“I’m a car fanatic, and my first recollection of symptoms is when I was washing my car one day in the middle of winter. Suddenly I noticed my right hand, the one I was using, had gone numb, as if I had chilblains. The strange sensation passed and I thought no more of it.
“A few months later, in the spring, I turned 40. My GP invited me to the surgery for a routine MOT. By then I’d noticed that the ring finger on my right hand had started to drop a little. The MOT went well, everything was working perfectly until, at the end, I happened to tell the doctor about my finger and he looked concerned and said he wanted to check it out,” says Kevan from Rotherham.
Grip test confirmed muscle wastage
“I was referred to a specialist who confirmed, using a grip test, that there was muscle wastage in my right hand, and that it wasn’t as strong as the other one even though I’m right-handed. But there was no suggestion at that point of a serious illness or that things would get worse. I was told it would probably get better by itself over time.
“Then the muscle wastage spread to my right arm and shoulder to the point where I was using it less and less. This time, I was sent for tests to rule out a trapped nerve in my right shoulder. The scans and nerve conduction tests couldn’t find a trapped nerve, but they gave strange abnormal readings nevertheless – and these abnormal readings were replicated when the tests were done on other parts of my body. The operator seemed to know what was wrong with me and that was when MND was first suggested.
“I then had more tests, including a lumbar puncture and a brain scan until, finally, almost a year after my first symptoms had appeared, I was given a firm diagnosis of motor neurone disease.”
MND symptoms have worsened
In the 18 months since Kevan’s diagnosis, his right arm has become weaker, and his left arm is weakening too. His legs have been affected so, although he can still stand unaided, he’s unable to walk. Swallowing is difficult and he finds it hard to raise his head after brushing his teeth or looking down at a newspaper, for example. He relies on his family to help feed him and dress him.
“On first hearing the diagnosis, what made me cry was thinking of my son, Alex, and not being here for him as he grows up. He’s 15 and we have a brilliant relationship, it’s heartbreaking that he’s going to lose his close friend and companion.
"I also have two step-daughters, Abbie, 16, and Lucie, 6, both of whom I’m close to. Lucie’s so young she doesn’t really understand what’s going on and we don’t know what to tell her. She helps me put my socks on, and that’s sweet but it’s sad at the same time."
Experimental drugs for MND
Kevan’s taking part in a clinical trial of an experimental drug called dexpramipexole, which has shown some promise in the treatment of MND. He doesn’t know if he’s taking the placebo or the real drug, but as part of the trial every month he has his blood, lung capacity and weight checked. “I feel it’s a good thing to be in close contact with the medical team at the hospital and it helps me plan for the future,” he says.
“Personally, it helps me to have things to look forward to like holidays and time with friends and family. We recently went to New York, which had been a lifelong ambition of mine. And I try to stay hopeful. You never know what’s round the corner in terms of new treatments.
'How I cope with MND'
“Since my diagnosis, I’ve been in contact with social workers and occupational therapists as well as the medical staff. The NHS has been fantastic. There’s a lot of paperwork to sort out when you have MND, putting your finances in order and that kind of thing, and my doctor’s spent a lot of time helping me with that, as well as managing my condition.
“The MND Association has given me lots of advice and practical help. They can help on the psychological side too. My son has had anger issues since my diagnosis, and the local support group arranged some counselling for him, which has really helped.”
“I’m a strong, positive person, but MND is one of those diagnoses where, even though you know it’s terminal you also can’t quite believe it at first because you feel alright. It’s only 18 months later, when you can’t sit up in bed or feed yourself that it hits you that you’re not going to get better.
"My advice to anyone who’s newly diagnosed with this illness is to pack in work, if you can afford to, before you’ve lost your mobility. That’s what I did and it enabled me to do a lot of things on my wish list while I still could, even if it was just sitting in my garden enjoying the sun. Make every day count, because this condition catches up with you all too quickly."
DeNDRoN, an organisation that supports research into MND, has information about how to get involved with clinical trials of new MND treatments.
Read more about motor neurone disease.