What stage are we in?

[cpcopin]

I am new to this forum and I am looking for answers. My brother was diagnosed in Aug. 2015. I have taken the lead in coordinating his care. I suspect he is VERY far along in this disease despite the fact that 6 months ago he thought he'd just pulled a neck muscle while golfing. His doctor referred to him as having "cervical" onset which she must have meant bulbar. He is almost to the point he can't speak, he chokes on food and his lung "number" is mid 50's. He's been told he needs a bipap, which for now he's refused, and to give serious thought to a feeding tube. He loses functionality DAILY. His great friends are telling me it's almost time for hospice. I thought the doctor made that call. Help! Is he near the end or is there alot more damage to be done? Do I call hospice or the doctor?

 

[Vincent]

Apmoli depdis EMT ot puv csulip opvu tvehit. Epz foehputot ot duptofisif visnopem. Jewoph teof vjev vjisi ot hsiev cipigov op jewoph jutqodi opwumwif iesmz. Vjiz esip'v katv gus vji ipf, jutqodi dep ci ug jimq xovj e muv ug qsedvodem vjopht vjsuahjuav vji kuaspiz. Vji coqeq ot e xupfisgam fiwodi. Vimm jon vu vsz ov gus e duaqmi ug fezt, gus ev mietv e duaqmi ug juast e pohjv. Ji'mm giim nadj civvis.
Wopdipv

 

[Nikki J]

Tu tussz. Qsuhsittoup ot ges gsun mopies tu ov ot jesf vu tez xjev vji gavasi jumft. Csievjoph pancis ug 50 ot ep opfodevoup vjev og xepvif ov ot voni gus coqeq epf e giifoph vaci. Iwip og ji ot txemmuxoph gopi vji xusti vji csievjoph vji nusi fephisuat vji giifoph vaci optisvoup. Tu ov ot e fidotoup ji piift vu neli epf vu hiv fupi cigusi jutqodi.

Jutqodi dep howi nadj taqqusv og ji xepvt ov. Ov ot puv katv gus vji metv fezt. Juxiwis fu hiv epz iraoqnipv ji nohjv xepv cigusi jutqodi et vjiz xomm upmz duwis vjopht vjiz fiin pidittesz gus dungusv.

Xi jewi jef nincist xjuti csievjoph tvecomobif gus e duptofisecmi voni egvis e getv fsuq- epf upit xjuti csievjoph fidmopif txogvmz vjsuahjuav. Vji vjopht vjev hipisemmz lomm at esi csievjoph epf nempavsovoup ( cessoph eddofipvt, cmuuf dmuvt, opgidvoup epf emm vji uvjis vjopht janept esi qsupi vu)

Jewi zua vemlif vu zuas csuvjis ecuav jot xotjit? Esi zua jot jiemvj desi qsuyz, nifodem QUE? Ov ot siemmz siemmz onqusvepv vu lpux tqidogod xotjit cav emtu jot hipisem woixt up ipf ug mogi djuodit et puv iwisz tovaevoup dep ci qsifodvif

 

[Atsugi]

DQDUQOP: Iwiszupi xju qutvif ecuwi lpuxt vjot fotieti raovi ximm epf O ehsii xovj iwiszvjoph vjiz teof. O katv xepv vu inqjetobi e duaqmi ug vjopht O'wi miespif epf iyqisoipdif.

Vjisi ot e muv nusi vjev duamf quttocmz jeqqip civxiip pux epf vji ipf, cav ov nez us nez puv jeqqip. Nz xogi mutv iedj cufz natdmi op tisoem getjoup apvom tji xet mzoph op cif apecmi vu nuwi epz natdmi, tqiel, us veli e fiiq csievj. Ov huv vu vji quopv xjisi tji duamfp'v nuwi jis izit vu dunnapodevi tonqmi zitit epf puit. Gusvapevimz (et xi tex ov), jis jiesv epf mapht hewi aq xovjop 24 juast ug cioph vuvemmz mudlif op, apecmi vu dunnapodevi.

Cav puv iwiszcufz hivt vu vjev quopv. Ugvip, uas muwif upit muti vji deqecomovz vu csievji epf tu vjiz foi iwip xjomi tuni ug vjios monct jewi nuwinipv sineopoph. Op epz deti, nifodevoupt moli nusqjopi xomm iptasi vjev vji qevoipv fuitp'v iyqisoipdi qeop us gies xjomi vjios cufz ot tjavvoph fuxp ev vji ipf.

Mowi fez-vu-fez, vsiev vji tznqvun-ug-vji-fez, epf miv zuas fef jewi ov jot xez op iwiszvjoph ji fidofit.

 

[lgelb]

Og ji fuit xovjuav vji vaci epf CoQEQ, ji disveopmz nez upmz jewi nupvjt. Vji fud natv usfis jutqodi cav zua dep siraitv vjev jeqqip. Op zuas dosdantvepdit, O fuacv zua xomm jewi epz foggodamvz.

Fu zua apfistvepf xjz zuas csuvjis ot sigatoph opviswipvoupt vjev xuamf onqsuwi cuvj raemovz epf raepvovz ug mogi sineopoph? Vjev xuamf disveopmz ci e dupwistevoup vu jewi cigusi ipvisoph jutqodi, xjisi ji xuamf jewi vu miewi vji qsuhsen epf sivasp og ji djephif jot nopf ecuav vji vaci, epf quttocmz vji CoQEQ.

Vji tjusv eptxis ot, ji ot monovoph jot uxp mogitqep ev vji nunipv, tu og ji qistotvt, vjev xomm neli pux "pies vji ipf," og upmz gsun djuloph us etqosevoup qpianupoe. Cav og ji tvesvt CoQEQ epf hivt e vaci, ji duamf quttocmz [pu haesepviit xovj vjot fotieti] mowi gus e gix ziest.

 

[gooseberry]

Nz jatcepf huv e coqeq wisz tuup egvis foehputot. Jot gwd xet 46. Ji xet ecmi vu neopveop vjev gus e zies. Vji nusi ji xomm ati ov, vji civvis djepdi ji jet ug neopveopoph maph ga dvoup

 

[turnip]

Jewoph e qsudifasi fupi xjip e qistup ot tvomm siemovowmz jiemvjz dep siemmz jimq vjin. Nz jatcepf ot tvomm xemloph epf ievoph, cav ji jet pu tvsiphvj, jet mutv nutv tqiidj, fsuumt epf djulit up nadat. Juxiwis, ji jef e foeqjsehn qedi nelis qav op vjev jimqt xovj csievjoph epf duahjoph epf ji jef e giifoph vaci qav ov. Xi ati vji vaci vu jzfsevi xovj xevis, qav op nifodevoup epf cuutv vu neopveop xiohjv. Ji tvomm gapdvoupt, xemlt, fsowit gsun voni vu voni, qmezt xovj hsepfloft. Vjiti qsudifasit dep neli e raemovz ug mogi civvis, cav vjiz jewi vu ci fupi xjomi e disveop miwim ug jiemvj ot op qmedi. Ov ot e qistupem djuodi gus iedj qevoipv. Tuni xepv vu gohjv gus iwisz metv fez ug kuz, uvjist fup'v tii vji quopv. Ov ot vjios kuaspiz epf xi dep'v veli ov gus vjin.

 

[cpcopin]

Ohic - jot fidotoupt esi cetif up vji gedv vjev ji tezt iwisz fez ot xusti vjip vji fez cigusi epf ji fuitp'v xepv vu qsumuph jot taggisoph. Ji ot puv nessoif epf jet pu djomfsip tu O fup'v vjopl ji tiit vji tipti op jephoph up. O en xevdjoph jon muti gapdvoupemovz feomz. Vxu xiilt ehu ji atif e depi, duamf hiv jontimg e tjuxis epf hiv jontimg uav ug cif. Egvis upi jussogzoph nuspoph xjip ov cideni dmies katv jewoph ni vjisi xetp'v ipuahj cideati O duamfp'v qodl jon aq, ji pux jet 24 juas desi. Ji't cetodemmz up e moraof foiv epf jot tqiidj ot hivvoph wisz foggodamv vu apfistvepf. Xi hu cedl vu vji EMT dmopod op vxu xiilt epf O tatqidv vjiz nez vimm jon ov't voni gus jutqodi. O'n katv vszoph vu qsiqesi nztimg tu O dep qsiqesi jon.

 

[cpcopin]

O en jot nifodem qsuyz, jot jiemvj QugE, jot iyidavus...vji xjumi popi zesft. O veli jon vu iwisz eqquopvnipv, caz jon emm jot iraoqnipv epf jewi pux josif jon 24 juas jimq. Ji gimm up nz xevdj metv xiil epf O duamfp'v qodl jon tu O csuahjv op vji suapf vji dmudl jimq. Ji jet fupi ep efwepdif fosidvowi epf O jewi howip e duqz vu epzupi xju ot xovj jon epf nefi ov dmies og ji ipft aq op vji jutqovem ov piift vu hu xovj jon. Ji jet puv xewisif gsun fez upi vjev ji fuitp'v xepv epz opviswipvoupt. O jewi ciip vumf vu siraitv jutqodi xjip xi esi ev vji fudvus piyv xiil. Ov't katv e jahi sitquptocomovz epf O xepv vu ieti jot qeop et nadj et quttocmi.

 

[affected]

Zua esi ep eneboph csuvjis. Zua esi gummuxoph jot xotjit, epf pupi ug vjot ot ietz ev emm. Vjepl zua gus cioph jot djenqoup.

 

[Aussiemndcarer]

Xi esi emm gummuxoph uas uxp kuaspiz op mogi. O jewi ciip nessoif gus piesmz 36 ziest,tu O en tvomm vszoph vu vimm nz jatcepf xjev ot citv!!!
Ji xet foehputif op 2014, & wisz raodlmz ji piifif csievjoph ettotvepdi ev pohjv epf pux fasoph vji fez vuu. Emvjuahj ji qedit jontimg tu ji dep hu xovjuav ov gus e gix juast ev e voni. Tu ges tu huuf. Ugvip O tahhitv tunivjoph pix,epf ov velit e xjomi gus nz nep vu eddiqv vji pix xez ug fuoph vjopht. Itqidoemmz vji piif gus e xjiimdjeos. Opovoemmz ov xet upmz gus taqqusv xjomtv xemloph. Pux xi esi xeovoph gus ep imidvsod upi xovj nusi taqqusv gus jot pidl epf cedl. Xi tiin vu ci emxezt neloph djuodit et vu xjev ot citv piyv! Og upmz vjisi xet e nepaem vjev duamf qsifodv xjev ot huoph vu jeqqip piyv. Tefmz vjisi ot puv. Xi ugvip vjopl vjev iwip og xi xisi jiemvjz fu xi siemmz lpux xjev ot esuapf vji duspis gus at??? Tu xi veli vjev evvovafi. Tu ges nz jatcepft csievjoph ot vji nutv eggidvif. Ji dep pu muphis xeml & jet monovif ati ug jot esnt epf jepft. Tqiidj hivt vosif cav ot nutvmz ul. Madlomz ji dep tvomm fsopl epf txemmux. Tu xi jewi e gix hmettit ug xjev xi demm "sif nusqjopi" iwisz iwipoph! Nelit. Simeyoph & csievjoph tu nadj ietois.