Kylie Humphreys walked from Tallarook to Trawool on Saturday, September 6 to raise awareness of her rare neurological condition, orthostatic tremor.
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Kylie Humphreys’ Saturday stroll was a little different than most.
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Ms Humphreys traversed the almost 14km distance from Tallarook to Trawool on Saturday, September 6.
On her back: a purple T-shirt reading “I have OT, but OT doesn’t have me.”
Diagnosed over two years ago, the Tallarook local had no idea what the rare neurological condition, named orthostatic tremor, was.
As her symptoms progressed, Ms Humphreys found her ability to stand, walk, bend over — her ability to perform tasks she once found simple — to be hindered.
She quickly found herself connecting with a group of individuals with the same condition on a Facebook support group.
“When I first came across the group, it was very overwhelming,” Ms Humphreys said.
“I was reading stories of people who couldn’t walk, who couldn’t get out of bed.
“I was thinking too far into the future, and I didn’t want to be like that. I had to stop thinking about what’s down the track and think about what’s now. So, I decided to post positive things and try and turn the group around.”
It’s estimated that fewer than 1000 people have OT globally; however, due to its rarity, exact figures are unknown.
To raise awareness of the condition, Ms Humphreys organised a walk, attended by her family, friends, workmates and eight-year-old daughter.
Kylie Humphreys said she was overwhelmed by the response of people across the globe with OT to her successful walk.
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“I was surprised to have even one person,” she said.
“I wasn’t expecting anyone to come, I was happy to do it on my own, but it was nice to have some of those people there.
“I didn’t think I’d be able to finish it. I thought I’d be telling the story of how I tried to walk the 14km. In the end, just having the people there with you, it really does motivate you.”
Adhering to her title as the support group’s “little ambassador”, Ms Humphreys posted a two-minute video on Facebook, which detailed her journey along the rail trail between the two local towns.
Describing the response of group members to this video brought Ms Humphreys to tears.
“The response has been absolutely overwhelming. It feels really, really good to know that you can help other people from all around the world,” she said.
“They are just over the moon. They call me their little ambassador because some of them have had this for 20 or 30 years, and they just felt like they haven’t been heard.
“Just to know that you can help people, even in the smallest of ways, and how a little two-minute video can change someone’s life. To receive a message to say that you really inspired somebody. That was really touching.”
While there’s much work to do in terms of raising awareness for OT, Ms Humphreys said she would remain hopeful that “we can get more answers”.
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