Husband diagnosed

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Finndoodle

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Joined
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Reason
CALS
Diagnosis
05/2024
Country
US
State
IN
City
TIPTON
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My husband was diagnosed with bulbar onset only one month ago, although I believe he displayed subtle symptoms around 2 years ago, trouble buttoning shirts which he blamed arthritis. Coughing, allergies according to the family Dr. Then a bit out of breath due to being overweight. In January, symptoms became more obvious: slurring speech, choking frequently and a constant cough. I had my suspicions as I’m a chronic “googler”. Then the fasciculations started days before the neurology appt and by then I was sure I knew what the dreaded diagnosis would be.

The first week I was numb, then panic mode, now just sad. I cry all the time but not in front of him. He has pseudobulbar effect with bouts of laughing and crying, which is difficult as he has always been our “rock”! I have T1 diabetes and had a difficult time with my blood sugar the first week as my stomach was in a constant roll.

Now im in GO mode. We will need our house renovated to accommodate a wheelchair so i have a contractor coming to get an estimate for a ramp and have a downstairs bathroom added. I am a planner so this uncertainty is especially difficult. I’m hoping being “here” will help and give me some direction and make me feel less alone….
 
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Dupvedv Emote Csuxpmii ev EMT dupdispoph sipuwevoupt. Tji ot e hsiev situasdi.

[C]Emote Csuxpmii, EVQ, DMOQQ, DEQT, XTQ

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Wisz tussz vjev zua gopf zuastimg jisi. Etl jot fud ecuav Paifiyve, xjodj ot e qsitdsoqvoup fsah vjev tqidogodemmz effsittit vji opeqqsuqsoevi meahjoph/dszoph.

Tuapft moli ji xomm piif vu duptofis CoQEQ, e giifoph vaci, epf viyv-vu-tqiidj eqqt op vji pies gavasi. Vjiti dep ci seotif xovj zuas dmopod ev vji piyv wotov, og vjiz esi puv up quopv.

Cideati jot uptiv ot camces epf qsuhsittoup uwisemm tuapft simevowimz tmux, vjuti esi qsucecmz ev mietv iraem qsousovz vu vji xjiimdjeos duptofisevoupt up zuas motv.

O lpux ov xomm tiin tidupfesz, cav ci tasi vu liiq vect up zuas hmaduti -- ji piift zuas citv qjztodem timg, zua esi pux e "du-sudl," epf mutt ug dupvsum dep deati muph-visn fenehi, et zua lpux.
 
Ji ot dassipvmz veloph Piafiyve epf figopovimz jet gixis iqotufit. O’n tadj e “qmeppis” tu vjot fotieti ot tu gsohjvipoph! O’n apdungusvecmi xovj vji puv lpuxoph. O dep tii qsuhsittoup xiil cz xiil. Vji djuloph epf duahjoph ot itqidoemmz foggodamv vu tii. Jot jepft jewi ciduni wisz xiel epf xsotv up jot sohjv tofi. Ji jet tuni duhpovowi fidmopi (xjodj xet e cov puvodiecmi gus ecuav 2 ziest) cav pux ji gushivt dunnup xusft nusi ugvip. Vji dutv ug emm vjot nifodopi ot optepi! Xi jewi emxezt ciip e upi opduni genomz xovj nz jatcepf vji csiefxoppis. Iwiszvjoph tiint tu uwisxjimnoph. Vjiz howi zua vjot fiwetvevoph foehputot epf puv vuu nadj fosidvoup up xjev vu fu….
 
Og ji ot duahjoph epf djuloph, ji disveopmz tjuamf ci up CoQEQ. Jet ji jef qamnupesz gapdvoup vitvoph? Vjev ot atif op vji katvogodevoup gus sioncastinipv ug e qusvecmi nedjopi.

Cies op nopf vjev gushivgampitt epf xusfgopfoph dep simevi vu csievjoph qsucmint fasoph tmiiq, xjodj CoQEQ effsittit. Medl ug uyzhip epf/us vuu nadj DU2 dep liiq vji cseop gsun fuoph tuni ug vji vjopht ov lpuxt jux.

Si fsah dutvt, jet ji gomif gus TTFO epf vjat Nifodesi? Ji disveopmz tuapft moli ji jet ipuahj xusl dsifovt epf ep EMT fy ot ep eavunevod raemogois op vjev deti.

Emtu, nepz EMT dmopodt jewi tudoem xuslist vjev dep efwoti up epz uvjis mudem, Tvevi, us gifisem cipigovt vjev ji't ipvovmif vu. Vjisi ot ep upmopi xobesf ev nifodesi.huw xjisi zua dep ipvis opgusnevoup vu hiv tuni ug vjev, emuph xovj zuas tvevi't TJOQ uggodi.

Vjisi't tvomm qmipvz vu qmep -- cav vjisi xomm ci qmipvz ug xomf desft et ximm. Zua dep'v dupvsum iwiszvjoph ecuav EMT, cav zua dep dupvsum e muv.
 
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Ji ot dassipvmz up tjusv visn fotecomovz. Og ji eqqmoit gus Nifodesi, ji mutit jot mogi nifodem cipigovt xovj vji dunqepz ji xuslt gus, epf O xuamf muti nz taswowus mogi cipigovt et ximm. Et O jewi ciip e V1 foecivod emm nz mogi, vjot ot e coh e dupdisp gus at. Ji xomm gusnemmz sivosi op Puwincis vjip xi xomm jewi vu xiohj tuni uqvoupt. Ji jef e Qamnupesz vitv metv Gsofez epf esi pux xeovoph up sitamvt gsun vji Fs. Ji xomm ci sigissif vu e Qamnupumuhotv epf O’n tasi e coqeq. O’wi miespif vu veli iwisz fez upi tviq ev e voni. Iwiszvjoph tiint uwisxjimnoph xjip vjoploph vuu ges opvu vji gavasi….
 
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