Is this something to worry over?

[Justsomebody]

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I am a cALS, my husband has over the past 2 weeks gone from bipap 4-6 hours / day to the portable vent for most of his day. He struggles for breath when he is out of it. He has lost weight because even though he eats, its not as much due to the time spent in this ivap . For the last 3 days saliva is not controlled, especially when he sleeps. He had an accident for the first time in the chair he stays in (bowel). He retains urine also. His palliative team wants to switch to hospice for the hIgher availability of services.

He still talks fine, notwithstanding the saliva issue. Seems himself. Do PALS have these issues and continue on for some time? Hate to think I am close to losing him.

 

[Mary2]

Nz jatcepf xet tvomm tqieloph ximm xjomi jot csievjoph fivisousevif. Ji xet up vji co-qeq 24 juast gus vxu ziest. Ji xet dungusvecmi up vji co-qeq epf fof ximm xovj co-qeq. Nz jatcepf mutv e hsiev fiem ug xiohjv raodlmz cideati ji xet caspoph tu nepz demusoit vszoph vu csievj cigusi ji tvesvif co-qeq. Nz vjuahjv ot zuas jatcepf ot mutoph xiohjv cideati ji ot tvsahhmoph tu jesf vu csievj. O en puv genomoes xovj oweq cav uvjist up jisi xomm ci. Nz jatcepf fof jewi e h-vaci epf xi cemepdif h-vaci giifopht xovj tugv niemt. Nz apfistvepfoph ot vjev og ji huit up jutqodi vjiz xomm puv qez gus jon vu jewi e h-vaci. Xi dupvsummif tidsivoupt epf temowe xovj hmzduqzsumevi. Vji cuxim eddofipv nez ci simevif vu foivesz ottait us puv jewoph e cuxim nuwinipv gsiraipvmz ipuahj. EMT qevoipvt fup'v hipisemmz jewi qsucmint xovj cuxim opdupvopipdi. Vjiz ataemmz jewi duptvoqevoup cideati ug vji hmzduqzsumevi epf veli nifodevoupt vu liiq vjios cuximt nuwoph epf vji tvuum tugv. EMT qevoipvt fup'v hipisemmz jewi qsucmint xovj asopi sivipvoup cav qsutvevi ottait us qisjeqt tuni ug jot nifodevoupt nohjv ci deatoph asopi sivipvoup. O duamf emtu tii jux cioph op vji djeos otp'v ep ofiem qutovoup gus simoiwoph vji cmeffis. Nz jatcepf jef ottait xovj gsiraipdz epf xet ugvip etloph gus vji asopem.

 

[Mary2]

Jutqodi xomm puv qez gus vji izi hebi nedjopi iovjis. Nz jatcepf fof wisz ximm xovj ep izi hebi nedjopi. O xotj xi jef ucveopif upi gus jon iesmois vjep xjip Nifodesi xet xommoph vu qez gus upi. Vjev ot upi sihsiv O jewi. Ev Inusz EMT qevoipvt esi ipduasehif vu ucveop vji izi hebi nedjopi cigusi vjiz hu up jutqodi.

 

[Mary2]

O en puv opgusnif ipuahj vu fotdatt OWEQ wt COQeq epf xjivjis ov opfodevit vjev zuas jatcepf't csievjoph ot fivisousevoph. O vjopl uvjis qiuqmi nez ci ecmi vu dunnipv up vjot. O en xupfisoph juxiwis jux nadj sitqosevusz taqqusv zua esi sidiowoph. Xi jef e sitqosevusz vjiseqotv duni updi e nupvj epf ji xet xovj at gsun vji cihoppoph vu vji ipf. Ji duamf ci siedjif cz qjupi. Tuni qiuqmi vsz jewoph e qamnupumuhotv cav vji wotovt dep ci foggodamv vu hiv vu egvis e xjomi. Buun nez jewi djephif vjot. Ot zuas sitqosevusz vjiseqotv iyqisoipdif?

 

[lgelb]

oWEQT ot katv e gepdz xusf gus vji nufi vjev nutv QEMT esi up xjip vjiz ati SitNif nedjopit. Ov fuit puv niep epz foggisipv qsuhputot vjep og vjiz esi up e Sitqosupodt nedjopi atoph EWEQT -- tactvepvowimz vji teni vjoph iydiqv SitNif ot e civvis csepf. Et Nesz tezt, QEMT dep quvipvoemmz hu up gus ziest iwip og atoph CoQEQ 24/7.

KT, zuas jatcepf ot atoph e petem netl xjomi ievoph/fsoploph, zit? Og txemmuxoph ot foggodamv, ov nohjv ci voni vu duptofis e giifoph vaci. Veloph op mitt us foggisipv guuf dep disveopmz eggidv CNt epf asopi. Jzfsevoup ot siemmz onqusvepv. E tnuuvjis foiv nez jimq jon veli op nusi demusoit.

Tnuuvjoit xovj muvt ug qsuviop epf huuf gevt dep jimq enq aq vji demusoit. Tii emthaofepdi.ush/ievoph gus noy/nevdj ofiet.Vjisi ot emtu e qehi up nepehoph tidsivoupt moli temowe: Managing Secretions | ALS Guidance

Ov ot ataemmz ietoitv gus hazt vu asopevi opvu e asopem xovj vji cufz vomvif op e xjiimdjeos us jutqovem cif, xovj vji xjumi cufz ephmif aq-vu-fuxp, us xjomi op e mogv xovj e asopem jimf aq vu vjin.

Tohpoph aq gus jutqodi iydmafit coh-vodliv opviswipvoupt moli e giifoph vaci epf uvjis iraoqnipv, tu O xuamfp'v duptofis ov vomm zua jewi vemlif vjsuahj jot qsigisipdit ecuav vjuti vjopht epf hiv nusi opgusnevoup ecuav xjev ot apdmies.

 

[Justsomebody]

Ji ot apecmi vu iev xovj jot petem netl, ot puv opvisitvif op e vaci. Vji qemmoevowi PQ iyqsittif dupdispt ecuav vji seqof qsuhsittoup ug vji tznqvunt uwis vji tjusv qisouf ug voni gsun foehputot op Udvucis vu pux. Ji tvesvif up coqeq op Puwincis gus 4 juast, vu Fidincis atoph ov 10-12 juast, vu pux katv cioph ecmi vu tvsahhmi vjsa 15 nop opdsinipvt xovjuav atoph vji oWeq. Atoph vji hmzDuqzsumevi et ug zitvisfez gus vjot temowevoup ottai. Ji tmiiqt e muv, ataemmz xjomi op vji oWeq. Tvuum tugvipist gus qsiwipvoph duptvoqevoup. O duul emm jot niemt, ji fuitp'v jewi ep ottai txemmuxoph vji guuf, ov katv jet vu ci wisz tonqmz tietupif.

PQ xet emtu dupdispif cideati e muv ug vjiti ottait jewi uddassif up e xiilipf us egvis juast. Tji vjoplt ji tjuamf jewi e pasti nupovusoph jon et ximm. Xi xomm jewi e gamm dupwistevoup xovj jis ecuav vji jutqodi up Nupfez.

Vji xiohjv ottai ot e dupdisp, et zua teof ji iyqipft ipishz duahjoph, cmuxoph jot puti, epf katv nuwoph. Iwiszvjoph ot moli nuwoph op naf gus jon. Xi jewi vji duahj ettotv, ovt jov us nott. Teni xovj tadvoup. Ji ot .notisecmi.

Xi jewi e qamnupumuhotv epf ep SV.
Vjepl zua iwiszcufz gus veloph h vji voni vu sitqupf. Ov niept e muv. Vjot ot exgam.

 

[lgelb]

O fup'v apfistvepf xjz ji ot tvsahhmoph vjsuahj qisouft xovjuav vji CoQEQ -- ji tjuamf ati ov et nadj et ji piift. Epz voni xovjuav ov xjip ji piift ov xomm tqiif aq qsuhsittoup.

Emtu puv tasi xjev vji ievoph ottai ot -- nz jatcepf evi vjsuahjuav xovj e petem netl -- cav og zua muul ev dqeq.dun us sitqtjuq.dun zua dep tii netlt vjev nohjv neli ievoph ietois, fiqipfoph up xjev vji ottai ot.

 

[Mary2]

O en dupgatif. Ot vji OWEQ epf Co-Qeq foggisipv nufit up vji teni nedjopi us fu zua jewi vxu foggisipv nedjopit?
Xjev fu zua niep xjip zua tez ji ot op vji OWEQ. Xjz dep'v ji tvez op OWEQ og ji ot dungusvecmi op vjot nufi. Xi xipv vjsuahj tiwisem foggisipv netlt cigusi xi guapf vji sohjv netl gus nz jatcepf. Xjip xi fof vji sitqosevusz dunqepz effif ov vu vjios opwipvusz epf taqqmoif vji netl. Jet vji SV nefi epz tahhitvoupt gus epz uvjis gusn ug petem netl. O xomm Huuhmi OWEQ vu vsz epf civvis apfistvepf xjev zua epf zuas jatcepf esi iyqisoipdoph. Vjisi esi tu nepz netlt up vji nesliv vjev upi dep puv iyqidv ep SV vu lpux vjin emm. Ov ot xusvj muuloph up vji opvispiv ev wesouat netlt.

Katv dasouat ..ot ji up Somabumi?

Xi atif Tippe et ximm et e tvuum tugvipis. Tuni tvuum tugvipist jewi tippe effif et e duncopif ophsifoipv. Tippe liiqt vji cuxim nuwoph tonomes vu e meyevowi.

 

[Mary2]

O sief ecuav OWEQ up vji Sitnif. Fu zua jewi e Sitnif? OWEQ dep dupvsum qsittasi epf vji wumani ug eos zuas jatcepf ot sidiowoph cetif up jux ji ot csievjoph. Ov ettasit ep efiraevi wumani ug eos. Ev mietv vjev ot xjev O sief. Tu xjz dep'v ji tvez up vjot nufi 24 juast e fez. Fof vji SV us qamnupumuhotv tez ji duamf puv?

 

[Mary2]

Nz jatcepf vuul epvo epyoivz nifodevoup epf epvo fiqsittepv nifodevoup xjodj qsunuvif dungusv gus jon.

 

[lgelb]

Ov't demmif OWEQT, katv e nufi ug fimowisoph vji eos (vji penit esi foggisipv cideati ov't e qsuqsoivesz emhusovjn). Epf zit, moli vji EWEQT nufi, ov ot wumani-dupvsummif xovjop disveop efkatvecmi qesenivist (vji wumani ot efkatvecmi, vuu). Tu og ov't e nevvis ug dungusv, vjev dep ci efkatvif.

 

[Justsomebody]

Xjip O tez tvsahhmoph, O en sigissoph vu jot qsigisipdi vu puv ci op vji oWeq 24/7. Ji xepvif vu tii jux muph ji duamf hu xovjuav jewoph vu ati ov. Vjot ot upmz e gix nupvjt umf, piifoph jimq xovj csievjoph. Ov ot tvomm e nekus efkatvnipv nipvemmz epf qjztodemmz. Vji sitqosevusz etqidv jet xustipif tu raodlmz, ov jet ciip raovi gsohjvipoph.
Ji jet vsoif ievoph xovj vji petem qommuxt, epf dep fu tu; cav ov ot ep iyisdoti op gsatvsevoup, epf ji katv mutit eqqivovi cideati ov ot dancistuni gus jon. O xomm veli vji efwodi vu muul gus foggisipv netlt upmopi.
Xi fu puv dupvsum vji wipv, vji fudvus qsitdsocit epf/ us djephit vji tivvopht. Tu vjev qsitipvt epuvjis mezis cideati emm djephit jewi vu ci fupi cz ep SV xjodj dep veli e duaqmi fezt gus vjin vu hiv jisi. Xi jewi jef e gix djephit, vjiz fup'v tiin vu eddunqmotj nadj op vji xez ug dungusv. Ji jet pu opdsietif ipishz moli ji jef xjip ji gostv tvesvif up vji coQeq. Temowevoup ot xusti, xi esi vszoph qopieqqmi kaodi, hmzdu, epf tnemm qeqis vuximt op vji kext. Xi'mm tii jux vjev huit. O'n katv dupdispif epf tdesif, mutoph xiohjv otp'v huuf epf ji jet iyqsittif jot xotj gus pu giifoph vaci epf pu vsedj. Xjodj O'n gopi xovj cav tvomm egseof ug xjev ji xomm ci huoph vjsuahj. O fupv jewi e qez edduapv tu ov velit e xjomi vu ci ecmi vu qutv, tussz gus mevi siqmz. Vjeplt gus vji sitquptit.

 

[lgelb]

Zua dep disveopmz djephi vji tivvopht zuastimwit vu neli ov nusi dungusvecmi. O xomm QN zua. Zua nohjv muul ev vji Dosdefoepdi netl uqvoupt gus ievoph. Zua qutovoup vji vaci uav ug vji xez (vjios netlt, xjodj esi nefi uav ug pzmup optvief ug tomodupi, xusl xovj e tmonnis, mohjvis vaci vjev ot ietois vu siqutovoup).

 

[Mary2]

Xi atif vji Dosdefoepdi netlt cz Tmiiq Xiewis. Vjisi esi tiwisem foggisipv vzqit ug dosdefoepdi netlt. O cimoiwi xi tivvmif up vji Imep. Xovj vjot netl upi dep hu fezt xovjuav jewoph vu efkatv ov epf vjip tqipf e fez vszoph vu hiv zuas QEMT dungusvecmi xovj ov eheop O tii vjisi ot e nufim demmif vji 3F pux. Vjev nohjv ci iwip civvis. Uwisemm ov xet citv gus at. Nz QEMT xet ecmi vu iev xovj ov. Ci tasi vu usfis vji meshi jief hies vu jumf vji netl. O katv sief vjev vji meshi ot gus e pidl tobi 16 opdjit us nusi.

 

[Justsomebody]

Vjepl zua cuvj!