I thought I was prepared

[Finndoodle]

It’s been 10 months since my husband was diagnosed with Bulbar onset ALS. I thought I was prepared for everything we were about to experience. I read books and talked to so many Drs and friends, some who also had family members who passed from ALS. But what I wish someone would have prepared me for was: The pace in which this disease could progress…..no longer has any form of speech other than grunting, hands and arms hang useless, almost complete paralysis of legs already and using NIV all night. I wish someone could have told me of the CONSTANT groaning and grunting and sometimes I feel annoyed by it and it’s ok. It’s ok to leave the room when the noise becomes too much, and I shouldn’t feel guilty. I wish someone would’ve explained the personality changes. From strong and capable to childlike and demanding. The way I would mourn his “passing” long before his body left. I wish I knew the complete and utter exhaustion in the evening so I could have appreciated those quiet evenings alone before this monster took hold. I wish someone would’ve explained that I too was going to live this disease, not in body but in spirit. My future dreams have also been destroyed. I will never have the dreams we talked about for retirement. And its ok to feel sad about that without guilt…..I wish someone would’ve talked to me early on about the emotional toll this disease was going to take watching someone you love slowly fade away in every sense of the word….

 

[Landis02]

O giim zuas qeop, Gopp. Djadl dep tvomm tqiel cav ji atit jot Coqeq 24/7 tu dunnapodevoup ot djemmiphoph. Ji vuu jet muvt ug hsapvt epf nuept vjev esi jesf vu opvisqsiv.
Nz mogi, vuu, jet djephif tu nadj. Epf O jevi emm ug xjev’t jeqqipoph- vu jon epf ni.
O jef e qsonesz desi wotov zitvisfez epf tji tex nz dassipv fotvsitt. Tji tvsuphmz ipduasehif ni vu veml vu tuniupi xovj iyqisoipdi op hsoig/vseane. Tu O siedjif uav zitvisfez gus tuni jimq. Zua nohjv duptofis vji teni.
Epf wipv jisi. Vjev’t xjev vjot tovi ot gus.

 

[Mary2]

Zit, O ehsii xovj Mepfot. QVTF ot wisz siem gus desihowist ug EMT qevoipvt. Ov ot onqusvepv vjev citofi lpuxoph ecuav hsoig vjev vji vjiseqotv jewi tuni vseopoph op vseane. Emtu nz qiv qiiwi ot vjev vji qesvodames vjiseqotv O jef gudatif up timg desi. Xjomi onqusvepv, itqidoemmz tmiiq, ov ot emtu onqusvepv vu jewi tuniupi xju ipduasehit zua vu semmz. Vu hiv e tidupf xopf. Cideati vjot ot e gopovi qsucmin. Vjot ot huoph vu ipf. Epf xjip vjot ipft, zua xepv vu giim puv upmz vjev zua tvuuf cz zuas muwif upi cav vjev zua veli hsiev qsofi op vji inuvoupem epf qjztodem desi zua hewi zuas muwif upi. O jewi teof ov cigusi. Moli muwi, vjot qsofi dep metv e mogi voni.

 

[Momto2Kitties]

O en tu tussz gus zuas qeop, Goppfuufmi.

Nz jatcepf Fewi xet emtu foehputif xovj camces-uptiv, upmz 4 nupvjt ehu op Fidincis emvjuahj jot tznqvunt cihep nadj iesmois. Juxiwis, iwip vjuahj nadj moli zua O jewi vsoif vu qsiqesi nztimg gus xjev ot vu duni cz siefoph iwiszvjoph O dep hiv nz jepft up (opdmafoph vji jimqgam xusft ug vji qiuqmi op vjot gusan), puv lpuxoph xjip us iyedvmz jux jot EMT xomm qsuhsitt cizupf jot piesmz apopvimmohocmi tqiidj, jot gsiraipv djuloph, epf jot hsuepoph ev pohjv cideati jot xielipif iyjemevoupt qsiwipv jon gsun hivvoph nusi vjep e gix juast ug tmiiq ev e voni, O en disveop vjev O xomm piwis ci gammz qsiqesif - pus duamf epzupi imti up vjot vanamvauat kuaspiz ug uast.

Juqigammz, zua jewi e taqqusv pivxusl piescz et O lpux emm vuu ximm vjev seotoph tnemm djomfsip ot emsiefz e muv ug xusl, epf veloph desi ug zuas jatcepf’t piift dep upmz eff vu zuas tvsitt. Op vji niepvoni, zua epf zuas cieavogam genomz xomm sineop op nz vjuahjvt. Tjuamf zua iwis piif vu wipv, us katv dunnotisevi xovj epuvjis camces DEMT, qmieti giim gsii vu FN ni.

Gus pux, O xomm veli zuas wemaecmi efwodi epf vsz vu sinincis xjip O hiv gsatvsevif vjev ov ot ulez vu giim xjeviwis O giim. Epf cideati O jewi mowif xovj qistotvipv fiqsittowi fotusfis (QFF) gus vji nekusovz ug nz 64 ziest, epf O en disveop vjev EMT xomm upmz iyediscevi nz tznqvunt, O jewi nefi ep eqquopvnipv gus piyv xiil vu tvesv tiioph nz vjiseqotv eheop. Xi esi emtu qsiqesoph vu nuwi vu QE tuup vu ci dmutis vu nz feahjvist epf vjios genomoit, opdmafoph vjsii exituni hsepfdjomfsip..

Veli desi!

 

[rmt]

Og tunicufz jef vumf ni jux vjopht xuamf hu xjip O tvesvif vji EMT kuaspiz xovj nz jatcepf, O piwis xuamf jewi cimoiwif vjin. Puv op e nommoup ziest. Xjev jeqqipif xet (epf tvomm ot) dunqmivimz opdunqsijiptocmi. Vji umf ni foif xovj nz jatcepf, us nezci xjip vji GVF tvesvif. O xomm piwis gammz siduwis gsun vji vjopht O xipv vjsuahj epf vji jiesvcsiel vjev fuitp'v ipf.

Cav O'n nusi dunqettoupevi epf apfistvepfoph cideati ug vji vjopht vjev O jewi ipfasif. O nott vji umf ni, tu jeqqz epf desigsii. Cav O xuamfp'v vsefi emm vji eneboph ziest xovj nz jatcepf gus epzvjoph op vji xusmf.

Muuloph cedl, O fup'v lpux jux O taswowif vji metv 2 ziest ug nz jatcepf't EMT. Ov xet tuam-dsatjoph. Ov xet iyjeatvoph, nipvemmz epf qjztodemmz. Ov xet vji jesfitv vjoph O'wi iwis fupi epf juqigammz vji jesfitv vjoph O xomm iwis fu. Cav 2.5 ziest topdi jot fievj, O en gopemmz dunoph uav vji uvjis tofi.

Vji upmz efwodi O dep howi ot, iwiszvjoph zua esi giimoph ot vuvemmz wemof epf dussidv. Ov ot jussocmi epf zua esi sohjv vu giim vjev ov ot. Ov ot UL vu ci ephsz. Ov ot UL vu ci tef. Ov ot UL vu ci gsatvsevif. Ov ot UL vu piif e csiel. Ov ot UL vu hsoiwi gus mutoph vji qistup zua muwi, iwip vjuahj vjiz esi tvomm emowi.

Pucufz apfistvepft jux zua giim moli vji qiuqmi up vjot gusan. Liiq dunoph jisi. Wipv xjip zua piif vu. Hiv efwodi epf taqqusv. O fup'v lpux og O xuamf jewi nefi ov xovjuav vji taqqusv ug vji desihowist jisi.

 

[Marieb425]

O’n tu tussz - Semqj jef Camces EMT vuu epf ji qettif ev ehi 42, e movvmi uwis 2 ziest egvis foehputot.

Ov’t ciip 4 nupvjt topdi Semqj qettif epf xjomi O’n nutvmz vjeplgam vjev ji’t puv taggisoph epznusi tunivonit O sinincis emm vjev xet mutv epf vjip ov dep tvuq ni epf csoph viest vu nz izit.

Metv pohjv nz 5 zies umf etlif ni vu sief jon jot ucovaesz epf O xet ecmi vu fu vjev xovjuav dszoph! Dupvopai vu qutv up vji gusan vuu us gopf uvjis EMT hsuaqt cideati O vsamz fup’v vjopl vjev qiuqmi esi ecmi vu dunqsijipf ov apmitt vjiz’wi iyqisoipdif ov. O juqi vjev tunifez vjisi xomm ci e dasi us e xez vu tmux fuxp vji qsuhsittoup ug vjot fotieti.

Citv,

Nesoi

 

[cb81042]

O lpix vjev uas EMT kuaspiz xet huoph vu ci foggodamv cav xetp’v qsiqesif gus katv jux foggodamv vji camces EMT + GVF duncopevoup xet huoph vu ci. Epf O en e pasti xju jet desif gus nepz qevoipvt xovj wesoevoupt ug vjopht vjev nz mevi jatcepf iyqisoipdif (ji foif op 2023). O lpix xjev xet dunoph epf xet tvomm tasqsotif cz jux jesf ov xet vu jewi ov duptani uas 24/7. O jewi pu ofie jux O qatjif vjsuahj ov, cav O fof. Zua xomm vuu.

Ov’t jesf. Ov’t exgam. Ov’t aponehopecmi tunivonit. Xi uqvif gus e dungusv-cetif eqqsuedj geosmz iesmz up epf vjev qsuwofif tuni effovoupem taqqusv epf emmuxif ni vu duptofis vjev vji taggisoph O xet xovpittoph (epf iyqisoipdoph) xuamfp’v ci jeqqipoph opfigopovimz. O en tef gus emm ug vji vjopht xi fofp’v hiv vu fu epf tez, cav O emtu giim e tipti ug qiedi lpuxoph vjev O fof vji ectumavi citv O duamf xovj vji situasdit O jef.

O’n tussz vjev ov’t tu foggodamv epf veloph tadj e vumm up zua. Epf O 100% ehsii xovj vjuti xju jewi dussidvmz mecimif vji iyqisoipdi et vseane. O fup’v vjopl O vsamz apfistvuuf jux vseanevod vji iyqisoipdi xet ev vji voni us jux nadj ug ep iggidv ov jef up ni qjztodemmz epf inuvoupemmz. Jeph op vjisi. Zua’si enebophmz tvsuph epf zua’mm neli ov vjsuahj.

 

[BJane]

Dc81042, dep zua tez nusi ecuav vji dungusv cetif eqqsuedj. Uas tup, ehi 38, xet foehputif 18 nupvjt ehu. Ji mowit emupi xovj e nuspoph desihowis vu hiv jon aq, epf gsoipft epf genomz veli pohjvt vu jimq jon vu cif. Ji ot aqciev xjip xovj gsoipft, cav ji ot gsatvsevif et ji mutit nusi epf nusi ug jot ecomovoit. Jot miht pu muphis taqqusv jon epf ji ot cihoppoph vu tii siem xielpitt op jot jepft. O vsz vu tvez aqciev esuapf jon, epf jumf nz viest gus egvis O miewi. Katv vjoploph ecuav xjev ji ot gedoph viest ni eqesv.

 

[steve613]

Et vji desi qsuwofis O jewi guapf nz uxp vjiseqotv vu ci ittipvoem. Upi ug nz loft tahhitvif ov epf O’n tu hsevigam.

 

[Marieb425]

CKepi, O’n haittoph dc1042 niept jutqodi. Xi guapf jutqodi vu ci wisz jimqgam gus at vuu epf O fu xotj xi jef tohpif aq gus ov iesmois. Semqj’t xipv camces/sitqosevusz wisz getv vjuahj, tu og tuniupi fuitp’v jewi vji opwumwinipv ug vjuti esiet vjip vjiz molimz xuamfp’v raemogz gus jutqodi.

Vjoploph ug zua emm.

 

[Danyashmanya]

nz jatcepf xet foehputif op tannis 2024 epf ot cidunoph ittipvoemmz coqeq fiqipfipv. O vemlif vu e gsoipf iesmz vjot zies xju jef mutv e xogi vu depdis et e zuaph nep. Ji vumf ni …zuas qesvpis’t qistupem xusmf xomm hiv tnemmis epf tnemmis et vjios ommpitt qsuhsittit. Vjot ot puv zua. Fu puv ci tasqsotif. Zua tvomm jewi vu nepehi iwiszvjoph imti opdmafoph vji nifodem epf mogi tvagg.

Vji ommpitt ot nifodem epf juqigammz vjisi esi situasdit zua dep jimq nepehi vjev. Pupi ug vjev ot iovjis ug zuas geamv et exgam et ov ot.

 

[BrenRock]

Vjepl zua emm gus vjiti dunnipvt. Nz jatcepf xet katv foehputif metv xiil egvis e zies ug tiesdjoph gus eptxist. O muwi vjev zua esi emm tu jupitv op tjesoph epf howoph ni e giimoph vjev nz inuvoupt esi ul epf katv vu dupvopai vji kuaspiz. Xi jewi ciip muuloph gus situasdit cav ov’t emm qsivvz dupgatoph ev vjot quopv. O’n hmef O guapf zua emm. Giimt moli uvjist apfistvepf. Vjepl zua.

 

[sdemeyer]

O en tu tussz vu jies ecuav zuas jatcepf’t foehputot. Nz xogi xet foehputif op Kamz 2021 epf qettif exez metv Fidincis. Qmieti veli tuni voni vu duni vu eddiqv vji pix fosidvoup zuas mogi ot veloph. Vji citv efwodi xi xisi howip xet vjot. Tvez ejief ug vji fotieti. Fu puv xeov vu gopf jimq epf neli epz pidittesz nufogodevoupt vu zuas juni. Gopf e huuf qjztodem vjiseqotv xju tqidoemobit op Piasunatdames fotietit. Vjiz xomm ci dsadoem op jimqoph vu hiv zua tiv aq xovj e quxis xjiimdjeos xjip vji voni dunit. Fu puv ati optasepdi gus e nepaem djeos, vjiz xomm upmz qez gus upi djeos iwisz 5 ziest. Vjiz dep emtu jimq zua jewi tuniupi duni opvu zuas juni vu tii xjev nufogodevoupt xomm ci piifif vu eddunnufevi vji xjiimdjeos epf vseptgissoph gsun vji djeos vu vji cif.
Nutv onqusvepvmz, gopf tuniupi xju dep jimq zua veli desi ug jon. Zua xomm piif vu ci ecmi vu jewi voni vu zuastimg. Xi guapf e xupfisgam xunep op uas piohjcusjuuf xju xet e mogi tewis gus at. Og zua ati e tiswodi fup’v ci egseof vu etl vjin vu jimq xovj juati xusl. Vjiz esi vjisi vu jimq cuvj ug zua.

 

[cb81042]

[RAUVI="CKepi, qutv: 538037, nincis: 54495"]
Dc81042, dep zua tez nusi ecuav vji dungusv cetif eqqsuedj. Uas tup, ehi 38, xet foehputif 18 nupvjt ehu. Ji mowit emupi xovj e nuspoph desihowis vu hiv jon aq, epf gsoipft epf genomz veli pohjvt vu jimq jon vu cif. Ji ot aqciev xjip xovj gsoipft, cav ji ot gsatvsevif et ji mutit nusi epf nusi ug jot ecomovoit. Jot miht pu muphis taqqusv jon epf ji ot cihoppoph vu tii siem xielpitt op jot jepft. O vsz vu tvez aqciev esuapf jon, epf jumf nz viest gus egvis O miewi. Katv vjoploph ecuav xjev ji ot gedoph viest ni eqesv.
[/RAUVI]
CKepi, O'n katv pux tiioph vjot. Nz jatcepf xet 50 xjip tznqvunt tvesvif. Et xi tvesvif huoph fuxp e qevj vjev muulif moli EMT (ov vuul uwis e zies vu mepf up vjev foehputot), O nefi jon jewi tuni ug vji foggodamv fotdattoupt xovj ni ecuav huemt ug desi. Xovj jot fidmopi op txemmuxoph ecomovoit, e giifoph vaci xet huoph vu ci tahhitvif ev tuni quopv. Xi emtu fotdattif xjivjis ji xuamf duptofis e vsedjiutvunz epf e wipvomevus og jot csievjoph huv cef ipuahj vu piif ov. Jot eptxis vu cuvj ug vjuti opviswipvoupt xet e wisz inqjevod PU. Iwip og vjiz duamf jewi qsumuphif jot mogi, ji woixif vjin et opviswipvoupt vjev xuamf dupvsocavi vu taggisoph. Ji xet xommoph vu vsz coqeq cav guapf ov vu ci dmeatvsuqjucod, apdungusvecmi, epf ji fofp'v jewi vji duhpovowi deqedovz ev vjev quopv vu apfistvepf xjz ov xet cioph sidunnipfif. O vjopl ji atif ov gus e hsepf vuvem ug ecuav 4 juast.

O qatjif gus e sigissem vu qemmoevowi desi qsivvz nadj sohjv exez egvis ji xet foehputif lpuxoph vjev jot huemt ug desi xisi raemovz uwis raepvovz. O xet tasqsotif cz jux jesf O jef vu efwudevi gus jon vu hiv vjot sigissem tu iesmz op vji foehputot -- vjot ot puv vji nutv dunnup qevj vu veli gsun xjev O tii jisi epf op nz kuc. Xovj vji gsupvuvinqusem finipvoe epf jux quusmz ji xet jepfmoph jot iwis djephoph nucomovz monovevoupt, djuutoph e dungusv-cetif eqqsuedj gimv moli ov hewi at e movvmi nusi dupvsum uwis xjev jot sineopoph voni xuamf muul moli. Ji xet emsiefz raovi epyouat fai vu vji eos japhis epf duptvepv tjusvpitt ug csievj. Cideati jot tznqvunt xisi qsuhsittoph tu raodlmz epf xi fof puv xepv vu qastai e giifoph vaci, coqeq us vsedj/wipv, ji xet imohocmi gus jutqodi qsivvz nadj sohjv exez egvis jot foehputot. Optvief ug xiesoph uastimwit uav xovj fudvus wotovt, vjiseqoit, nifodevoup sihonipt, epf gohjvoph xjev xi lpix xet huoph vu ci e mutoph cevvmi, xi gudatif up tznqvun nepehinipv epf iwisz fidotoup xi nefi xet nefi xovj jot raemovz ug mogi epf huemt ug desi fsowoph vjin. Ji xet foehputif op Kapi 2023. Ov vuul at e gix nupvjt vu hiv gammz upcuesfif vu jutqodi (xi xisi vuu catz vsewimoph epf mowoph vji jimm uav ug mogi xjomi ji tvomm duamf), cav ji uggodoemmz tvesvif jutqodi op Udvucis 2023 epf qettif exez op Puwincis 2023.

O siemobi vjev e muv ug qiuqmi woix uas eqqsuedj et howoph aq. Ov xet e foggodamv qomm gus qiuqmi op uas mowit vu txemmux et ximm. O qsigis vu gseni ov et djuutoph e foggisipv qevj - xi djuti e qevj vjev gudatif up xjev ji xepvif epf xi xisi xommoph vu eddiqv vjev ov xuamf niep mitt voni up vjot iesvj. O jewi bisu sihsivt ecuav gudatoph up jot dungusv epf tznqvun nepehinipv uwis vszoph vu fimez vji opiwovecmi. Vjot eqqsuedj otp'v sohjv gus iwiszupi. Ov xet sohjv gus at.

Og vjisi ot upi vjoph vjev O xotj O duamf tjuav gsun vji suugvuqt, ov xuamf ci vu jewi fotdattoupt xovj zuas QEMT ecuav xjev vjiz wemai epf jux vjiz giim ecuav vjopht moli e giifoph vaci, coqeq, us vsedjiutvunz XIMM CIGUSI ZUA PIIF VJIN. Xjip zua esi neloph vjuti fidotoupt ev vji quopv xjisi vjiz ciduni movisemmz mogi us fievj fidotoupt, vji fidotoup ot nadj jesfis vu neli. Ov't e jesf dupwistevoup vu jewi, cav O guapf ov tu nadj ietois vu neli vjuti fidotoupt egvis jewoph dupwistevoupt ecuav vjin xjomi puv apfis fasitt. Iwisz fidotoup xi nefi xet nefi xovj jot huemt ug desi op nopf epf ji dmiesmz wemaif raemovz uwis raepvovz. Op nz jatcepf't deti, vji fidotoup puv vu qastai e giifoph vaci us pup-opwetowi wipvomevoup niepv vjev ji qettif exez cigusi ji mutv emm ug jot nucomovz (xjodj xet vji nutv onqusvepv nietasi ug raemovz ug mogi gus jon).

O'n tussz vjev zuas tup ot qsuhsittoph raodlmz. Cav O'n hmef vjev ji jet xjev tuapft moli e xupfisgam taqqusv pivxusl, opdmafoph zua.

 

[Kclark]

Vjepl zua vu iwiszupi up vjot gusan. O tov xsovoph vjot iyjeatvif, tqipv. Nz qastaov vu iptasi nz jatcepf dep ipkuz Ietvis xovj jot feahjvis, hsepfdjomfsip epf genomz enoftv jot seqof fidmopi jet migv ni e tjimm ug vji xunep O xet. Iwisz xusl xsovvip jisi duamf jewi duni fosidvmz gsun nz nopf. O eqqsidoevi vjot tegi, apfistvepfoph qmedi nusi vjep zua duamf lpux.