Parkinson’s UK

Denise Hyde, 69, from Kent, tells us how Parkinson’s UK helps her to stay positive and make the most of life following her diagnosis

For Denise Hyde, life has never been so busy. “I love gardening, horse riding with the RDA, and making cards. I never knew I could draw until I tried and discovered that miraculously I can! I’m on the committee of my local Sevenoaks branch of Parkinson’s UK, so I spend my time getting information for the members. It’s funny because being diagnosed with a long-term health condition can really slow you down, but I’ve found I’m busier than I’ve ever been. I want to make the most of life and fill it with things I love.”

Denise was diagnosed with Parkinson’s disease in November 2003, after experiencing symptoms for around two years. “I began to notice a minor tremor in 2001, and used to get a bit of a fuzzy head. I wasn’t worried but thought I’d better go and get it checked out. My GP took one look at me and said, ‘I think you’ve got Parkinson’s.’ I’d never even heard of it so I had no idea what that meant.” Denise was referred to a consultant. “The wait was quite long, so I decided to go private. The consultant said she thought it might be Parkinson’s – a progressive neurological condition that causes problems in the brain and gets worse over time. However, as it could also have been an essential tremor, she decided to monitor me over the next two years.”

Over that time, Denise’s symptoms got worse. “I worked as a copy typist and was really beginning to struggle with my typing, so I went back to the consultant.”

A DaTSCAN of Denise’s brain confirmed she had Parkinson’s. “I was devastated and burst into tears. I said, ‘I still work, I still drive and I live on my own. How will it affect me?’ The consultant explained it probably wouldn’t affect me much at first and I should still be able to do all those things, plus I could go on medication whenever I liked.”

“I worked, drove and lived on my own, so I worried about how being diagnosed with Parkinson’s would affect my life”

Two years later, Denise was mowing the grass in her garden when she fell over. “At that point I realised I needed to revisit my doctor for a bit of extra help.”

She was started on three different medications initially. “I then built up each dose gradually, and after a few months felt a lot better. Fortunately, I was able to carry on working until my retirement in 2011, as my company was really good with allowing me to cut down my hours and finding work it knew I could do. One of the hardest things, though, was having to give up my driving licence, as I felt as though I was losing my independence.”

Towards the end of 2019, Denise was admitted to hospital for four weeks with pneumonia and sepsis, which exacerbated her Parkinson’s symptoms. “I had really bad dyskinesia – which is all-over, uncontrollable body movement – so they halved my medication, and it pretty much went away. “However, I experience increased slowness and my balance – which has always been affected – is a nightmare, so I have a constant worry about falling over and breaking something. I also feel more tired and often have to have a lie-down in the afternoon to recharge my batteries. However, I am beginning to get back to where I was before and have set myself goals for the next few months, including getting back to riding and being able to walk a certain distance. I try to stay as positive as I can.”

One thing that helps Denise to keep her spirits up is the support of Parkinson’s UK. “I came across the charity shortly after my diagnosis, when I was searching for information about the condition. I got in touch with the Sevenoaks’ branch and the people there were fantastic. They were able to answer my questions and allay many of my fears. “It’s a very active branch – we have monthly coffee mornings, monthly meetings with speakers, exercise classes, yoga, bowling and outings. This social element is so important as you can really feel a bit shut off from the world with Parkinson’s. It’s great to be able to talk with other people in the same boat – everyone knows what you’re going through and that we’re all there for each other.”

“It’s so reassuring to know that whatever’s happening you can always pick up the phone and there’s going to be someone who understands exactly what you’re going through to offer advice”

Denise has also found the charity’s helpline useful. “I called it shortly after my diagnosis, when I wanted to find out if there were any benefits available for me if I cut down my working hours. They were so helpful and found out lots of information for me. “Since then, I have used it several times – mostly if I’m having any problems with medication, which can happen from time to time. There are a team of nurses there who will reassure you and offer advice or point you in the direction of someone who knows more. They always get back to you within 24 hours and always have some sort of solution. It’s so reassuring to know that whatever’s happening you can always pick up the phone and there will be someone who understands exactly what you’re going through to offer advice. That kind of peace of mind is invaluable.”

Parkinson’s UK: help the helpline

TOTAL RAISED: £50,823

The money raised will go towards running the charity’s helpline, which offers much-needed support to those affected by Parkinson’s. The helpline’s trained advisers and specialists help people to cope with the emotional impact and practical challenges of living with the condition (including progressing symptoms, medication challenges and issues to do with benefits and employment); refer callers on to additional support services; and help them to know they’re not alone. Visit parkinsons.org.uk to find out more