Name: Rose Donaldson

Age and year of diagnosis: 49 (2016)

Any immediate family/children: Rose lives in Scotland with her husband. They have 3 grown up sons.

Tell us a bit about your journey to diagnosis

Well, I’m the Big 60 this year, but I was diagnosed about 10 years ago. I was just under 50. It’s not in my family, other a family member having a medication related Parkinsonism. For me symptoms started about 3 or 4 years before my diagnosis, it started with pain in my neck. It felt like 2 of my vertebrae were pinched. Then I developed frozen shoulder. Then I fell and fractured my elbow. I also started to drag my leg and so visited the GP and they basically sent me straight to a Neurologist. I had heard of Parkinson’s as a condition, but not in younger people. My children were 13 and 15 at the time. I did go to a NHS Neurologist, but also went private for the (brain) scan. I was told over the phone that I had Parkinson’s by my private Neurologist about 2 hours before I was due to see my NHS consultant.

When you got your diagnosis, where you given any support straight away? Perhaps a referral to a Parkinson’s specialist nurse?

Yes I did, I got a lovely NHS Parkinson’s nurse in Kingston Hospital, and she was a godsend. I also had an NHS Consultant at the same place. My nurse signposted me to a few things like a dance class for people with Parkinson’s. I did go but ran home afterwards, whilst I’m a positive person, it was a bit much seeing what you might be in 10 years’ time. The ladies were all lovely there and actually I do go to a dance class now, up here in Scotland.

Was there anything for Younger people with Parkinson’s when you were diagnosed?

No, not really. I did see a physio who offered a class with PD Warrior exercises but again, in a class with people further on in the condition. The average age was about 65/70 years old. I was the youngest in the class. I’m a joiner though, so did just try to get on with it.

Did your family get any support when you were diagnosed?

My husband certainly didn’t, but I’m not sure he is the type to accept it. I took a few months before I told my children. I have three boys – at the time my oldest was 15 and my twins were 13. I think they knew something was up and were just relieved that I wasn’t going to die. Kids aren’t stupid are they? They know something is up. They’ve been very supportive, but I find talking about it with them helps. Now they are older, they’ve helped raise money for Parkinson’s – doing walks and even one of them shaved his head!

When did you meet a person of a comparable age with Parkinson’s?

It was probably when I moved to Glasgow. I found so many people of a similar age with Parkinson’s. I’m involved with different groups and things now – webinars and conferences. I was in the Neuro Heroes online exercise video’s actually. There is quite a bit online, and I met people with YOPD through that.

Were you working when you were diagnosed with YOPD?

Yes, I was working for British Airways at the time on the planes. I took voluntary redundancy quite soon afterwards and went to work in John Lewis, who were really supportive. I told then straight away about the Parkinson’s. They were brilliant. They were really good if I needed to change my hours, really supportive with the condition. My manager was very generous.

You’ve mentioned that you are a positive person, do you think that mindset has helped you cope with the condition?

Definitely. I’m just not the sort of person who can sit and wallow. You can do that for a bit, but eventually you’ve got to get on with it. I’m not waiting around for cures; I haven’t got time! I want to show my kids that you need to get on with life and just get out there and do it! I do feel sorry for myself at times, and I think feeling like that is normal, but I’m generally very positive and try to get things going.

I do feel more anxious than when I was younger though. I’m not sure if it’s the meds or the condition. I think it’s quite common. For example, I’m worse as a passenger in a car. I’m also now a terrible airline passenger.

What helps improve your mental health?

Hiking definitely helps my mental health. I like to walk out to Loch Lomand, it has such a beautiful view, and there’s hardly anyone there. My neighbours and friends are really lovely, so that really helps. I’ve made lots of friends who are like myself. You feel safe and supported in that environment. I didn’t expect to find so much going on the countryside (we are 20 mins from Glasgow). I go to a Dance for Parkinson’s group in the next village. I’ve always liked to dance, although my timing and co-ordination is not as good as it was. But the group is so joyful, all different ages of men and women.

I have also set up my own coffee morning. It’s in the village hall and has about 15 people with Parkinson’s that come. I’m also a member of a local choir – I mean even if you can’t sing, you can hum right! I’m also part of a local writing group. I’ve always written poetry, but since my diagnosis I’ve gotten into more. It’s a weird thing! But the writing group is great for that.

I also do a podcast called PD Mums Musings. I’ve done that for about 3 years now. It’s only me talking about the condition, but I’ve just done a video podcast with my Parkinson’s dance teacher – it’s PD tips with a side of dance! We talk about how dance helps Parkinson’s.

Would you recommend exercise for people with Parkinson’s?

Definitely! I started with an online group called Neuro Heroes during Covid. I do it 2 mornings a week. It’s a good laugh as well. There are no excuses really when you do it online, you can’t say that I’m too tried to go or it’s raining outside. I have no excuse! We were talking one about doing some kind of Parky Olympics, which would have events like who is the fastest to get into a bra, or putting your socks on!

Have you any advice on diet or nutrition for people with Parkinsons?

I’m a sugaraholic! I blame the Parkinson’s medication for that….don’t leave a packet of digestive biscuits near me or you won’t get any back! However, I generally do try to eat healthy. I’ve noticed changes to my appetite, I’m not as hungry as I used to be. I find working out and exercise does help with any extra “fridge dipping” I do.

What about Parkinson’s medication? What have you found helpful?

My big thing is checking brands. Sourcing the right medications and brands can be quite hard at times, but I have a good relationship with my chemist, and she understands that I need the same brand each time. For me, if I get a different brand, or a get a mix of different brands, it really affects how I walk. We get told that the active ingredients are the same, but for my body I need a certain kind. I do try to take my medications on time and also with a large gulp of water to make sure it goes down properly. I find the medication will loosen my rigidity, alongside keeping moving.

What would you like to see improved in the services offered to people with young onset Parkinsons?

I think a mentorship programme would be helpful for those newly diagnosed – a buddy scheme. I feel quite passionate about getting support out there. Sometimes we are left to float in the wind. I think just being able to have someone to reach out to and have a conversation with, someone else with YOPD is valuable, someone who really understands what you are going through. I think being with a group of people with Parkinson’s can be so helpful.

More Parkinson’s specialists would be great as well.

Any final words of advice to people with YOPD?

Tell people about the condition when you are ready, but do tell them. Don’t be afraid. If you are slow in the supermarket or the airport, tell people why. It makes you more stressed pretending that everything is alright. I would say try and find a Parkinsons’ group; you might even find a group advertising in your local shop window.