Name: Sue Humpage

Age and year of diagnosis: 51 yrs (2020)

Occupation: Room Senior at a Preschool and also a Sales assistant (one day a week) in a local garden centre

Any immediate family/children: Married to Mark, and they have 2 grown children and a new, not so mini, golden doodle puppy called Sid

Tell us about your experience of diagnosis?

It all happened as we were going through the early stages of the pandemic in 2020. I had the DAT scan completed and then I got a phone call whilst I was at work at Preschool. I thought, well if they are ringing me, it won’t be so bad, but it turned out they gave me the diagnosis there and then. Luckily my work mates were supportive on the day, but it would have been so much better if they had told me in person with someone with me. It was really hard going home and then I had to deliver the news myself to my family. 

So, my work knew right from the beginning that I had Parkinson’s. I think it would have been much harder actually if they didn’t know. They might have thought ‘Why is Sue not changing nappies quickly?’ or ‘Why can’t Sue climb the ladder at the garden centre to get the Baby Bio off the shelf?’! It was just easier to tell them so they could make the necessary adjustments for me.  

How does your work support you?

My managers at both the garden centre and Preschool are really good to me. Due to working with small children we need a certain ratio of staff at work at all times, they are however very understanding if I’m feeling ‘off’, I can go and have an extra break if I need to, they have been brilliant. There’s even a bar stool behind the till at the garden centre, so I can sit to work if I need to.

You sound really busy with your jobs, do you have any time for hobbies or fun?

I do! I love going to my exercise classes. I do a RockBox class – which is boxing to rock and heavy metal music. It’s not a Parkinson’s run class and they have been so welcoming to me, it’s fabulous. The instructor is a really good friend of mine now. She was great at letting me do things at my level, she has never singled me out if I was going slow. I credit her for how I feel about my diagnosis now. 

I also love walking my new puppy Sid. It’s great to meet up with family who have dogs and have a good walk around. I love my garden but the puppy is trying to eat most of it, so we’ll have to think about what we plant this year!  My garden is a place I go when I need to be quiet in my head, to take time for me.

I also do Tai Chi.I feel Tai chi is really helping with my core strength and balance. I also love doing Shabumba – it’s a cross between aerobics and Zumba. It’s fantastic – I get to release my inner Beyonce! I just think exercise is not only great from a physical point of view, but a mental health perspective as well. You just feel a great sense of achievement.

I also love baking and have just bought a KitchenAid, which is something I’ve wanted for years. I find it harder to whisk these days, so it was a good excuse to buy one for the cakes I bake! 

Has Parkinson’s impacted on what you enjoy doing?

Physically yes. If I’ve overdone it, or the meds are stating to wear off, but in my head, not at all! It’s just made me want to go faster!  I want to fight this head on. I’m a very positive person.

Do you go to any Parkinson’s groups or classes?

Yes, I’m on the committee for the Parkinson’s UK group in Sheffield who organise lots of activities and support. It can be difficult though for younger people who work, so I set up another group for the the evenings. We meet in a pub once a month for a pie and a pint. There are about 40 of us on the group chat and about 25-30 come along regularly. People have really made friends there; some people have organised a golf day for World Parkinson’s Day and some of us go to a spa together. It’s a really laid-back group – no agenda at all, just a group of people that meet in a pub that have something in common. The pub is also very welcoming and accommodating especially if anyone spills their beer on the way back to the table!

What about medications for Parkinson’s, did you start immediately?

Yes. The consultant who gave me the diagnosis via phone call said to start Sinemet straight away. I didn’t really have much choice, and I really didn’t know much about Parkinson’s as I hadn’t really researched it. To be honest though, I was suffering with Parkinson’s symptoms; painful dystonia and fatigue, so I did take it. It’s just routine now though. I take the levodopa every 3 hours from 6.30am, as well as Rasagiline and the Rotigotine patch. My Fitbit is programmed with an alarm so that helps me remember to take my tablets if I get distracted at work but to be honest, I’m so used to it now, I don’t have much trouble remembering it.

Had your family heard about Parkinson’s before you were diagnosed?

Yes, they had heard of it, but like everyone else, they just thought it was mainly little old men that shake and shuffle with their walking. I said to my daughter, who was the first person I told when I got home that day of the diagnosis, don’t google it randomly, talk to me, or go to a website like Parkinson’s UK. My husband was quite stoic about it. I think it effected my parents more though. I have had to inform them quite a bit about the condition.

What else have you been involved in since being diagnosed with Parkinson’s?

I’ve been involved in research with Sheffield University. I’ve done a few projects now – one was wearing a device that measures your gait. It is hard to turn up to the hospital unmedicated as they requested, but they needed to measure my movements before the medicines kicked in. Then I took my meds, I did some cognitive tests and then did all the movements again. You could really see the difference when I was unmedicated.
I would recommend getting involved in research if you have Parkinson’s. If I can help now, it might benefit me in the future as well. I’m hopefully going to be involved with another project soon with Dr Tom Payne. Really looking forward to that.

Do you listen to any helpful podcasts?

I definitely listen to the Movers and Shakers podcast… I mean who doesn’t listen to that?! I used to just listen to it in my car alone, but now I’ll put in on in the kitchen when my husband Mark is there, so we can listen together. They just explain things differently, in a way that we really understand. 

What advice would you give someone who is recently diagnosed with Young onset Parkinson’s?

Do something! Whatever it is, just do something that helps. Don’t stop. Get information on the condition. As younger people, we have a loud voice and we should use it! Although I would give Parkinson’s back if I could, I wouldn’t give up the friends I’ve made along the way. Sometimes going along to a Parkinson’s group will lead to other things. My beloved sister died of cancer very quickly, and from then on I have thought to myself I’ve got Parkinson’s, but I’m here, I’m alive. It’s a privilege we shouldn’t take lightly. I can choose to make this life better for me. I’m proud to be part of a strong Parkinson’s community. I think for those who are new to the condition, do have a look on the Parkinson’s UK website, there will be lots of information for what is available in your local area and just try it out – it could be a tango class, an afternoon tea, or even a pie and a pint…just do something! I don’t like the term ‘live each day as if it’s your last’ – that would be exhausting! I’d be eating chocolate and drinking Merlot! I like to say I live my days as if it’s my best – the best one I’m going to get. That works for me.