Kylie Humphreys is reclaiming her power by walking 14km from Tallarook to Trawool, all to raise awareness for a rare neurological condition.
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Billie Davern
Kylie Humphreys says to fight orthostatic tremor, she’s “doing what it’s trying to take away”.
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The Puckapunyal resident was diagnosed with the rare neurological condition, known as OT, two years ago.
Like many, Ms Humphreys didn’t know the condition existed before her diagnosis.
“Until I got it, I’d never heard of it, and I haven’t come across a single person, to date, who actually knows what it is,” she said.
“Even now, when I go to hospitals, I’ve actually got to explain to them what it is. That’s how rare it is.”
As a result of its rarity, very little is known about OT.
Those diagnosed report experiencing a sense of unsteadiness when standing, a feeling which subsides when seated or walking.
Rapid muscle contractions plague the legs when the individual stands still, making the condition, in its early stages, like an invisible illness.
“I’ve had to say to people, while I’m standing up, that I have issues standing,” Ms Humphreys said.
“They’d look at me and say, ‘I don’t understand, you’re standing here telling me you can’t stand’.”
Ms Humphreys’ awareness walk will be taking place on Sunday, September 7.
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Before her diagnosis, Ms Humphreys led an active life of independence.
She recounts skydiving, abseiling and a strong connection with horses.
Coming to terms with OT has meant Ms Humphreys has had to come to terms with a future she never had planned.
“Even something as simple as, like I’m not married, but I wouldn’t be able to stand at an altar,” she said.
Dealing with the loneliness of a new diagnosis has, for Ms Humphreys, been eased by a Facebook group of people who also have OT.
The group of less than 1000 people has within it a collection of stories from across the world.
Ms Humphreys said it was wonderful to connect with the group.
“You can just ask anything on there and there’s no judgment, we all understand,” she said.
Noticing that a general theme on the group’s page appeared to be one of pessimism, Ms Humphreys decided that enough was enough.
Ms Humphreys was provided the opportunity to write her story for Earlwood Equine’s website and after she shared it to the group, she understood what difference positivity could make.
“I had someone, after reading my article, say they were in tears reading it, tears of inspiration,” she said.
“I’ve had others say that this was the kick they needed to get back up and try.
“It’s nice reading those things, to know that you can make a difference to someone from across the world.”
Now, Ms Humphreys is taking her diagnosis into her own hands.
Members of the group are using the month of September to raise awareness about the rare condition in their own communities.
On Sunday, September 7, Ms Humphreys will be walking from Tallarook to Trawool, a 14km trek that she once would have found easy.
As there are no known charities dedicated to fighting OT, the walk is about drawing attention to the condition.
“There are others with OT that are further into it who are in wheelchairs or need someone to help them out of bed,” Ms Humphreys said.
“Considering OT takes away your ability to walk in the end, I thought, I’m going to fight it by doing what it’s trying to take away.”
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