Name: Gina Walter

Age: 48

Year of diagnosis: (2021)

Occupation: Data and Operations Manager at a secondary school

Any immediate family/children: Three children (young adults) and husband who works abroad

Tell me about the portrait experience.

The experience was lovely. It was nice to be the focus of attention for a day or so! My photo was taken by the piano – I’ve played the piano since I was seven. My playing has been affected by my Parkinson’s, but I do try and play whenever I can. That was the advice that my neurologist gave me.”

Tell us about your diagnosis experience

I first thought I had Parkinson’s back in 2020 at the beginning of the COVID pandemic. My older brother also has Parkinson’s, so I kind of knew what I had. To be completely honest, the journey to diagnosis was awful. The doctor dismissed it at first, so I started on “Dr. Google”, which was the worst thing to do. I lived with the thought that I think I know what I’ve got, and it was torment. When the neurologist eventually did say, yes, I think you’re right – you have Parkinson’s – it was kind of a relief in some ways.”

Many people with YOPD struggle to get diagnosed, do you have any practical advice?

After waiting 18 months for a diagnosis, I’d say stay away from the internet and forums.  A little knowledge is dangerous and can send you reeling.  Keep pushing for yourself and speak to the right people. You are the most important person for you, aren’t you?”

How did you deal with your diagnosis?

It took a couple of years just get to grips with it. I grieved for the future I now felt I wasn’t going to have; there were some very dark days.  But underneath it all, I’m a determined fighter.  I threw myself into proper fact finding and doing things that were good for me. When I was diagnosed, the consultant said the best thing you can do for yourself is exercise. I came home, and literally I nearly killed myself for the first six weeks. I went completely crazy and wore myself into the ground. After a while I found a good middle ground.

A friend and I joined something called Bounce, which is trampoline-based exercise – we loved it! But then after six months the class closed. I thought, do you know what? I’m going to do that myself. So, I trained to become a bounce instructor and so now I give two classes a week, which I’ve been doing for a year, bouncing!

I still have the odd day that I feel sorry for myself – but you’ve got to allow yourself those days. Don’t compare yourself to other people who may have other troubles and feel that you can’t be down because your issues aren’t as bad maybe, because what you’re going through is real for you. Sometimes you do have to be a little bit light-hearted about it – I could be run over by a bus tomorrow! I guess there’s a little bit of denial in there. Just refusal to let it in.”

How has family life been—telling the kids, managing parenting?

The adults in my family knew I thought I had Parkinson’s.  I worried about telling my children because I thought it would shatter them. I gathered them all together and I told them, but I said, “I’m not going to let this get me – I’m still mum, I’ll still shout at you to pick your washing up off the floor and I’m determined to beat this”. Then the youngest just turned around and asked, “OK, What’s for tea?”.
I think it’s just important to be honest with your family and kind of be positive with them.”

Have you connected with other people with Parkinson’s?

I started a Facebook group when I was first diagnosed. We set up a little group and met a couple of times. I was one of the people who championed for a group for younger people for our area with Parkinson’s UK and now we have that!  There are about 30 people in Reading, and we have monthly meet ups, and walks. I don’t make it along there as often as I should, but it’s good to know there are like-minded people out there who understand and we share information and experiences.”

Any final reflections you’d like to leave others with?

It’s been quite emotional! Actually, bizarrely Parkinson’s has brought me a lot. It’s improved my fitness. It’s brought me a love of flowers and now I have an allotment. It’s brought me people that I would never have met. It’s made me run half marathons. If you treat it the right way, it can work for you. My best advice would be to try not to go to the future, just look after yourself and live now. Try to work out the things that work for you and don’t compare yourself to others, don’t assume that what happens to one person is going to happen to you!”
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