Name: Bryn Jones

Age and year of diagnosis: 2019 aged 43

Occupation: History teacher

Any immediate family/children: Married to Sarah, with twins

Tell us about yourself

I’m a teacher – my period is 20th century American history. I’m also a mental health and LGBT lead at school. I love my job and I feel that I make a different. I’m married to Sarah, who’s an art teacher and we have twins. Outside of work and family, I’m very involved in church. It’s a big part of my life. I help out a lot, and my kids get involved too. I also love rock music and comedy t-shirts! Queen and AC/DC are my favourites. I find rock music great to exercise to – which is great for Parkinson’s as well. I’m also a big fan of comedians.

When I was younger, I wanted to be a rock star or actor. I’m actually quite a shy person, but I like to perform. In some ways, doing things like this interview feels like performing, which is nice, and it’s great to do something that I wouldn’t normally do.

Tell us about your Parkinson’s journey?

I was diagnosed in 2019, when I was 43.

I didn’t have the best experience: a consultant looked at me and said it looked like Parkinson’s. I remember asking, “What does that mean?” and he basically said that in four years I have to stop working. That was hard to hear and it wasn’t delivered well and it also wasn’t true!

I later asked to be referred to a different consultant through my GP and eventually saw specialists at Queen’s Square. That was much better. They are so knowledgable and introduced me to a Parkinson’s nurse, who has been amazing support. They later set me up with my apomorphine pump, which has really helped and I’m also being assessed for DBS there too. The early experience wasn’t great, but finding the right team made a big difference.

How has the condition impacted on daily life and work?

Even though Parkinson’s makes things harder, I still do everything, even if I have issues. I don’t really hide it. At first people often thought I was drunk because of how I was moving, but I’m open about it having YOPD now, which has helped.

It makes things difficult, but it’s not the end of the world. You can work for a long time with it. There are certain physical things I can’t do anymore, especially with the kids. That’s challenging. And sometimes there’s a lack of energy or things are harder. Some people might think that it is laziness, but it’s not.

What has helped you to move forwards with YOPD?

Accepting help is not weakness. That’s important.

I’m part of a young-onset Parkinson’s group on a Sunday morning. We exercise together in a fun way. It’s not just “exercise” — it’s social, it’s motivating. Young-onset is very different to other conceptions of Parkinson’s – we’re not old or senile and we might have children and still work, so being around people your own age with Parkinson’s is really important.

I also cycle. I bought a Dutch-style step-through bike that is adapted to me and makes it possible. Church has been a huge support. There’s a lot of other support out there – the Parkinson’s UK website was invaluable early on, Mover’s and Shaker’s, or figures like Michael J Fox can be inspirational. Though it’s important to remember that everyone’s journey is different.

How has it been balancing your Parkinson’s with parenting?

Honestly, it’s challenging. There are things I can’t do physically. But my kids are brilliant. They have their own challenges – my son has autism and my daughter has ADHD, but they’re very protective and we help each other. It’s important not to put too much on your kids too soon and to let them have their childhood, but equally talking to them honestly is better than avoiding it. They understand more than you think.

Parkinson’s, especially YOPD, isn’t just grey haired older people. I’m not old and I’ve not got much hair either! That perception needs to change. Parenting with Parkinson’s isn’t talked about enough, but it’s possible. You adapt.

What would you say to someone newly diagnosed with young-onset Parkinson’s?

Don’t see accepting help as weakness. Allow yourself to accept the help you need – from PD nurses, support groups, friends and family, even things like PIP. Find your own support that works for you.

It’s also important to remember that everyone’s journey is different, and Young-onset Parkinson’s is especially different. Don’t let preconceptions — the old person image — define what you think your future will be.

Be aware of medications. Some drugs can have side effects, and it’s important to be aware of these. Don’t get hung up on them either. At some point you will have to take medications that will help. Finally remember: it’s difficult having YOPD, but it’s not the end of the world. Parkinson’s is a bit crap and makes things harder — but it doesn’t take away who you are.