Rona’s Fundraising Challenge for the MND Association

Walking 465,000 steps throughout January

Residents of Abbeyfield South Downs new development, Holdenhurst, Rona Stephens-Hill and Adrian Hill have been married for 30 years. Following his recent diagnosis of Motor Neurone Disease, Rona has become Adrian's main carer, and in support of the MND Association, Rona has taken on a spectacular challenge – walking 15,000 steps everyday throughout January.

Living together as long as possible

One of the reasons for moving to Holdenhurst was due to Adrian’s condition, "I want him to live with me as long as possible." said Rona, "Some people with Motor Neurone Disease get stuck in hospital because of the lack of accessibility in their own home, but Holdenhurst gives us the option of accessibility and future care support.

Before, we lived in a Grade One listed building in Brighton. It was lovely and part of a UNESCO site, but you can’t make any changes, so it was no longer right for us. Even though Adrian is mobile and can still walk (he uses a wheelchair sometimes), it very quickly became a problem. We knew we needed to move."

Motor Neurone Disease

Adrian received his diagnosis 23rd April 2021, "I’ll never forget that day. He had something they call dropsy, where instead of walking from your knee you use your hip joints, throwing your foot down." Adrian also lost muscle between his thumb and index finger, which can be another common sign of MND.

"Physically he looks well, he can walk, he just needs a wheelchair from time to time. He has muddled thinking and what’s called ‘emotional overload’ which is quite common with MND. This means that he might say the wrong thing and is starting to lose words – sometimes I have to work out what he’s trying to say. Thankfully his passion for music remains. He used to play the piano long ago, but still listens to a lot of music which is good."

Calling Holdenhurst Home

"There were just about 10 or 12 other tenants here when we moved in May 2022. said Rona "I liked what they had to offer, it is very adaptable for wheelchair users, and when things get worse for my husband it’s easy to access. Even in our own apartment, you can get a wheelchair around very easily, and it’s set up to bring care support in when needed.

"My husband had an idea, 'Oh let’s buy a bungalow and convert it' he said. I thought, no way! Not caring for him and doing a conversion at the same time – can you imagine building works on top of everything? As it is, getting this place together has taken me almost seven months and I still haven’t got it exactly how I want it, and this is somewhere new!"

Walking 15,000 steps every day

"I’m walking 15,000 steps a day every day throughout January – which equates to 465,000 steps in total. Last year I managed more than 500,000! It’s a test getting the steps in, as well as being a full time carer for Adrian."

"I completed this challenge last year too and managed to raise close to £1,000, which I’m very proud of. I’d love to do that again this year, but it’s hard. I’ve already raised around £200 so that’s a good start. I’ll be 72 next birthday and thankfully I’m quite strong, so I want to do this as long as I can. If I can raise money to help them, as they’ve helped me, it’s a way of giving back."

Fundraising as part of #TakeOverMND

When a person is diagnosed with MND very quickly, the MND Association get in touch. "You have health practitioners visit, which is a shock at first because there’s so much going on.

"They patiently explained to me what was ahead, and it wasn’t easy. From getting a blue badge, to voice banking and numerous visits, I was amazed at the support. They said we need to get all of this done now so that you can concentrate on creating positive, happy memories – which is what we’ve been doing.  

"Someone told me a wonderful saying, 'This is a club you never want to belong to, but if you’re going to belong to a club this is the best one'. The MND Association have held my hand through this whole process, and I don’t know what I would have done without them."

Will you sponsor Rona and help support families affected by Motor Neurone Disease? Donate now on Rona's Just Giving page.

^{This blog was repurposed from the original on the Holdenhurst website.}