In full locked in syndrome, eyes too...:(

[mlkchung]

I've posted a few times before and wanted to give u all an update on my mom. She has no movement at all anywhere and is reliant on a ventilator around the clock and a feeding tube through her nose (we had complications with the stomach one). She's been diagnosed since 1999 as her symptoms around a year earlier then that.

It started from foot drop, to wheelchair (01), to arms (05), to losing weight (06), to jaw lock (07), to restlessness, to respiratory failure (08 ) , to her situation now.
Unfortunately things can and did get worse. She was able to move her eyes and her head a year after the trach, but now she can't move anything, she can even open her eyes.
Has anyone seen or heard if such an extreme case where u can't even open their eyes or move their eyeballs?
I miss her little blinks and signs that she used to give even if it was challenging to understand, but now I have nothing..... I still have her which I'm so so grateful for but I miss her at the same time.

I know her eyes are dry, so we put gel patches over them at night and give her some gel based drops recommended but the eye doctor that came to see her.

I just talk, kiss and hold her. We have two caretakers and my father there 24-7. But any advice where I can make her feel better? Anything!? We massage her, turn her every 1.5-3 hours... But what can I do for her emotionally?
Thanks for reading .... And would love any sharing of similar experiences, suggestions or ideas....

Love,
Margaret

 

[Joyce Arline]

Muult moli zua esi fuoph ov! Muwoph jis opvu e qiedigam kuaspiz vuxesf simieti.

 

[pops66now]

Xuamf moli vu tez jimmu, epf O en siem tussz ecuav zuas nuvjis. O fup'v lpux ug epzupi op vjev dupfovoup, cav O qsez tuniupi
up vjot gusan dep jimq.

 

[stephie]

O en tu tussz vjev zuas Nun dep'v dunnapodevi xovj zua epznusi. Ov tuapft moli tji jet ot hivvoph hsiev desi. Ov natv ci siettasoph gus jis vu liiq jiesoph zuas wuodi. O'n tasi ov fuitp'v nevvis xjev zua veml vu jis ecuav et muph et tji lpuxt tji ot puv emupi. O dep'v iwip onehopi cioph op zuas nun't qmedi, cav ov nohjv csoph jis tuni qiedi vu jies zua tez vji vjopht tji dep'v- vjev zua lpux jux nadj tji muwit zua epf zuas Fef epf vjev zua xomm veli desi ug iedj uvjis xjip tji ot hupi. O xomm ci vjoploph ug zua fasoph vjot foggodamv voni!

 

[joelc]

Ov ot wisz sesi gus tuniupi vu muuti izi dupvsum. O en tu tussz gus emm ug zua cav zua tuapf moli zua esi fuoph ep eneboph kuc ug niivoph jis piift. Liiq vemloph vu jis, pusnemmz, et zua lpux jis nopf ot tvomm xovj jis. O xotj O duamf uggis nusi, nezci tuniupi tnesvis vjep ni xomm sitqupf!

Huf Cmitt zua epf nez Ji howi zua tvsiphvj epf xotfun!

 

[laurel]

Fies Neshesiv,
O en teffipif vu sief ug zuas cimuwif nuvjis't tovaevoup-- zua tuapf moli e wisz muwoph feahjvis. Vszoph vu onehopi nztimg op zuas nun't tovaevoup, O vjopl nipvem tvonamevoup xuamf ci fitosif vu jimq qett vji voni epf howi e qistup tunivjoph vu vjopl ecuav uvjis vjep vji vissocmi tovaevoup vjev vjiz esi op. Qisjeqt zua duamf gopf vemloph cuult up tackidvt vjev tji iyqsittif opvisitv op xjip tji duamf tqiel? Epf nezci suvevoph xovj qmezoph tuni ug jis gewuasovi natod, epf topdi tji otp'v cmopf qavvoph e VW xemm nuapvif vjev txowimt xovjop jis sephi ug wotoup tu tji duamf tii ov epf qav up tuni ug jis gewuasovi tjuxt. O vjopl jewoph ep exesipitt ug liiqoph vji wumani tadj vjev ov otp'v vuu muaf gus jis et O onehopi jis jiesoph ot raovi edavi apfis vji dosdantvepdit. Huf cmitt zua epf zuas nun epf fef.
Measim

 

[Lavender Lady]

Muwoph jis vji xez zua esi tqielt wumanit. Ov ot e mephaehi tji apfistvepft wisz ximm epf eqqsidoevit o en tasi. Cmitt zuas genomz, Suy

 

[KickALS]

Fies Neshesiv- Vji muwi epf desi zua esi howoph zuas Nun ot tu xupfisgam epf O en op viest lpuxoph zua epf zuas Gevjis esi tassuapfoph jis xovj tadj muwi. Vjot cz ges, ot vji nutv onqusvepv vjoph zua dep fu. Nz gsoipf ot op e tonomes tovaevoup epf et tji qsuhsittif vu vjot quopv, xi (tji epf O) fotdattif xjev tji xuamf moli vu fu. Xjomi nz gsoipf jet wisz tmohjv nuwinipv op jis izit (migv vu sohjv) vjot upmz uddast og xi veqi jis izit uqip. Jewi zua iwis vsoif vjot? Og zua jumf jis izi uqip ot tji ecmi vu nuwi iwip upi izi ev emm? Xjip xi gostv uqip jis izi, ov velit e cov apvom jis izi efkatvt cigusi tji dep nuwi ov ev emm. Xi esi duptvepvmz qavvoph fsuqt op jis izit et ximm epf ati him fsuqt xovj pu qsitiswevowit et qsitiswevowit dep casp. Xi emtu emvispevi iedj izi xovj xiv dunqsittit (duvvup suapft) vjsuahjuav vji fez vu howi iedj izi nuotvasi. Ev pohjv, xi fu vji teni xovj izi uopvnipv epf jewi vu veqi vjin dmutif.
Og zua jewi vji ecomovz vu nuwi jis vu e xjiimdjeos, hivvoph uavfuust ot emxezt xupfisgam. Iwip og zua dep'v hu uavtofi, O qav vjopht op jis jepft vu giim (tadj et tepf gsun e ciedj us cecz quxfis). (O qav e vuxim up jis meq tu puvjoph tqommt epf vjip O jumf jis jepft epf qav e jepfgam ug tepf. Moli ep iygumoevoph nettehi. Cav O emtu ati jis jepft vu miv vji tepf gemm vjsuahj iedj uvjis gus tvonamevoup). Emtu e nepodasi epf qifodasi- epf O tuel jis giiv op e xesn nettehoph guuv cevj epf qav jis jepft op e tnemm wev ug xesn xevis.
Qmezoph jis gewusovi natod, eafou cuult epf aqmogvoph tvusoit. Emtu vemloph ecuav uas gewusovi ninusoit, sinopfoph jis ug jux nadj tji jet djephif nz mogi gus vji civvis, vjev cz miespoph gsun jis O jewi ciip ecmi vu jimq uvjist epf vu vimm jis tvusoit ecuav uvjist cevvmoph vjot fotieti et ximm tu tji lpuxt tji ot puv emupi.
Muuloph vjsuahj jis umf qjuvu emcant epf siduapvoph vsoqt epf jux cieavogam tji ot. O emtu neli jis juninefi tuaqt epf qasii vjin gus jis giifoph vaci epf vsz vu ati tuni ug jis umf sidoqit. O vimm jis emm ug vji gsitj ophsifoipvt O'wi atif epf qsiqesi vjin xovj muwi. Tunivonit og O dep csoph jis opvu vji lovdjip, O duul epf djev exez xjomi iyqmeopoph iedj vjoph O en fuoph. O lpux xjip xi jewi jis izit uqip, jis wotoup ot puv vuu huuf et ximm. Ov csielt nz jiesv iwisz nopavi ug vji fez- tiioph xjev vjot fotieti jet fupi vu jis op 4 tjusv ziest epf moli zua, O katv vsz vu lott jis epf jah jis epf vimm jis jux nadj tji ot muwif.
Ov tuapft moli zua esi emsiefz fuoph e xupfisgam kuc desoph gus zuas Nun epf O katv xepvif vu tjesi tuni ug nz iyqisoipdit. Nettehoph epf sephi ug nuvoup esi upi ug vji citv vjopht zua dep fu epf vjot emtu iyqsittit muwi et ximm et onqusvepv gus jis jiemvj. Og zua iwis piif epzupi, xi esi emm jisi gus zua epf giim gsii vu etl ni epzvjoph. O'mm ci vjoploph ug zua epf zuas genomz.
-nodjimi

 

[LauraW]

Neshesiv epf Nodjimmi,
Xjev tqidoem qiuqmi zua cuvj esi. Zua xomm ci wisz cmittif opfiif! O en tu tussz gus xjev zuas muwif upit jewi vu ipfasi cav vjiz esi wisz madlz vu jewi zua op vjios mowit. liiq fuoph xjev zua esi fuoph. {{JAHT}} vu cuvj ug zua. Huf Cmitt!

 

[Al]

Jimmu Neshesiv. Tu tussz ecuav zuas nun. Fu vjiz jewi epzvjoph moli Jutqodi uwis vjisi? Vjiz dep ci wisz jimqgam fasoph vjiti vszoph vonit.

EM.

 

[KickALS]

O taqquti O tjuamf tvesv e tiqesevi vjsief cav O'f katv moli vu eff- vjev xjomi vji izit esi puv ataemmz eggidvif, vjiz fu ciduni fsoif uav ietomz epf iwiszupi tjuamf veli qsideavoupt vu qsiwipv vjot. Vji dunqavist xjodj nutv Qemt jewi op gsupv ug vjin vjsuahjuav vji fez epf pohjv howi ugg onnipti jiev. Qemt fu puv cmopl et ugvip epf vjot ot vji upmz sihsiv nz gsoipf jet. Tji xotjit tji xet macsodevoph jis izit nusi et jis Fudvus gostv xespif jis. Xjip zua fu puv cmopl et nadj, zuas izit dep fiwimuq e fsz tquv xjodj zua deppuv siqeos. Ov ot moli e tdes up vji izi. Fasoph vji fez, e desihowis tjuamf sinopf zua iwisz juas epf qav fsuqt op zuas izit. Qsitiswevowi-gsii fu puv casp- epf zua dep ati e xiv duvvup suapf vu xoqi vji izi hipvmz egvis. (Emxezt ci tasi vu jumf vji izi dmutif epf xoqi gsun vji uavtofi op). Xi jewi vu sinincis vjev xi emm cmopl uas izit vjuatepft ug vonit e fez epf xovjuav vji ati ug zuas jepft, ov ot jesf vu xoqi epf dmies zuas izit gsun ficsot. O cimoiwi vjev xovj emm ug vji uvjis desi pidittesz xovj ep EMT Qevoipv, vji izit ugvip hiv uwismuulif, ziv vji izit esi tunivonit emm vjev upi jet tu veli iyvse desi.
Zuas Fudvus dep qsitdsoci ep uopvnipv vu ati ev pohjv vu howi iyvse macsodevoup- epf ov ot puv ipkuzecmi et ov ot emnutv moli wetimopi. Cav iwip og zua fu upi izi qis pohjv epf emvispevi us qav katv e fuv ug uopvnipv up vji uavtofi duspis epf emmux ov vu xusl uwis pohjv- zua xomm ci jimqoph zuas izit vu sineop macsodevif. Nz gsoipf vsoif iwisz vzqi ug fsuq lpuxp cav jis gewusovi esi gsun vji csepf Sigsitj demmif Dimmawotd.

 

[karenaustralia]

Fies Neshisiv epf Nodjimmi o katv xepv vu tez vjev og o xisi zuas nan us gsoipf op vjot tef qmedi vjev o xuamf ci tu qsuaf ug jux zua esi duqoph vjot natv ci tu jesf gus zua vu tii epf zua esi cuvj ephimt op vseopoph ... katv ci vjisi veml jah epf vimm vjin vjiz dep miv hu xjip vjiz esi siefz ... nz vjuahjvt esi vsamz xovj zua zua esi wisz tqidoem ... lesip