For MS awareness week 2025, we’re focusing on meaningful conversations. Community member Tim shares his personal story of how attending an Overcoming MS retreat finally got his conversations flowing.
I was a bit of a fitness nut. I ran every day with my dog, I had completed the gruelling Beachy Head Marathon four times, and every year completed the 100-mile South Downs Way on my mountain bike.
So when I nipped in for a sports physio appointment to sort out numbness around my midriff, I assumed I would have a bit of acupuncture and massage to resolve the matter.
Instead, he took some CT scans and told me to come back in a week. Upon my return, he stated that he was not a neurologist but that my results looked like the onset of MS.
For a few seconds, I asked myself what else MS could stand for. I was clearly too fit and too young (48 years old) to have multiple sclerosis. I knew nothing about this disease, except that it was not good news.
I left the physio and somehow made it to my car. I am not ashamed to say that I cried like a baby for the next five minutes. I was inconsolable with grief, anger and disbelief. Why me!!
I had everything going for me… a loving wife, three great sons and a successful business. More than that, I saw myself as an important “mover and shaker” in my local business community.
Back home, a Google search filled in the blanks in my knowledge. MS was a degenerative, debilitating, incurable disease that would probably knock 10 years off my life and see me ending my years in a wheelchair.
A year later, a neurologist confirmed my diagnosis. I had relapsing and remitting MS.
I decided the best way to deal with it was… not to deal with it. I went into complete denial. I did not want to talk about it, and I certainly did not want to tell my three teenage sons. There was a chance that my MS had been passed on to them. Oh God, how could I ever live with that?!
My wife Sue was my rock. She was my strength during a very dark time. She came across an organisation called Overcoming MS and bought me a book about how some doctor in Australia suggested that MS was not as bad as it was portrayed.
After a brief glimpse at the book, I decided it was too much hassle. It suggested a change of diet, a change of lifestyle, taking up meditation and bloody yoga! Needless to say, I crawled back into my dark place again.
MS continued its destructive path – numbness in different parts of my body, stiffness around knee joints and loss of peripheral vision. I stopped driving for a period of time.
Through a series of strange coincidences, I once more found myself looking at the Overcoming MS approach to dealing with my condition. Sue encouraged me to give it a try … after all, I had absolutely nothing to lose.
I changed my diet, changed my lifestyle, took up meditation and even bloody yoga. I baulked at the idea of attending a week-long Overcoming MS retreat to sit with a group of strangers with MS. “Wow, this is going to be so much fun,” I told my wife as I gave in and packed my bags for the excursion.
This was the first time I had met up with other people with MS, but I did not know what to expect. However, it soon became clear that we were all in the same boat. We were at the retreat to learn how to reconfigure our lives in the hope that it would make a real difference to our diagnosis.
The attendees were very friendly and eager to learn and share experiences. The session was brilliantly led by medical experts and people with lived experience of MS. I no longer felt I was battling this disease alone. We were in this fight together, and that made a very comforting difference.
After the retreat, I felt empowered. The biggest change for me was finally talking about my condition. I explained to my sons that I had MS and that I might have passed the genetic risk factors on to them. Their response? “So what, we have a greater chance of getting Cancer.”
I told people in the business community that I had MS. My biggest fear was that, as a marketing consultant, people would stop giving me work, thinking I was now disabled. Nothing could have been further from the truth. The outpouring of love was amazing.
I did not really prepare for the conversations. I chaired a number of networking groups, so I decided that I would talk about my diagnosis at the meetings. I found this tough, but a huge relief afterwards. People came up to talk to me individually. I was amazed at the number of people who had relatives or friends with MS. I offered to talk to them about Overcoming MS and how it was helping me.
Fast forward 13 years to the present day (May 2025). Ever since embracing the Overcoming MS pathway, my health has been ok.
I have had two relapses – in 2018 and 2021. They have taken little chunks out of my vision and my balance. I can no longer run and mountain bike, as the jarring sensation gives me double vision. I find walking down steps a challenge.
My neurologist has moved me onto the Disease Modifying Drug Kesimpta, which reduces my B-cell count and aims to reduce the risk of relapses and slow disability progression. Two years on, no relapses. So far, so good.
Before I get too carried away by these small steps of success, I am still inconvenienced by my MS. I have “bowel urgency” (also known as not quite making it to the toilet in time), erectile dysfunction, balance issues, double vision and fatigue.
I have leg tremors at night, but a wonder drug called Baclofen has stopped the worst of it.
However, I remain very upbeat about my journey with MS and passionate about the benefits of the Overcoming MS path.
MS affects all of us in different ways, but Overcoming MS has given me hope and the belief that the steps I have taken are making a huge difference in my everyday life.
I think it would be wrong of me to offer any tips on living with MS. The condition affects us all differently. But I would urge everybody to take those first steps with the Overcoming MS Program and see what it does for them. It has worked for me and I still have my health, happiness and love of life. It has given me hope of a brighter future, and I embrace that hope every day.
If you would like to join us in having conversations about MS, join the Live Well Hub, our free community platform to talk to others who ‘get it’.
Follow us on social media for more tips and honest conversations about MS during MS Awareness Week 2025:
