A mum diagnosed with Parkinson's at 44 has revealed the surprising symptoms she experienced in the years leading up to her diagnosis.
The unusual symptoms include a loss of smell, obsessive compulsive disorder (OCD) when it comes to decorating, and an intolerance to sugar, beer and caffeine.
According to Donna Marshall, 54, from Tunbridge Wells in Kent, the lesser-known side effects from the disease started when she was just 26, continuing today with her spending thousands on extravagant Halloween displays.
Parkinson's – a condition in which parts of the brain become progressively damaged over many years – is more commonly associated with shaking and stiffness. But the loss of smell was the first thing Marshall says she noticed years before her actual diagnosis.
"The sense of smell went first of all, I was about 26," the corporate businessperson recalls.
"I didn’t think very much of it, and with that you get a lack of taste in food."
Loss or reduction of smell (known as anosmia) is common in Parkinson’s, with up to 95% of people experiencing it to some degree, according to Parkinson's UK.
Other more apparent symptoms didn't start to show for another 16 years, when she was out walking on New Year's Eve and noticed her hand shaking.
"I was walking along the beach on the Isle of Wight," she explains. "I looked down at my hand and it was shaking, I wondered why that was. Obviously now I know, it was Parkinson's."
But one of the more surprising symptoms Marshall says she has had to learn to deal with is an intolerance to stimulants.
"Stimulants are no good for me, so any caffeine, sugar, obviously that’s in beer and I love my beer," she explains.
"Anything like that will stimulate and heighten Parkinson’s."
Perhaps one of the least known possible impacts of the disease is OCD, which can be a side effect of the medication used to alleviate it.
Marshall explains since being diagnosed, she's met a number of people who struggle with similar symptoms of the condition too.
"There's the gambling addiction, the shopping addiction and the sexual addiction, and none of it is very fun," she says.
Marshall's own OCD took over in full force last Halloween, when she decided to turn her garden into a haunted attraction.
"Normally people would just put a pumpkin out. I went the full hog," she explains.
"I spent thousands of pounds on professional dancers, I converted the front garden into a huge, great big graveyard.
"It was fantastic, all the kids loved it, but I didn't need to go that far and that's what it [OCD] does unfortunately."
Parkinson's UK points out that not everyone on medication for the disease will experience impulsive and compulsive behaviour, so it shouldn't put anyone off the medication if they need it. But if you do notice any changes, speak to your healthcare professional for advice straight away.
Marshall's own mother, Margaret, also had Parkinson's and sadly passed away at 80 after six challenging years.
"They fed her through a feeding tube, which looking back is the worst thing that could have happened to her," she recalls.
"She remained alive only through medical intervention, and then the decision to take that tube away sat on us as a family, which is just the worst thing anyone had to do."
But Marshall is determined to make sure her own daughter, Beau, nine, doesn't see the debilitating side of the disease as much.
"I wake up early and take my pills on the sofa watching TV until I'm ready for business as normal," she says.
Perhaps the worst symptom Marshall says she suffers from is Dystonia – a range of movement disorders that cause muscle spasms and contraction – that drastically affects her daily life.
The spams can be painful and can sometimes last for hours. "The worst part of having Parkinson’s for me is the Dystonia because my foot cramps up and then my back cramps up," she explains.
"I can’t walk at all, I can’t even put one foot in front of the other. The hardest thing for me is not being able to follow a normal lifestyle. So just normal everyday things that you would do is difficult for someone with Parkinson's.
"Just walking up the stairs, just making a cup of tea, feeding yourself, all those things."
Dystonia may be related to Parkinson's (it's more common in people who are diagnosed with the disease at a younger age), or you can have it separately.
Marshall had deep brain stimulation surgery only last week, which includes the placement of a device in her brain that targets certain areas of the brain to help control abnormal brain activity. The aim is that the device will ease the pain of some of her symptoms, including Dystonia.
Marshall's main piece of advice for others diagnosed with Parkinson's at a young age is to try and find others affected by the disease to talk to – you are not alone.
"There's lots of people on Facebook, there's lots of advice out there.
"I think the best thing I did was connecting with people like me, who have young onset Parkinson's, because it's a different animal to when you're older, it manifests itself in a different way."
For more information on the disease, see our useful guide on what exactly Parkinson's is and the main signs and symptoms.
For support, you can also contact Parkinson's UK on 0808 800 0303 or email on email@example.com.
Additional reporting SWNS.
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