Name: Sarah Sykes

Age and year of diagnosis: 46 (2021)

Occupation: Careers Adviser

Any immediate family/children: Husband, teenage daughter and a cat

What do you do for work?

I am a school careers adviser — and I love it. I’m passionate about motivating young people. I think YOPD has made me even more empathic towards them, and I get even more joy from giving them hope for their futures.

I’m much more conscious now of helping them consider whether their career plans assume they’ll always have the same physical abilities they have as teenagers. Construction is a really popular choice, for example, so I encourage them to think about how much it relies on physical strength they might not always have to the same degree: “You might find that you slow down as you get older… how would you cope with that?”

I’ve had to scale back over the years, and I’m about to drop down to two days a week. I see seven or eight students a day and then have to write everything up, and I’ve been finding that quite tiring — sometimes mentally, sometimes physically. I need to pace myself. Access to Work were very good; it took some effort to get everything sorted, but I’ve received lots of helpful equipment, including voice-to-text software.

What do you do for fun? Do you have any hobbies? What impact has YOPD had on them?

I volunteer for Parkinson’s UK, running a monthly support group for people of working age. It’s growing slowly. I’m proud of it. It has grown from just me and one other person to fourteen attendees.

I also volunteer with Patients as Educators, working with current and prospective undergraduates at the University of Sheffield. We act as the “patients” for their assessments, pre-entry interviews and diagnostic exercises.  It’s exciting because it gives me the chance to inform them about YOPD and raise awareness that it’s not just an older person’s condition.

I also have a Reiki qualification and go to a weekly share where we work on each other and meditate. I have to do some of it seated these days. I’ve been practising for 15 years, and I’m aiming to reach Reiki Master level one day.

I’m an avid reader, though I now find a Kindle easier than turning physical pages.
And I make the most of my access card to see live music! One of my friends with YOPD is an amazing cellist, and she’s introduced me to classical music again — it’s been magical.

How do you keep fit?

I use the treadmill at the gym, but it’s harder to stay motivated at this time of year when it’s cold, wet, and dark.  I love walking and make good use of our family’s National Trust membership. 

What do you do to relax?

Meditation, going out with friends, and writing poetry.

I started writing poetry after I was diagnosed, and some of my work has been published. When I wake in the night, I often write to calm myself down. My friends gently tease me about spending my time writing poetry to relax when they just watch Married at First Sight — although I still watch that too!

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

I found a lot of information online really distressing. Finding Spotlight YOPD was a positive turning point. And making friends in the YOPD community has made all the difference.

I’ve found the support group incredibly moving — sometimes people, especially those newly diagnosed, just come and hold my hand. I need that support too! Supporting others helps take my mind off myself. My husband runs the group alongside me, and he appreciates the opportunity to talk with other partners of people with Parkinson’s.

Can you share your journey to diagnosis?

I first had a frozen shoulder, and cortisone injections weren’t helping. Then colleagues kept saying, “You’re limping — are you okay?” I kept blaming it on my shoes and buying new ones. My handwriting was becoming terrible.

Then we went on a visit to Oxford with my cousin and her husband and I was dragging behind the family. I thought they were all just fitter, but my cousin said, “You need to go to the doctor.” I dismissed it, but she badgered me. I went in August and was diagnosed by December — it was relatively quick.

I’d read an article that summer about the founder of Spotlight YOPD, and I remember saying to a friend, “Her symptoms sound exactly like mine.” That was my first inkling that it might be YOPD. 

But I still dragged myself up the hill to the hospital to see the neurologist — I could hardly walk by then — having told my husband not to come because “they’ll just give me some shoulder exercises; it’ll be fine.” I didn’t take it seriously. When they asked me to walk down the corridor so they could assess my gait, I was being playful, like I was on a catwalk.

So, when the neurologist said, “It looks like YOPD, but the best way to tell is if you respond to the medication. Do you want to start tonight?” I just sat in stunned silence. All I could think was, “But I don’t have a tremor!”

I cried all the way to the pharmacy to collect the prescription. I rang my husband to say, “I’ve ruined your life,” then drove myself home. I had social plans that evening, and I took the first tablet on the way there. I immediately felt better and thought, “Right… well, I’ve got it then.”

I’ve had hearing loss since I was two, (I wear two hearing aids) so I’ve lived with disability all my life, and it has never defined me. I’m not ashamed of having YOPD — but the diagnosis was still a shock.

What’s helped you through difficult moments?

Counselling has been really helpful. Thinking about the future can be frightening. I’ve had some very low moments, and it’s reassuring to know that I can access help again if I need to.

How have your family and loved ones responded?

My daughter and husband found it really tough at first. My daughter was only 13 when I was diagnosed, and I just blurted it out. I regret that now. At first my husband tried to do everything for me, which affected our family dynamic.

My daughter, now 17, really motivates me to stay active. She doesn’t make any allowances for me, which is a good thing. She’ll say, “Come on, we’re going for a walk!” There’s no slowing down or feeling sorry for myself around her. I think it’s what I need otherwise I might mope around. We go on some fantastic walks together.

I’d really like to see more support for children of people with YOPD.  A diagnosis like this impacts our children’s lives as well as our own. I also worry about the emotional impact on my husband and his future as a carer.

It was also hard telling my parents — they’re now in their 80s. There’s no history of Parkinson’s in our family.