independent

Friday 18 October 2019

Clare was diagnosed with Parkinson's Disease at 24

Ciara Galvin

Diagnosed with Parkinson's Disease at the age of 24, creche worker Clare Connolly was determined not to let the disease get the better of her.

After an innocuous fall in college at the age of 19, the Clare native now living in Sligo became more aware of her body.

"About a month or two after the fall one of my toes started twitching, my mother noticed and asked could I stop it and I couldn't, that's when we got suspicious," explained the 29-year-old.

In and out of doctors appointments, it was a whole five years later when Clare finally saw a neurologist who informed her that the earlier fall had not triggered her symptoms.

In March 2014 Clare was diagnosed with Juvenile Onset Parkinson's Disease. Clare admits that it took a number of days for the news to sink in.

"It was only afterwards it hit me. And I thought, 'What do I do now?', but there and then I was more fascinated looking at the scan of my brain than the prognosis."

The prognosis wasn't good. After hearing that Clare worked in childcare, her neurologist told her she would only have ten years in her career due to the disease.

Sitting in the car after receiving the diagnosis, Clare showed her steely resolve stating to her mother, 'This won't stop me'.

The amateur theatre enthusiast's next thoughts were focused on overcoming her symptoms. With an upcoming show with her local musical society, Clare was adamant to get rid of her tremor before taking to the stage.

"I thought, 'How quick can this medication work'. From 19 to 24 I deteriorated with no treatment. My tremor was very visual, I was shuffling, my legs were so heavy and weak and I was very fatigued, walking with my knees and not with my hips."

Accepting her diagnosis and coming to terms with living with it, Clare attended World Parkinson's Day in Dublin which in turn introduced her to Smovey, an exercise ring that vibrates.

The exercise tool was revolutionary for Clare and helped bring her walk back to normal. Such was the improvement that her neurologist told her she had added a further ten years to her work span.

A firm believer in exercise, she explains that medication can only do so much in terms of staving off the progression of the disease

"You have to do exercise. That's what I always tell anyone diagnosed, forget about the medication you're on, what exercise are you doing? You have to do exercise."

Previously not one for exercise, Clare now keeps fit with yoga classes and cardio.

"It kills me, but at the end of the day, this is what my body needs."

Involved with Young Parkinson's Ireland (YPI), a support group which offers advice, runs events and provides talks, Clare says the group is highly beneficial for anyone dealing with the disease, whether newly-diagnosed or not. The youngest member of the group, she adds that the organisation if for people under the age of 55 who have the disease.

"We have all sorts of talks and advice from insurance, to work.

"What's the first thing you think of when you're diagnosed? What do I need help with? We've listened to young people who have been diagnosed and what they are worried about," she explains.

Each month YPI have a social event inviting those with the disease to meet up and chat.

"The organisation also has a closed Facebook page that people with the condition can join.

"If someone has a query or a question there's advice there."

Speaking about ongoing management of the disease, the Clare native is positive and is currently on as little medication as possible.

"I'm on a low dose of medication, I was on an average dose but we cut it back because I was getting too much medication for what I needed. I'm on the bare minimum and I'm very stable on that and I'm able to work full time."

Asked how it impacts her life and whether her condition is noticeable to others, the 29-year-old speaks candidly.

Parents of children she takes care of recently approached her informing her they never knew about her condition, which surprised her as she explains she does have a noticeable tremor.

"With Juvenile Onset Parkinson's a lot of people don't see that you're sick and a lot of it is internal, fatigue, soreness and stiffness and depression comes hand-in-hand when you're diagnosed, but you just have to keep your head above water and keep a positive attitude."

Meeting newly-diagnosed people often through her work with Young Parkinson's Ireland, Clare makes it her business to chat to them and make sure they're doing okay .

"I tell them they will be ok and they will have a normal life, they'll just have to alter it a little bit.

"The first thing I say to them is, 'It's okay not to be okay and to make sure they're getting the right treatment. My door is always open for any questions.

"Everyone has a different experience with Parkinson's." A big message that Clare is trying to communicate to people is people younger than 55 get diagnosed with the disease.

"I don't consider it an old age disease anymore. I got it." In order to get this message out, upcoming awareness campaigns about the disease are being rolled out, including TV ads and a feature film has been released entitled 'The New Music'. The film is available to view via Facebook and Twitter. Clare emphasises that anyone in Sligo who has been newly-diagnosed and is looking for information can contact her directly.

So, what about hopes for the future living with the degenerative disorder?

For Clare it's simple, 'a cure'. "A cure, everybody is hoping for a cure. Like Sinemet was the newest medication invented and that's 50 years old so you're hoping for something else. In terms of research they're getting on in ways. People have longer life-expectancies than many years ago.

In the short term however, the positive spokesperson is focused on happier things a she prepares to marry her partner Ronan later this year.

For more information about Parkinson's Disease you can visit www.ypi.ie or email ypisligoevents@parkinsons.ie.

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