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Monday, May 4, 2015

Challenging young onset Parkinson's disease with yoga and a smile

Posted yesterday at 9:13pm

When McLaren Vale's Dee Reynolds was diagnosed with young onset Parkinson's disease (YOPD) at the age of 38, her whole life changed – for the better.
Now 41, Ms Reynolds sits on the floor of an old church in Willunga. 
The church has been converted into a dance studio and she has just finished teaching her morning yoga class. 
People will support you. They are not just going to turn their back on you.
Dee Reynolds
Her face is lit up with a broad smile as she describes how lucky she is to have this space to use as a performance hall.
Ms Reynolds now smiles as much as she can as, she tells me, her ability to smile will be one the first things she loses through the onset of Parkinson's.
She is making sure she makes the most of her smile while she still can.
It has been a long four years since her diagnosis with YOPD; a time of heartbreak, confusion and turmoil as Ms Reynolds began to accept a disease that she once thought was only for "old people".

Accepting young onset Parkinson's disease

From her late 20s Ms Reynolds knew something was not quite right with her health.
A busy working mother who juggled careers in childcare and personal training, she occasionally found she was caught in bouts of dizziness or forgetfulness.
"I'd be told I had a cold or it was an inner ear infection," Ms Reynolds said. 
She persisted with seeking medical help and was misdiagnosed with chronic fatigue syndrome and vertigo, with a concern of multiple sclerosis (MS) leading her doctor to refer her to a neurologist.
While waiting to see the neurologist, Ms Reynolds was given a brochure on Parkinson's disease as reading material.
At first she thought the disease could only affect someone much older than her, but when the neurologist dispelled MS as a cause of her impairments and diagnosed her with Parkinson's, Ms Reynolds could not believe what she was hearing.
"It didn't sink in for months," she said.
Thinking Parkinson's meant tremors, Ms Reynolds did not accept she had the disease until she learned Parkinson's reveals itself differently to each individual.
The initial feeling of relief her conditions had been identified and a treatment was available soon changed to concern as the realisation of the disease's gradual degradation of physical control and ability sank in.
For the once highly active young woman, the restraints of the condition hit hard.
"People used to always see me walking around McLaren Vale ... now I am lucky if I can walk 500 metres without struggling or having to stop," she said.

A community's overwhelming response

Ms Reynolds first shared the news with her husband and children, then three close friends she walked with regularly, but it was not until six months after the diagnosis that she began to feel comfortable telling other friends.
"I think part of it was shame that it is an old person's disease and I was just going to be talked about," she said.
I had so many people who wanted to help and it was quite overwhelming.
Dee Reynolds
In response, the Cottage Bakery in McLaren Vale offered to sponsor her in a Parkinson's fundraising walk.
Initially Ms Reynolds rejected their offer, but the bakery staff persisted.
"They put in a massive effort and raised so much money," she said.
The fundraising generated local media coverage, unveiling Ms Reynolds condition to the neighbourhood. 
The response from that unveiling still brings her to tears.
"I had so many people who wanted to help and it was quite overwhelming," Ms Reynolds said.
"To have complete strangers donating money and writing me cards and emails was massive for me.
"Putting it out there was actually a big turning point for me and enabled me and now I don't mind who knows," she said.
The feelings that once lead her to thoughts of fear and shame were gone and now Ms Reynolds tries to openly speak about her condition, to educate others and empower those in similar situations to seek help and acceptance.
"People will support you. They are not just going to turn their back on you."
Having her condition publicised also helped Ms Reynolds explain to others her impairments that could be perceived as something else, including her loss of balance.
"I had a couple of incidents where people would actually say something to me and think that I had been drinking before I would pick my children up from school."
Ms Reynolds abilities peak and subside with her course of medication, with ebbs usually occurring around school pickup time.
An afternoon she struggled to make her way through a local hardware store still scars her memory.
The judgement of a lady shopping in the store almost brought her to tears.
"I was struggling a bit with walking, my legs started to seize up, and this lady walk passed me and muttered 'drinking again'," she said.
"That really affected me that day, and I am really conscious of it now."

Making Parkinson's namaste away

One of the challenges of the development of Parkinson's disease is to remain active while the condition begins to restrict motor-neuron control.
The tremors or uncontrolled physical shaking have become a common sign of the disease.
Unable to exercise in the same way prior to her diagnosis, Ms Reynolds has returned to an old love – yoga.
Organising the classes she teaches around the high-points of her medication cycles, she has also found the routine has had unexpected results on her condition. 
"If I've not been on the matt within two days, I will be in severe pain," she said.
With a condition that restricts movements the more that it tightens its hold, Ms Reynolds said her yoga classes have given her reason to continually show her ever-present smile.
"The neuro has said to me 'keep doing yoga forever'," she said.
Ms Reynolds knows yoga is not the cure for her conditions, but for now it is a motivator for her to remain active in life.
"Yoga for me is good for strength, flexibility and keeps me in a good head space."
As she looks back on the years that have passed since her diagnosis, Ms Reynolds said the moment has been one of the greatest in her life.
"Being diagnosed is the best thing that has ever happened to me.
"I just started to think 'right, one life to live, who knows what is going to happen tomorrow so I am just going to start turning things around and doing what I want to be doing from now'," Ms Reynolds said.
The perspective provided from the diagnosis is what Ms Reynolds can now describe as a blessing.
"Now I just believe in being the best person you can be, being happy and finding what you love – it's been awesome and has changed my whole life."
Ms Reynolds will be a guest speaker at the Parkinson's Australia National Conference in Adelaide May 27-29, 2015.

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