Family history: I have Parkinson's, like my mum and nan before me

Donna was told she had Parkinson’s in her early forties – the third woman in three generations of her family to receive the diagnosis. Here she shares her story.

Parkinson’s has been a constant in Donna’s life since her early teens, when her nan was diagnosed with the condition in the early 1980s. Then, in 1998, 6 months after Donna ran the London Marathon for Parkinson’s UK in memory of her nan, her mum, who was in her late sixties, was diagnosed.

At the time, Donna’s mum’s specialist dismissed any genetic link. “If Mum had any concerns that I might get Parkinson’s, she certainly didn’t share them with me, and I wasn’t worried at all,” Donna explains. “I just thought it was bad luck.”
 

History repeating

But in 2014, 25 years after her mum was diagnosed, Donna noticed her left hand was shaking. “I remember it vividly,” says Donna. “My then partner and I and our 1-year old daughter, Beau, had hired a cottage on the Isle of Wight with a group of friends. I was walking along the beach and realised my hand was shaking.

“I was concerned, but at the time, I was undergoing IVF and had been taking vitamins to boost my fertility. When I got back to the cottage, I googled the
vitamins and found a side effect of the pills was shaking.” Donna stopped taking them, but her hand continued to shake. “I went back to the IVF clinic, but they just looked at me blankly and said they’d never heard of anyone else who had experienced that symptom. In the back of my mind. I knew I needed to see my GP, but I was in complete denial. I just kept saying to myself, ‘I am too young, I am too fit. This is not Parkinson’s.’”

Eventually, Donna was referred to a neurologist. At the appointment, Donna was all too familiar with what the specialist was looking for. “I knew everything he was asking me to do related to Parkinson’s because I’d been to all the appointments with my mum,” Donna remembers. She jokes that her strategy was to try and cheat the system. “I was determined they were not going to pin Parkinson’s on me, so I walked the very best I could, moved the best I could – I wanted to basically outsmart the tests!”

At the end of the examination, Donna was told she probably had essential tremor. But when she received a copy of the letter her neurologist had sent to her GP, he said he suspected parkinsonism. “I just kept reading that line over and over again. A follow-up appointment had been arranged for 6 months time, but I didn’t go back for a year and a half. In the meantime the shaking in my arm got worse and worse.”

I was convinced everyone had it wrong and that Parkinson’s was just an easy diagnosis to label me with because of my mum and my nan.

Accepting the diagnosis

“When I was finally told I had Parkinson’s, the first question I asked was: ‘But what about my daughter?’” Donna’s consultant was aware of her family history, but his answer was pragmatic. “He said that genetic testing could identify if Beau has any genes that could increase her risk of developing the condition, but it still does not mean she will definitely go on to develop Parkinson’s. And even if we did learn she has a ‘faulty’ gene, there is currently no cure, so it’s not something I should beat myself up about.

“I still left the appointment a sobbing mess. It was dreadful. I spent a long time just walking round in circles in the car park, just not knowing what to do. I was convinced everyone had it wrong and that Parkinson’s was just an easy diagnosis to label me with because of my mum and my nan.”

Donna explains that it was when she met with her Parkinson’s nurse 2 years later that she finally began to come to terms with the diagnosis. “We sat down and it was like she was in my head. She knew exactly what I had been going through and how I may have been feeling. It’s probably only in the last year though that I have really accepted I have Parkinson’s.”

The impact of experience

Watching her mum live with the condition has had a huge impact on Donna and how she has chosen to manage her symptoms. “I was very anti-drugs at the beginning. I feel very strongly that my mum was medicated too soon and she experienced devastating side effects. She used to have hallucinations. She shook violently and the more stressed she got, the more she would shake. She sweated profusely through her clothes, which caused skin problems. It was very hard.”

Recently, Donna has started taking medication after she was offered an opportunity to get involved with a research project. She describes this decision as ‘giving in’, and that there have been issues along the way. “The first drug I was put on gave me awful anxiety, something I had never had before. I was taken off that, but the new drug made my right hand shake.” Donna is now on a low dose of levodopa and can see an improvement. “After 2 weeks, I did start to notice a difference. I still shake, but the pain I get from the dystonia is definitely better.”

Seeing her mum deteriorate has affected Donna. “I do worry I will deteriorate as quickly as my mum did. She developed dementia. She could also be violent at times, which was completely out of character for her. She spent the last 6 years of her life in a nursing home with a feeding tube, not knowing what was going on.” She adds: “My Parkinson’s nurse always reminds me that everyone is different and I do try to be positive, but I am also a realist. Sometimes it’s like I have a little devil on my shoulder that says, ‘Oh yes, but you’ve seen what can happen.’”

So how does Donna feel when she thinks about Beau and her future health?
“I know she’s only 5, but when I look at her, the thought is always there that she may be one day diagnosed with Parkinson’s. I constantly look for reassurance she’s OK. For example, I now know losing your sense of smell can be a sign of Parkinson’s, so when Beau said the other day, ‘Oooh this smells nice’, I am relieved.”

If there’s one thing that my long and varied Parkinson’s journey has taught me, is not to mess around with life – it’s just too short.

Looking forward

There’s of course no denying the impact Parkinson’s has had on Donna and her family, but today Donna can point to the lessons she’s learned and how these are helping her to embrace life. In 2017, she jumped at the opportunity to buy a children’s shoe shop in Tunbridge Wells.

“To begin with, I would get terribly embarrassed if I started shaking when
I was talking to customers,” she explains. “Then one day I decided to dye my blonde hair purple – and it gave birth to a monster! It’s given me loads of confidence. Kids will often ask about my shaking and their parents can get embarrassed, but I’m very open with them. I make a big fuss of all the kids that come in and they love coming back. Now my Parkinson’s is just an accepted part of their visit to the lady with the purple hair!”

Donna also focuses on exercise and diet. “I feel so energized after I’ve finished an exercise class – it’s better than any drug I take. I also try to stick to a sugar-free diet. I know that if I have a piece of chocolate or a glass of wine, my shaking will be much worse the next day. But sometimes it’s worth it. If there’s one thing that my long and varied Parkinson’s journey has taught me, is not to mess around with life – it’s just too short.”

Read more about if Parkinson's runs in families

Hear more from Donna, talking about buying a business and how she manages her Parkinson's at work.