Disability advocate Mark Webb has lived with MS for 32 years. Now aged 56, he talked to Editor Melissa Holmes about everyday life with MS, how his perspective on the disease has shifted over time, and his hopes for the future.
Q: Tell us more about your journey with MS.
Like many people with MS, I had it for many years before I was diagnosed. 15 years after experiencing my first symptoms, I was diagnosed with MS. I’m now a full-time wheelchair user. My hands are closing up; my left arm is a four out of ten and my right arm is a seven out of ten. And fatigue and cog fog [cognitive/brain fog] are huge issues for me.
Q: How has your perspective changed on managing MS?
I don’t regret ignoring my symptoms, because I didn’t lose anything by having those 15 years of blissful ignorance. But now I treat my symptoms. I’m very aware things like bedsores and UTIs are potentially very dangerous for me. I treat things seriously and I eat healthily, exercise, and accept sleep and rest as important parts of my lifestyle.
Q: Is there any practical advice you’d offer people around ageing well with MS?
I don’t want to be condescending, but a positive attitude – if you can possibly pull for it – is vital to keeping going. Accepting that you’re going to lose friends and colleagues is part of many disabilities. But having a few close friends you can rely on is incredibly important. Finally, accepting the word disability, and that you are disabled, and embracing the disabled community is huge.
Q: What does ageing well with MS mean to you, and how do you incorporate that into your daily life?
Firstly, it’s accepting MS, and that you have certain limitations. Conversely, it’s also pushing against those limitations from time to time. I used to jump out of planes. I’m not allowed to now, but this week I went indoor skydiving. There are still adventures to be had, but I accept some things are beyond me.
It’s also not descending into a hole of inactivity. It’s doing stuff, but it doesn’t have to be bonkers stuff like jumping out of planes.
Q: What challenges have you seen people with MS dealing with as they get older?
I think your shrinking world is very difficult to cope with. I used that example of skydiving, and it’s great I’ve found an alternative. It’s also coping with the uncertainty of what symptoms are going to pop up – it’s pretty scary and tough.
Q: What are your hopes for the future of MS treatment?
One of the reasons I do drug trials is I’m hoping for more treatments for people who feel they’re forgotten. I hope to see more advances around the end-of-life part of our journey, and to see continuous improvements. My hope is to stop MS – it won’t be in time for me, so not curing it, but to stop MS in its tracks would be wonderful.
FOR MORE INFORMATION
Mark’s website: onemanandhiscatheters.com
MS Society: mssociety.org.uk / 0808 800 8000