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The photo shows Graham and Fiona with their two daughters. They're all smiling at the camera.

It’s the little things that help us face uncertainty

We spoke to Fiona (64) and Graham (68) about Fiona’s MS journey. Fiona has primary progressive MS and can’t speak very clearly. So Graham shared their experiences with us with Fiona by his side.

What did Fiona’s diagnosis journey look like?

Fiona was diagnosed with primary progressive MS about 10 years ago, after she’d recovered from breast cancer. We were staying in Boston, USA at the time for my work. And I noticed she wasn’t so steady on her feet and she’d started tripping over.

It took a few years to get through the various layers of consultation. We went to what we thought would be our final consultation. It was there we were told Fiona’s MRI had identified either MS or a brain tumour. But unfortunately they didn’t have time to finalise their investigations by the time of our appointment. It sounds rather strange but we were jumping around with joy when we were rung later that week. Because they told it wasn’t an inoperable brain tumour, but it was MS instead! Things can always be worse.

Where did you get most of your support from?

When Fiona was diagnosed, we told everybody. So most of our support came from friends and family. We have lots of Zoom calls to keep in touch with everyone. And we also have two daughters and a grandchild.

We have a very wide circle of friends, so we’re very lucky in that respect. Overall, I’d say we’re very fortunate. And we want other people to have the same level of support.

Can you tell us more about what your friends and family mean to you?

Buying things is nice but it’s not material things that matter. And we were brought up in a time where you had to communicate with people to get to know them. So we’ve found pleasure in watching our children create their own lives and make their own way. It’s more about your physical and mental state, rather than receiving something.

We also had a granddaughter arrive about 14 months ago. This took us back to when we became parents which has been great. And we spend time with our granddaughter in a different way than her parents do. In some ways, Fiona’s MS has enhanced the pleasure and enjoyment we get from our children and granddaughter. It’s really the physical experiences we cherish.

What’s the biggest area of uncertainty for you?

It tends to be the future. But as you get older, that tends to be the case anyway. Most of our uncertainty comes from leaving the house and going to new places. For example, we have to think about if there’ll be an accessible toilet there and how easy it’ll be to get in and out of bed. We want to go on holiday but there’s no point in flying because of the non-accessible toilets. So we drive if possible.

When we’re planning accommodation, we have to think about the hotel room being suitable. We recently stayed somewhere that was advertised as an accessible room. But you couldn’t get a wheelchair in the bathroom, let alone to the toilet.

Hurdles come from day-to-day obstacles people without MS or a chronic condition wouldn’t think twice about.

Sometimes Fiona’s MS affects her bowels which adds another level of uncertainty to going somewhere. During lockdown, it felt like everyone came down to our level and it felt ‘normal’. I try and look after Fiona as much as possible and that helps with stability. If we’re going to the podiatrist, we’ll go for a nice coffee after and maybe go into some shops.

How has MS impacted family life?

I asked Fiona what she wanted to do when she retired. She said she wanted to “sit and watch sport and American cop shows”. And this is something she gets to do all the time now. Fiona also loves sports, so we go to all Saracens home games and they’re a tremendous club who really look after Fiona with her disabilities. And we watch the Olympics and the football. Mentally,

Fiona’s very happy doing what she dreamt about doing in her retirement.
We do have frustrations as I can’t always understand what she’s saying with her speech impediment. But we’ve found things that make her happy. We also have two carers and we really like them. Their help allows me to go to the office where I do my work. I’m very fortunate as I do enjoy what I do. It also means I can take a break from caring for Fiona. I work from home on a Monday and Friday. And I care for Fiona on those days, so the balance is good.

Find out about support for carers

What are your hopes for the future?

We'd like to see more progress made in research, particularly for people with progressive types of MS. And I think the covid-19 vaccination programme showed us what can be done when we work together. We need to continue supporting and encouraging MS research so we see more breakthroughs in the future.

What would you say to other people in your situation?

It depends on the individual. But we’d recommend making the most of national and regional groups. They help you to realise you’re not alone, and there’s some comfort in that. Knowing there are other people with MS shows you you’re part of something bigger – it’s almost like being part of a club. And within that club you can find a way forward.

Find support in your area
Friends and family can offer support, assistance and love. Try to understand what MS is to get a proper feel for it. We found this also helps partners and family.

Recognise that life might change. But you have to take things on a day-to-day basis. There’s no reason why the enjoyment of life has to stop, even though a person’s life can be different with MS. For both the patient and carer it’s often about enjoying the little things in life like cooking a meal for someone or going to the pub with friends.