Parkinson's disease: What living with the condition is like

April is Parkinson’s Awareness Month, with April 11 being World Parkinson’s Day, and while Parkinson’s disease is often thought of as an “old person’s” health issue, the reality is that Young Onset Parkinson’s Disease (YOPD) accounts for around 20 percent of diagnoses.

Aussies that are diagnosed with YOPD are often under the age of 50.

Canadian actor, Michael J. Fox, who was diagnosed with Young Onset Parkinson’s Disease in 1991 at the tender age of 29, is one of the best known faces of the disease, and still a fierce advocate of those living with it.

Parkinson’s Queensland is promoting the importance of identifying some of the lesser-known early warning signs and symptoms of Parkinson’s Disease, which is now the second most common neuro-degenerative disease.

Living with early-onset Parkinson’s Disease

For Stuart Godsall, being told he had early-onset Parkinson’s disease came at the end of a long journey to try and get a diagnosis.

“I had a few symptoms that started in my mid 40s, I’m now 50,” Stuart tells Yahoo Lifestyle.

“More specifically, I have a tremor in my left hand and I started to experience a feeling of being unbalanced whilst running, which is something I do a few times a week.”

“I also started to have very small and cramped handwriting, which I now know is called Micrografia, and my voice started to get husky towards the end of the day.

“My symptoms come and go in intensity so that sometimes I doubted there was anything really wrong, although when my symptoms were at their strongest, I knew that things were absolutely not right.”

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Stuart eventually went to his GP who referred him to a neurologist.

“My first couple of neurologists sent me for scans but were unsure of the diagnosis. Eventually I went to see Professor Peter Silburn, my treating neurologist who specialises in Parkinson’s, and he quickly identified that I had Parkinson’s which was a big step forward for me as it took 18 months to get a clear diagnosis.”

Stuart’s journey to diagnosis was a significant learning process for him.

“I had assumed that there would be a simple test or a concrete outcome. This period felt like a bit of a rollercoaster at times. I hope that in sharing this it can make other people who are currently in this process realise that what they are experiencing, or feeling is completely normal.”

Getting the right treatment

Stuart says he takes medication which includes a combination of carbidopa and levodopa which manages his symptoms, but won’t cure the disease or prevent it from getting any worse.

He has also discovered that outside the scope of medication there are critical treatments and activities that have really made a difference to how he moves and feels.

“I make sure that I do plenty of general exercise, such as running, walking (my dog Pepper mostly), playing golf and outrigging. I also get some amazing treatments from my support team, which includes clinical pilates, PD Warrior exercise group, speech therapy (using the Loud Crowd system) and a psychologist.”

Being involved with Parkinson’s Queensland, which has been a massive support to Stuart, is important to him.

“I’m a member of the Early Onset support group who meet monthly by Zoom, where we can make friends and share experiences with others who are going through similar things. I also do some volunteering with Parkinson’s Queensland, which gives me a tremendous sense of purpose and introduces me to lots of wonderful people at the various events, such as fundraising or seminars, that they organise.”

The impact of Parkinson’s Disease

Parkinson’s can feel different for each person, but Stuart says he has good and bad days with the disease.

“Parkinson’s tends to come and go in intensity of the symptoms, so when it’s milder, I can do pretty much anything I used to, albeit that I’m getting older regardless of the Parkinson’s.

On a good day I can still play a pretty handy round of golf - my handicap fluctuates but is around 15. When it’s more intense, it can make it quite tough to do some everyday activities, like typing for work or anything requiring good balance.”

When it comes to his social life, Stuart admits the disease “can sometimes take an emotional toll on me and it can be tough to be motivated to socialise.”

“I am very lucky and so, with the support of my loving family and friends, I mostly try and stay as social as I always have been.”

Stuart says his diagnosis has allowed him the opportunity to reflect on how he wants to live a more meaningful life.

“Perhaps unsurprisingly, I have majorly readjusted my work/life balance to focus on life, my family, my friends and my wellness and to focus less on work,” he says. “I don’t think many people reflect later in life that they wish they’d spent more time at work.

“Strangely, I feel quite lucky that my diagnosis turned out to be Parkinson’s, as there were some more aggressive diseases that were ruled out before my Parkinson’s diagnosis was confirmed. Whilst Parkinson’s is a very serious, and surprisingly common, neurodegenerative disease, it is at least a disease that typically progresses over years and decades rather than weeks and months.”

How the community can help

Just like many people living with a chronic health condition, Stuart points out that Parkinson’s Disease is not well understood in the wider community, but curiosity and compassion are key.

“It seems to have quite limited awareness generally, especially Young Onset Parkinson’s, as most people, including myself before I got sick, think of it as something that only affects the very elderly,” he says.

“I think that the wider community can better support people with Parkinson’s by educating themselves about it and then helping anyone they know with unexplained symptoms to get to their GP and get checked out.

“It seems to me that it can’t really do any harm to do so and you might, like me, find a tremendous sense of relief in knowing what’s happening to you and be able to seek out the help and support that is so vital to make the best of a very tough situation.

“By getting the right support around you, I really believe that Parkinson’s shouldn’t, and doesn’t have to, be faced alone.”

Signs and symptoms of Parkinson’s Disease

Parkinson’s Disease can affect people in different ways. It’s also not just a condition that affects older people, and it’s important to be aware and recognise early signs of Parkinson’s.

No one sign is a reason to worry, but if you or someone you know develops one or more of these signs, it’s probably a good idea to speak to your Doctor.

Micrografia – abnormally small or cramped handwriting. The written words on a page start to look different, letters become smaller, words and lines crowded.

Hyposmia – a partial loss of the ability to detect smells can be an early sign of Parkinson’s and can present years before motor symptoms. It is often an unrecognised symptom.

Not being able to detect the smell of bananas, dill pickles and liquorice, as reported by the Parkinson’s Foundation in the US, has been identified as an early sign of Parkinson’s and should be investigated further.

There can be a change in the volume of your voice, becoming unusually softly spoken, which is caused by the changes in the function of muscles in your face, throat and mouth.

Other symptoms can include thrashing about in your sleep and acting out your dreams, constipation, excessive sweating and feeling dizzy on a regular basis.

These symptoms shouldn’t be passed off as ‘nothing’ as they may be linked to Parkinson’s. An early diagnosis, followed by the commencement of a treatment plan, means controlling symptoms more effectively.

If you, a family member or friend is exhibiting any of these symptoms, please speak to your doctor. You can also call the Parkinson’s Australia Infoline on 1800 644 189 (Monday to Friday, business hours).

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