Following the publication of our book, Progression in MS, we talk to Adam and his wife Sharon about his multiple sclerosis (MS) journey. Adam, 46, was working as a graphic designer and enjoying family life when in 2011, everything changed and he began experiencing unexplained symptoms that would eventually lead to a diagnosis of multiple sclerosis (MS). Here, Adam and Sharon share their journey through diagnosis, progression, and finding stability together.
Adam: “Life was going swimmingly for our family. Then one day I woke up and my life had changed forever. I couldn’t stand up or do anything. Since then, my life has been about how to live with MS. It’s taken me a long time to get there, and I couldn’t do it without my wife, Sharon.”
Sharon: “Before MS, we were a typical family. Both working. Then MS came along and turned everything upside down. Looking back, a trip to Paris in 2011 was the first sign. Adam couldn’t climb the Eiffel Tower stairs.”
At the time Adam could only manage a few steps up the Tower before he had to stop. But it would take another 18 months for Adam to receive a diagnosis, visiting the GP multiple times with various symptoms. It wasn't until they sought a second opinion at a different hospital that a doctor suggested MS.
Sharon: “It was a long time – a year and a half of him being off work and not well. I did think, ‘Surely the doctors would’ve found something by now’. Knowing what the problem is makes it easier to get on with life. It’s a huge relief when a professional acknowledges that something’s wrong.”
Adam: “At first, I thought, ‘It’s not cancer or MND [motor neurone disease],’ which was a massive relief. We finally had something to work with.”
Sharon: “When he was diagnosed, there were student doctors in the room and when Adam said, ‘She kept telling me to just keep pushing through’, the ground could have opened up and swallowed me because everyone looked at me as if I were a terrible wife.
Adam: “I’m embarrassed by that now.”
Sharon: “It’s real life though, but I was very naïve, and I know better now. It was so hard seeing Adam unable to stand. Every appointment I thought, “They’ll definitely find something this time.” But we’d be sent home again. That limbo for 18 months – it puts huge pressure on a relationship.”
Adam: “If we hadn’t changed hospitals, it would’ve taken years longer to get a diagnosis.”
Transitioning to progressive MS
Adam was initially diagnosed with relapsing remitting MS (RRMS). However, over time, his condition progressed.
Adam: “The neurologist looked at the MRIs and was quite nonchalant, saying, ‘It’s secondary progressive now’. There wasn’t any explanation, just ‘you’re not going to have ups and downs anymore.’ It felt like I was being told I had two years left. Like being thrown into the ocean and told to swim. I never thought it couldn’t happen to me, but it caught me off guard.”
Sharon: “I wasn’t at that appointment, it’s the only one I’ve ever missed. We weren’t expecting it, we thought it was years away.”
Despite the shock, they found some stability in the new diagnosis.
Sharon: “Looking back, Adam’s relapsing momentum had been highly active. Life was all over the place anyway, but things had started to plateau. By the time he was diagnosed as progressive, we were already living that reality. For me as a wife, I’ve found secondary progressive easier to manage. It’s given us some stability to start figuring out what does and doesn't work. Everybody's MS is different, and it's all about finding what works for you, or your MS.”
Adam: “I agree. At least I’m stable, at least there's no up and down. In a way, secondary progressive is perhaps better than RRMS [relapsing remitting MS], which is so unpredictable. Of course, that may not be the case for everyone.”
Finding acceptance and sharing their journey
Acceptance of his diagnosis didn't come immediately for Adam, being a process of adjustment that came over time, impacted by the availability of support in their local area.
Adam: It was like “Here’s a pamphlet”, and appointments felt rushed. Acceptance came out of nowhere. I’d been clinging to my old self, thinking, ‘can I just go back to being that guy?’. Then one day, I stopped. I don’t live like I don’t have MS, but I live like it’s not the first thing on my mind.”
Sharon: Adam’s MS nurse has been brilliant, and there were appointments for physio and diet, but it wasn’t comprehensive – it depends on what’s helpful to each individual. At the time, Adam wasn’t ready. He needed to process it first.
To help others and document their experiences, Adam and Sharon started an Instagram account, called Me, You and Multiple Sclerosis, often hearing from people with young families.
Adam: “Everything we found online was doom and gloom. I thought, ‘That’s not our life right now. Let’s show what it’s actually like.’ It was then that we realised there’s a massive community out there.”
Sharon: “Yeah, we wanted to find out how people cope day-to-day. What happens when you hit a wall in the middle of the shopping centre? Or you can’t get out of the car? We couldn’t find that, so we decided to document it ourselves.”
Adam: “One thing we noticed online was that a lot of people with MS seem to have lost hope. I feel so lucky to have support from Sharon and our family.”
Sharon: A lot of people get in touch about diagnosis and they're quite scared, or they've got children, or they want to know how to navigate through it. We try to take the fear out of it, even if we don’t have all the answers. It’s mostly about raising awareness, but it includes everything that affects family life too.
Advice for others facing progression
Adam: “It’s going to be okay. Get to know your type of MS. Adjust to it. You can still have a great life, but please don’t be scared.”
Sharon: “On the practical side I would say plan for everything – even things that might not happen. We had a wheelchair five minutes after diagnosis. Life can change tomorrow with MS.”
Adam: “At first, I thought, ‘Why are they delivering this stuff?’ But you need to be prepared.”
Sharon: “I help Adam keep doing the things that work for him. Even early on, we talked about adapting the house. You’ve got to be honest and plan for those moments – even the ones that are hard to talk about. Talk about how you’re going to deal with them and get rid of the stigma.”
Adam and Sharon’s humour and openness help to normalise events that can feel mortifying in the moment, which happen to so many people with MS.
Adam: “I once joked from the bathroom, ‘You might as well just come in and help!’ It wasn’t that funny, but it broke the barrier. If you need to be helped in that department, that can be soul-destroying to some people and feel really embarrassing, but the way we deal with it is through humour.”
Sharon: “It helps to laugh about it because one day you might be doing it, and the point is to plan for all these things. Talk about how you'll deal with them and reduce the stigma. You must talk about it all – whether it’s mobility aids, cars, housing, benefits, carers – have those conversations with the people around you and don’t wait until you're struggling.”
Adam: “We once laughed for hours when I didn’t make it home in time from the shops. I don't think we stopped laughing that whole night, it was so funny. It was hysterical, and that made it okay. I really believe that laughter is the best medicine.”
