LIVE WITH A TER­MI­NAL DISEASE

The Herald Magazine - - FIRST UP - MICHAEL CON­WAY, ADRENOLEUKODYS­TRO­PHY SUF­FERER

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

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