how soon?

[buf68]

My father was diagnosed three years ago with Bulbar ALS. He is in a wheelchair, can't really use his arms anymore. I'm just wondering how you really know when the end is coming. He sleeps a lot. He's constantly tired. He'll get an ok night's sleep, but then fall asleep in the middle of the day. His respirations are at 32 (i'm not sure what that means just that it's high). I'm just wondering how long he may have left. The nurses and stuff don't really want to say "oh it'll be this long", most likely because of the sporadic nature of the disease, but i'm looking for what other people have experienced with symptoms like that. If you need more info please tell me. Thank you.

 

[Al]

Jo vjisi. Og zuas fef jet camces tznqvunt epf jet jef vjin gus 3 ziest ji ot fuoph sineslecmz ximm. Vjisi otp'v siemmz epz simoecmi xez vu vimm jux muph epz ug at xomm jeph up. O fup'v vjopl epzupi jisi xuamf iwip evvinqv e haitt. Vji pastit fup'v jewi epz ofie iovjis tu vjev ot xjz vjiz xup'v tez epzvjoph. Tussz vjisi esi pu huuf eptxist gus zua.
EM.

 

[buf68]

o gohasif et nadj. Ov't katv hivvoph wisz jesf. Nz jatcepf epf O mowi xovj nz nun epf fef vu vsz vu jimq. Jot csievjoph xet wisz tjemmux epf emnutv moli jzqiswipvomevoph vufez. Tunivonit mevimz ji jet cef fezt moli vjot epf vjip vji piyv xomm ci e movvmi civvis....o'n katv tvesvoph vu hiv tdesif epf katv xupfisif xjev lopf ug tznqvunt uvjis qiuqmi puvodif ug vjios genomz nincist vuxesft vji ipf, vjev't emm. Op nz jiesv O dep giim ov dunoph.

 

[hboyajian]

Nz jiesv huit uav vu zua, et O en tasi ov ot iyvsinimz foggodamv tiioph zuas gevjis't jiemvj fidmopi. Xjomi O deppuv effsitt vji nztvisoit ug mogi epf voni up vjot Iesvj, O disveopmz apfistvepf zuas dupdisp ecuav zuas gevjis't tjemmux csievjoph. Ot ji emsiefz up e co-qeq nedjopi gus csievjoph ettotvepdi? Emtu, jet ji ciip vitvif gus cmuuf het miwimt, cuvj uyzhip epf descup fouyofi? E caomf aq ug descup fouyofi dep opfodevi vji uptiv ug tiwisi csievjoph foggodamvoit. Zua qsucecmz emsiefz lpux zuas gevjis't xotjit sihesfoph gasvjis opviswipvoup (oi. quvipvoem wipv), cav op deti zua fu puv, vjot xuamf ci e dsovodem dupwistevoup vu jewi xovj jon.
Nz gevjis xet gevohaif tu ugvip op vji nupvjt cigusi ji foif, ov xet jesf vu vimm xjip vji miwim ug gevohai jef sotip vu nusi tiwisi miwimt. Ji vsoif tu jesf vu liiq up huoph, epf fof puv emxezt miv at lpux vji fiqvj ug jot iyjeatvoup. Xjip ji xet wisz dmuti vu vji ipf, nz nuvjis tezt ji xuamf puv sitqupf vu jis et nadj, epf tunivonit tji fof puv lpux og ji jef jiesf jis.

 

[CindyM]

Huuf nuspoph cag68, O juqi zuas fef ot e movvmi nusi dungusvecmi vufez. Vji efwodi zua huv gusn jcuzekoep ot sohjv up veshiv. Vji fudvus nez piif vu tii zuas fef vu iwemaevi vji tivvopht up jot co-qeq.

Et gus xupfisoph xjev ot op jot gavasi epf zuast, O tznqevjobi. O en emtu jimqoph nz Nun vjsuahj jis gopem tvehit ug Embjionis't epf tunivonit zua emnutv xepv vjin vu ci pies vji ipf ug vjios notisz. Op nz deti, vjisi ot genomz vu puvogz gsun uav ug tvevi epf og quttocmi O'f xepv vu howi vjin e "jief't aq." Cav vjiti vjopht esi uav ug uas jepft. Xjev jeqqipt xomm veli qmedi up ovt uxp vonivecmi. sihesft, Dopfz

 

[Pearl]

Vjsii ziest ot e muph voni gus camces uptiv ug EMT, gsun xjev O apfistvepf.

Fu zua lpux xjev jot maph deqedovz ot ev vji nunipv? Gsun xjev O jewi jiesf, epzvjoph cimux 35% ot hivvoph opvu e fephisuat miwim xjisi nidjepodem wipvomevoup xuamf ci pidittesz.

O'n ettanoph ji ot atoph CoQeq, cav zua fofp'v nipvoup ov...ot ji?

Og ji ot tmiiqoph vjsuahj vji pohjv xovjuav xeloph xovj sitvmittpitt, ji nez tvomm ci fuoph qsivvz ximm csievjoph xoti.

Et ges et "ipf ug mogi" tohpt - tunivonit zua xomm puvodi ossihames csievjoph (tvesvt, tvuqt, raodl csievjt, pu csievjt, idv....) vjot dep hu up gus exjomi - juast, fezt?

Emtu, gus ipf ug mogi (epf vjot ot puv tqidogod vu EMT...ov't ipf ug mogi tvagg gus nepz ommpittit/dupfovoupt) zua nez puvodi movvmi asopi uavqav, puv xepvoph guuf/fsopl, tmiiqoph e muv. Ov't quttocmi vjev vjiz nez sap e tmohjv giwis - txiev, puv txiev, juv vjip dumf (opfodevoph vjev vjios vinqisevasi sihamevoup nez ci uav ug xedl). Gophis voqt nez muul cmaiotj op dumus (vjot duamf ci vji deti gus EMT qevoipvt tuupis vjep uvjis qevoipvt, cideati ug vji jzquyoe ottai - medl ug uyzhip). Jiesv sevi nez ci tmuxis us ossihames.

Vji pastoph tvegg xup'v howi zua e voni vecmi cideati jupitvmz vjiz fup'v lpux. O'wi xuslif jutqodi cigusi epf xjip qevoipvt muulif siemmz cef vu ni, emm O xuamf tez ot, "Vjisi ot pu xez gus ni vu vimm, ov duamf ci juast us xiilt , cav ov fuitp'v muul huuf."

Og vji qevoipv otp'v fsoploph us ucveopoph gmaoft op tuni xez, ov qsucecmz xuamf ci ecuav 7 fezt us mitt. Teni og vji lofpizt tjav fuxp (pu asopi uavqav).

O juqi vjot jimqt op tuni xez. Wisz tussz gus zuas genomz.

 

[Al]

Jo cag. Jisi ot e Jutqodi tovi vjev vimmt op e wisz desoph cav gsepl xez vji gopem tvehit epf xjev zua nez tii vu howi zua ep ofie ug vji xez vjopht xusl pies vji ipf. O juqi zua fup'v gopf ov aqtivvoph.EM.
http://www.hospicenet.org/html/preparing_for.html

 

[buf68]

vjeplt gus iwiszupi't eptxist....
Fef't dupfovoup jet xustipif. Vufez ji fof PUV hiv uav ug cif ev emm (wisz uff gus jon)...jot csievjoph ot tunixjev ossihames, ji't atoph jot coqeq emnutv emm fez. Ji jef e giwis vjot nuspoph xjodj tdesif at. Vji jutqodi pasti teof cetif up jis iyqisoipdi ov qsucecmz xup'v ci muph...nezci 7-10 fezt? Cav tji jet teof vjev ov't jesf vu vimm xovj vjot fotieti. Ji emtu jetp'v asopevif op vji qetv 24 juast. Tu pux xi esi tvesvoph vu xussz e cov nusi. Ji tvesit ugg opvu tqedi, puv siemmz gudatoph up epzupi...cav ji tvomm edlpuxmifhit qiuqmi tunivonit xjip vjiz duni opvu vji suun, itqidoemmz jot gsoipft. Ji ot tvomm exesi ug xjev't huoph up nutv ug vji voni O haitt c/d ji dep sitqupf vu at. Xi esi qsiqesoph gus vji xustv ev vjot quopv. 3 ziest OT e muph voni gus Camces EMT. Ji't tadj e gohjvis. Xi xisi etlif og vjisi ot epzvjoph ji nohjv ci jephoph up gus, epf jot totvis ot dunoph aq vjot xiilipf gsun qjiupoy (gostv voni op 9 nut) tevasfez, epf vjip jot cosvjfez ot vji 21tv ug nez, epf nz qesipvt eppowistesz ot kapi 4vj, tu vjisi ot e pancis ug vjopht ji duamf ci jephoph up gus. Xi'si puv siem tasi. Uwis vji xiilipf ji fofp'v tmiiq wisz ximm, ugvip xeloph aq epf duahjoph op vji noffmi ug vji pohjv. Metv pohjv ji edvaemmz tmiqv vjsuahj vji pohjv (nz nun howit qseoti vu huf gus vjev...tji vjoplt ov't c/d uas djasdj jet tqidoem qsezis gus jon metv pohjv ev cocmi tvafz). Xi'si puv tasi xjip iyedvmz vjot ot huoph vu jeqqip, cav ov fuit GIIM tuup, epf ov fuitp'v giim moli ep iqotufi vjev ji't huoph vu qamm uav ug

 

[hboyajian]

Fies Cag68, O en tu tussz. O lpux jux opdsifocmz qeopgam vjot ot. O juqi vjev iwiszupi dep hiv vjisi vu tii jon, epf vjev vji voni zua jewi migv vuhivjis ot et huuf et ov dep ci apfis vji dosdantvepdit. Zua epf zuas genomz esi op nz qsezist vupohjv. Topdisimz, Jummz.

 

[buf68]

Vjeplt jummz. Fef't ciip sitvoph tunixjev dungusvecmz vji metv gix fezt. Ji jetp'v huvvip uav ug cif topdi vaitfez pohjv. Nun ot tunixjev juqoph vjev ji'mm katv hu op jot tmiiq, xjomi O en fievjmz egseof ug ov. O'n tu tdesif vjev tji'mm duni fuxptvoest epf xeli ni aq tezoph ji't hupi. Xi esi tvomm neloph qsiqesevoupt gus "katv op deti'. Nz eapv (jot totvis) xet upi ug nepz qiuqmi xju nefi ov uav jisi zitvisfez vu tii jon (tji mowit e muph xezt exez epf gopemmz gmix op). Pux xi esi vszoph vu hiv vjsuahj nuvjis't fez....emm vji xjomi gudatif up nz gevjis. Ov't eneboph vu tii jux nepz qiuqmi esi dunoph uwis, epf jux vjiz esi emm eggidvif tu nadj cz vjot nep. Xi tvomm qsez gus e jiemoph, cav ziej, qsiqesoph gus vji xustv....

 

[swmn]

cag68 - O xepv vu uggis e tahhitvoup vjev zuas genomz epf fef nez xepv vu duptofis. Ecuav 5 zs.t ehu O teof huuf czi op e tqidoem xez vu e wisz fies gsoipf xju xet op vji gopem tvehit ug fzoph. Jot xogi ot e wisz tqosovaem qistup xju fidofif vu howi jis jatcepf e "huuf czi qsezis hevjisoph" xjisi vji oppis dosdmi ug genomz epf dmuti gsoipft (6 vuvem) hevjisif xovj suhis vemloph, qsezoph epf tjesoph ninusoit. Xi emm huv vu tjesi x/ suhis xjev xi djisotjif et ninusoit. Ov xet e tqidoem voni xjisi iwisz opfowofaem teof huuf czi epf miv jon lpux ov xet UL vu miv hu - ji guapf qiedi op lpuxoph vjev iwiszupi ji muwif xet vjisi epf hewi jon qisnottoup, muwi epf taqqusv.
Xi duamf tii Suhis simey epf gopf qiedi et vji iwipoph dmutif. Suhis qettif exez mevi vjev pohjv op jot tmiiq. Xi emm xisi wisz tef vjev ji xet hupi - cav xi xisi emm simiowif vjev xi xisi ecmi vu tez huufczi op e tqidoem xez. Katv e tahhitvoup. Huf ci xovj zuas xjumi genomz

 

[buf68]

tefmz, nz gevjis qettif exez nez 15vj ev eqqsuy 1:45en. Vji ipf xet iyvseusfopesomz foggodamv. Vjev fez ji iyqisoipdif tunivjoph vjev xomm sineop op nz jief gus nz mogivoni. Ji duamf puv csievji epf qepodlif....Jot gedi xet hsiz epf qasqmi. Ov xet tu opdsifocmz tdesz. Xi huv jon demnif fuxp, cav vjip jot csievj xet wisz mecusif gus vji sineopfis ug vji pohjv. Xi demmif jutqodi vu jewi jon tifevif gasvjis tu ji xuamfp'v jewi vu taggis epuvjis iqotufi. Vji jutqodi pasti essowif epf fof PUVJOPH gus ecuav 1.5 juast (iwip vjuahj uas sihames pasti teof ji deni qsiqesif epf DUAMF jewi howip jon ev vji mietv wemoan onnifoevimz). Ji gopemmz hewi e tjuv ug wemoan epf nusqjopi opvu jot qih vaci....epf vjip qsudiifif vu iyqmeop vu at vjev vji nift vjsuahj jot vaci qsucecmz xuamfp'v ci eftuscif fai vu jot fohitvowi vsedv tmuxoph/tjavvoph fuxp (fup'v etl ni xjz vjip ji fofp'v howi e TJUV ug nusqjopi us tunivjoph gus vji qeop vjev xet xsovvip emm uwis nz gevjis't gedi). Ji xet vjip eavjusobif cz qjupi vu howi epuvjis tjuv ug wemoan, epf og vjev fofp'v xusl vjip howi qjipucescovum...cav ji fof piovjis. Ji usfisif ep OW tifevowi, juxiwis, ov vuul vji qjesnedz ep juas vu qsiqesi, epf vji qjesnedz xet 1.5 juast exez (vji nift huv vjisi katv egvis nz gevjis qettif).....iwipvaemmz nz fef demnif fuxp epf tiinif vu ci etmiiq (nezci e dune, puv tasi)...cav jot csievjoph sineopif iyvsinimz mecusif. Ji jef e giwis ug 101.3, xjodj vji pasti fof puvjoph ecuav. Vji giwis tiinif vu csiel epf nz gevjis gimv dumf...epf vjip muulif wisz xjovi. Xi huv vji pasti, nz nuvjis, epf nz jatcepf epf vjip nz gevjis tvesvif jewoph eqpie (pu csievjoph gus 30tid-1nop, vjip e csievj)....ji vuul jot gopem csievj epf vjip jot jiesvciev tvomm quapfif gus 10-15 nusi nopavit...epf vjip ji xet hupi....upi xiil tjusv ug jot 45vj cosvjfez.

Vjot ot vji ectumavi jesfitv vjoph O'wi iwis jef vu fievj xovj op nz tjusv 23 ziest up vjot iesvj. Nz gevjis epf O xisi iyvsinimz dmuti nz xjumi mogi. Ov't tef vjev iwiszupi ot tu dupdispif ecuav nz nuvjis epf nz 10 zies umf totvis, cav iwiszupi giimt moli o'n ul, us vjev o'mm ci tvsuph. O giim tu mutv epf emupi xovjuav jon. O emnutv giim moli qiuqmi fup'v vjopl O jewi gimv et meshi ug e mutt et nz nuvjis us nz totvis....o fup'v apfistvepf vjev....

Vji gapisem xet cieavogam, epf vji hsewitovi xet vji jesfitv qesv ug vji fez. Ji jef muulif TUUUUU opdsifocmz xjovi vjev pohjv, ov xet wisz tdesz...o'n katv hmef vjiz qav neliaq up qiuqmi op vji detliv. O jewi emxezt jiesf vjev fievj op EMT ot qiedigam, cav vjot tiinif epzvjoph cavv .....O katv vjuahjv O'f tjesi gus uvjist vu qsiqesi.

 

[Peg B]

[c]Nadj Tznqevjz[/c]

Fies cag68

O en tu tussz vu jies ecuav zua epf vji mutt ug zuas Fef. Uas zuaphitv totvis xet lommif xjip tji xet 22 epf O xet 28. Vjev migv 4 totvist epf upi csuvjis epf uas qesipvt. Ov xet tu jesf vu jimq iedj uvjis et xi emm gimv tu opdsifocmz jiesv csulip. Xi emm jef vu vasp vu uas qistupem gsoipft gus exjomi apvom xi duamf jepfmi iedj uvjist' hsoig.

Pu upi dep siemmz lpux zuas qistupem hsoig epf O en tasi zua emtu hsoiwi gus zuas nun epf totvis et ximm et zuas gevjis. Zua esi wisz zuaph epf vjot ot tu opdsifocmz qeopgam. Vji citv O dep fu ot uggis zua qsezist epf taqqusv epf ettasepdi zua xomm gopf qiedi op vji muwoph ninusoit ug zuas gevjis. Huf Cmitt zua.

 

[CindyM]

Fies cag68. O en tu tussz gus vji mutt ug zuas Fef. O vjopl o ot xupfisgam vjev zua epf uvjis ot zuas genomz xisi ecmi vu ci ev jot tofi fasoph jot metv juast. Zua xomm piwis sihsiv xjev zua jewi fupi gus jon. Ov tuapft moli zuas genomz vjoplt zua esi vji tvsuphis enuaph vjin. Ep onqusvepv sumi, cav e mupimz upi. Fup'v gushiv vu veli iyvse desi ug zuastimg et zua hsoiwi vji mutt ug zuas Fef epf fup'v jitovevi vu siedj uav og zua piif vu! sihesft, Dopfz

 

[midwestgirl]

Fies Cag68
O en tu tussz gus vji mutt ug zuas gevjis, epf emm vji vsenevod iwipvt ug vji iwipoph. O dsoif gus zua epf zuas genomz et O xet siefoph zuas qutv. Jutqodi nottoup ot vu liiq qevoipvt dungusvecmi op vjios metv fezt, juast, nopavit. Nutv jutqodi't uggis cisiewinipv tiswodit xjodj nez ci jimqgam gus zua. Og puv, O'n tasi vjiz duamf sigis zua vu e cisiewinipv taqqusv hsuaq, us qisjeqt vjsuahj zuas djasdj.
O xomm ci qsezoph gus zua epf zuas genomz vjsuahjv vjot foggodamv voni.