday, 12 July 2017 11:44

Vanguard school principal walking across Sask. to raise awareness about Huntington disease

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Vanguard School Principal Greg Shwaga is spending his summer on the road to raise awareness and funds for the Huntington Society of Canada.


“They support families that are affected by Huntington disease and they also fund research into finding a cure for Huntington disease,” he said. “So that was one of the reasons why I wanted to do something. And then for walking across the province, it kind of ties in with the whole Canada 150 summer, because I wanted to do something where I could see Saskatchewan and take it all in. I thought a walk would be something that I could probably do and something that would allow me to do both – raise money for Huntington’s and also celebrate our province in a way too.”
He will take about three weeks to complete the distance of 676 kilometres from the Alberta border near Macklin to the Lake of the Prairies on the Saskatchewan/Manitoba border.
He started the walk on July 10 and completed the first day under clear skies, but walked in pouring rain during the second day.
He spoke to the Prairie Post a few days before starting the walk. His intention is to walk between 40 and 50 kilometres a day and there will be a few rest days. He therefore expects to finish the walk by July 27.
“I just don’t know how realistic my goal of 40 to 50 kilometres a day is,” he said. “I think I can do it, but yet I’ve never walked more than 18 in a day. So I don’t know for sure. If I need a few more days, it might be more than the 27th, but that’s my anticipated day anyways.”
He decided to do the walk to support of the Huntington Society of Canada because his wife’s family has been affected by this debilitating brain disorder.
“My mother-in-law passed away from Huntington’s disease last April and she had battled the disease for about 20 to 25 years,” he said. “It’s a disease that not a lot of people know about.”
The disease is fatal and incurable. It affects about one in every 7,000 Canadians and about one in every 5,500 is at risk of developing the disease.
“Before you can even overtly see the physical signs of Huntington’s you will see a cognitive decline,” he said. “So there'll be mood swings, there'll be irritability, there'll be short term memory loss and all that kind of stuff before you start showing the movements of Huntington’s … and that's where the disease starts to look a lot like Parkinson’s disease with uncontrollable movements and shakiness and jerking and so on. Then towards the end basically your muscles get to the point where you just don't have any body control anymore. So you end up like someone with ALS in the latter stages, where you're basically totally incapacitated until you die.”
A blood test can be used to determine if someone has the gene that causes Huntington disease, but many people who are at risk decide not to take the test.
Canadian researchers have done groundbreaking research to find a cure for the disease and an international study group has started several drug trials.
“I think right now just more research is needed because it's not a disease that is on people's radar,” he said. “It doesn't quite get the same attention in terms of research that some other diseases would.”
One of the challenges for families who must deal with the disease is that there is not a lot of support available to them. One of the goals of the Huntington Society of Canada is to provide counselling and other support services to individuals and families.
“They would put you in contact with people that maybe have been through it, and that's a huge thing too, because even as I'm doing this walk, I'm starting to get phone calls and I'm starting to get e-mails and things like that from people that have been affected by it,” he said. “It's kind of neat to be able to connect with them because the stories are similar, even though you didn't know them. So that kind of stuff is important, and that's what the Huntington Society would do as well in addition to funding all that medical research.”
His decision to walk through central Saskatchewan was partly influenced by a desire to connect with an active chapter of the Huntington Society in Saskatoon.
“So I initially want to go through there to meet them and then basically I didn’t want to go on the really well travelled routes like the Yellow Head or the TransCanada route, because I thought it would be too much traffic, and I thought it would just be maybe a little bit too dangerous for me and for people trying to pass me,” he said.
On the east side of Saskatoon there are small villages at regular intervals along the route that will serve as useful markers during the walk. In addition, this route will take him through the Wroxton area, where he grew up on a farm.
“I’ve not done anything like this,” he said. “I ran the Queen City Marathon in 2007, but I trained for that and I was running. It was a little different situation, but I’ve never done anything like this for this extended period of time.”
Shwaga started his preparation in late February with extended walks of up to 18 kilometres while carrying a backpack.
“I took a backpack and I loaded it down with 30 pounds,” he said. “There were times where I would have put on 100 kilometres in a week. So I was kind of getting an idea where I’m at there, but I didn’t really do any specific training.”
He initially planned to carry his backpack during the walk and to sleep in a tent at the end of each day, but through sponsorships he will have a support vehicle that will be driven by his daughter and they will be able to use hotel accommodation.
His fundraising goal is $15,000 and there was a good response even before the start of the walk.
“It starts off with people that know you’re doing the walk,” he said. “They may know, so they start donating, and then it got a little bigger since then. So there’s been a few people obviously that I don’t know that have donated to the walk, but as it’s going along it’s getting a little bit bigger on social media and getting picked up in a couple of papers and CTV is picking it up.”
Donations towards his walk can be made at bit.ly/GregSKwalk and information about the walk is available on different online sites. Details about the walk are on the website www.igslearn.com and there are updates about the walk on the Facebook page Greg’s Walk for Huntington Disease and on his Twitter feed @gshwaga.

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Matthew Liebenberg

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