Dominic’s story

My diagnosis  

Thirty-five years ago. Somewhere between 1993 or 1994. I’ve stopped trying to pin the year down. A good deal of that period is blocked out, and I don’t think that’s unusual.  

I was diagnosed by a private neurologist. I’d already worked out what was coming. I shared a flat with a clinical research expert, I’d read my GP’s notes upside down and seen the words “Lhermitte’s sign,” and I’d gone and looked it up in a medical library.  

So, the consultation was brief. He said I had MS, which in those days was said plainly and without much surrounding it. I said, “Oh, right. What do you suggest?” He suggested I eat less red meat. That was the entirety of the advice.  

There was no Internet. There were no MS nurses. There were no Disease Modifying drugs. MS was represented almost entirely by photographs of people in wheelchairs. What I felt was unreality, and then a sort of denial at two removes, in that I simply carried on with my life on the basis that nothing I did could change any of it.  

What helped me  

I found Overcoming MS a good while ago, not long after it appeared. My honest first impression was that the recommendations looked fringey, and that it was very prescriptive. Now, I follow some of the recommendations. I take 5,000 IU of vitamin D daily and a high-strength fish oil, and I’ve always eaten a broadly Mediterranean diet.  

 MS can make people desperate, and there is an entire industry parked on the verge selling cures to people in that state. Overcoming MS is about lifestyle changes, diet and community. It doesn’t pretend any of it is a cure. When you’re newly diagnosed you are genuinely at sea, and having somewhere to anchor yourself is not to be sniffed at.   

What changed  

When I was diagnosed there were no drugs available, no Internet and no mobile phones. There are now around a dozen DMTs; I’ve been through five of them, and I raise awareness about MS through my three social media channels. This summarises my 35 years with MS.  

More recently I’ve moved from RRMS to SPMS, and I’m about to start a trial of a BTK inhibitor that isn’t yet fully available.  

MS eventually forced me to stop working -I went kicking and screaming. I’ve had to accept that my days are shorter than the used to be. One of my prescriptions is modafinil, which sits within NICE guidance and is given to me under specialist care. It made a considerable difference at a point when my cognition was declining. It isn’t a substitute for the rest of it, and no pill does the whole job.  

The unglamorous things matter more than I’d like. If I don’t exercise, sleep and eat properly, I pay for it. And I can no longer drink alcohol at all.  

What still isn’t easy  

Most of what’s difficult is mental rather than physical, and plenty of it isn’t about MS at all. Lots of things in life aren’t easy, with or without a diagnosis, and the first discipline is not looking at absolutely everything through the lens of MS.  

Yes, I fatigue more easily. Yes, I have to work harder at maintaining my cognition. My mobility is much more limited than it was: this time last year I cycled across Canada to raise money for MS brain health, and I’m now on the enhanced rate of PIP because I can barely walk. If you spend your time beating yourself up over what you used to be able to do, you will send yourself round the bend.  

The uncertainty is real. My approach is to concentrate on what I can affect and let go of what I can’t. With MS there is a great deal in the second category, because nobody yet knows. The things in the first category are exercise, sleep, food and hydration, and those are within the gift of the individual.   

Life today  

My life is as it is. It couldn’t have turned out any other way, because it’s the product of everything I’ve done, everything other people have done and everything the disease has done. You can’t change the past. I’m a product of yesterday and the fifty-seven years before it.  

My satisfaction and my purpose come out of the MS work. I sit on the boards of a couple of clinical trials. I’m an uncontested nominee for the board of iAIMS, the new international community for AI in MS. I put up videos every week. I’m an honorary research fellow at a Russell Group university in London.  

What living well amounts to, in my view, is doing the common sense things I’ve just described, and not making the disease the only subject of your life.  

Nobody told me… living well with MS is about common sense