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For five years, Johnny found himself going to the doctor, complaining of aches and pains, and feeling unable to do something as simple as run upstairs. There is no one simple test for MS; doctors typically diagnose it through an accumulation of symptoms, although it can be confirmed in more than 90 per cent of cases by an MRI scan, which will reveal areas of damage, called lesions, on the spinal cord. On doctors’ advice, Johnny would embark on a health kick: get more sleep, stop drinking. But when the day came that his whole body felt numb, enough was enough. Johnny visited a doctor and this time refused to leave – “Well, I couldn’t walk” – until something was done and he was examined properly.
Johnny has tried several other treatments, including an anti-spastic agent, Baclofen, and Aimspro, a controversial drug derived from a serum made of goats’ blood, which has never been formally trialled. It is only available privately and Johnny found it too expensive. Now he relies on a combination of the sedative diazepam and anti-depressant amitriptyline, plus he is trying an experimental treatment, LDN, or low-dose naltrexone, which is believed to boost the immune system by increasing production of the body’s “natural” painkillers, endorphins. Again, it has to be paid for as it is not available on the NHS. “This is a most effective drug for me – the other day my legs felt really strong. “More importantly, it is giving me my personality back.”
The weakness in his legs has been one of his greatest frustrations. “At first I only needed one stick, then I needed crutches, but I got fed up with being barred from pubs and clubs because the bouncers thought I was drunk. Walking was painful and unsteady so I had to accept that I needed a wheelchair. At first it was awful, but now I have a groovy new French chair, which helps.”
Sadly, in the past month, the spasms have begun to affect his arms and Johnny has found himself making excuses not to get the drawing board out. So this talented artist, who discovered his passion at 10 when he saw a comic book, immediately surrendered his football to a friend and began to draw and draw for days on end, has found himself almost frightened to begin work for fear of what he might no longer be able to do. ”I am grateful for the amount of drawing I have done so far, but I’m scared to put pen to paper now. The last time I drew anything was last year.” However, he remains remarkably upbeat. He has the strong support of friends and family – sisters Jane and Sarah, plus that niece who is now at medical school. “The more intense the disease gets, the more intense my relationships become. I never feel excluded because people are really sweet and they forget I am ill. My mum has been particularly helpful.”
Johnny accepts his fate with remarkable ease. “I am staring death in the face and I want to move on. I believe in euthanasia. I want to go my way when the time comes. And I am not demoralised, but I am very angry – this disease makes me angry. ”But I’m not bitter – when I see kids running up the street, having fun, skateboarding, doing what they do, I say thank God for your myelin sheath and may you always be happy and healthy.”
was made by Animal Monday Production and funded by the Channel 4 British Documentary Foundation and the Wellcome Trust. MS Society Helpline: 0800 800 8000
