Name: Samantha Cole

Age: 47

Age and year of diagnosis: 45 (2023)

Occupation: Consultant Clinical Health Psychologist (NHS)

Any immediate family/children: partner and 8-year-old son

My Daily Life with YOPD

I still work full-time—condensed into a four-day week—as a Consultant Clinical Health Psychologist in an acute NHS Trust. I lead the psychology department across several hospitals, supporting teams who help patients adjust to diagnoses or treatments, manage pain, cope with grief, and navigate disability, loss, or the end of life. It’s work I care deeply about. I haven’t had to reduce my hours, but my role has evolved. I was already moving toward more leadership and service-development work and less direct clinical time, and my diagnosis simply confirmed that this was the right direction. It’s a bit like becoming a headteacher rather than being in the classroom every day. I’m still very involved, just in a different way.

One practical consideration is being open enough about my symptoms to avoid misunderstandings. If I’m a bit fidgety or shaky in a session, I’ll briefly say, “If you notice me moving a bit, it’s just my Parkinson’s.” It reassures people that it isn’t a reaction to their story or a sign that I’m distracted. Beyond that, my diagnosis isn’t the focus of the room—they are.

Day to day, working full-time is achievable, but it does require some planning. I take my medication on time, keep small “backup” packs in different offices, and build more movement into the day because long periods of sitting don’t work well for me anymore. I also work from home when I can. Sleep can be quite disrupted, which brings its own challenges, but I’m fortunate to work within the NHS, surrounded by colleagues who also balance work with parenting, shifts, menopause, disabilities, and everything else real life throws our way.

Alongside my NHS role, I volunteer as the CEO of Spotlight YOPD, having previously been a trustee. The community means a great deal to me, and contributing to better understanding, support, and visibility for people diagnosed younger feels like energy well spent—especially while I’m still relatively well and able to use my voice to advocate for us.

Do you have any hobbies?

I’ve always had quite a mix of hobbies. I sing four-part harmony, I love swing dancing, and I sew and make – especially around Christmas, when my crafting enthusiasm goes off the scale. We also have an allotment, and I really enjoy being outside, particularly with my son, who is a budding botanist. Walking is a big part of my life too—sometimes with music or a podcast, sometimes just catching up on voice notes from friends.

So far, I’ve been able to continue most of the things I love, just with a bit more planning. The main change is around spontaneity. Before, I might have taken a long train without a reserved seat or crashed on a friend’s sofa after a late night of dancing. These days, I’m a little more thoughtful about comfort and pacing myself. My hobbies haven’t disappeared—they’ve just become a bit more organised.

How do you keep fit? 

I try to keep things varied because different types of movement help in different ways. I do a mix of dancing, tai chi, spin classes, PD HIIT, boxing, walking football, swimming, and Pilates. I also walk a lot—if I can take a work call while walking, or walk instead of catching the bus, I will. It adds up.

I also have advanced osteoarthritis (clearly, I like to collect early-onset conditions), which has recently interrupted my usual exercise routine. I used to run—not because I loved it, but because it was simple—and I’ve been advised to give that up after knee surgery. So now I focus on the activities my body tolerates well and that genuinely make me feel better. I’ve learned that keeping fit with YOPD is less about pushing through and more about being adaptable, creative, and kind to myself on the tougher days.

Do you have a set routine of coping?

Not really, Parkinson’s isn’t consistent enough for a fixed routine to make sense, and life isn’t consistent enough either. How well I feel I’m “coping” shifts for lots of reasons—hormones, work or family demands, or simply a new aspect of the condition becoming noticeable. So instead of a rigid routine, I try to stay organised enough that I can be flexible. I keep the things that help me available, but I don’t expect each day to follow the same pattern.

Like most people my age, I’m juggling a child, work, and caring for older parents, so a perfect schedule just isn’t realistic. My ideal mealtimes for medication don’t always match an eight-year-old’s metabolism, and my ideal balance of movement, rest, and focused work doesn’t always fit neatly into a workday—even with supportive colleagues. It’s a constant compromise, but a manageable one.
What I do aim for is regular habits that support my wellbeing, even if the timing or intensity varies. And from talking with others who have YOPD, I know that none of us gets to a point where we can say, “Right, I’ve cracked it, this is my routine for the rest of my life.” Parkinson’s changes, life changes, and we change. Coping isn’t a destination—it’s an ongoing process of adapting, learning, and readjusting as we go.

YOPD has made me much more intentional about how I spend my time. I now do far more active exercise than I ever used to, and I’ve tried to make it enjoyable—something social or something that feels like a hobby—rather than just another task squeezed in on top of work, parenting, and everything else. Turning exercise into something I look forward to has made it much easier to keep going.
Practical support has helped too. Having some autonomy over my work diary means I can build movement into the day, which not everyone has the privilege to do. And having friends who exercise with me has been a huge motivator—sometimes the social element gets me out of the door more than the workout itself.

I have had to rethink how I commit to activities. Anything that requires paying upfront for a whole block of classes, or charges you for late cancellations, can be tricky. I can book something in good faith and then have a bad night’s sleep or a particularly stiff morning, and I just can’t make it. I used to be a meticulous planner with hobbies, and now I lean more into a “let’s see how it goes” approach. It’s an adjustment, but not a negative one—just a different way of pacing life.

There’s also a mindset shift. Knowing that keeping my mind active, lowering stress, and staying connected is genuinely beneficial helps me stay engaged. But it can be a double-edged sword if you start thinking that all your effort is only delaying decline or if you beat yourself up for missing something. Even people without health conditions struggle to be perfectly consistent with wellness routines. When you add fatigue, pain, or worries about standing out, it’s even harder.

I try to keep a balanced view: doing the activities I enjoy, doing them regularly when I can, and being kind to myself when I can’t. The goal isn’t perfection—it’s quality of life.

The biggest battle can be coming to terms with the diagnosis – what’s cheered you or helped spur you on and process those difficult moments?

My work has played a big part in helping me process the diagnosis. I’ve spent years listening to people navigate life-changing news—about their own health or their loved ones’—and that has given me a deep understanding of the emotional terrain. I knew, at least in theory, what can help someone adjust and what can make it harder. That didn’t remove the shock, but it meant I recognised what I was feeling and wasn’t frightened by my own reactions.

I’d also already been through something similar with my dad’s Young-Onset Parkinson’s diagnosis, so the territory wasn’t completely unfamiliar. And I had about 18 months between YOPD first being mentioned and it finally being confirmed by a very thoughtful neurologist. That time acted as a kind of buffer—it gave me space to prepare myself for the possibility.

For me, the moment of diagnosis wasn’t the hardest part. In some ways it was a relief. It explained the symptoms I’d been having and reassured me that I wasn’t imagining things or “failing to cope.” It meant we could start treating it. It made sense.

At the stage I’m at now, my symptoms are mild and mostly invisible to others once I’m on medication. If anything, the harder part is anticipating the future—knowing that at some point I will become more visibly ill. That’s something I’m still working on making peace with. But knowing I’m part of a supportive community and seeing how many people with YOPD continue to live full, meaningful, very human lives, helps enormously. And reminding myself that adjustment isn’t a one-off event—it’s an ongoing process—keeps me grounded.

People can be very reliant on medication to function. Do you have any tips on how to navigate this as a new routine?

When I was first diagnosed, I had the same instinct many people do—to delay medication for as long as possible. When my dad was diagnosed years ago, there was a widespread belief that you should “save” medication options because each came with drawbacks and there was a fear of running out of treatments. My neurologist explained that this isn’t the current thinking, and that there was no benefit to suffering when medication could improve quality of life. That reassurance made it easier to start.
My initial medication didn’t change much for me, but adding a low-dose dopamine replacement made a noticeable difference. At this stage I’m still early in the condition, so I’m not heavily dependent on medication to function, but it does make life significantly easier. I’ve even had instances where postal prescription delays left me without medication for a couple of weeks—far from ideal, but I managed. It just reminded me how important consistent access will become over time.

As for building medication into daily life: I think it helps to be honest with yourself that it is an adjustment. It’s both a practical task and an emotional reminder throughout the day that something in your body needs support. I’m generally organised, but it’s still easy to leave the house without the right pills.

I try to make it as simple—and as unobtrusive—as possible. I keep small stashes of medication in places I’m regularly at: different bags, coats, workspaces, even at a couple of friends’ houses. I also use a discreet keyring that holds a day’s worth of tablets. It took some effort to find pill holders that felt like me—practical, subtle, not clinical—because I didn’t want something that broadcast “illness” every time I reached for it or that I associated with working in a hospital.

For me, the routine works best when it supports my life rather than disrupts it. Being prepared, keeping things accessible, and choosing tools that fit my identity have helped me settle into the rhythm without feeling defined by it.

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

I don’t think there’s one “best” place—different things help at different times—but a few sources have been invaluable for me.

Early on, I found Spotlight YOPD, and the sense of grassroots solidarity really struck me. People were incredibly generous with practical advice—everything from navigating PIP to finding accessible gyms or connecting with others locally. The peer support is genuine, and the moderated Facebook groups for people with YOPD and for family members offer safe spaces where you don’t need to protect anyone else’s feelings. Talking to people who truly “get it” is hugely reassuring.

More general Parkinson’s groups can be helpful too, but they often cater to an older demographic. In my area, they’re held in retirement settings and during working hours, and I’m usually the youngest person there by decades. That can feel confronting and not always relevant to the issues I’m facing now—work, parenting, finances, or genetics—so I tend to benefit more from informal meet-ups with other people with YOPD who are at a similar life stage.

On the information side, I’m still very evidence-based. I read up on research, take part in studies when I can, and combine that with lived-experience tips from peers. I’m also fortunate to have a neurologist who keeps me updated on new findings and is happy to talk through practical questions. For me, getting support has been about building a patchwork: community, credible information, and professionals I trust.

How have your family and loved ones helped—or not helped?

It’s been mixed, and I think that’s something people don’t always feel able to say out loud. My family love me, but they’ve struggled to process the diagnosis in ways that always feel supportive to me. My child has probably been the easiest—he just accepts me exactly as I am and gets on with being a kid. There’s something very grounding about that.

Some of the adults in my life have found it harder. Some of my relatives, for example, have never used the word “Parkinson’s” with me, even two years on. Instead, they tell me I “look well.” I think it’s their way of coping with their own fear—reassuring themselves that I don’t look like the public image of Parkinson’s they’re frightened of. It can feel hurtful and distancing, but I also understand it: this is their way of protecting themselves from something that feels overwhelming.

Many of my wider family are used to me being emotionally supportive, so there’s been an adjustment there too. Some of them are still figuring out how to manage their feelings about my diagnosis without expecting me to hold all of theirs as well. And my partner has found it challenging in a different way. Because my symptoms are intermittent and mostly invisible on medication, it’s hard for him to know when I’ll need help. If I could say, “Here’s the list of things I can’t do anymore,” he’d adapt in a heartbeat—but YOPD doesn’t work like that. Some days I can walk our son to school; some days I’ve had two hours’ sleep and can’t. It’s not easy for either of us, but we’re learning together.

My friends, on the whole, have been brilliant. They talk to me openly when I need it and treat me the same the rest of the time. But even with the best intentions, I still come up against small ableist assumptions—jokes about typos when it’s actually dystonia, or comments about my “strange eating” when I’m just managing medication timing. None of it is malicious, but it can still sting. I often try to balance humour with gentle education, because most people genuinely want to understand—they just don’t always know how.

Has living with early-onset Parkinson’s given you any fresh perspectives on life and the people around you?

Yes—quite a few. It’s made me much more aware of the ways I used to overextend myself, often out of habit or a sense of obligation. I’m learning to set clearer boundaries and to choose where I put my energy more intentionally. There’s a lot more self-compassion in my life now, and that feels like a genuine shift rather than something I just talk about in my day-job.

It’s also challenged my own ableism. I thought I understood the social model of disability reasonably well but living it is different from understanding it theoretically. I catch myself realising how often I might once have said to someone under 65 who looked physically uncomfortable, “Oh, what have you done to yourself?”—meant kindly but based on assumptions I no longer make. Parkinson’s has given me a deeper awareness of the invisible complexities in other people’s lives.

I wouldn’t say I’ve developed a dramatic “life is short” mentality, but I’m far less inclined to defer things I genuinely want to do. If something brings joy or meaning and might become harder later on, I’m more likely to just get on with it now. It’s a gentler, more grounded form of carpe diem—but one I value.

What do you do to relax? 

Cuddle my son, Pilates, mindfulness, chill with friends, crafts, have a bath so hot it strips several layers of skin, walk and think or walk and listen to something, massage, watch murders or thrillers.

The journey to diagnosis can be a twisty- turny one. Can you share with us your journey?

I first noticed symptoms in 2021. I was working in the hospital in the middle of the pandemic, so it was a busy, stressful time. I noticed that, after work when I was relaxing with my family, one of my legs would be trembling. Once I became aware of it, I could stop it, but it seemed odd. I thought I should probably get it looked at, mostly because my dad had young-onset Parkinson’s. I don’t think I would have thought about it otherwise.

I’m a psychologist who works with people trying to manage anxiety and stress related to physical health conditions. I remember saying to people, “Oh, it’s going to be really embarrassing if they say it’s just stress”. My jokey fear was that I’d go to the GP and they’d say that I just needed to take all my own advice about mindfulness etc. But at the same time, I knew enough about my own coping and stress reactions to know that this was different; it was happening when I was relatively relaxed – watching a film, having a chat with friends in the evening – not at work. In the meantime, every time I googled an apparently random physical thing I had (e.g. urinating often at night, muscle aches, poor sleep, poor temperature regulation, indigestion, pins and needles, increasing anxiety) it would come up as something people with PD can experience. A lot of them also occur in perimenopause though, so I really wasn’t sure if that was the ways things were going to go.

I saw my GP, who was brilliant. I know that’s not a lot of people’s stories, but she took me seriously and referred me to neurology straight away. It was about 18 months in all before I received my diagnosis in 2023. In the lead up to that, I went for an MRI and a DAT scan and saw the neurologist twice. It was the second time seeing the neurologist that I got the diagnosis. I think by the time she said ‘Yes, it’s Parkinson’s,’ I already expected it as she’d warned me the first time that we’d met that it was her “working” theory.

My pathway from being concerned myself to diagnosis was pretty direct, especially given this was during the pandemic. I didn’t get sent down any of the rabbit holes of nerve damage etc that my dad did and many of the people I now know did.

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

Since taking on the CEO role at Spotlight YOPD, I’m much more publicly “out” about having Parkinson’s than I ever expected to be. In that sense, I’m very open about it, and I’ve always talked honestly with people I trust—right from the assessment stage.

With people I’ve only just met, it really depends on the context. If sharing it will help me—say, with travel, access needs, or making a situation safer or more comfortable— or someone else indicates that they might benefit from hearing my lived experience, I have no hesitation talking about it. But in everyday social settings, like meeting a friend-of-a-friend at a party, it’s unlikely to come up. I don’t hide it, but I also don’t lead with it. It’s part of who I am, not the whole introduction.

For me, openness works best when it’s purposeful rather than performative—something I share when it genuinely adds understanding or connection.

Were you surprised by your motivation to ‘respond’ to your diagnosis – for example with more exercise or wanting to start lobbying?

Not really. I’ve always been someone who copes by focusing on what I can control and putting my energy into constructive action. So, getting involved with Spotlight YOPD quite early on, diving into the evidence around lifestyle changes, taking on new forms of exercise, setting up a lasting power of attorney, even doing a charity 10K with my son—all of that felt true to who I am.

I think other people were more surprised than I was, even those who know me well. I did wonder at times whether all the “doing” was a way of avoiding the emotional impact, but I don’t think that’s the case. I’m also in therapy, and I give myself space to feel sad about the future I thought I was going to have. There are days when I grieve, and days when I feel sorry for myself—and that’s part of processing too.

What has shifted is a sense of timing. I’m more aware that I don’t know how long I’ll be able to physically manage everything I want to do, so I’m less inclined to postpone the things that matter. I’ve taken trips to see old friends, booked the slightly extravagant clothes-making retreat, and generally become better at advocating for my own needs instead of people-pleasing. It’s not a dramatic reinvention—it’s just a gentler prioritising of what brings joy, meaning, and connection now.

Who or what inspires you?

I’m most inspired by the people who are living this quietly rather than publicly—those who juggle YOPD with parenting, work, caring responsibilities, and all the ordinary chaos of life, often without recognition. The people who keep adapting, keep showing up, and keep finding ways to make things work even on the difficult days. There’s something very real and very grounding about that kind of resilience.
I’m also inspired by what I’ve seen throughout my career: thousands of people navigating life-changing diagnoses with more honesty, humour, and grit than they give themselves credit for. It’s shaped the way I understand strength—it’s rarely loud, and it’s never perfect.

And, closer to home, my son inspires me more than he knows. He has an instinctive acceptance of who I am now and who I may become. His openness reminds me what genuine compassion looks like without overthinking it.

In general, I think I’m inspired less by big heroic stories and more by the small, steady acts of adapting and caring that people do every day. That’s what keeps me motivated.