There’s light at the end of the tunnel

Mon 12 July 2021

John Stillitz

I didn’t realise that there was anything wrong for years. I got optic neuritis when I was about 24 or 25, but no one had a clue what was going on. It was 35 years later, in 1990, when I had an MRI scan that I was finally diagnosed with secondary progressive MS.

A relief to find out

My MS diagnosis actually came as a relief. It felt like a merciful release to understand what was going on and I was so grateful to the doctor who told me. My wife joked “I’ll never complain you’re not walking fast enough again”. She has been tremendous and so supportive.

At first I didn’t want anyone to know that I had MS. But it got to a point where I couldn’t hide my stick anymore, so I’m a lot more open now.

Mobility challenges

I definitely count myself lucky. My legs aren’t as strong as they used to be, and my balance isn’t good, but I manage to work around everything. It doesn’t stop me doing what I want to do. If I want to go out to the park I take my scooter.

Going down steps can be difficult, but I’ve learned to do things a bit slower. My mindset is “this is not going to get on top of me”. And I try not to worry too much about what might happen in the future.

There are lots of things I do to make life easier. Currently I’m on FES, a treatment that applies small electrical charges to your muscle and helps with foot drop.

My son’s MS

A few years ago my son was also diagnosed with MS, and that really hit us for six. It was such a difficult time for him and the family.

When I was diagnosed, I sat my children down and told them that MS is not hereditary. So for my son to get diagnosed was really tough. He lives in Bristol where they have this amazing hospital with the most modern facilities you could dream of.

His treatments are brilliant. MRI has come a long way and he got diagnosed much quicker than I did. Thanks to incredible advances in research, it’s a completely different world for people who are being diagnosed now.

What Team Stop MS means to me

That’s why I’m so passionate about being part of Team Stop MS. Even if it won’t directly affect me, there’s light at the other end of the tunnel for younger generations. There are very few treatment options for people with progressive MS, but new ones are starting to emerge. It’s a really hopeful time.

Stopping MS has come a long way to becoming a reality but it’s essential that we keep funding research. If we could find treatments to stop MS from progressing so that people like my son wouldn’t have to worry anymore, then that would be amazing.

For me, Stop MS is positive, it’s optimistic, it’s exciting – it’s everything that’s good.

Join Team Stop MS

Share, donate, fundraise. There’s so many ways to support vital MS research. Go to our Team Stop MS page to find out how to get started.