Walking 465,000 steps throughout January

Rona Stephens-Hill is a tenant at Holdenhurst with her husband Adrian. The couple has been married for 30 years, and now Rona is supporting Adrian after he received a Motor Neurone Disease diagnosis in April 2021. Here she tells us more about her fundraising challenge for the MND Association.

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. Some people with motor neurone disease get stuck in hospital because of the lack of accessibility in their own home. 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.

Why did you choose Holdenhurst?

There were just about 10 or 12 other tenants here when we moved in May 2022. 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!

“I liked what Holdenhurst had to offer, when things get worse for Adrian 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.

Already there is a caring and friendly community at Holdenhurst, with friends accompanying me on my daily walks.”

Rona Stephens-Hill

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. He also lost muscle between his thumb and index finger which is one of the signs of MND.

Physically he looks well and can walk, he just needs a wheelchair from time to time. But 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.

The challenge: walking 15,000 steps every day

So, 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.

Do you have a fundraising target?

I completed the 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 too, 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.

“The MND Association have held my hand through this whole process, and I don’t know what I would have done without them. I remember thinking, what can I do for them?”

Rona Stephens-Hill

How did you get involved with #TakeOverMND fundraising?

One of the things that happens when you get diagnosed is very quickly the MND Association get in touch. Then 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. I remember thinking, what can I do for them?

Donate Now

Sponsor Rona to complete 15,000 steps a day this January and help support families affected by motor neurone disease. Whether you can donate £5 or £50, every penny counts in the fight against MND.

You can donate via Rona’s Just Giving page here: https://www.justgiving.com/fundraising/Rona-Stephens-Hill1