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 his Motor Neurone Disease diagnosis. Here she tells us more about her fundraising challenge for the MND Association.
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. Holdenhurst gives us the option of accessibility and future care support. A lot of people with motor neurone disease get stuck in their homes or in hospital because of the lack of accessibility in their home living conditions.
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.
There were about 10 or 12 other tenants here when we first moved in, we were quite early. 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! Because I have to get someone in all the time to do things, which I'm happy to do but it's a lot of work and I don't always want somebody around.
“I liked what Holdenhurst had to offer, when things get worse for Adrian it’s easy to access. In our own apartment, you can get a wheelchair around very easily, and we can bring in care support when needed. Plus, there is already a caring and friendly community, with friends accompanying me on my daily walks.”
Rona Stephens-Hill
I also completed the challenge last year and managed to raise some money, which I'm very proud of. It's something I want to do as long as I am able, to give back. Anything I can do to help support another family going through what I'm going through.
One of the things that happen when you get diagnosed with MND is very quickly the MND Association get in touch within six weeks of the diagnosis. 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. If you need anything you can pick up the phone to them, and if they don't know they know somebody who does. Plus, a lot of the association are volunteers.
I remember thinking, what can I do for them?
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! If for any reason life gets in the way then I make it up where I can, and the challenge can run into February. It’s a test getting the steps as well as being a full time carer for Adrian.
Last year I raised close to £1,000. 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 at the moment, so as long as I can I want to do this. Some MND sufferers and carers have a lot more challenges than I do, so if I can raise money to help them, as they've helped me, it's a way of giving back.