Brave women under 50 reveal what it's like living with young-onset Parkinson's
29th November 2020

IT might not be a terminal diagnosis but, for those living with Parkinson’s, it can feel like one.

The incurable condition can cause rigidity, tremors and palsy as well as mental health issues and loss of bladder and bowel control.

The most common causes of death for people with Parkinson’s are falls and pneumonia.

More than 145,500 people are currently diagnosed with the disease in the UK — and that figure is set to rise to almost 170,000 by 2025.

Julia Gracey, Darsha Patel, Emma Lawton and Mel Richardson are among the growing number of women living with Parkinson’s and here they talk about their experiences.

Strikingly, they were all under 50 when they started suffering, which puts them among almost 2,000 Brits diagnosed with young-onset Parkinson’s.

Claire Bale, Head of Research Communications and Engagement at the charity Parkinson’s UK, tells Fabulous: “The condition can affect anyone. It doesn’t discriminate based on age, ethnicity or gender.

“It affects millions of women across the world, young and old, but for too long their stories and experiences have been less well represented and researched than those of their male counterparts.”

Julia, Darsha, Emma and Mel may have different symptoms but one thing they have in common is that they all mistook the early warning signs for stress.

Here, they tell how the disease has worn away at their self-confidence and changed their lives immeasurably.

But Parkinson UK’s Claire hopes that by speaking out, they are paving the way for a better future for others.

She says: “We are beginning to understand that the female experience of the condition may differ in a range of ways.

“Through our research, if we can get a better understanding of what causes Parkinson’s, this will empower us to find new and better treatments for women like Emma, Mel, Darsha and Julia.

"Together we can improve the lives of everyone affected by Parkinson’s.”

'I feel like an old lady next to my fit husband'

DARSHA Patel believed the pins and needles in her left arm were nothing more than a bout of repetitive strain injury.

Now, eight years on, Darsha, 57, believes more must be done to educate people about the early indications of Parkinson’s.

The retired sixth-form worker has a left-side tremor, which means that she needs a cane to walk.

Her condition has also led her to cut her hair short, to make it easier for her to deal with.

Parkinson’s has knocked her confidence to the point where she is now terrified by the thought of celebrating the upcoming wedding of her son, Amiel, 29.

Darsha, from Harrow, North West London, says: “As an Indian mother of the groom, I’m expected to look glamorous.

“I used to be able to wear whatever I wanted, including heels, but now I walk with a stoop.

“I’ve fallen recently, too, and have been worrying for months about falling at the wedding.

“I can’t buy fashionable clothes, because one of the effects (of my condition) is bladder weakness and I have to be in clothes I can get off quickly.

“I feel betrayed by my body every time I look in the mirror.

“My husband Jay always takes care of himself and keeps fit and well, and I worry that I look like an old lady next to him.

“The medication that I’m on gives me dyskinesia too – which is when I move involuntarily –  and that can be really embarrassing when it happens when I am out and about.

“If more people knew about Parkinson’s, people with it would feel more confident taking their place in their communities.”

'Half my body feels like it doesn't belong to me'

WHEN Mel Richardson struggled to hold a pen, she put it down to a stiff shoulder.

Coupled with fatigue, sleeplessness, struggling to concentrate and forgetfulness, she thought it was likely to be just stress-related.

But in February last year, after two years of investigations and Googling her symptoms, the retired nurse was diagnosed with Parkinson’s.

Mel, 46, says: “On the outside if you met me, you would not know that I had anything at all wrong with me.

“But inside I live in constant pain.

“I feel like half of my body feels normal, like the ‘old’ Mel and the other half feels like it doesn’t belong to me, and I know it will never feel ‘normal’ again.

“I don’t function the way I used to but that won’t stop me from doing what I want.”

Mel, from Nottingham, now takes longer to do things such as pack a shopping bag or get her card out of her purse.

But she tries not to think too far ahead into the future.

She says: “There’s not much point, I don’t know what will happen, so why should I worry about it?

“I do get irritated sometimes but stress makes the symptoms of Parkinson’s worse so if I worried too much and got too anxious it wouldn’t help.”

Mel’s diagnosis has taught her to live in the here and now and enjoy time with her son Dylan, 23, and stepkids Millie, 13, and Tom, 21.

She adds: “I never used to make time for myself but now I do the things I enjoy. I don’t take anything for granted.”

'I'd like a relationship but I've been catfished 30 times'

WHEN graphic designer Emma Lawton began working on changes to the Parkinson’s UK website she could never have imagined she would end up as a patient – at the age of just 29. But she did.

Emma, now 37, had noticed her right hand would cramp but she blamed it on constantly using a computer mouse at work.

She recalls: “I just put it down to working hard. I presumed it would go at some point, although it was getting stiffer and I was getting more slap-dash with how I used the mouse. ”

After finally seeing a GP two months later, she was diagnosed with Parkinson’s.

Londoner Emma, co-founder of tech start-up More Human, says the condition has hampered her dating life – but she keeps on trying.

She says: “On my dating profile, I am honest about my Parkinson’s and that’s fascinating for some people.

“I’d like a relationship but I’ve been catfished around 30 times this year – knowing who is real and who is fake is daunting.”

Shortly after her diagnosis, Emma started to avoid seeing friends and stopped wearing bright colours.

But she says: “After a few months, I realised the Parkinson’s wasn’t limiting me, I was limiting myself. I soon dyed my hair bright pink and it’s become a signature for me.

“Parkinson’s is a hard condition to live with and I can’t hold my head up straight, so wear a neck brace. But this may or may not be linked to the condition – it’s being investigated.

“I won’t let the diagnosis hold me back, though. I still wear what I want –  but might have to commute with my dress unzipped at the back under my jacket and ask a colleague to zip it up for me when I get to work.

“My hands shake less at night, so it’s not unusual for me to wake up in the middle of the night to do my eyeliner before work.

“I like to wear sequins – when I am giving talks at work, up on stage, the sequins catch the lights and I look like a giant glitter ball as I tremor. I have to own my condition and not let it own me, and I’m more confident with it than I was before I was diagnosed.

“People don’t think someone like me can get Parkinson’s but that’s why it’s important to educate them.”

'I was trying for a baby when I was told I had it'

WHEN Julia Gracey first began to feel tremors in her leg in her thirties, she noticed it only happened when she was upset or excited.

The 55-year-old retired nurse, who lives in Poole, Dorset, with husband Mark, says: “I didn’t think it would be Parkinson’s. In my head, I was too young even to consider it.”

She ignored the tremors for a few years before eventually getting checked out in 2000, at the age of 35.

She says: “My son David was ten and my daughter Amelia eight, and I was trying for another baby with Mark when I was told the tremors were Parkinson’s.

“I had nursed people with the condition so knew what it was.

“I went into a deep mourning and depression for over a year.

“Your body betrays you with this condition and robs you of confidence. I used to be so glamorous.”

Where once Julia was complimented on her appearance, now strangers would stop and stare.

She adds: “With the tremors and stutter I’ve developed, people can think I’m drunk. It’s incredibly hurtful and leaves me really embarrassed.

“When my tremors are bad, they make me bounce up and down, too, and it can look like I need the bathroom.

“I was at a wedding a few years ago and had gone to the bar to get a glass of champagne when the girl serving me asked if I needed the toilet.

“No one presumes that I might have a medical condition.

“I was in B&Q a little while ago with Amelia and was feeling tired, and my legs were shuffling.

“I told her I was going to sit down and would meet her at the till, and a couple nearby said: ‘Thank goodness we don’t have to listen to her shuffling and not picking her feet up’.”

While Julia can still apply her make-up, she knows there will come a time when that is not possible.

She adds: “I can’t put a bra on myself any more. I have to make fashion choices now based on what’s comfortable, or what I can get out of quickly if I need the toilet.

“When talking about Parkinson’s, people tend to think of older men in wheelchairs, but the diagnosis doesn’t change who we are or how we want to look.”

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