Name: Paul Morris

Age: 43

Age and year of diagnosis: 32 (2014)

Occupation: Actuary (not working now)

Any immediate family/children: Husband and 5-year-old daughter

What do you do for work? Have you been able to continue working?

I was an actuary. I continued working full time for about 9 years after my diagnosis; for many of those years I didn’t feel that I had that many noticeable symptoms and those that I did were fairly well hidden by medication. I eventually stopped working when I was referred for DBS; by that point, my symptoms had become too difficult to manage, and medication wasn’t controlling them as well. I didn’t want to leave my job, and I still miss it sometimes.

What do you do for fun? Do you have any hobbies? Have you been able to continue these?

Lego, yoga, gardening and travel. At times these have been challenging, and fatigue means I need to be realistic about how much I can do. But nothing has really stopped me – it’s more about adjusting how I do things, in the same way that having a child changed how I travel. I don’t do adventurous things like swim with turtles anymore; now it’s more city breaks. We recently went to Copenhagen.

How do you keep fit?

I do most of my exercise at home. I take weekly online PD yoga and PD warrior classes – I often get feedback that I’m trying too hard in yoga! I also use a VR headset to make exercise more fun: table tennis, racquet sports and boxing. After boxing I usually feel completely exhausted; but the others are great for hand-eye coordination. I also use YouTube exercise videos and follow exercises recommended by a neuro-physiotherapist.

What do you do to relax?

I might go for a massage, play computer games, do a puzzle, go for a walk or read.

Do you have any tips on how to navigate medication as a new routine?

Before DBS, I relied heavily on medication and would fluctuate between being “off”, well medicated and dyskinetic several times a day. It was hard not knowing when I would be in each state, and I often rushed to fit everything into my “on” window: “should I shower now or make some food?” I never knew how long that functional window would last. I didn’t like feeling so dependent on medication.
Now, I try to manage how much I do, say no when I need to, and be kind to myself. Alarms and reminders don’t help me – I find them a bit oppressive. Over time, I’ve learned my own rhythms. I don’t forget medication because I can feel when my body needs it. I know what works for me at this point.

Where is the best place to seek help and advice about YOPD?

The Michael J. Fox Foundation and the Davis Phinney Foundation are great. Spotlight YOPD’s Facebook group is excellent as well. Peer support has become really important to me, and I’ve started a few groups with Parkinson’s UK—young onset, LGBTQIA+, and DBS groups. In-person groups weren’t very helpful early on, as I was usually the youngest by a long way, but I’ve now gathered a local group of YOPDers in their 40s.

My Parkinson’s Nurse is incredibly helpful. My neurologist responds well via email, and I’ve benefited from seeing a neuro-physiotherapist and an occupational therapist.

Can you recommend any books, podcasts or apps you have found helpful?

Movers and Shakers, 2 Parkies in a Pod, No Silver Bullet

Can you share with us your journey to diagnosis?

At the time, I was living and working in London and had just accepted a new job in Bristol. The diagnosis happened very quickly. My right hand had become slow and sluggish, so I went to my GP, who referred me straight to a neurologist. I had private healthcare through work, so everything moved efficiently.

The diagnosis itself is a blur. Most people remember the exact moment, but I couldn’t even recall which month it happened until I looked it up. I went to the appointment alone and was completely shocked—I hadn’t really considered that it might be something serious. From what I remember, the neurologist said he was fairly certain that it was YOPD at the first appointment, as my arm wasn’t swinging when I walked. He ordered an MRI, DAT scan, and other tests, which all happened quickly.

Because I was in the middle of moving, he didn’t refer me to an NHS neurologist, so it took a long time to see a new specialist. The new neurologist was sceptical because of my age and couldn’t access the previous DAT scan, so I had to repeat the entire testing process, including another DAT scan.

What’s cheered you or helped spur you on and process those difficult moments?

Being put forward for DBS was the turning point—it pushed me to really confront and adjust to my diagnosis. Until then, medication had allowed me to avoid thinking too much about how things might progress. I’m quite self-critical about how I handled it earlier on; I struggled to talk about it without becoming emotional.

Seeing a neuropsychologist who understood Parkinson’s made a huge difference. I had tried general mental health support before, but the lack of relevant context made it less effective. I also benefited from a group therapy trial supported by Parkinson’s UK, and I continue to access specialist counselling. Targeted wellbeing support is crucial, but it needs to be available at your own pace. My husband brought home leaflets early on, but it wasn’t the right time—I shoved them in a drawer and ignored them.

What was least expected for you after you received your diagnosis?

That life goes on. I’ve got married, started a family, and travelled a lot since being diagnosed. In the early years, I continued almost as normal. YOPD actually motivated me to succeed at work because I knew my career might be shorter than most.

There is still no cure. At diagnosis, I was given the impression that treatments would improve significantly within ten years. Unfortunately, that hasn’t really happened, though there have been some advances.

Were you surprised by your response to your diagnosis?

No. I had no motivation to do anything other than ignore it and carry on as if nothing had happened. I’m amazed by people who embrace the community right away. Now I’m so involved that it’s hard to believe—I never imagined volunteering could feel so meaningful.

How have your family and loved ones helped/or not helped/sought help when they needed it?

They’ve been very supportive, though at times I felt the need to hide symptoms from them. My husband is great at researching, and he and my parents come to appointments with me. I used to shield them more, but less so now. They’ve joined the Spotlight YOPD family forum—I told them they all had to!

Is (YOPD) something you talk about openly with people you meet?

Initially, no. Only family and a few close friends knew. I was just starting a new job and didn’t tell my employer because I didn’t want to be treated differently or judged. I don’t regret that decision; I doubt I would have had the same opportunities if they’d known, either because they would have worried about my capability or tried not to put pressure on me.

Now I’m more comfortable discussing it, though I usually only mention it when relevant. I went to an introductory Padel class recently and ended up showing the instructor my DBS chest scar! I haven’t told my daughter’s school or other parents because I worry about her getting the wrong messaging about PD.

Has living with YOPD given you any fresh perspectives on life and the people around you?

Yes. I get a strong sense of fulfilment from volunteering and helping others now—something I hadn’t done much of before.

What have you seen or watched lately that’s inspired you?

I’m inspired by everything happening within the Parkinson’s community. Maybe it’s because I’m more engaged now, but it feels like things are improving. There is far more support available than when I was diagnosed, and a great deal of research is underway.

Tell us why you chose to be part of the Your Voice campaign?

I think it’s important to share our stories—both for ourselves and for others. YOPD can feel very isolating, especially when you’re diagnosed as young as I was. I’m 11 years into my condition, and I hope sharing this will help someone else and raise awareness.

I guess I want to show people that there is no one right way to deal with a diagnosis, you have to do what feels right to you. Although, I would say that if you’re isolating yourself like I did, it can be a very lonely place and I’d urge you to seek out others in the community; they are the people who will really understand what you’re going through.

What does your photograph mean to you?

I was reflecting on my journey with YOPD. When the photo was taken, it had been just over a decade since my diagnosis, and I was thinking about how much life had changed—and how differently things turned out from what I once imagined.