Name: Ellie Finch

Age and year of diagnosis: 29 (2013)

Occupation: Translator (not working now)

Any immediate family/children: Husband, two children (11 and 9)

Can you share your journey to diagnosis?

It started with a tremor in my little finger a year or two before my diagnosis. Then, while training for the Great North Run, my foot began behaving strangely—my ankle would suddenly go over on itself after only a few minutes. A physiotherapist couldn’t explain it, and my GP initially explored other causes, including thyroid issues. Beta blockers were suggested but ruled out because I’m asthmatic.

Looking back, I’d had symptoms for years—significant fatigue in my twenties, sleep problems, and REM sleep behaviour disorder. Eventually, I was in tears in front of my GP, and that finally led to a neurology referral. From first seeing my GP to diagnosis took around 18 months.

By the time I was diagnosed, it wasn’t a surprise. In fact, Parkinson’s felt like the “best” of several possibilities—not good, but not the worst either.

At first, I was determined to carry on as normal. I had young children, was working hard, and was even promoted. But eventually the condition forced me to slow down, particularly once dyskinesia developed about five years in.

It also took me time to realise the importance of a good care team—and that you can advocate for that. I now have an excellent Parkinson’s nurse, which has made a huge difference.

Have you been able to continue working?

I used to be the main earner in our household, working as a translator and project manager in market research. Around the time of my diagnosis, I was already considering freelancing, and pregnancy gave me the opportunity to move to working from home.

At the time, I didn’t fully recognise how much Parkinson’s was affecting my work—I was juggling pregnancy, fatigue, and ulcerative colitis, and it was hard to disentangle what was causing what. Typing and transcribing were becoming increasingly difficult, though, to the point where I would type for hours with one hand, determined to struggle on. I learnt quickly that stress has a very negative impact on dopamine supplies, but at first felt there was nothing I could do about it.

I’m no longer working, which is a relief—just thinking about project management now makes my symptoms worse. But financially, it’s been a difficult adjustment. Moving from being the breadwinner to relying on benefits has been hard, both practically and emotionally.

Navigating the system has also been stressful. I’ve had repeated assessments for Universal Credit, despite nothing improving. Securing enhanced PIP took a long time, but it’s made a real difference in being able to afford things that support my wellbeing. I used to feel guilty spending money on things like exercise classes or relaxation therapies; now I see them as essential to my wellbeing.

What has been your experience with treatments?

I developed an impulse control disorder in 2015 after starting the dopamine agonist Ropinirole, which led to compulsive gambling. It’s still difficult to talk about, even though it was over a decade ago. I felt ashamed and out of control.

Eventually, I told my husband. It was a very dark period, but we got through it. My neurologist confirmed it wasn’t my fault, but the emotional and financial impact was significant.

Recently, I’ve talked about this period of my life with 2 Parkies in a Pod.

I’ve also had deep brain stimulation (DBS) and my experience has been anything but straightforward. The first procedure, with the headframe fitted while I was awake, was extremely traumatic. When I needed a second procedure due to infection, the full operation, including this part, was done under GA and with much better psychological support, which made a huge difference. My current system remains complex, and I’m awaiting further news on next steps.

What has helped you through difficult moments?

Talking therapy over the past couple of years has been very helpful. I’m also on antidepressants now, although I’m hoping this won’t be a long-term solution.

More than anything, it’s been friends. Having people around me—especially others with Parkinson’s—has been invaluable. Being with people who understand without explanation makes everything easier. More recently, being part of the Parkinson’s Pioneers, a women’s walking football community set up by Annie Booth, has been invaluable to me.

When I was first diagnosed, YOPD felt very isolating. That’s changed a lot; the sense of community is much stronger now.

Are you open about having YOPD?

I told close family, friends and my employer straight away. In general, I’m quite open about it—it helps people understand what’s going on.

In 2019, I did a BBC interview for World Parkinson’s Day, which has also made it easier to signpost people to something rather than always explaining it myself.

Both my children were born after my diagnosis, so they’ve never known me without Parkinson’s. I’ve never hidden it from them, but there’s never been a single “big conversation”—it’s just part of everyday life. They understand it better than many adults.

What impact has YOPD had on your hobbies and daily activities?

I still try to stay active. I play walking football every week with my local (non-PD) walking football friends, Farnham Town Flares, and travel to Solihull regularly to train with the Pioneers and women’s Parkinson’s England squad, which I was thrilled to be selected for, despite only playing for less than a year. This does come at a cost; it is difficult to manage medications around exercise, and I can experience severe fatigue in the days that follow.

I also enjoy table tennis, going for walks with friends, and singing in a choir. I’m an alto and hoping to get involved with the Movers and Shakers campaign on the Voice at some point this year.

I’m much better now at saying no to things I don’t want to do or can’t manage. Parkinson’s is a nuisance, but I try to keep going and focus on what matters. I can’t really imagine life any differently now—and above all, I focus on being a mum.