"On the whole we know we’re lucky" - Steff's story

“My dad was diagnosed with Parkinson’s, when he was in his eighties,” explains Steff. “So I was aware of Parkinson’s, but I thought it was something that happened to elderly people.”

Steff first visited her GP because she was struggling with the movement in her arm and thought she may have had a stroke. Her GP referred Steff to a neurologist, but with no local neurology service where she lives, it took another six months before she could get an appointment in Hereford in England.

“My local Health Board told me all the funding for neurology appointments had been spent for that year. My husband, Martin, had some stern words with various people and I eventually got an appointment, but it was a challenging time.” 

“When I was told I had Parkinson’s, I was horrified,” admits Steff. “I desperately hoped the neurologist was wrong, although I was clutching at straws. I knew it wasn’t a death sentence, but I did think it would ruin my life.” 

Afterwards, Steff had to start coming to terms with the diagnosis at the age of just 54. “There was a grieving process. I felt bad about the life I could have had. I’m at peace with it now, but it has taken me a long time. Doors shut on you and it’s hard not to take that personally.” 

A turning point

As Steff started to come to terms with her diagnosis and manage her symptoms, she recognised she needed to do something positive. After her local Parkinson’s UK group reached out to her, she decided to go to a meeting.

“I didn’t want to go and know what might happen in the future,” admits Steff. “But I did go and it was very friendly. I also saw people there who had more advanced symptoms than my own, which made me think I should help - so I’ve been writing the newsletter for years now!” 

Another thing Steff was keen to try was physical activity. “But I was no good at sport!” says Steff. “I had read something about dancing though, which sounded great. I spoke to a teacher who was looking to expand her classes and together we established a local dance class.

“We meet in Builth Wells, the next town across from where I live, and we start each session with coffee and biscuits and talking with good friends,” Steff says. “The dance itself is movement to music, but you don’t feel silly. You are moving, you are laughing and dancing - it’s fun.

“I always leave smiling. It’s great for social inclusion. The classes have been a real positive - they’ve given me an interest and a focus on something I can do, not what I can’t.” 

Family support

Steff’s family - her husband of 50 years Martin, and three grown-up children - continue to be a great support to her as she navigates life with Parkinson’s. She also now has five grandchildren.

“When I told my family about my diagnosis, I cried. I never said, “It’s going to be ok” and I wish I had. But as everyday went past, they saw I was still the mum I always was, which was very reassuring for them. I don’t think Parkinson’s worried them as much as it worried me.  

“I do think it’s taken more of a toll on Martin than me. I have recently broken my hip and my ankle after a fall. It’s much harder to watch someone you love in pain than it is for the person in pain - I just have to get on with it. He has been marvellous though.”  

Location location location

Steff and Martin have recently moved - a decision which in part was made because of Parkinson’s.

“We lived on a hill in a village. The house had stunning views, but it was hard to live there. It was blocked off in winter, it was a 4 mile drive to get bread and milk. It was very hard to heat and there was only one bathroom upstairs. 

“Old age would have driven us to move anyway, but as my mobility has got worse, I knew I couldn’t cope in the house,” admits Steff. “I wasn’t great at stairs and when my balance was bad, it was worrying trying to manoeuvre them. 

“Now we live in a bungalow. There are no views, but there’s a beautiful garden. It’s in a town, which means there are amenities within walking distance, but it’s still nice and quiet. 

“It’s sad because we’d been in our old house for a long time and it was across the field from my sister. It was the sensible thing to do though, I knew I couldn’t cope in the house.

"Here, everything is on 1 level, we’ve put a tarmac pathway around the whole bungalow so I can move around easily. I can be independent for longer and really I’ve learned to love it.” 

Facing up to the diagnosis

After living with Parkinson’s for over a decade, Steff is able to reflect on Parkinson’s and has helped other people face their own diagnosis. 

“I have been asked to write to newly diagnosed people by friends whose loved one has been told they have Parkinson’s. And I always say what I was told at the beginning by my wonderful Parkinson’s nurse, ‘If you have to have a neurological disease, this is the one to have. It could have been much worse.’ 

“I wish Parkinson’s hadn’t happened. It’s not the retirement I wanted - Martin and I both like walking, which we can’t do anymore. But on the whole we know we’re lucky. 

“I make the most of every minute because I’m very aware of the passing of time - I must do something today, as I might not be able to do it tomorrow.”