38 | LIFE | Sunday Independent | 8 January 2012

CASE STUDY

MDsuffererFergusO’Farrell spenthischildhoodexpectingtodiebeforehehit30,saysDavidYoung, buthe’snowinhis40s,andenjoying lifeasamusician,artistandhusband

‘Theywouldn’t touchmewith a barge pole. Recordcompanies lookforcertainthings. Using awheelchairdoesn’t fit that bill’

ITHOUGHTI’DBEDEAD

HEALTH

Diagnosed at nine years of agewithmuscular dystrophy(MD), Fergus O’Farrell neverexpected to see his 30thbirthday. But he has, and he

continues to live a busy life, as hemoveshappily into hismid-40s.“I always thought that I’d land

somewhere in the 20s, at best,” Fergussays, revisiting his teenageworld, andaffording himself a smile.“I suppose the prognosis back then

could only stretch that far. Today, weseem to know somuchmore aboutMD.”He continues: “I remember being

diagnosed in primary school, because,for a while beforehand, we kind of newsomethingwas amiss. I was stumbling alittle, and becoming clumsy.“My folks were devastated. I didn’t

fully understand, but it really knockedthem—especiallymy dad.Mymumseemed to handle the news that bitbetter. After that, we just got onwith it.”Fergus was an active child, just like

most others: running and racingwithhis friends; kicking ball; pedalling hisbike. Naturally sociable, he joined inwith everything. But others began tospot his difference.“In school, my football teamwon a

competition,” he recounts. “Andwewereall gettingmedals, but I didn’t getone at the time— it was thought Ididn’t contribute enough. But I got iteventually.”It is just another thing that Fergus has

circumnavigated in his life with goodgrace.MDwas quite themystery in hischildhood. And so, people easilymistookit for awkwardness or laziness, or plainold carelessness.Now, it is understood that there are

several forms ofMD: themore severetypes limit lives to childhood, whileothers, such as Fergus’s, which is

known as Emery-Dreifuss, allow amuch longer span.Named after professors in theUK and

USwho first described the disorder,Emery-Dreifuss is still quite early in itsframing— only being properly classifiedas a separate disease since the Sixties.The experts do know that, like otherforms ofmuscular dystrophy, themuscles tighten and shorten, and thuslimbs becomemore difficult tomove.However, in Emery-Dreifuss, thesecontractures occur before themusclesactually weaken, and hinder the smoothmovement of the joints sooner.In essence, themuscle fibres are

degenerating and being replaced by fattytissue; this leads to increasing difficultyextending the arms and legs, and thisalso consequently challengesmovement,coordination and balance.Someonewith Fergus’sMDwould

begin to walk on their toes during latechildhood and early adolescence, whiletheywould also display a difficulty inbending their neck forward.“I was riding a bike until I was about

15,” Fergus explains. “But soon after,I had to give it up, and use amopedinstead. That lasted for a couple of yearsbefore I had to concede that I hadn’t thephysical strength to lift it, or even hold itproperly.My legs were first to go. But itwas only amatter of time beforemyshoulders and armswere to follow.“I used to get a piggyback up the

stairs in the last couple of years ofsecondary school.”Yet, Fergus’s telling of how he coped,

while those around him got on and didall the things hewanted to do, is shapedby defiance rather than fear.“I was never scared,” he says. “I was

pissed off, though— the bloodyinconvenience of not being able to dowhat yourmates were doing.”

Unable to pursue sport, Fergusimmersed himself inmusic. And, inClongowesWood, hewaswhere he coulddo just that— learning to cope by losinghimself in hours of piano practice. “Itwas a great place,” he smiles, “ it’s whereI started the band— Interference—withmy friends. I could playmusic for up tofour or five hours a day.“I didn’t evenwant to domy Leaving

Cert. I was so sure this was what I wasgoing to dowithmy life,” he says,echoing the resolution of his youth. “Butmy parents encouragedme to sit theLeaving;mymother insisted. Once I gotthrough, I headed for Dublin wheremyself and a few ofmy friends set up intheWinstanley Factory, opposite ChristChurch Cathedral— tomakemusic.”And they did, gaining recognition

and respect. “But withmyMD,it’s a slow and gradual losing of things,”Fergus describes, “so, over the years,it’s been a case of bye-bye piano, andbye-bye guitar, just as I wasmasteringthem. That’s why I’ve taken uppainting.

“I’ve also had to change how I singthrough speech therapy, because I haveless lung capacity,” he continues. “Oddlyenough, it hasmademe a better singer.Learning how to usemy throatmuscles.”Ever sanguine about his condition,

Fergus holds no grudges, despite themusic industry’s prejudices: “I heardthrough others, they wouldn’t touchmewith a barge pole ’cause of theMD.“That’s just the way of it. Record

companies are looking for certainthings, and being in awheelchair doesn’tfit that bill,” he says, untroubled by therebuffing.It did not hinder his peers. A long-time

friend, the Oscar-winning songwriter,GlenHansard, invited Fergus tocollaborate on the soundtrack to themovieOnce. Andwhen it all took off,Glenwanted Fergus to join him on tourin theUS.“It was great fun,” he grins. “Playing

Radio City and the Philadelphia shows,andNewYork. Travelling is tough, but Ilove it. Even airplane food.”These days, Fergus resides with his

wife, Li, in a beautiful spot, overlookingSchull Bay, inWest Cork. His parentsare his nearest neighbours— theirrespective houses standing either sideof his recording studio.Li, a Chinese nurse, met Fergus

while hewas in hospital in Cyprus,18 years ago. Succumbing to a secondbout of pneumonia that year, Ferguswas downbeat about life. Then,

8 January 2012 | Sunday Independent | LIFE | 39

RUDE HEALTH

Ifearedfluvaccinesgivenbypharmacieswouldcausetrouble,saysMauriceGueret. It’ssurelya jobfordoctorsandnurses

MICHAEL

MACSW

EENEY

/PROVISIO

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Imentioned an old arthritisrub fit for a President beforeChristmas and have beeninundatedwith queriesabout sourcing itsingredients. Oil ofWintergreen is the one thatseems to have caused themost trouble, but I amhappily informed that it isavailable, particularly inolder, family-run chemistshops, where the skill ofcompounding old remedieshas not been lost. BBCtelevision ran a fascinatingseries last year about aVictorian pharmacy,highlighting thewonderfulbreadth of knowledge andtalent pharmacists once hadabout devising andmakingup traditional remedies. I'ma great believer in the realbenefits thatmodernprescriptionmedicine hasbrought to healthcare, but itis a shame that so fewpharmacies still offer tocompound personalhomespun remedies fortheir patients' minoreveryday ailments as theyonce did. Fish blubber oilsand surplus vitamins are avery poor substitute.

On the subject of arthritis, Ihad a very nice email from agentleman in Limerickwhotoldme of another oldremedy, not a rub, but oneto be taken orally. It came,he tellsme, fromAmericaand the ingredients are abag of raisins (white orgolden ones, not dark) and ahalf bottle of gin. The raisinsshould be inserted into thegin until the bottle is fulland the bottle is then closedfor at least oneweek. Thedosage is anything betweenseven and nine raisins perday. Tomy knowledge, therehave not been anymedicaltrials published on thistreatment, and as I have yet

game has begun and aninquiry is under way to findout how trainingwassanctioned, approved andconducted. I shall have a lotmore to say on thismatter, ifthe final report appears inpublic. But there are threeimmediatematters that aretroublingme, and I worrythat theymay not becovered in the report.WhywasHIQA, theHealthInformation andQualityAuthority, not given themandate to conduct aninquiry into this seriouspublic healthmatter?Whywas the pharmacist'strade union (the IPU), andnot the regulator (thePharmaceutical Society),involved in such animportantmatter as thetraining of pharmacists inconducting invasiveprocedures such asvaccination? And finally,whenDr Reilly sanctionedthe delivery of flu vaccinesin pharmacy shops, hadhe satisfied himself thattheywould be trainedadequately and that theirtrainingwould haveadequatemedicalsupervision? The debacle isa public relations disasterfor Irish pharmacy. Some ofthe pharmacists who feelparticularly hard done byare those who chosenot to get involved in fluvaccination because it was afield inwhich nurses anddoctors had particularexpertise. Flu vaccination isimportant for at-risk groupsand those whowork at thecoalface of the healthservice. It should bedelivered cheaply andconveniently— by thosewho have been vaccinatingyou for generations.

DrMauriceGueret is aGPand editor of the ‘IrishMedical Directory’Emailmgueret@imd.ie

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like a turd, and smelledlike a turd,MrMartinwould ask someone elseto handle it while hecommissioned a report onthe application of shine.His department sponsoredsnooker tournaments inCitywest hotel while hespent his effortsmovingsmokers outside licensedpremises and collectinginternational awards forfresh air. Health workersknew theywere on to a goodthing. Everyone fromhealthboardmembers to seniordoctors, trolley porters toward sisters, queued upoutsideMicheal's office forpay rises, bonuses, reducedhours, expenses, grants andallowances. Trade unionsstarted to believe in SantaClaus again. No demandwas too extravagant. Bitsand pieces of healthfacilities were opened upunder his watch, a fewextensions here and the oddattic conversion there, butMartin's reign left little ofsubstance. The number oflocal public houses inIreland entered intocatastrophic decline and thenumber of smokersremained exactly the same.A legacy as empty as theparty he now leads.

At the tail end of lastsummer, HealthMinisterDr James Reilly declaredthat hewas allowingchemists to inject fluvaccines in the autumn. Iwas a bit puzzled, becausenot a single pharmacisthad been trained at thetime to give injectablemedication.We now knowthat hundreds of customerswere subsequentlygiven a children's doseof the vaccine and hadto be recalled forreimmunisation. A blame

to personally succumb toarthritis, I cannotmake anyinformed personalcomment either. But Iwould suggest that if youcan get the gin contentapproved byMrGay Byrneand his Road SafetyAuthority, it'll do you verylittle harm.

You are familiar with the oldadage about your healthbeing your wealth.Well, inIreland, the converse is alsotrue.Wealth can buy youearlier appointments, moreclinical time, bettercommunications,comfortable surroundingsand infinitely betterhospital food. Yes, even inso-called ‘public' hospitals,themenus offered to privatepatients are often starklydifferent to those admittedto public wards. Apartheidhas been institutionalised inour health service forgenerations now and you'dbe very foolish to listen topolitical waffle about theintroduction of a single-tierhealth service. It won't behappening any time soon.Your Government knows it.It's just that theywon'tadmit it, yet.

There was a brief timewhenequal access for all couldhave been a reality.MichealMartin TDwasMinister forHealth and tens of billionsof tax revenues werefunnelled through hisHawkinsHouse piggy-bank.For amanwho talked a lotabout optics, the wordvisionwas completelyforeign toMrMartin.Obsessive about spin andpuff, he forged anentire career from thestudious avoidance ofnettle-grasping. If it looked

in his late 20s, he feared theworst.“I was thinking— ‘ah— that’s it.

This is the pits’,” he says. “AsMD goeson, you becomemore andmore prone topneumonia— and I wasn’t feeling goodabout the future. But then Imet Li.“We’remarried 14 years,” he exclaims.

“And it’s been the best thing inmy life.To have someone to share things with—what were the chances?Me fromsouth-west Ireland, and Li fromsouth-west China.“The daily battles are the simple

things,” he says. “Stuff like toileting.But a nightly dose of Senokot usuallysorts that out. And Li helpsme throughthe day. I’ve got a pressure-relief-systembed, with a computerisedmattress. Ahoist— theworks. So Li doesn’t have tolift me,” he explains.Candidly, he details that it wasn’t

because of hisMD that the couple didn’tstart a family. Although the hereditarypossibility of a son having his father’sconditionwas explored.IfMDwere to occur at all, it might

have been in a grandchild— the chancesbeing quite low. The choice not to takethe parenthood pathwasmore to dowith the vagaries of being amusician.“Music— it’s a rough game. Often I

wonder if I’d have been better off beingborn tone deaf,” Fergus offers with agrin, “Imight havemade a fewmorebob.” That’s O’Farrell for you.

See www.interference.ie

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