A PORT Glasgow dad has opened his heart about living with an incurable life-threatening genetic disorder.

Michael Conway’s world was turned upside down when he was diagnosed with Adrenoleukodystrophy (ALD) — a degenerative neurological disorder which results in chronic and progressive symptoms such as reduced mobility, unsteadiness and memory problems.

The 50-year-old, who works for BAE Systems in Glasgow and formerly worked in Ferguson’s, has decided to speak out to raise awareness, in the hope that a cure will one day be found.

Michael, pictured with his wife Carol Ann, became unwell in 2010 when he started feeling tingling and pain in his right arm and calf, and his balance faltered. 

He said: “I kept scuffing my feet when I walked.

“A few years later I started seeing a consultant neurologist and had several MRI scans of my head and neck. 

“I also had lumbar punctures, nerve conduction tests, blood tests and more. 

“My doctor actually told me on Christmas Eve 2015 that I had multiple sclerosis.

“I can understand why, as a lot of the symptoms look similar, but neither of us were completely convinced, so he continued performing tests until May 2016 and that’s when he finally diagnosed me with Adrenoleukodystrophy.

“I was relieved to finally have an answer but also upset when I found out that there was no cure or medication yet.”

ALD is a condition where the fatty covering of nerve fibres is progressively damaged. 

Without it, the nerves do not work as they should. 
Over the past seven years, Michael’s symptoms have progressed and he now finds it harder to walk without falling.

He added: “I’m still able to live a fairly normal life but I have started to fall more recently. 

“The other day someone else had parked in the disabled space at work, which meant I had to walk a bit further across the car park. 

“I got halfway across and I just fell over — even just over that short distance. 

“Having ALD has made me nervous about going anywhere alone. 

“I’m extremely forgetful and have to keep checking myself, that I’ve got money with me and things like that.

“I worry about losing my car key and I am always checking my bag is in a safe place. 

“I am always tired as well.

“The only time I feel truly free of ALD is when I am sleeping.”
Michael’s family have also been affected by neurological conditions.

His father Alexander, who worked in Ferguson’s, passed away in 2002 after battling motor neurone disease (MND).
Michael said: “It was December 2000 when my father was told.

“None of us knew anything about MND and it came as a big shock. 

“He got progressively worse quite quickly.”

Michael’s late uncle Arthur had Addison’s disease, a rare disorder of the adrenal glands, which stops them from producing enough of certain hormones. 

Many people with ALD develop Addison’s disease.

He added: “I only ever see that side of my family once or twice a year as they live quite far away, so I never really knew that much about his condition. 

“When I told my doctor, he informed me about the link between the two conditions.”

Michael has been to see a genetic specialist to learn more about how the rest of his family could be affected.

He added: “My mother received testing and we found out that she is a carrier of ALD. 

“She hasn’t experienced any of the symptoms that women can have, so hopefully that means she won’t develop any now.”

Michael has two children, Rachael and Matthew. 

As ALD is X-linked, it cannot be passed on from a father to son, however his daughter Rachel is a likely carrier of the ALD gene.

Michael said: “Rachael is 25 and children aren’t at the forefront of her mind right now, so seeing a genetic specialist isn’t a big priority for her.

“She knows it’s important but she just hasn’t gone yet.

“Rachael is a very independent person, she is always working and is going to start college in August.

“I’ve also contacted my cousins to let them know about my condition and how it might affect them. 

“They’ve all said they are going to get testing. 

“Sometimes I feel like I may have just set them worrying about something that might never be a problem, but I also feel I’ve got to tell them just in case.”

Michael has been keen to find out more information ever since his diagnosis and has gone to patient groups like ALD Life to find out more. 

He said: “I know I can’t ignore it and I read because I know it’s important.

“It’s also helpful to read the stories of other people with ALD because they are the only ones who understand you. 

“It’s therapeutic to share and talk about your experiences.”

Michael, who has moved from Port Glasgow to Renfrew, says that despite everything he tries to remain positive.

He said: “With this disease you need to learn to slow down and take things easy. 

“Living with ALD is a perfect opportunity to see the world in a different way. 

“Everything is much more valuable and important. 

“The simple things in life are cherished very much.”