YOUR voice: Wendy Noble

Diagnosed with Young Onset Parkinson’s at 51, Wendy shares how she continues working, performing music and travelling a decade later. Through research involvement, community support and careful routines, she reflects on adapting expectations, staying connected and choosing to live fully despite uncertainty.

Name: Wendy Noble
Age and year of diagnosis: 51 (2016)
Occupation: Property rental business
Any immediate family/children: Husband; two adult children

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

My husband and I run a property rentals business. I work flexibly from home, focusing on the operational, compliance and financial side of things. I tend to work in bursts of a couple of hours at a time. When I was first diagnosed, I never expected to still be working ten years later.

What do you do for fun? Do you have any hobbies? How has YOPD affected these?

I’m a cellist in three excellent local symphony orchestras, I play in a recorder group, and I’m also a pianist. There’s a big social scene around the orchestras — I’ve known many of them for more than twenty years.

My symptoms mainly affected my leg at first, but my dexterity is now impacted too. Before rehearsals, I need to load up with dopamine, and my husband drives me there and back as it uses up all my energy. Fatigue means I usually only play half a concert now, rather than the full performance.

I also love visiting the Royal Albert Hall for classical concerts. For my 60th birthday, I had a wonderful afternoon tea party where many of my orchestral friends came to celebrate. My friends played music all afternoon and then myself and 15 other cellists from my orchestras played a cello medley from Pirates of the Caribbean!

I also volunteer with medical students as part of the Patients as Educators Programme for Sheffield University. We support their learning, let them practice taking medical histories, talk to them about our symptoms, how it affects our lives and help them learn to recognise and assess YOPD. It’s incredibly rewarding.

How do you keep fit?

I’m not a natural exercise fan, but when I was first diagnosed, I joined a PD Warrior class. It was mainly much older people, and I found it quite lonely. Recently, I’ve joined a local class for people with Parkinson’s that feels much more suited to me.

I also enjoy getting out on my e-bike — though I’ve come off a couple of times, including once when I slid into the canal! I don’t think I have the leg strength to steady myself if I hit an uneven surface.

What do you do to relax?

Relaxing isn’t my strongest skill, but I enjoy spy thrillers and historical drama, playing my music and seeing friends.

Do you have a daily routine that helps you cope?

I prioritise my work and exercise in the morning, when I have the most physical energy and resilience. Generally, I try to focus on living well: good nutrition (though Parkinson’s has given me a sweet tooth!), careful medication management and staying socially connected with other people with YOPD.

I’m fairly organised, but I’ve become more prone to feeling emotionally or cognitively overwhelmed by tasks that need complex planning or lots of working memory — things like travelling or cooking Christmas dinner. I can get overwhelmed with things I used to manage easily.

Do you have any tips for navigating medication routines?

I take my medication strictly every three hours using an alarm, but I can also feel in my body when I need a fast-acting top-up. I’m terrified of being without my meds. When I go on holiday, I take triple what I need and keep it on me at all times — it never leaves my sight.

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

I’m quite stoical, but it can be really tough at times. Talking to people who understand makes a huge difference. I dip in and out of social media support, but it can be overwhelming if you’re not careful.

It took me a long time to find genuine support from people my age. Spotlight YOPD’s online forum helped, and meeting up with other people with YOPD has been life-changing. Since then, I’ve met more people around my age at support and exercise groups. It’s hard to describe how important that connection is; it means so much not to have to explain yourself.

Can you share your journey to diagnosis?

I was diagnosed with YOPD at 51, though I’d had symptoms for about a year before. Walking was my first problem. I had severe dystonia in my left foot — painful, difficult to weight bear — and I dragged it, often tripping. People commented that my gait looked unusual. My main motor symptoms are still rigidity, dystonia, and slowness although I get a leg tremor when I’m nervous.

I had previously had spinal surgery, which delayed diagnosis because the assumption was that my symptoms were back-related. A neurosurgeon diagnosed nerve root inflammation and ruled out Parkinson’s but referred me to a neurologist “just in case”. I arrived at that appointment thinking, “I don’t really need to be here”.

During the finger-tapping test, the neurologist kept saying “Faster!” and I genuinely thought he was joking — I was already going as fast as I could. After the exam, he said, “I’m sorry, but we have to think about the possibility of Parkinson’s.” I said, “I was told I didn’t have it.” He simply repeated that we needed to consider it. I asked how likely, out of ten. He said eight. My husband later said he thought the doctor was being kind — that he was sure but softening the blow.

It was a huge shock. I sobbed in the car and had my first panic attack. I knew enough from my biological sciences background to know that I could be severely disabled at some point and I imagined that being soon. The uncertainty — not knowing how fast it would progress — was the hardest part.

What has helped you through the difficult moments?

At first, my way of coping was to immerse myself in research. Having worked for 20 years in pharmaceuticals, I wanted to understand what was happening at a cellular level and catch up with the evidence base. It was both cathartic and sobering. Parkinson’s research was underfunded and not an NHS priority; it felt like there was a mountain to climb.

That’s why I got involved in clinical research early. I volunteered for wearables testing, biological studies and drug trials. I spoke to friends in healthcare — like a diabetes nurse specialist who explained research into repurposing diabetes drugs. I even contacted lead investigators myself to offer participation. It was empowering and gave me hope — I felt like I was contributing to filling gaps in knowledge. At my last appointment, I volunteered for the new multi-arm, multi-stage trial which aims to speed up results.

My family and I also threw ourselves into fundraising for Parkinson’s UK, raising over £2,000 in the first year and recently over £1500 at my 60th birthday tea party. Friends and family continue to be central to helping me live the life I want.

These days, our focus is less on YOPD itself and more on living fully. After turning 60, I was determined to celebrate — we had a wonderful three-generation holiday, and I finally visited Niagara Falls. I was nervous about the long-haul travel and managing medication across time zones but – with advice from my Parkinson’s nurse – we managed it better than expected.

What has been the biggest surprise since your diagnosis?

The past ten years have been very different from what I feared. I never imagined I’d still be playing instruments a decade later. I’m amazed by what I can still do with the help of medication and my very supportive husband — working, contributing, performing. It’s transformed my outlook; I’m much more positive now than when I was diagnosed.

Is YOPD something you talk about openly with others?

I was open with friends and family from day one and took part in a big campaign — Unite for Parkinson’s — which shared honest, positive stories about life with Parkinson’s.

These days, if someone stares at me because of how I’m moving — and they do — I’ll say, “Nothing to worry about; it’s just Parkinson’s!” Sometimes I even approach people and reassure them. Becoming self-conscious only makes symptoms worse.

I’m very open in situations where help might be useful, like travelling. I use a foldable mobility scooter — nicknamed R2D2 — which makes a huge difference. I generally find people kind and helpful.

How have your family supported you?

My children were in their late teens when I was diagnosed, and it was hard on them. They felt immediate anxiety about progression — and so did I.

It’s been a big adjustment for my husband too. Our household ran along quite stereotypical gender roles, but now he often cooks and does a big food shop. He’s really stepped up, driving me to evening rehearsals, and he’s trying hard to be patient as I slow down.

My parents have had their own health challenges, and I’m an only child, so we support them as best we can. It’s been painful for them to see me struggle at times. But from the outset, my whole family has said “Whatever you need…” They’ve all been brilliant.

Has living with YOPD given you new perspectives?

Absolutely. I’ve learned far more about mindfulness, acceptance and my own thinking. I used to be relentlessly driven and focused on the next thing. Now I grasp the moment more and have a more compassionate relationship with my YOPD self. I don’t put off experiences I want to have. I recently climbed into the cockpit of a Vulcan bomber I still don’t know how, but I was determined to experience it!

I feel much more gratitude for my family and my friends. I take the time to prioritise the people and experiences that bring me joy and I’m surrounding myself with my YOPD support tribe. Living well with this condition has opened doors to new support groups, new friendships, bonds and new advocacy work.

The “unwelcome companion” continues to do its best to disrupt my life. I have no choice but to accept its presence, reluctantly accommodate it, suppress the symptoms with well-timed medication and constantly adapt my life to minimise its impact, making sure I celebrate the small victories and wins!