Life af­ter a dev­as­tat­ing di­ag­no­sis

Hav­ing a life-lim­it­ing ill­ness is hugely chal­leng­ing. But An­drew Bren­nan tells Joy Or­pen that fol­low­ing his di­ag­no­sis, he has learned to be grate­ful for ev­ery sin­gle day he spends with his wife and beau­ti­ful daugh­ters

Sunday Independent (Ireland) - Life - - NEWS -

An­drew Bren­nan has two adorable lit­tle daugh­ters, a lov­ing wife, and a sweet dog, and they all live in a charm­ing stone house in the coun­try­side. How­ever, their once per­fect life­style has been marred by the fact that this 33-year-old has been di­ag­nosed with an ex­tremely chal­leng­ing con­di­tion, that will prob­a­bly limit his time with his fam­ily. But he’s not giv­ing in to this; in fact, he’s do­ing all he can to en­able re­search, so oth­ers might be spared the same heartache.

An­drew, who grew up in Castle­town, Co Meath, be­came an ap­pren­tice litho­graphic web printer when he left school in 1999. He then be­gan work­ing at the Meath Chron­i­cle in Na­van. From time to time, he would nip across the road to place bets for him­self and his fel­low work­ers. That’s where he met Yvonne Do­herty, who worked in the bet­ting shop. They soon fell in love and have been to­gether ever since. Their daugh­ters, Aoife (3) and Sophia (20 months), have in­her­ited their father’s rus­set hair, blue eyes and fab­u­lous grin, but not his tall, strong build. It looks like they get their pe­tite­ness and porce­lain skin from their pretty mother.

The Bren­nans live down a coun­try lane, in Mul­lagh, Co Ca­van. The two-storey build­ing was once a Church of Ire­land na­tional school and place of wor­ship. An­drew and Yvonne have lov­ingly re­stored the build­ing, la­bo­ri­ously chip­ping away acres of plas­ter, to re­veal the orig­i­nal stonework. The in­te­rior is now bright, cosy and com­fort­able, while the lush coun­try set­ting is a par­adise for chil­dren. How­ever, their sense of perfection was shat­tered a cou­ple of years ago when An­drew went to see his GP in Na­van, about pain in his face (trigem­i­nal neu­ral­gia).

Dur­ing the con­sul­ta­tion, the doc­tor no­ticed an ab­nor­mal­ity in An­drew’s hand and de­tected spasms in his right arm. “What’s that all about?” he asked An­drew, who replied that he hadn’t had the symptoms in­ves­ti­gated, be­cause they’d never both­ered him. But they both­ered the as­tute doc­tor so much he took a video on his phone of the prob­lem ar­eas, and for­warded it to Pro­fes­sor Orla Hardiman, an emi­nent con­sul­tant neu­rol­o­gist at Beau­mont Hos­pi­tal.

Five weeks later, An­drew was sit­ting in the pro­fes­sor’s wait­ing room, won­der­ing why there were so many pa­tients in wheel­chairs, some un­able to speak. “I mis­tak­enly thought I was in a gen­eral area,” he ad­mits. Hav­ing been ex­am­ined by Prof Hardiman, he was told that fur­ther tests would be re­quired. How­ever, he hadn’t bar­gained on get­ting a call the very next morn­ing, telling him a bed was al­ready wait­ing for him in Beau­mont. He spent a week there hav­ing var­i­ous blood and nerve con­duc­tion study tests, and MRI scans. “To­wards the end of the week,” An­drew ex­plains, “I ex­pected bad news be­cause they wanted Yvonne there when I got the re­sults. My par­ents came as well.”

In late Fe­bru­ary of last year, An­drew learned that he was suf­fer­ing from mo­tor neu­rone dis­ease (MND). This is a pro­gres­sive neu­ro­log­i­cal con­di­tion that at­tacks the mo­tor neu­rones, or nerves, in the brain and spinal cord. It causes mes­sages to grad­u­ally stop reach­ing the mus­cles, which leads to weak­ness and wast­ing through­out the body. How­ever, in­tel­lect is not usu­ally af­fected.

When An­drew got his di­ag­no­sis, he knew noth­ing about the con­di­tion. So Prof Hardiman ex­plained the ins and outs; but she also had to break the dread­ful news, that the av­er­age life ex­pectancy fol­low­ing di­ag­no­sis, was only three to five years. “I felt like I had been hit with a sledge ham­mer,” An­drew re­calls. “I asked to be left alone with my fam­ily.” In time, the symptoms be­came more ob­vi­ous and more de­bil­i­tat­ing. Hav­ing re­searched the con­di­tion, he came to the con­clu­sion that inevitably he would land up in a “veg­e­ta­tive state” in a wheel­chair. So he thought about end­ing his life. But later he changed his mind. “I re­alised it would be self­ish of me to do some­thing so dras­tic. The doc­tor told me that noth­ing hap­pens overnight; to take each day as it comes.”

An­drew then de­cided he could let the MND con­trol him, or he could take a whole dif­fer­ent ap­proach, and be pos­i­tive about the good things in his life. And that’s what he and Yvonne have been do­ing ever since. “I know I am a bit slower these days and find it harder to walk, but what I do have, is re­ally great. I’ll wake up in the morn­ing and think, I’m awake, that’s a good start to the day. I am so grate­ful to be alive. It’s my won­der­ful fam­ily that keeps me go­ing. The glass is half full, that’s my phi­los­o­phy.”

Cur­rently An­drew uses med­i­ca­tion to slow down the pro­gres­sion of the dis­ease, he takes mus­cle re­lax­ants, and has phys­io­ther­apy and oc­cu­pa­tional and speech ther­a­pies. He is ap­pre­cia­tive of the sup­port he has re­ceived from his HSE care team, from his GP, Coun­cil­lor Shane O’Reilly, Prof Hardiman and the MND clinic at Beau­mont. “They’ve all been fan­tas­tic,” he says.

But he is es­pe­cially touched by the un­selfish ef­forts and gen­eros­ity of his former work mates and his fam­ily, who have given of their time and en­ergy to sup­port and fundraise for him. “But most of all I want to thank Yvonne; she re­ally is one in a mil­lion,” says An­drew.

He and Yvonne are facing up to the chal­lenges that lie ahead by build­ing a self-con­tained unit on the ground floor.

‘As I slowly lose my abil­ity to walk, I’m re­al­is­ing I’m not go­ing to get bet­ter. It is what it is’

“There’s no point in bury­ing our heads in the sand. I will reach a point where I can no longer go up the stairs,” he says. “I’ve had a cou­ple of falls al­ready; and while we were on hol­i­day­ing in Spain, I had to hire a mo­bil­ity scooter. There was no shame in it, but it was tough.”

An­drew says he does get re­ally an­gry some­times, be­cause, as he puts it, “this is prob­a­bly go­ing to rob me of the se­cond half of my life. As I slowly lose my abil­ity to walk, I’m re­al­is­ing I’m not go­ing to get bet­ter. I will never fully ac­cept this. But it is what it is, so you just have to get on with things.”

What An­drew has done to make sense of his cir­cum­stances, is to of­fer to par­tic­i­pate in any re­search that deals with MND. “I’m not ex­pect­ing a mir­a­cle cure, but I am hop­ing, in the next 20 or 30 years, that a cure will be found, so ev­ery­one with MND will be helped. I’m not go­ing to live with this; rather it’s go­ing to live with me. I plan to en­joy the time I have left.” The Ir­ish Mo­tor Neu­rone Dis­ease As­so­ci­a­tion asks peo­ple to take part in their Drink Tea for MND cam­paign, dur­ing the month of June, to in­crease aware­ness and to raise funds. For more in­for­ma­tion, Free­fone: (1800) 403-403, or see im­nda.ie

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