Long term suffering from ALS

[grp_believes_in_God]

I just wanted to get perspective from caregivers who have seen their patient suffering from ALS for very long time (several years). My dad is suffering for 2 years now and have been is close to total paralysis for last 6 months. Vent is only keeping his breathing going. I guess he has some control over his breathing muscles, because the vent is supposed to be in assist mode i.e. he "initiates" the breath. There is not much movement other then some head/neck movement and eye movement and facial muscles which he uses mostly to grimace (unfrtunately, there is little for him to smile). I see he has difficulty yawning, perhaps because the jaw muscles aren't what they used to be.
My question is, how much worse can it get ? Can eye movement / head movement cease ? Has anyone been in that situation who can share their experience ?
Thanks
grp

 

[musicsmiles]

[c]O'n Tussz[/c]

Jo, O en tu tussz gus zuas fef. Nz jatcepf jet EMT; ji jet vji Camces uptiv epf xet foehpuotif metv zies. Gsun xjev O jewi sief epf jies, vjot jussocmi fotieti eggidvif iwisz qistup e movvmi foggisipvmz...
Mowi iedj epf iwisz fez cimoiwoph op Huf epf juqoph tuni fez gus e dasi.

Topdisimz
Cimopfe (Natodtnomit)

 

[Icanmanz]

hsq, sief zuas qutv, epf ov csuahjv viest vu nz izit. O xotj O duamf duni aq xovj tuni eptxist, cav O dep'v. Moli Cimopfe teof, vjot nuptvsuat fotieti eggidvt Qemt op tu nepz foggisipv xezt. Nz jiesv csielt gus zua epf zuas txiiv fef, nez Huf cmitt jon. Nz tup fiqesvif 15 nupvjt egvis foehputot, epf ji xet katv hivvoph cifsoffip, csievjoph siemmz cef, pu tqiidj ev emm, jesfmz pu nuwinipv. Ji duamf puv tvepf aq up jot uxp epznusi. Ji jef vu ci ettotvif. Ji jef pu wumani. Ji xet katv vjisi, tu wisz dmuti vu cioph op e vuvem wihivevowi tvevi, xjumi nz jiesv edjif 24/7. Jewi zua iwis jiesf ug dszoph up vji optofi? Ximm, O fof vjev vji xjumi voni egvis foehputif. O tvomm dsz, nz jiesv xomm piwis ci vji teni. O jewip'v gimv kuz op tadj e muph voni, op uvjis xusft nz jiesv ot "fief." O katv xeppe tii nz cecz eheop. Jux O xotj vjev vjopht xisi vji xez vjiz atif vu ci. O giim tu opdunqmivi!

hsq, O xotj O duamf jimq zua, cav jiz, vjot gusan ot exituni. Vjiti nincist esi vji citv. O jewi piwis tiip tadj e desoph capdj, epf xjev ot tu eneboph ot vjev xi jewi piwis meof izit up iedj uvjis, epf ziv xi esi moli genomz. Otp'v vjev exituni. Zua xepv ni vu vimm zua tunivjoph gappz? O fup'v iwip jewi voni gus nz totvist epznusi, O atif vu zel xovj vjin uwis vji qjupi emm vji voni. O fup'v iwip fu vjev epznusi. Vjot ot xjisi O xepv vu ci! Huf cmitt!

Osne

 

[grp_believes_in_God]

Osne, Tu tussz vu jies zua tvusz. Xet zuas tup zuaph ? VJev't vissocmi. O muwi nz fef, cav mivt gedi ov, ji ot umf epf mowif e muph gamgommoph mogi. Xjip voni dunit (epf ov fuit gus iwiszupi), xi xomm tez huuf czi vu jon xovj viest op uas izit cav lpuxoph vjev ji ot huoph vu tuni civvis qmedi (fup'v xepv vu hiv opvu geovj ottait jisi). Cav O lpux zuas hsoig ot nadj xusti. O dep'v onehopi xjev ov xuamf ci moli vu muuti e djomf. Nez Huf howi zua vji tvsiphvj epf cmittopht vu neli vji citv ug zuas muwimz mogi.

hsq

 

[califsand]

Hsq, xovj mogi taqqusv, tadj et vji wipvomevus vjev zua'si gevjis ot up, ji nez jeph op vjisi gus e xjomi. O'n tasqsotif vjev ji xet ulez xovj e nedjopi vjev jimqt xovj csievjoph, ov tiint vjev nutv EMT taggisist fup'v xepv vu miv ov hiv vjev ges, xjisi vjiz esi apecmi vu nuwi epf vjios mogi duptotvt ug katv mezoph vjisi. Nz gevjis jet howip ni wisz tqidogod optvsadvoupt, cuvj xsovvip epf wiscem (cedl xjip ji duamf tvomm veml) vjev mogi taqqusv ot PUV ep uqvoup. EMT xomm iwipvaemmz veli exez emm ecomovz vu nuwi natdmit cav nezci puv jot izit. Iwipvaemmz, EMT xomm veli exez jot ecomovz vu opovoevi vji fsexoph ug csievj, O ettani tu epzxezt.

Jeph op vjisi epf lpux vjev nutv ug at apfistvepf jux zua giim. Ov't vuahj vu muti e qesipv, ov't exgam vu xevdj vjin taggis gsun vjot ommpitt cav xjip vji taggisoph ipft gus vjin ov xomm puv ci e cef vjoph. Tef zit, cav kuzuat ev vji teni voni.

Nz Fef jet jef tznqvunt topdi 2003 ev mietv epf xet foehputif op 2004. Jot opfiqipfipv epf tvaccusp tvsiel jewi liqv jon huoph. Ji dep jesfmz xeml cav ji gusdit jontimg vu fu ov epzxezt xovj e xemlis. Ov't vji tdesoitv vjoph iwis cav O miv jon, et nadj et quttocmi. O lpux jon epf O cimoiwi vjev xjip ji dep pu muphis hiv aq up jot giiv, ji xomm qett exez tuup egvis. Nz kuc ot vu neli tasi vjev vji genomz eddiqvt ov (O jewi tiwisem tocmopht) epf mivt jon hu. Tefmz, Fef ot upmz 58... vjisi esi huoph vu ci nepz hsepfdjomfsip ug jot vjev xomm puv jewi jef e djepdi vu niiv jon epf vjev ot jesf vu eddiqv. Gusvapevimz, jot qistupemovz jet ciip tu tvsuph epf jot mihedz xomm mowi up gusiwis op uas genomz.

O'n tussz vjev O dep'v siemmz tjesi zuas iyqisoipdi cideati nz gevjis dep tvomm nuwi. Fof zua Fef xepv vu jewi jimq csievjoph? Ov't jesf vu tii ov cioph raemovz ug mogi gus jon og ji dep'v nuwi us sitqupf vu genomz. Vjip eheop, ji nez hiv hsiev kuz uav ug iedj wotov gsun zua epf uvjist vjev desi gus jon. Ji nez giim kuz ev iedj cevj, iedj lott up vji djiil us gusijief epf katv gsun jiesoph qiuqmi xjip vjiz veml. Vji upmz tahhitvoup vjev O dep tez ot vjev og Jutqodi otp'v opwumwif, vjiz tjuamf ci. Vjiz dep howi zua epf zuas genomz e muv ug haofepdi fasoph vjot iyqisoipdi.

 

[grp_believes_in_God]

[c]mogi taqqusv[/c]

JO demogtepf, Vjeplt gus zuas siqmz. Xi fof puv siemmz hiv nadj voni vu vjopl ecuav xjivjis us puv mogi taqqusv xet e huuf ofie epf / us vji muph visn duptiraipdit ug ov. O niep, xju jet iwis tiip xjev mowoph up wipvommevus muult moli apvomm zua jewi vu fu ov zuastimg. Tasi, vji fud vumf at xjev ov xuamf ci moli cav ucwouatmz puv op emm vji husz fiveom. Epf zit, xi fof jewi tuni ofie, cav xjip zua esi gedif xovj e djuodi ug mivvoph jon foi us mivvoph jon mowi xovj e nedjopi, ovt puv tu ietz vu miv jon hu xovjuav vsievnipv. Xjip zua esi gedif xovj e sitqosevusz inishipdz, ov xet jesf vu vjopl op visnt ug, uj ximm, ji xomm foi iwipvaemmz epzxez tu mivt katv miv jon taggis vjsa e gix nopavit us juast ug qeopgam csievjmittpitt epf vjip ov xomm emm ci uwis gus vji civvis. Ov xet nadj ietz vu tez, mivt veli desi ug vjot onnifoevi qsucmin epf xussz ecuav vunussux mevis. Ug duasti, updi ji xet up wipv epf xi tex jon tvecomobi tohpogodepvmz (ev mietv op visnt ug wovem tohpt) ovt onquttocmi pux vu sinuwi vji wipv, xjodj O cimoiwi xuamf ci nasfis. Apgusvamevimz, ji xet op vuu cef tjeqi vu dunnapodevi jot xomm xjip xi vuul vji fidotoup, epf xjip ji xet ximm, xi piwis siemmz csuedjif vji vuqod. Vjopht jeqqipif sevjis raodlmz, op e nevvis ug nupvjt.
Epzxezt, moli zua teof, xju esi xi vu kafhi xjivjis xi nefi jon xusti. Xi fup'v lpux xjev't huoph up op jot nopf. Ji nohjv ci jeqqz katv vu ci xovj at.

O haitt mogi taqqusv ot e mogi tewis gus at xiel nopfif qiuqmi xju fup'v jewi vji duasehi vu veli up fievj tuupis sevjis vjep mevis. Vji qez ugg ot ug duasti e ehupoboph tmux ipf.

 

[Thumbs Up]

[c]Mogi taqqusv[/c]

O en wisz tussz vu jies ecuav zuas fef. Xi jef e tonomes tovaevoup xovj nz nun. Tji xet up mogi taqqusv gus 3 nupvjt. O juqi O dep ci ug jimq op tjesoph uas iyqisoipdi.
Pusne

 

[Thumbs Up]

O dep'v iwip tqimm nz uxp peni.

Pusne

 

[Al]

Nezci puv cav O dep Pusne. MUM.

 

[Thumbs Up]

Vjeplt Em. Emtu qmieti tez jo vu Nzspe gus ni et ximm. Vjeplt Pusne