Name: Rebecca Jones

Age: 48

Age and year of diagnosis: 41 (2018)

Occupation: Ill Health Retired from the NHS

Any immediate family/children: Husband, 11-year-old son and 10-year-old daughter. I also have an identical twin sister who I am extremely close to

My Daily Life with YOPD

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

For 15 years I loved my work as an NHS Governance Team Leader. After my diagnosis, I managed to continue for another five years, helped by supportive colleagues and the shift to home-working. However, eventually the demands of my role finally caught up with my body faster than I had expected or wanted it to. I was trying to keep my health, my job and my young family going, it was just too much— something had to give.

Choosing ill-health retirement was a tough decision. I had never taken a sick day since my diagnosis, and I really valued and enjoyed the work I did, so accepting that my body could not keep pace was painful. But in the end, I chose my family and my wellbeing, they had to be my priority

I miss the job and the purpose it gave me, but I’m grateful I left on a high, with a legacy of work I’m proud of. Crucially, I now have a better quality of life. Having this condition shouldn’t require walking away from a career — but for many people with YOPD, especially women, it often does.

What do you do for fun? Do you have any hobbies? 

Since retiring, I live at a pace that lets me manage my symptoms instead of fighting them. I rediscovered my love of abstract painting, and YOPD has pushed me creatively; I now regularly try new workshops with wonderfully supportive friends. We’ve attempted everything from fused glass and creative stitching to floristry, pottery, cake decorating and more. Those sessions are a few hours of freedom and escapism each month. I rarely switch off completely — if I do, my mind can tip into darker places. Creative hobbies are the closest I get to true relaxation.

I am very open about my YOPD in these spaces and have received only kindness and support when I hit a challenge and need to ask for help. Limited dexterity and strength in my left hand can hinder my ability to undertake a task, — thankfully I’m right-handed! — the people around me are patient and encouraging.

I carry on the crafting at home, including my now renowned Sock Gonks! My children and their friends love replicating these and it gives me a buzz to see the enjoyment children receive from creating something out of just a few materials. Creativity isn’t just a hobby for me — it’s therapeutic, expressive, a way to connect with people, and a small act of refusing to give into YOPD.

How do you keep fit?

I have never been an exercise person, so discovering that it’s vital for YOPD management wasn’t great news. Rigidity, slowness and fatigue make it even harder. But early after diagnosis, my identical twin sister encouraged me to aim for a 5k — despite never having worn trainers before, we did it and although I couldn’t sustain running long-term, it boosted my fitness and confidence and reminded me that my determination was still there.

We later completed a sponsored walk with family and friends, raising a grand total of £2,500. Supporting research and raising awareness became a huge motivator and a way of turning something tough into something positive.

These days, perimenopause adds another layer – my energy varies wildly – that many women with YOPD quietly navigate. I am still figuring out the right hormonal balance for me but knowing other women with YOPD experience the same thing helps enormously. But it also highlights how much more research and understanding is needed.

My daily exercise now is simply staying in constant motion — mentally and physically: chores, cleaning, organising my art room — keeping myself agile from morning to night. It’s not the gym; it’s a daily rhythm that keeps me moving and connected to my life that I can control the pace of.

Have you had to learn a set routine of coping?

My routine is shaped by my family. From the moment I was diagnosed, my priority has been minimising the impact on my husband and children. I still get up early to make lunches and help them get ready for school; I am determined to do those “mum things” that mean everything to me even if they can manage a lot more for themselves these days.

To do that, my routine constantly evolves. I take my medication the moment I wake up, before I wake the children, and I have learned to plan activities around when I am likely to feel my best. I would love to be spontaneous, but living with YOPD means I have to be organised — often down to the hour. I have always been a “control freak” but now that structure enables me to keep being the mum I want to be.

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

Medication is both a lifeline and a challenge. It gives me back movement and function, but the side effects can be tough, and it’s a constant reminder that I am unwell. One of the biggest lessons I have learned is to listen to my body, not watch the clock. If I am due a dose every three hours but start stiffening after two, I take it earlier. But I also try not to take it too soon and risk dyskinesia. It is a constant balancing act. I know my signs pretty well now but it changes over time. I keep medication stashed in different places to try and avoid being caught out — a small but powerful act of self-care, learnt the hard way.

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

I was lucky: a friend connected me with someone else living with YOPD early on, and from there I met many others through online groups. Only people with Parkinson’s truly understand the day-to-day realities, and that peer support has been invaluable.

Now seven years in, I can offer guidance to people newly diagnosed or struggling through symptom or medication changes. Those early days are frightening; I remember that well. Being able to offer reassurance, empathy, or even just a message that says “You are not alone” is one of the most meaningful parts of this journey. That’s one of the unexpected gifts of YOPD: meeting courageous, resilient people who face these challenges head-on and who are willing to help others along the way.

Have you found having an Advocate / Mentor useful?

Yes, this definitely helped; knowing there was someone who knew what it was like and understood.

Can you share with us your journey to diagnosis?

My left hand would not do what I wanted it to…I noticed I could not wiggle my fingers very well and was constantly fatigued. I mentioned this to my mum and sister and they said “yeah, you are quite rigid and slow too…”. My twin said that when she hugged me – we’re a very “huggy” family – it felt like I was tense and resisting. I had not been aware of that at all. Now, I know that they were concerned it might be YOPD, even though there was no family history of it, but they did not say anything. In retrospect, my writing and typing had also become shockingly bad, I had brain fog all of the time and I generally ached all over, a clear sign something was wrong. At the time though I was a bit dismissive, didn’t think much of it. When I went to see the doctor, as soon as fatigue came up, he said “Well, 99% of the time, you never find the cause for that”. I was 40 with two children under five and a responsible NHS job….

A suspected heart murmur distracted everyone for a while, and no-one seemed to have a clue as to why I was having problems with my left hand. They just put it down to Repetitive Strain Injury or possibly Carpal Tunnel. After numerous visits back to the GP and months of failed improvement following physiotherapy, I went back to the GP to specifically ask for a referral to orthopaedics. Thank goodness I did make a fuss as the orthopaedic consultant was brilliant; he suspected something neurological right away and referred me on to my first neurologist. Even though I had various tests, including a DaT scan, I had convinced myself nothing was too wrong and whatever it was could be fixed. Whether this denial of what was becoming more obvious to those around me was a copying mechanism, I don’t know, but I certainly felt utterly blindsided when my diagnosis finally came. There is certainly a big jump from carpal tunnel to YOPD. I had all these plans: I was about to continue building my career again after having kids, we had just bought a bigger house…and suddenly my whole world got swept from under my feet. The only certainty I had was that I was going to get worse…

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

I believe that the toughest challenge of having YOPD, is one that I have still yet to conquer, and that is acceptance. Acceptance of the new life I have to lead. You cannot hide away or try to bury your emotions. I went through every emotion there is, and I still do struggle with feeling overwhelmed by the enormity of the challenge ahead of me. I think perhaps you never fully accept it, but you learn to live with it.

My advice is to be kind to yourself, allow yourself time to grieve for the life you had planned, accept that it is ok at times to feel overwhelmed, angry, scared. It is a huge thing for you and your family to face. Try to see the positives and make the best of your “on” times! Also be ready to adapt and adjust when needed – sometimes on an hourly basis – and acknowledge that it is ok to ask for help too. There is lots of support out there, you do not have to go through this alone.

For me, the only way to try to come to terms with having YOPD is to try to see the positives out of it and to use those positives to make a difference. For example, in January 2023, I had a sudden and dramatic decline in my health, causing me to be off work for the whole year. I was broken both physically and mentally. Having this time of work allowed me time to heal. When I was feeling a bit stronger, I said to myself enough is enough, I can either stay like this, feeling sorry for myself, watching daytime TV and sleeping all the time, or I can try to get something positive out of this situation (usually my default).

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

I was not always open about my diagnosis to everyone. I did not want the label, and for a long time I hid it at the school gates because I just wanted to be a normal mum. Eventually, it became harder to hide than to explain. I reached a point where I felt, “I don’t want to be like this, but I am — I can’t hide anymore. The only way for me to cope with having YOPD, is to be an open book and hope others will see passed my exterior and take the time to see the real me. It was a hard decision to make, but ultimately, I realised I was hiding away from the very people I needed in my life the most. I truly hoped by being completely open and honest, the more internal peace I would find.

A World Parkinson’s Day poetry challenge gave me a sense of purpose again. It led me to create my social media account @2youngforpd — named after the reaction I often got when I told people my diagnosis, and the assumptions that contribute to missed symptoms, misdiagnoses and delayed care for so many young people — especially women.

Since then, I have created numerous reels to help increase awareness of YOPD amongst the general public and also within the medical field. They were painful to make but had the biggest impact. When I showed the human side of living with YOPD, it allowed viewers a glimpse into my world. The response I received was overwhelmingly positive. Not only had I helped raise awareness, I hoped I had also increased empathy and understanding towards those of us living with YOPD. I have since made more reels, contacted other people with YOPD and have also tried to tackle specifically the medical profession and their belief as to what a typical Parkinson’s patient should look like. The truth is YOPD symptoms and stresses can be different to patients who are diagnosed later in life. Our journey of diagnosis can be frustratingly lengthy, and the impact can be huge on our own lives and that of our loved ones.

I was given the opportunity, through my local GP Practice, to speak with junior doctors about my YOPD diagnosis journey, my symptoms and to share with them how my life has been effected. To my delight, they seemed to gain a lot from our conversation, and I hope they came away with a better understanding of YOPD and the human cost involved too. I also had the opportunity to appear in a physiotherapy training video, representing one of the many faces of YOPD. I hope this went some way in helping trainees understand what they can do to better support their patients in the future.

Making a difference where I can has been part of my coping; it has given me purpose and meaning. But advocacy is vulnerable work, and I have taken breaks when needed. Sometimes I have the energy to share and raise awareness; but it is a double-edged sword and I do not want to stay in that world all the time. Other times, I want to live in the parts of my life that have nothing to do with YOPD; just being silly with the kids.

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

I am lucky to have unwavering support from family and friends, even though I worry sometimes that they do not give themselves space to feel what this means for them. My husband admits he sometimes “tunes out” from it all at work — I think it is how he protects both of us.

My children were very young when I was diagnosed. Once they knew what was going on — and that I was not going anywhere — they adjusted with remarkable resilience, better than a lot of adults. They take pride in being “my little helpers,” especially when my balance is not great. They have seen me quite poorly at times and I used to worry a lot about the impact of that on them. But they mostly take it in their stride.

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

YOPD has reshaped how I see the world. I live more in the present now. The future can feel overwhelming, so I try to hold onto the small, beautiful moments. And I am more aware than ever of how lucky I am to have those people around me.

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

Carl Beech and the invention of the BeechBand. It is refreshing to see someone who is genuinely focused on helping others rather than making a big profit. Lots of admiration for him and thankful for the hope it has given people living with Parkinson’s. Everyone needs hope.

Who or what inspires you?

Michael J Fox is an obvious point of inspiration to me. The way he has dedicated his life in helping us all to have better treatment available as quickly as possible is so admirable. He again gives us all hope which in my mind is the best treatment of them all. I also gain inspiration from the people I have met on my journey so far. Each and every one of them, whether newly diagnosed and needing a reassuring but honest advice, or someone who has lived with YOPD for years, they all leave an impression on me. I am grateful to them for being with me through the good and the bad times. We are an amazingly supportive bunch of people; I love that about us.

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

The only one I have listened to really is Movers and Shakers. Because it is presented by those with Parkinson’s it is more appealing and offers more value to me than if it was being hosted by a TV presenter or a doctor.

What does your photograph mean to you?

I am grateful to Trevor for capturing both the subtler signs of Parkinson’s and the essence of who I am. I can see the rigidity in my face, body and hands — even in my smile — but instead of sadness, I see resilience, growing acceptance, and a glimmer of my cheekiness.