Connect with us

Health & Beuaty

‘It’s not life or death, I just shake a bit’: Young and living with Parkinson’s

Email Parkinson's not just an older person's disease and 'not life or death, I just shake a bit' ABC Mid North Coast By Emma Siossian

Posted April 11, 2019 06:36:15

Kim Dahler sitting at a cafe with her husband smiling. Photo: Kim Dahler, pictured with husband David, says Parkinson's is 'not life or death, I just shake a bit'. (Supplied: Kim Dahler) Related Story: MASH star Alan Alda reveals he has Parkinson's disease Related Story: Parkinson's disease sufferer rowing across Indian Ocean for groundbreaking study Map: Port Macquarie 2444

You would be forgiven for thinking Parkinson's is a disease that affects only older people.

Key points:

  • Parkinson's disease is a progressive, chronic neurological condition that affects movement
  • Early onset Parkinson's can affect people in their 30s and 40s
  • Symptoms include muscle rigidity, tremors, postural instability, gait disturbances and bradykinesia

But it can affect people in their 30s and 40s.

Kim Dahler from Port Macquarie on the New South Wales mid-north coast was diagnosed with early-onset Parkinson's in 2013. She was in her mid 40s.

"There's a lot of younger people affected, in hindsight I had symptoms in my 30s," she said.

"There's a lot of people in the same position and because the symptoms are gradual you don't seem to notice as much."

Kim Dahler at a table with her brother and mother. Photo: Kim Dahler with her brother, Mark Baker and mother, Robyn Baker. (Supplied: Kim Dahler)

"I actually didn't identify the symptoms myself, a friend did, we were at a conference presenting to a large group and I was shaking, and she said that's not just nerves, there's more to it than that," Ms Dahler said.

She said it took her quite a while to get diagnosed, but during that time she did a lot of research and had a fair idea she had Parkinson's.

"It took a journey of about 12 months to get the diagnosis and it took me a little while to come to terms with it, I'm not sure why, the stigma, the embarrassment, I'm not sure," Ms Dahler said.

"I put my head in the sand a bit I think, and just worked."

Living positively with Parkinson's

A group pf people wearing a Parkinson's disease awareness t-shirt. Photo: Kim Dahler designed a t-shirt to help raise awareness about Parkinson's disease. (Supplied: Kim Dahler)

Ms Dahler said since her initial diagnosis she had turned her attitude around and was focussing on the positives, still working full-time in a demanding job and travelling.

She is also trying to increase the community's understanding about Parkinson's by telling her story and offering support to others.

"I'm out the other end now and I want to speak up and say it's not the end of the world," she said.

"I work full-time, I have to be a little bit careful with my movements, but life goes on.

"It's not life or death, I just shake a bit.

Kim Dahler with a work colleague. Photo: Kim Dahler still works full-time, seen here at a Taree event, and said she received a lot of support. (Supplied: Kim Dahler)

"I get a lot of support from my employer, so I am very fortunate.

"It's a balancing act as well, if I do a big drive I will stay in a branch for a day just to balance my health, I have to be sensible and keep it manageable."

Seeing the lighter side can also help.

"You have to have some humour about it — I was fishing with my brother not so long ago and, as he looked at the rod, he said 'Is that you or the fish?'," Ms Dahler said.

Ms Dahler has also designed a light-hearted t-shirt featuring the slogan, 'I haven't got the DTs [delerium tremens caused by withdrawal from alcohol], it's just Parkinson's'.

Don't be afraid to ask for support

Gregg Faulkner is President of the Port Macquarie Parkinson's Support Group Photo: Gregg Faulkner is President of the Port Macquarie Parkinson's Support Group and said talking to others was important. (Supplied: Gregg Faulkner)

Ms Dahler said when she was first diagnosed she did not ask for help, but probably should have, and is now involved in a support group.

Port Macquarie Parkinson's Support group president, Gregg Faulkner, said it was important people reached out for help.

"We have monthly meetings and the most important part is the morning tea," he said.

"It's a disease which has a fairly simply cause — there are a few cells in the brain that don't produce enough dopamine.

"But the end result of that is physical, psychological, emotional, all manner of changes and it's a complex web of symptoms.

"I was diagnosed eight years ago, I'm doing pretty well, my voice sometimes lapses, but I'm still president of the local support group, which is growing like crazy, which is a mixed blessing.

"More people are seeking support, but it also indicates the prevalence of Parkinson's in the community is probably higher than we previously understood."

What is Parkinson's?

According to national peak body, Parkinson's Australia, there are more than 80,000 Australians living with Parkinson's and around 20 per cent are of working age, with many diagnosed in their 30s and 40s.

Parkinson's is a progressive, chronic neurological condition which affects the nerve cells in the brain that produce dopamine, which is particularly important in controlling movement.

Symptoms, which can include muscle rigidity, tremors, and changes in speech and gait, generally develop slowly over years and vary from one person to another.

After diagnosis, treatments can help relieve symptoms, but there is no cure.

Woman holding a Parkinson's t-shirt. Photo: Kim Dahler has created a t-shirt to raise awareness and find some humour. On the back it says, 'I just have Parkinson's'. (Supplied: Kim Dahler)

Ms Dahler said treatments were always evolving.

"It's changing all the time, each time you are told to have more dosage, or less dosage, change your medication if you're getting symptoms," she said.

"It's a balancing act all the time."

April 11 is World Parkinson's Day, aiming to raise awareness and money for research.

Topics: health, regional, community-education, charities-and-community-organisations, mental-health, community-and-society, parkinson-s-disease, diseases-and-disorders, port-macquarie-2444, wa, vic, tas, sa, qld, nt

Contact Emma Siossian

More stories from New South Wales

Continue Reading




Subscribe

Trending