“I hope that we can slow down or stop people’s MS from getting worse.”

My diagnosis

In 2007 I travelled to Mauritius for my honeymoon. Within a few days of arriving I was getting really bad spasms. And the doctor said I think you’ve got a trapped nerve.

I knew there was something wrong. I had foot drop and difficulty holding anything in my right arm for any length of time. But the spasms went away completely for years.

I didn’t have a clue that it might be MS until way down the line. Eventually I was diagnosed with primary progressive MS in 2014. 

Managing my MS

Now I can't really grip or carry anything in my right arm.  And my right leg drags so I don't walk long distances.

I was never a ‘jump out of bed kind of person’ and I was always a night owl, but now I'm neither. I can't stay up late or get up early because I get tired. And I get brain fog.

Using a computer can be difficult. I can’t type so I use adaptive software. And phones and tablets have got voice activation so that helps me use them.

I take medication in the mornings and evenings that prevents spasms in my sleep. And in January 2020 I started a disease modifying therapy (DMT) called ocrelizumab (Ocrevus). It was previously approved for people with relapsing remitting MS.  Now it’s used for early active primary progressive MS too. 

Unfortunately I didn't get on it quick enough to improve the disability that I've got. But there was an immediate stop to my disability and symptoms getting worse. I was on the shortlist to be part of the clinical trial Octopus. Octopus is a mutli-stage, multi-arm trial testing multiple drugs at once on people with primary and secondary progressive MS.

But the decline in my disability stopped so I wasn’t suitable.

Family life with MS

I have two daughters. They’re nearly 14 and 16. But they were pretty young when I was diagnosed. I just used to say to them: “Daddy's got a bad leg. Daddy's got a bad arm.” I didn't tell them it was MS until more recently.  And part of it was because I hoped it would get better.

For the first 8 or so years of their lives we went on holidays and day trips as a family. We did as much as we possibly could.  But by the end of 2017 it was becoming difficult. I was struggling and getting quite upset about it.

I’ve tried to shield them from the worst of what's wrong with me. But I have a wife and two absolutely fabulous kids who don't treat me as a disabled person. They’re there to help me every step of the way and they've got my back.

Now we try to go on holiday once a year. It doesn't always happen. 

I've got to make sure that it's right for my needs. I do get a lot of help in the airport or if I’m taking a train. I find that everything I need to do is pretty much accessible.

Working and volunteering

I’m not working at the moment. During the pandemic I got made redundant from the job that I’d had for many years. I got another job in a driving test centre but I was finding it too difficult without the adjustments that I needed.

When employers fail to make reasonable adjustments it's so debilitating because it doesn't just affect your day-to-day job, it affects you. It means you don’t want to go into work in the first place because you know when you get there, it's going to be really difficult.

Right now I'm happy to do voluntary work. It doesn't earn me any money but it’s also not affecting my health or wellbeing. It means that I'm not completely exhausted. Doing something on a part time or ad hoc basis seems to work for me so I'm doing some things for the MS research teams.

I don’t volunteer with a specific local group. But I’m always on hand to talk to the press team at the MS Society. And I’ve done Equality, Diversity and Inclusion (EDI) away days. I think it’s important that they talk to people with lived experience of MS.

Accessible transport for disabled people

I have an adapted car from Motability. My right foot doesn't work properly so they swapped the accelerator so I can use my left.

When I bought the car five years ago, I had to pay £1450 up front for it. And then the hoist and the scooter was an extra £120. Now it can be up to £9000 all in and I don't want to spend all that money on a car. In 5 to 10 years’ time, I may be using a wheelchair full time and need to fund adaptations at home.

For people living with MS, looking to the future is a bit more complicated. We have to think about these costs and figure out how we’re going to plan for them. 

Getting involved with the MS Society

By 2018 I was having trouble walking and I needed some help. Getting in touch with the MS Society led to me getting a mobility scooter. And that made a big difference to my independence.

From that point onwards, I wanted to pay that back by getting involved. I’ve done interviews with BBC News, LBC, CNN and Sky News and spoken on behalf of the MS Society.

When everyone’s heating bills went through the roof, news outlets wanted to know how it affected people with disabilities. So I was asked to talk to newscasters and I've always tried my best to raise awareness of the MS Society.

I want people with MS to know that there are people on their side who will advocate for them. Not just support them to carry on with their lives but perhaps improve them.

My hopes for the future of MS research

I hope that we can slow down or stop people’s MS from getting worse. For me ocrelizumab is part of that. And so is the Octopus trial looking at drugs to help with progressive MS. Progressive MS can be so debilitating but with the right research and drugs we could limit its impact, if not prevent it.

For me reversing the disability would be the best thing that could ever happen. I might still have  MS but I could have drugs working to repair the damage. It might not be a full fix but it could rehabilitate my arm and my leg.

The Stop MS Appeal is all about making progress. We're trying to find a way to repair myelin damage. And that would be really great.

I think it's something so important to donate to so that researchers can continue their work. MS can affect anyone. To anyone who’s thinking about donating, please do. You never know whose life you could change.

Let’s give one final push to stop MS, together

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