Days when I can’t walk, I can cycle
Neil MacLeod, from Invergordon in the Scottish Highlands, was diagnosed in his 20s and now lives with secondary progressive MS. He struggles to walk without using a stick, but get him on a pushbike and he can cycle for miles pain-free.
I was at home in 2004 and I couldn’t stand properly. I was having to lean my head against the wall. And I felt sick. I felt fine lying down but as soon as I stood up I felt sick again. I went to a local hospital and a doctor told my mum to take me home and put me to bed with a couple of painkillers. Fortunately, a nurse said to take me straight to Raigmore Hospital in Inverness because they felt something really wasn’t right.
At Raigmore they kept me awake for 48 hours and suspected I might have a brain tumour. I had an MRI and a CT scan and within a few hours I was diagnosed with MS. It was very, very quick.
Find out more about the different types of MS
The signs were there
After my diagnosis I realised the signs had been there, I just hadn’t known what they were. I was working as a welder and I’d been having problems with my sight. I thought I kept getting what we called ‘flash’ (photokeratitis is a painful eye condition caused when the eyes are exposed to ultraviolet light). This went on for years. I’d been to hospital for tests and they couldn’t find anything. Now I know it was optic neuritis and the start of my MS.
I gave up work after my diagnosis because of my eyesight. I also often worked at height, which wasn’t safe when I had problems with my balance. I also used to really struggle getting out of bed in the morning. I now know that was fatigue, which is still a big part of my MS.
Missing out on victory
I used to cycle competitively when I was young. In 1990 I should have been the schoolboy champion for cycling in Scotland! During the race I was miles in front of everyone but a policeman directing traffic didn’t see me until the last minute and accidentally directed me the wrong way. All the other cyclists passed me. I gradually lost interest in cycling as I got older and got a car and motorbikes. I’ve had to give up driving now due to my MS.
Rediscovering my passion
Just before lockdown, a friend who has cancer suggested I try The Oxygen Works in Inverness. The morning after my first oxygen therapy session I did 50 miles on the bike! Before that I had no ‘oomph’ at all, I was just flat. I was staying at home, watching telly, sleeping. The therapy gave me the energy to get going. For that first ride I used an electric bike, but I now have several different bikes.
It changed my life
My morning cycle gets me going. It gives me a kick-start and a reason to get out of bed and out of the house. Wind, rain, snow, whatever, I’m out. Alarm clock set for 5am and I’m gone.
I’m not in pain at all when I’m cycling, which is so strange. If I walk, with my stick or my big cane, just literally round the corner to the shop, I’m sweating and I’m in so much pain. Even my neighbours tell me they can see I’m in pain. But I can cycle, no bother.
I believed moving my legs would make them stronger and help keep me going. But I didn’t expect cycling to be this good for me. Honestly, cycling and oxygen therapy combined have changed my life. Days when I can’t walk, I can cycle.
Defying the odds
Next year it’ll be 20 years since my diagnosis. It doesn’t seem like it. The doctor who diagnosed me said anytime between five and 10 years later I would probably lose the ability to walk. After a year I got myself a wheelchair. I had a massive party. I was dancing and singing with the band because I didn’t know how much longer I’d be able to do that for. Nineteen years later I’m still going!
