An Adrenoleukodystrophy Patient Story: “Every Day is Like Christmas Day”

In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD).

Sadly, it’s incurable and there’s no medication to ease my condition. Since then, my life has been a rollercoaster ride you would never choose to go on.

I’m affected by three main symptoms: very poor balance, chronic fatigue, and bad short-term memory.

For thirty years, I was top of the class in my career, but ALD has changed that for me. Unfortunately, my prospects for strengthening my career have taken a back seat forever. 

In short, ALD bullies my brain. It has brought the black-dog into my life, which lives under my laptop, under my pillow and around my car’s steering-wheel.

All that said, I still try to have a positive outlook on life. I often think everyday is like Christmas day, as ALD has taught me to appreciate the small things. I have slowed down, which feels quite unnatural for me. If I don’t, I might fall over, fall aslee,p or forget what I am going to do!

It’s not so easy to keep things going, as there are periods of self-loathing and lack of energy. ALD has brought feeling of worthlessness and self-doubt, and a sense that I’m not living, but rather just existing.

The world often thinks everything is okay with me,  because I greet people with a smile and a soft word. It sometimes annoys my wife that I don’t show people how I’m really feeling. She worries that people will think everything is well with me, because that’s the impression I give.

A long time ago, I remember taking my late father, Alexander, to the city hospital for a lumbar puncture. He was later diagnosed with motor neurone disease and died less than two years later, in 2002. Little did I know, I would get my own lumbar punctures 15 years later, confirming my own ALD diagnosis. There’s no connection, as my ALD is x-linked, and has been passed to me from my mother.

My condition is a slow-burn compared to my dad’s, where he died before two years. I will be this way or worse for a long, long time. It’s debatable which of the two is better. I so wish I could talk to him and share our experiences, and also show him Olivia, his great-grand-daughter. He was only 58 when he died and would be 76 now, a perfect age for a great-grandfather. I don’t have a death-wish, but I do. It takes me forever to do anything and when I do manage it, I am shattered afterwards!

Despite all of this, I really appreciate having a wonderful wife Carol Ann and two grown-up children, Rachael and Matthew, as well as two precious grand-children, David and Olivia.

I do not crave summer holidays in far-away locations – I am happiest with my family by my side at home. ALD has taught me these are the most important things in life.

Written by: Michael Conway

 

 

 

 


 

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