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Disability-MyExperiencewithALS.doc

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Disability-MyExperiencewithALS Iamquiteoftenasked:HowdoyoufeelabouthavingALS.Theansweris,notalot.Itrytoleadasnormalalifeaspossible,andnotthinkaboutmycondition,orregretthethingsitpreventsmefromdoing,whicharenotthatmany. ItwasagreatshocktometodiscoverthatIhadmotorneuronedisease.Ihadneverbeenverywellco-ordinatedphysicallyasachild.Iwasnotgoodatballgames,andmyhandwritingwasthedespairofmyteachers.Maybeforthisreason,Ididn'tcaremuchforsportorphysicalactivities.ButthingsseemedtochangewhenIwenttoOxford,attheageof17.Itookupcoxingandrowing.IwasnotBoatRacestandard,butIgotbyatthelevelofinter-Collegecompetition. InmythirdyearatOxford,however,InoticedthatIseemedtobegettingmoreclumsy,andIfelloveronceortwicefornoapparentreason.ButitwasnotuntilIwasatCambridge,inthefollowingyear,thatmyfathernoticed,andtookmetothefamilydoctor.Hereferredmetoaspecialist,andshortlyaftermy21stbirthday,Iwentintohospitalfortests.Iwasinfortwoweeks,duringwhichIhadawidevarietyoftests.Theytookamusclesamplefrommyarm,stuckelectrodesintome,andinjectedsomeradioopaquefluidintomyspine,andwatcheditgoingupanddownwithx-rays,astheytiltedthebed.Afterallthat,theydidn'ttellmewhatIhad,exceptthatitwasnotmultiplesclerosis,andthatIwasana-typicalcase.Igatheredhowever,thattheyexpectedittocontinuetogetworse,andthattherewasnothingtheycoulddo,exceptgivemevitamins.Icouldseethattheydidn'texpectthemtohavemucheffect.Ididn'tfeellikeaskingformoredetails,becausetheywereobviouslybad. TherealisationthatIhadanincurabledisease,thatwaslikelytokillmeinafewyears,wasabitofashock.Howcouldsomethinglikethathappentome.WhyshouldIbecutofflikethis.However,whileIhadbeeninhospital,IhadseenaboyIvaguelyknewdieofleukaemia,inthebedoppositeme.Ithadnotbeenaprettysight.Clearlytherewerepeoplewhowereworseoffthanme.Atleastmyconditiondidn'tmakemefeelsick.WheneverIfeelinclinedtobesorryformyselfIrememberthatboy. Notknowingwhatwasgoingtohappentome,orhowrapidlythediseasewouldprogress,Iwasatalooseend.ThedoctorstoldmetogobacktoCambridgeandcarryonwiththeresearchIhadjustst