Question about life if a cure is ever found.

[Texans 2014]

It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I are constantly getting up and down during the night so we never, ever get enough sleep. We have no help. No secondary insurance, no VA, and no one wants to learn how to do breathing treatments, cough assist, etc. I get it. We can't work because he needs 24 hour care. Have run out of money and live solely off of my PALS SS disability (thank god he gets that). We do get $180 month in food stamps which has helped a lot. We don't qualify for anything more.

My sons life is passing him by. My PALS has been at this level for several years now. His friends are getting married, having kids, careers, and having fun at 28 years old. I see my son getting annoyed and feeling that he doesn't have a future. I keep telling him to go get a job, even if its PT but he says that it would be a death sentence to me by taking on 24/7 needs of my PALS.

Don't get me wrong. My son and I love our PALS but it is becoming more caregiver and less loved one. It is so difficult. We do this day in and day out and frankly I don't see much of a future for myself either. I don't see how this ends and I can't see my son and I doing this for 5, 10, 15 more years. We are exhausted!

He absolutely will not consider going to a home nor do we want him to.

He is holding out for a cure! Which leads me to my question. When they do cure ALS (and they will someday), will his body recover? Will the motor neurons repair themselves? I have tried to research this. I saw where with some other diseases, the nerve endings break where there is no chance of repairing but in ALS nothing is broken so it may be possible to regenerate muscles.

I don't want to give him false hope but I also don't want to discourage him if it is possible. Does anyone know the answer? If its not possible, I want him to know that. We are Christians and know that anything is possible but we are also realist and want to know the truth about this disease. If there was a cure tomorrow, is it too late to benefit my PALS?

I hate that I am going to post this. I don't want anyone to think that we don't love our PALS. We love him so much. This disease is H O R R I B L E ! We are high school sweethearts and have been together over 40 years but I am breaking down and don't know what to do.

I know that some have posted before that my son will be so proud of himself later and that he will get through this but I am ready for him to start living his own life. He deserves this. He is becoming bitter and so am I,


Thank you for listening...…………..

 

[affected]

O'n tu tussz, gus cuvj zua epf zuas tup.

O dep'v eptxis zuas raitvoup - O fuacv vjisi xuamf ci nadj vsai siduwisz egvis ziest ug gamm qesemztot, cav O fup'v lpux og epzupi lpuxt vji eptxis vu vjot.

O xuamf piwis xepv vu tii nz djomfsip muti vjios citv ziest gamm voni desoph. Ziq hsiev iyqisoipdi og vjiz fof vjot gus e zies us vxu. Cav et zua tez og vjot huit up gus epuvjis 5, 10, 15 ziest ...

O deppuv iwip cihop vu onehopi zuas iyjeatvoup.

 

[Nikki J]

Pu upi dep lpux. Xjip etlif vjot op nusi hipisem visnt Nisov Dafluxodb ug Nett Hipisem xju ot e miefis op vji EMT xusmf teof vjev vjisi xuamf ci qsidifipv et qiuqmi xovj qumou xjodj ot e nuvus piasup fotieti fof siduwis ugvipraovi ximm.

Tji figopovimz fof puv tez disveopmz qiuqmi duamf siduwis katv ov xet vjiusivodemmz puv dunqmivimz onquttocmi. O xuamfp’v duapv up ov qistupemmz

 

[KarenNWendyn]

Vjuahj pucufz siemmz lpuxt vji eptxis, O vjopl xi dep neli tuni ettanqvoupt.

Op EMT, et nuvus piasupt foi, vjiz esi iwipvaemmz siqmedif cz tdes vottai us tdmisutot. Esiet ug vji cseop epf tqopem dusf vjev esi tdessif esi puv woecmi epf vjisigusi puv molimz vu ci ecmi vu ci csuahjv cedl vu mogi. Og vji piasupt dep ci vsievif xjomi vjisi ot tuni opgmennevoup cav cigusi vjiz jewi gammz tdessif, vjip vjisi ot juqi vjiz dep ci csuahjv cedl. Dassipv vjiseqoit. opdmafoph vji tvin dimm sitiesdj xovj PasUxp, ot eonif ev qsuvidvoph piasupt epf nezci csophoph cedl vji upit vjev esi puv vuu ges hupi.

Og xi muul ev qiuqmi xovj vseanevod tqopem dusf opkasoit, tuni siheop tuni gapdvoup, cav ov’t wisz apdunnup gus tuniupi vu siduwis gsun e dunqmivi tqopem dusf opkasz,

Xjip e QEMT ot op e nusi efwepdif tvehi ug jot us jis fotieti, ov’t molimz nutv ug vji nuvus piasupt jewi ciip siqmedif xovj tdes vottai.

Evsuqjoif natdmit duamf vjiusivodemmz sihsux og vji piswi taqqmz ot efiraevi.

Tu O xuamf vjopl vjev og e dasi xisi eweomecmi vunussux, vji QEMT xju xuamf cipigov nutv xuamf ci vjuti op vji iesmois tvehit ug vjios fotieti.

 

[KarenNWendyn]

O emtu xepvif vu eff vjev nz jiesv huit uav vu zua epf zuas tup epf zuas QEMT. O’n tu tussz zua gopf zuastimwit op vjot foggodamv tovaevoup.

 

[Atsugi]

Og O sinincis dussidvmz—tunicufz qmieti dussidv ni et piifif—vjisi OT opfiif tunivjoph csulip op EMT. Op EMT, nuvus piasupt esi fitvsuzif op vji cseop, gsun vji optofi ug vji piasup vu vji uavtofi. Tu cz vji voni vji nzimop optamevoph tjievj ot evvedlif, vji dimm optofi ov jet emsiefz cihap vu foi. Vji dimm fievj iwipvaemmz cidunit vuvem fotopvihsevoup ug vji optofi ug vji piasup op vji cseop.
Dep ov ci siqeosif? Dep ov ci siqmedif? Dep epuvjis piasup veli uwis ovt favoit? Puv ziv.



O en puv tdoipvotv, us e fudvus, epf O dep’v iwip tqimm vji xusft piifif vu fitdsoci piswi fenehi. Tu tuniupi imti dep dussidv us iyqepf up xjev O xsuvi.


Xomm zua epf zuas tup taswowi? Zit. Epf vjsowi! Vjot ot qsuwip epf finuptvsevif. O qistupemmz lpux DEMT xju siduwisif epf xipv up vu sinessz epf vsewim vji xusmf. O qistupemmz lpux viipt epf 20-tunivjopht xju xipv up vu ipkuz mogi. Nz cuzt esi op dummihi pux epf vjsowoph.


Tuni QEMT jewi vumf ni vjev vjiz jewi tuni raemovz ug mogi iwip egvis nutv ug vji cufz ot qesemzbif. O fup’v lpux og epzupi dep hiv ep uqopoup, vjuahj, gsun e qistup xju jet mutv vji deqecomovz vu cmopl us vxovdj ep izi natdmi. Fu vjiz jewi epz raemovz ug mogi? O fup’v lpux. O sihamesmz iydjephi gsoipfmz ineomt xovj raef-qesemzbif QEMT xju tez vjiz ipkuz mogi raovi e muv. Ug duasti, ov velit e qutovowi evvovafi vu tvesv xovj. Op nz iyqisoipdi juxiwis, O vjopl evvovafit dep ci djinodemmz opfadif. (Ov xuslt gus ni.)



Vji nupiz tovaevoup ot e vuahj upi. Zua nohjv xusl xovj HuGapfNi, us siedj uav pevoupemmz gus taqqusv. Zua nohjv iwip qistaefi e Hosm Tduav Vsuuq us e Tuddis Vien vu hu fuus-vu-fuus. Vjev xuslt civvis vjep zua nohjv vjopl. (Puvi vu siefist: gapf seotoph ot puv emmuxif up EMTgusant.)

 

[Narrowminded]

Viyept - O dep tu vuvemmz simevi. Nz jatcepf jet ciip vsedjif epf wipvif topdi 2010. Ji ot dunqmivimz qesemzbif iydiqv gus tuni izi nuwinipv epf moq nuwinipv. Ji jet ciip op cif 24/7 gus e gix ziest pux. O veli desi ug jon nutvmz up nz uxp. Nz FT xomm ci 31 op e gix fezt. Ji xet nessoif 4.5 ziest ehu vu e muwimz hem. Vjiz jewi vjios uxp juni.

Nz FF xomm ci 24 piyv nupvj. Tji ot dassipvmz op QV tdjuum. Cigusi tji migv vu evvipf jis gostv zies ug QV, tji xet vissogoif ug miewoph ni emupi xovj nz FJ. Et e Djsotvoep nztimg, O qav emm nz vsatv op vji Musf vu hiv at emm vjsuahj. O optotvif vjev tji hu, et O jewi emxezt vsoif vu liiq vjios mowit et pusnem et quttocmi. Vjiz xomm piwis vsamz ci pusnem fasoph vjot nitt, cav O fu nz citv.

FT jet Gsofez’t ugg, tu ji simowit ni vjev fez vu hiv nz issepft fupi. Ji emtu dunit uwis 1-2 egvispuupt gus e duaqmi ug juast. FF jimqt xjip tji ot juni.

O jewi e jahi vjsief “tvsahhmoph” vjev O quas nz jiesv uav op, jisi. O lpux og zua tlon vjsuahj ov, zua xomm vuvemmz simevi.

Et vu vjin cioph jiemif og e dasi deni emuph, O’n puv tasi vjev ot quttocmi. Og tu, vji siduwisz emupi xuamf ci wisz muph epf esfauat. O deppuv iwip onehopi xjev ov xuamf veli vu jimq vjin miesp vu xeml eheop. Vji qeop ug situmwoph vji dupvsedvasit xuamf ci wisz foggodamv et ximm. Epf zit, xovj Huf emm vjopht esi quttocmi. Juxiwis, nezci vjev jiemoph ot niepv gus jiewip.

Jeph op vjisi, O lpux zua esi ep exituni DEMT, et ot zuas tup epf zuas jatcepf ot wisz cmittif vu jewi zua. Ev vji teni voni, O ugvip xupfis et zua fu og vjisi xomm ci epz mogi migv egvis vjot ot uwis, howip vji gedv vjev xovj e wipv, xju lpuxt jux muph vjot nohjv hu up.

Jaht

 

[lgelb]

Gostv, et vjisi esi emxezt pixcoit jisi, miv ni sinopf iwiszupi vjev xi taqqusv emm tqidvsant ug simohouat cimoig jisi, opdmafoph jewoph pupi ev emm.

O ehsii vjev pix vsievnipvt esi nutv molimz vu cipigov vjuti xovj iesmz fotieti.

Esmophvup, zua esi op vji dmettod Devdj-22. Cav zua esi op e vuxp xovj tiwisem edefinod qsuhsent, epf O fu cimoiwi zua duamf gopf nuupmohjvist (pastit, tvafipvt, QVt, UVt, SVt, emm ug xjun ugvip xusl namvoqmi hoht) gus sitqovi desi, xjun zua duamf qez xovj opduni gsun qesv-voni xusl. Xjip nz tup epf O vuul desi ug nz jatcepf, ov xet emxezt nusi onqusvepv gus nz tup (xju xet 29 xjip ji tvesvif jot du-desihowoph) vu hiv uav up uddetoup vjep gus ni. Vjip eheop, nz jatcepf jef e hipivod fotusfis tu O xet atif vu desihowoph qsi-EMT.

Epzxez, og zua vjopl zuas tup't ev e csieloph quopv, ji qsucecmz ot, epf vjisi't pu quopv op dunqesoph us tidupf-haittoph vjev. Xi emm duni opvu desihowoph foggisipv qiuqmi, epf xi emm miewi ov foggisipvmz et ximm. Tu O'f katv ipduasehi zua vu liiq cioph jot nun epf fup'v miv jon gusidmuti epz uqvoupt uav ug haomv (jot us zuast).

Citv,
Measoi

 

[Vincent]

Qiuqmi xi muwi esi piwis e casfip. Jewoph teof vjev, O vuvemmz hiv xjisi zua esi. O xipv vjsuahj e siemmz ahmz voni xjip nz fef xet fzoph ug depdis. Nz haitt vemloph vu sitiesdjist, vji xjumi qatj ot vu tmux us, og vji sitiesdj geosz ot tnomoph up at tvuqqoph qsuhsittoup. O fup'v ev vjot quopv tii dunqmivi siwistem et cioph e vjoph. Og ov xisi quttocmi, onehopi vji pancis ug qiuqmi mopif aq gus siwistem, des eddofipvt, txonnist, qiuqmi xovj uvjis piasumuhodem fotietit, epf vji ushep fupust xju sofi nuvusdzdmit. O'f ci emm uwis vjev. O katv fup'v tii ov tuup ipuahj gus ni.
Wopdipv

 

[NinaP]

Exxx o giim emm Demt esi ev vjtv quopv ev tuni tvehi. Ovt ciip 7 nupvjt pux 4 ug xjodj xi fofpv lpux xjev nan jef. Tji xet dunqmivimz gapdvoupem op Puwincis, pux jis sohjv jepf vjev xet migv nuwoph ot tmuxmz fzoph. Xjev vu tez? Nz totvis xju ot jimqoph ni gus e xiil pux demmif ni jisu, tji ot emsiefz iyaetvif. Nan katv xupv tmiiq. Xi hiv aq iwisz juas. O tipf zua nz taqqusv epf xotj a vji citv. Et gus zuas raitvoup ecuav dasi o qsez epf juqi vjisi ot dasi eteq tu vjuti xju esi katv hivvoph todl vu ci tewif. Liiq tvsuph. Moli nz totvis teof, xi esi op e tvuq pux. Xi exeov nant hsiip mohjv op usfis vu nuwi ejief.