Myths about Parkinson's disease you shouldn't believe, according to experts

From Jeremy Paxman and Michael J. Fox to Hollyoaks' Lysette Anthony, celebrities sharing their experiences of Parkinson's in recent years has helped to shine more of a spotlight on the condition.

That said, we still have a way to go with improving our understanding of the fastest growing neurological condition in the world, affecting one in 37 people in the UK. So, let this Parkinson's Awareness Month be the perfect reminder to expand your knowledge on what you think you might know about the multi-dimensional disease – e.g, no, it doesn't always mean people are incapable or lose their independence.

"Living with Parkinson’s disease isn’t easy, and those diagnosed face many challenges in their daily lives," says Hannah Karim, senior care expert manager at Lottie. However, she adds: "One of the biggest obstacles is dealing with the misconceptions and misunderstandings about Parkinson’s, as everyone experiences symptoms differently.

"Stereotypes and myths can have harmful effects on those living with Parkinson’s disease. Incorrect beliefs about the capabilities of those with this condition can be extremely harmful for their quality of life, too. They may limit their engagement in activities, create a communication barrier, and affect how they feel about themselves."

So, here are Karim's five Parkinson's myths to avoid, on which we also consult Dr Babak Ashrafi of Superdrug Online Doctor about for further insight.

Parkinson's myths debunked

Myth 1: 'Only older adults are affected by Parkinson’s disease'

"Whilst Parkinson's disease is more commonly diagnosed in older adults over the age of 60, it can affect people of any age, including younger adults. This misconception can delay diagnosis and treatment in younger adults that experience initial signs and symptoms of Parkinson’s," says Karim.

"Most young-onset Parkinson's symptoms are first identified and diagnosed between the ages of 21-40."

While Dr Babak also points out Parkinson's is more commonly diagnosed in older adults, and the risk of developing it increases with age, he too reminds us it can affect people of all ages. "There are cases where younger individuals, even children, can be affected [though this is rare]".

Karim adds, "No matter your age, it's important to visit your doctor if you start to experience unusual symptoms or develop any new health concerns."

Myth 2: 'Everyone living with Parkinson’s experiences the same symptoms'

"Those Living with Parkinson’s will experience symptoms, progression of the disease and response to treatment that are unique to them. Some people living with the condition may experience relatively mild symptoms that progress slowly over many years, while others may experience more rapid progression," says Karim.

"When caring for someone with Parkinson’s it’s important to understand their specific care needs to help them to live as independently as possible."

Myth 3: 'Parkinson’s disease only affects movement'

"Parkinson’s is progressive neurological condition; the most common symptoms reported by those living with the condition are uncontrollable shaking, difficulty moving, and muscle stiffness," explains Karim.

"Each person living with Parkinson’s will experience different symptoms and some people can experience non-motor symptoms, such as cognitive changes, like depression and anxiety, and changes to sleeping cycles. Some might experience physical symptoms such as problems with blood pressure regulation."

Dr Babak adds, "As Parkinson's Disease impacts the central nervous system, men with Parkinson's Disease may find themselves unable to attain or maintain an erection, with the muscles, fatigue and med side effects further lending themselves to erectile dysfunction.

"There is also ongoing research into a connection between the menopause and Parkinson’s disease, with some studies suggesting that hormonal changes associated with menopause may influence the risk of developing Parkinson's disease."

Myth 4: 'You can’t live independently when you have Parkinson’s disease'

One of the most harmful stereotypes around Parkinson's can be to assume those with the condition must lose their independence. "While Parkinson's may present challenges, it does not mean losing the ability to live independently," says Karim.

"Many people with Parkinson's disease continue to live independently for years after diagnosis. Through managing symptoms with medication, therapy, and small lifestyle changes, those living with Parkinson's can continue to live a fulfilled and independent life."

Expanding on this, Dr Babak agrees that "Many people with Parkinson's disease can live independently, especially in the early stages of the disease" and that with proper management, "individuals with Parkinson's can maintain a good quality of life and continue to engage in daily activities".

However, he acknowledges, "As the disease progresses, some individuals may require more assistance with certain tasks or activities of daily living. It's essential for people with Parkinson's disease to work closely with their healthcare team to develop a comprehensive care plan that addresses their specific needs and supports their independence for as long as possible.

|Additionally, support from family, friends, and community resources can also play a significant role in helping individuals with Parkinson's live independently."

Myth 5: 'It's appropriate to describe those with Parkinson’s as 'suffering''

This is a key example of where language matters.

"The way we communicate and talk about Parkinson’s has a direct effect on how people living with this condition feel. Using phrases like 'suffering from Parkinson's' or 'a victim of dementia' is negative and can have a profound impact on the person with Parkinson's, as well as their loved ones," says Karim.

"Instead, use respectful language to show that Parkinson’s isn’t a defining aspect in their life. For example, say ‘a person with Parkinson’s disease’ or 'living with Parkinson’s'."

Dr Babak agrees. "Describing individuals with Parkinson's disease as 'suffering' can be problematic because it may not accurately reflect their experiences or perspectives. While Parkinson's disease can present significant challenges and difficulties, many individuals with the condition prefer to focus on their strengths, abilities, and the aspects of life that bring them joy and fulfilment."

He too suggests using more empowering language such as 'living with' or 'managing' Parkinson's. "It acknowledges that while Parkinson's may impact their lives, it does not define them solely by their struggles or limitations," he says.

Though if in doubt, it can also be thoughtful to ask the individual if they have a preference of language.

For more information, visit the NHS website's section on Parkinson's disease. For support, visit the Parkinson's UK website or contact them on the free helpline 0808 800 0303 or email on hello@parkinsons.org.uk.

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