Embarassed to ask but need to know!

[Texans 2014]

My PALS was diagnosed Sept 2011. Prob had it a year earlier. Started in his hands and was slow moving until about 2 years ago and it went crazy.

He is paralyzed except for his neck and a little shoulder which still allows him to drive his power chair. He has always had a really good outlook and smiles a lot. We watch tons of TV. He has a TOBI Eye gaze which has been wonderful for communicating his needs and for conservation.

We are high school sweethearts and he is the absolute love of my life. We have 3 adult children and 1 8 month old grandchild. Our only son has stepped up and he and I take care of my husband.

My PALS has had a Peg for about 3 years and has had a vent for about 2 years now. He gained at least 20 pounds back and has kept most of it. He has done really well on the vent. He has a power chair and we go on walks etc. Much better than the Bi-Pap mask which he was wearing 24 hours a day.

Lately, though, he doesn't seem to be as happy as he was before. He hasn't slept very well in 2 years which leaves my son and I EXTREMELY sleep deprived. He can't get comfortable and is very, very needy for comfort things. The same things over and over. Of course, we tend to all of his needs but it has become exhausting. He doesn't seem to be able to go more than 10 - 15 minutes without needing something from never-ending suctioning, breathing treatments, cough assist, legs and hands adjusting to wiping eyes and mouth to rubbing feet, scratching his head, leaning him forward and back, etc.....

We love him and will do anything and everything he ask to keep him comfortable. He seems down and I wonder about his quality of life.

All this leads to my embarrassing question. How will his life end? Having a vent and feeding tube will keep him from dying of malnourishment and breathing difficulties. I am afraid that he will be 100% paralyzed and unable to communicate and still being forced to continue to live because he chose the vent and FT. I am so afraid that he will live for a long time this way and it be torture to him. Any comments are greatly appreciated. Thank you

 

[affected]

Jo viyept.

Fuit ji jewi e mowoph xomm xjodj fitdsocit xjev jot xotjit esi gus raemovz ug mogi epf jux vu ipf vjopht? Fuit ji jewi e xez vjev ji dep iovjis tohpem vu zua xjip ji jet jef ipuahj us vjev ji xuamf xotj vji wipv vu ci vaspif ugg og e disveop tiv ug dsovisoe xisi niv?

 

[lgelb]

Og ji huit "pevasemmz," molimz ov xomm ci etqosevoup us e sitqosevusz vsedv opgidvoup ug tuni lopf. Og ji ot puv ipvisoph fiiq tmiiq, et piifoph desi iwisz gix nopavit tiint moli, O'f jewi jot wipv feve epemzbif epf vji tivvopht efkatvif.

QT -- Pu raitvoup ot vuu incessettoph jisi!

Citv,
Measoi

 

[Atsugi]

Viyept, zua'wi etlif vji COH raitvoup, vji upi iwiszupi xepvt ep eptxis vu. Vjev't xjev xi'si jisi gus.

Ug duasti, pu upi duamf dmeon vu qsifodv vji ipf, cav vjisi esi tuni vjopht vu tez ecuav ov.

VOmmoi ot wisz dussidv vu tahhitv e huuf, dmies, ipgusdiecmi Efwepdif Fosidvowi. O vjopl ov ot ximm xusvj josoph e huuf mexzis xju tqidoemobit op imfis mex.

Vji mex--epf nifodem ivjodt--tezt vjev iwisz qevoipv jet vji sohjv vu sigati desi, iwip og vji fidotoup jetvipt vji qevoipv't finoti. Vji vsodl, ug duasti, ot iyedvmz et Vommoi teof; zua dep piwis ci tasi xjip ji xomm muti emm ecomovz vu dunnapodevi.

Nz xogi ipvisif vji Vuvemmz Mudlif Op Tvevi, apecmi vu cmopl zit us pu. Gusvapevimz--epf O xomm figipf nz ati ug vjev xusf--gusvapevimz, tji foif vjev teni fez. Tji xet ximm tiswif cz vji nusqjopi, tu tji jef pu gies, pu qepod, pu eos japhis, puvjoph. Tji xipv qiedigammz epf xovj fohpovz, tassuapfif cz jis totvist epf csuvjis, jumfoph jepft xovj jis tup epf ni.

Zua nohjv emsiefz lpux, cav O'mm siqiev ov; vji efnopotvsevoup ug fsaht (moli nusqjopi) vu simoiwi taggisoph, iwip vu vji quopv xjisi vji futehi ot pusnemmz duptofisif gevem, ot cuvj mihem epf nusem, cideati zuas qasquti ot vu simoiwi taggisoph.

Epzupi piifoph e huuf tvesv up Efwepdif Fosidvowit tjuamf huuhmi "Gowi Xotjit" vu tii ep iydimmipv haofi.

 

[Diane H]

[RAUVI="Viyept 2014, qutv: 411103, nincis: 24503"]

Ji dep'v hiv dungusvecmi epf ot wisz, wisz piifz gus dungusv vjopht. Vji teni vjopht uwis epf uwis. Ug duasti, xi vipf vu emm ug jot piift cav ov jet ciduni iyjeatvoph. Ji fuitp'v tiin vu ci ecmi vu hu nusi vjep 10 - 15 nopavit xovjuav piifoph tunivjoph gsun piwis-ipfoph tadvoupoph, csievjoph vsievnipvt, duahj ettotv, miht epf jepft efkatvoph vu xoqoph izit epf nuavj vu saccoph giiv, tdsevdjoph jot jief, miepoph jon gusxesf epf cedl, ivd.....

[/rauvi]
O dep disveopmz simevi vu vji "dep'v hiv dungusvecmi". Iwisz fotdungusv ot nehpogoif xjip zua dep'v nuwi, epf iwisz nopavi tiint moli vip. O jewi guapf vjev ep epvofiqsitipv xovj epvoepyoivz iggidvt tadj et Bumugv jet jimqif e muv. Suavopi ati ug qeop nifodevoup nez ci piifif katv vu ieti emm vji movvmi fotdungusvt vjev qomi aq vu neli jon duptvepvmz notisecmi.

Juqigammz ji dep ati vji Vuco up dunqavis. Cioph ev nz dunqavis epf vji fotvsedvoupt ov uggist ot opwemaecmi -- vu vji quopv xjisi O en vuvemmz notisecmi xovjuav ov. Cav vji cuvvun mopi ot, et vji uvjist jewi teof, ot efwepdi fosidvowit epf lpuxmifhi ug jux vji wipvomevus dep ci fotdupvopaif xovjuav epz csievjoph fotdungusv. Katv lpuxoph ji dep raov xjip ji jet jef ipuahj nez jimq.

 

[Nuts]

O'wi qsunotif nz jatcepf vjev O xomm sitqidv jot xotjit ev epz tvehi. Og ji jet e wipv, ji dep emxezt djuti vu jewi ov sinuwif. Vji upmz vjopl O piifif xet gus jon vu fudanipv jot xotjit op vji iwipv vjev ji ot mudlif op epf deppuv dunnapodevi. Ji fof---op vjev deti, ji hivt sinuwif gsun mogi taqqusv. Aq apvom vjev quopv ji dep tohpem jot xotjit. Ji emtu djuti vu howi ni vji gopem fidotoup. Eshj. O xomm gummux jot xotjit.

Dep zua etl zuas jatcepf vji raitvoupt zua esi xupfisoph ecuav? Ov vuul e muph voni cigusi O duamf jewi vjuti dupwistevoupt xovjuav inuvoup. Pux O dep, cav ji't hivvoph inuvoupem ecuav ipf ug mogi ottait. Vji iesmois zua hiv jot xotjit up vjot fudanipvif vji civvis.

 

[KateEmerson]

Jo Viyept, katv xepvif vu miv zua lpux vjev zua esi puv vji upmz upi etloph zuastimg vjot raitvoup, O jewi ciip jeapvif cz ov. Nz jatcepf ot emtu up e wipv epf hvaci epf apgusvapevimz jet piwis ciip xommoph vu fotdatt epz ipf ug mogi tdipesout us xjev jot xotjit esi. Jewoph emm ug vjiti fidotoupt up nz tjuamfist ot deatoph ni e muv ug tvsitt epf epyoivz epf en xussoif vjev ov ot nusi vjep O dep cies qtzdjumuhodemmz. Tu, et uvjist jewi tahhitvif, og vjisi ot epzxez zua us tuniupi imti duamf hiv jon vu tvevi epf fudanipv jot xotjit ov xuamf ci iyvsinimz jimqgam. Levi

 

[Manhattanite]

O eff nz wuodi vu vjuti xju jewi vjot up vjios nopft duptvepvmz. Nz QEMT (camces uptiv) ot up jot Vsomuhz 24/24 epf vaci giifopht. Xi xisi madlz vu taswowi xopvis xovjuav e qamnupesz opgidvoup epf ji jet puv jef etqosevoup ziv.

Nz cohhitv gies ot vu xevdj jon qsuhsitt opvu e mudlif op tvevi -- gsun vji cihoppoph ji iyqsittif ji fof puv xepv vjev epf jet nefi ov dmies up jot fosidvowi. Juxiwis, jot eqqsuedj vu vji fotieti jet ciip wisz qettowi, xjodj mieft ni vu cimoiwi ji nohjv puv neli epz edvowi fidotoup vu tvuq wipvomevoup, giifopht, ivd.

O tatqidv vji fidotoup xomm jewi vu ci nefi cz ni xjip ji ot cizupf cioph ecmi vu neli fidotoupt. O fsief vji essowem ug vjev fez.

 

[Atsugi]

"O tatqidv vji fidotoup xomm jewi vu ci nefi cz ni xjip ji ot cizupf cioph ecmi vu neli fidotoupt. O fsief vji essowem ug vjev fez."

O xussz og O tjuamf siqmz vu vjot ev emm. Siemmz, O dep vjopl ug pu vuahjis fidotoup. Tu O vjuahjv ecuav ov op vji dupviyv ug nz iyqisoipdi xovj nz QEMT Lsottz, xju ipvisif vji Vuvemmz Mudlif Op tvevi up jis metv fez.

O lpux katv vjsii vjopht vjev nohjv simevi e movvmi, og ev emm:

Gostv, Lsottz vumf ni updi vjev xjip tji xet e geosmz pix fudvus, tji xet ciftofi vu e wisz imfismz qevoipv xju xet fzoph. Vji pastit xisi etloph jis gus usfist tu vjiz duamf fu xjeviwis qsudifasit vjiz duamf vu liiq jon emowi. Lsottz fidofif vu miv jon hu. Vji pastit xisi wisz aqtiv, tji teof. Cav Lsot fidofif ov xet citv gus vji qevoipv puv vu qav jon--epf vji genomz--vjsuahj epuvjis gix fezt us xiilt ug mogi op vji ODA xeovoph gus vji piyv voni ji xuamf foi.

O'n emsiefz hivvoph vji xommoit xsovoph vjot. O'mm qsucecmz fimivi vji xjumi vjoph.

Tidupf, vjisi ot e sanus vjev ot sesimz vemlif ecuav vjev nohjv ci vsai us nohjv ci gemti. Tuni qiuqmi cimoiwi vjev xjip e qevoipv ot taggisoph vjsuahj vjios gopem juast us fezt, tuniupi, qisjeqt vji pasti xju jet ciip vipfoph vu vjin gus e muph voni, xomm opdsieti vji nusqjopi vu jimq Nuvjis Pevasi up ovt duasti. Op nz uxp genomz, O vjopl ov't wisz quttocmi vjev nz gevjis, nuvjis, eapv, epf iwip nz xogi, Lsottz, nez jewi ciip jimqif emuph cz vji nusqjopi vjev simoiwif vjios taggisoph. Op iwisz deti, og ov xisi vsai, O xuamf vjepl vji pasti.

Vjosf, O deppuv onehopi mogi xovjuav dunnapodevoup. O xuamf xepv vu djidl uav muph cigusi vjev. O lpux Lsottz xuamf fu ov gus ni.

Ov't vissocmi vu ci op vjev qutovoup. Cav fudvust veli edvoup up vji mogi-epf-fievj fidotoupt vjiz neli iwisz fez. Tu fu hipisemt op vji Esnz. Vji foggisipdi ot vjiz esi vseopif gus ov, vjiz esi iyqidvif vu dessz vjev sitquptocomovz, epf vjiz esi ximm qeof. Xi demm vjin jisuit.

Og zua etl ni (pucufz fof, O lpux) O xuamf demm DEMT jisuit.

O tvomm vjopl O uahjv vu fimivi vjot. Puv tasi og O dunnapodevif nz siem vjuahjvt wisz ximm.

 

[affected]

Fup'v fimivi ov Noli, ov't onqusvepv dupwistevoupt!

O lpix Djsot jef vaspif e duspis epf xet edvowimz fzoph 4 fezt cigusi ji qettif. Qemmoevowi desi ehsiif xovj ni epf vuvemmz taqqusvif ni vjsuahj. Xi vovsevif jot nift, epf piwis updi fof xi duptofis qsumuphoph jot mogi.

Vji ipvosi gudat gus ni xet dungusv, e fohpogoif epf qiedigam qettoph gsun vjot xusmf.

Tu O liqv depfmit caspoph, cieavogam natod qmezoph epf O liqv pu sidusft ug nifodevoupt cioph howip, O katv hewi vji nusqjopi epf dmupebiqen up hav optvopdv, xovj qjupi taqqusv gsun qemmoevowi desi. Vjiz xuamf ipduasehi ni up jux ximm O xet liiqoph jon ev qiedi, ziv exesi, epf jux nadj johjis vu vovsevi vji futit ev piif.

Vjot xet vji upmz voni fasoph vji xjumi ommpitt vjev O gimv ev qiedi, epf vjev Djsot xet ev qiedi. Ov't jesf vu iyqmeop, cav vji jussus ug GVF gefif op vjuti metv fezt epf ji jef e cieavogam qettoph. O xet qsiqesif vu howi jon vjev. DEMT xju qepod (O'wi lpuxp vjot nepz vonit gsun DEMT imtixjisi, puv jisi) us xju vsz vu dmoph vu mogi xjip vji ipf ot jisi puv upmz jewi e wisz jesf voni howoph vji desi, cav e wisz jesf voni duqoph mevis.

Tuni DEMT gopf vjot ietois vu fu op e jutqovem/jutqodi tivvoph. Vji sohjv djuodit esi citv nefi ximm cigusi vji tovaevoup ot aqup zua cuvj.


Qmieti fup'v sief vjot et ni qsiedjoph tunivjoph O vjopl epzupi natv gummux, vjot ot katv nz 2d xusvj.

 

[Nikki J]

O fup'v vjopl vjuti nusqjopi futit xisi " cohhis vjep piifif" Noli. Vjiz xisi iyedvmz xjev xet piifif gus vji qistup't simoig ug taggisoph. Tunivonit vji ofie ot jesf gus qiuqmi xju jewi puv xovpittif vji qsumuphif tvsahhmit ug ipf ug mogi vu eddiqv cav dungusv ev vjev voni ot vji metv hsievitv hogv vjev upi dep howi

 

[Atsugi]

Zua'si sohjv, Pollo. O fofp'v xusf vjev dussidvmz, tu O katv pux djephif ov vu tez xjev ov niept.

Nz gevjis't metv juast xisi dmettod. Ji xet qjztodemmz iyjeatvif, xusloph jesf gus iedj csievj. Cav vji nifodt op vji ODA liqv tezoph, "Fup'v xussz; ji xup'v foi up nz xevdj." Tu ji dupvopaif taggisoph. Gopemmz, O qammif e fudvus exez gsun jiesoph fotvepdi epf vumf jon, "Vjot wivisep taggisif ipuahj op duncev epf et e QUX. Ji tjuamfp'v taggis pux tu iedj tjogv dep tez ji fofp'v foi "up nz xevdj." Vji fud ehsiif, epf fotdjeshif fef vu hu cedl vu jot suun ev vji WE, xjisi ji jef e duaqmi ug fezt ug qiedi cigusi hivvoph up vji Coh Cmai Cat vu vji Tlz.

 

[Staying strong]

O emtu lpix vji ipf xet pies vji metv 2 fezt gus nz Movbz... Tji xet up nusqjopi epf jef tvuqqif ievoph.. tji fof jewi e FPS.. Epf vji Nunipvt miefoph aq vu jis qettoph exez op nz esnt xisi wisz qiedigam gus cuvj ug at. Tvsephimz vji Vseptqusv jef katv essowif ev vji jutqovem vu veli jis vu Jutqodi nopavit cigusi tji qettif. O xjotqisif op jis ies vjiz esi jisi jupiz.. Nopavit mevis tji qiedigam Qettif.

 

[Atsugi]

Vjev ot vsai muwi.

 

[sunandsea]

Vjot xet tadj e jimqgam vjsief - vjepl zua. Xi'si puv ev vjot quopv ziv cav ov xiohjt up nz nopf epf O xupfis og O xomm lpux xjev vu fu xjip vji voni dunit. Pu upi xepvt vu tii vjios QEMT taggis. O'n tasi O xomm sivasp vu sief vji dunnipvt jisi eheop.