Michael Conway, Adrenoleukodystrophy sufferer
I FELT 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 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 every 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 Day.
There are always obstacles and upset, I struggle but I get there. I treat every day as special, as cliched as that sounds, I don't take things for granted. My wife, myself and our little granddaughter Olivia have so much to be happy about. I cherish the simple things and I feel truly blessed to realise this.
I would like to give some recognition to my cherished support network, my soul mate Carol Ann gives me incredible support every day; my employer BAE Systems has been very supportive; ALD Life have helped in a financial and advisory way and my beautiful granddaughter Olivia has made an immense difference.
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules here