LIVE WITH A TERMINAL DISEASE
IFELT tingling and pain in my arms, then my balance started to deteriorate. I was initially diagnosed with multiple sclerosis in 2015 but I wasn’t convinced. I knew there was something wrong with me but I wasn’t sure what. The tests continued and I was soon told I had been wrongly diagnosed.
I’ll always remember that day. The doctor said this long name, I asked him to write it down for me and I’ve kept it ever since. That bit of paper was my first step into that world, as an adrenoleukodystrophy sufferer.
I knew nothing about ALD, I hadn’t even heard of it, most people have never heard of it. ALD has affected my balance, my memory and causes me crippling fatigue. It’s a terminal, life-shortening, neurological disease which is passed down from mother to son and affects one in 20,000 males.
It makes me exhausted. Every day is a struggle and I often sleep for 12 hours a day but I’m determined to get up and get out to live my life to the fullest. I used to remember everything but now it proves difficult to remember simple everyday tasks such as locking the door. I have a stick that I use; I was embarrassed to use it at first but it means I don’t need to hang onto walls for support.
I still want to live my life as normally as I can. My condition is untreatable so I try not to let it upset me. It’s a combination of things that have kept me going: I’m a positive person so I try to keep a good outlook and I have a loving and caring family. I also enjoy my job at BAE Systems, building global combat ships for the Royal Navy.
Living with ALD allows me to see the world differently. I tend to focus on what I have in my life. Everything is valuable and important. My wife Carol Ann was diagnosed in 2016 with breast cancer so we help each other as much as we can.
My son and daughter always help me but I like to get on with it myself. Meeting my baby granddaughter Olivia was one of the best days of my life. If I can keep everything in that little world, that keeps me happy and I feel able to carry on. Every day feels like Christmas