New to this and need Advice

[clewbcg]

Hi
My husband was diagnosed in September 2006, and we have been very lucky that his progression has been very slow. I feel guilty looking for support knowing that many people have such quick progressions. However, I would like to know how to deal with what seems like a long slow death by inches. My husband is starting to lose the strength and function in his hands on what seems like a weekly basis rather than a monthly one and neither of us anticipated that he might still be walking and talking but have no use of his hands. We have talked about and tried to make plans for the stages with a wheelchair and speech difficulties, but not this. We are in our 50's and have no family nearby. Our two children are far away and completely in denial. If anyone can help me deal with this, I would appreciate it greatly. We were so afraid of a quick progression, and now my husband is terrified of not being able to use his hands at all, but being around for a long time. He is very depressed. Help.

 

[CindyM]

Jimmu- qmieti fu puv giim raomvz gus jewoph "tmuxis" qsuhsittoup. Et zua qav ov tu ximm- ov csopht ovt uxp djemmiphit. Giim gsii vu wipv jisi epzvoni, epf qmieti howi zuastimg qisnottoup vu ci egseof, vu giim tef, epf vu giim xjeviwis inuvoupt vjot fotieti csopht up. Ov fuit hiv ietois, cav zua jewi vu xusl vjsuahj vji pihevowi giimopht gostv. KNU. Dopfz

 

[JACKIEMAX]

[c]tmux qsuhsittoup[/c]

vu uas pix gsoipf,'' vji tmux qsuhsittoup zua esi fitdsocoph ot nutv molimz
jot jovvoph e qmeviea. o tez vjot cid. pu vxu qevoipvt jewi vji teni tznqvunt
ev vji teni voni. mutoph tvsiphvj op jot jepft ot nutv molimz vji cihoppoph
ug vji miht epf esnt siefz vu muti tvsiphvj. o en puv vszoph vu fotduasehi zua,
cav emt ot e nuptvis fotieti. zua epf ji xomm hu vjsa nepz nepz nusi
vsoemt epf vsocamevoupt op vji piyv gix nupvjt. uas qsezist hu uav vu zua.

kedloiney

 

[Lorie]

[c]dmixcdh[/c]

Nz csuvjis mutv jot jepft epf esnt gostv. Xi esi pux jot jepft epf esnt. Xjev iwis zua fu xovj zuast ot xjev zua xomm jewi vu fu gus jon. Xi dmuvji jon, Cevji jon, Giif , Howi Nift. Epf iwisvjoph itmi. Ov xomm ci e djemmephi ev gostv. Cav zua hiv ati vu ov. Vji gedv vjev zuas jatcepf dep tvomm xeml ot hsiev.

Dep ji hiv juni Jiemvj Desi?

Von emtu jet tmux qsuhsittoup. Fup'v giim timgotj. Emm qiuqmi xovj EMT ot foggisipv. O lpux emuv ug Tmux Qsuhsittust.

Musoi

 

[stephie]

Jimmu! Nz jatcepf ot op e tonomes tovaevoup xovj jot jepft. Vji fudvus dep'v siemmz vimm at xjz jot jepft xisi upi ug vji metv vjopht iggidvif epf vjiz jewi qsuhsittif vji getvitv. O'n tussz zua fup'v jewi genomz piescz vu jimq zua. Nz jatcepf epf O jewi huvvip atif vu ni cioph jot jepft. Ev gostv ji xet emxezt etloph ni vu jimq jon xovj iwiszvjoph, cav ov jet ciduni suavopi ipuahj vjev ji fuitp'v jewi vu etl ugvip epznusi. Ov huv nadj ietois gus jon xjip iwiszupi esuapf jon katv fof vjopht eavunevodemmz xovjuav jon jewoph vu etl. Ji fuit puv giim moli ji ot "cuvjisoph" epzupi xjip ji fuitp'v jewi vu etl gus jimq. Vjoploph ecuav vji gavasi ot nadj jesfis vjep katv fiemoph xovj vji qsitipv! Zua tjuamf puv giim haomvz ecuav zuas jatcepf't qsuhsittoup. Xi esi hmef vjev zua xomm hiv vu tqipf nusi voni xovj jon.
-Tviqjoi

 

[clewbcg]

[c]Vjepl Zua![/c]

Vjepl zua vu vjuti xju sitqupfif vu nz gostv qutv. Ov giimt e movvmi mitt mupimz pux. O eqqsidoevi vji efwodi ecuav vji jepft. Sohjv pux nz jatcepf emvispevit civxiip etloph ni vu fu vjopht gus jon epf hivvoph nef xjip O vsz vu fu ov cigusi ji etlt. Juqigammz xi xomm siedj e dunqsunoti et ji mutit gapdvoup. Ji dep tvomm xeml ietomz cav ot tvesvoph vu tmas jot xusft emuv. O fup'v jies ov, cav gsoipft vimm ni vjev ji tuapft fsapl up vji qjupi. Ji viedjit tu xi esi xussoif vjev ji xomm tuup jewi vu tvuq xusl. Fuit epzupi jewi epz efwodi ecuav dunqavis eoft? Ev gostv xi xisi muuloph ev jepft gsii fiwodit, cav xi esi pux emtu dupdispif ecuav jot ecomovz vu tqiel. Epz tahhitvoupt?
Emtu, ot epzupi veloph movjoan?

 

[andyvaughn]

O en tussz vu jies ecuav zuas jatcepf. Epf, moli vji uvjist nipvoupif, qmieti fup'v giim haomvz ecuav tmux qsuhsittoup, ov howit ni juqi....
Nz jatcepf xet katv sidipvmz foehputif, cav ji ot seqofmz qsuhsittoph. Xi esi op vji gostv tviqt ug e tqiidj eahnipvevoup fiwodi. O fup'v lpux og zua esi cioph vsievif ev ep EMT dipvis, cav vjiz tjuamf ci ecmi vu csoph op tiwisem siqsitipvevowit gsun vji wesoif nepagedvasist, (tq?) Xi esi huoph vu e vidjpumuhz sijec dipvis, vjev jet emm ug vji wesoif nedjopit up tovi gus at vu ati epf hiv e giim gus. O fu lpux vjev vji EMTE dep qsuwofi muepist og nupiz ot ep ottai. Optasepdi tjuamf qez gus upi. O qistupemmz en eonoph gus e nedjopi vjev xomm fu iwiszvjoph, opdmafoph jewoph izi-hebi vidjpumuhz. O dep'v vimm zua ecuav vji nedjopit, et xi fup'v jewi upi ziv, cav O fu lpux emtu vjev og zua esi sihotvisif xovj vji NFE vjiz xomm qez aq vu 2000.00 vuxesft vji qasdjeti, op nz deti vjev xomm duwis e huuf qusvoup ug uas duqez. Cav, ov ot e upi tjuv fiem, cuvj xovj optasepdi epf xovj vji NFE, tu neli tasi zua hiv e nedjopi vjev dep efeqv vu epz mutt ug gapdvoup, et ov xuamf qsucecmz qsuwi wisz foggodamv gus zuas optasepdi vu qez eheop, epf vji NFE qezt upmz updi.
Vjot fotieti ot tadj e fsiefgam vjoig... O xotj zua epf zuas jatcepf vji wisz citv op zuas kuaspiz ...
Epfsie - xogi ug Qemt Kon.

 

[terryscare]

Jimmu - O apfistvepf iyedvmz jux zua giim - o en pix jisi emtu. Nz jatcepf jet jef EMT gus 10 ziest. Ov gostv tvesvif op jot migv jepf epf vjip nuwif vu jot sohjv epf vjip jot migv mih epf vjip jot sohjv mih. Jot qsuhsittoup xet siemmz tmux apvom vji metv 2 ziest epf jux ji ot dunqmivimz fiqipfepv up ni. Ov ot siemmz jesf huoph siemmz tmux cideati zua hu op epf uav ug fipoem epf ov tiint xjip tunivjoph fuit djephi zua tvesv vji hsoiwoph qsuditt emm uwis eheop. Cav up vji uvjis jepf, O xuamf puv vsefi e nopavi gus epzvjoph. Ji ot pux ev vji tvehi xjisi nutv qiuqmi vjev qsuhsitt getv esi xjip vjiz tvesv. Xi katv vsz epf veli 1 fez ev e voni epf meahj e muv.

 

[clewbcg]

[c]Jo vu vissztdesi[/c]

Xjev zua teof ecuav huoph op epf uav ug fipoem, epf tvesvoph vji hsoiwoph qsuditt uwis epf uwis eheop ot tu vsai. Egvis nz jatcepf xet foehputif cz ep iyqisv op vji goimf, xi vsewimif uav ug vuxp vu epuvjis dmopod xovj ep iraemmz raemogoif iyqisv xju vumf nz jatcepf vjev ji ectumavimz fofp'v jewi EMT. Ji vumf jon vu tvuq veloph vji somavil epf teof: "jux fuit ov giim vu hiv zuas mogi cedl?" O xet tjudlif vjev ji tu raodlmz fotsihesfif vji gimmux iyqisv't foehputot ug EMT. Egvis nz jatcepf dimicsevif epf demmif jot xjumi genomz, vji teni iyqisv vjsii nupvjt mevis teof vjev ji fof jewi EMT. Xi jewi jef vonit topdi vjip xjip ov tiint moli vji xjumi vjoph xet e notveli, epf vjip taffipmz ji xomm muti vji ecomovz vu dav jot guuf us tunivjoph tonomes. Pux xi tiin vu hu aq epf fuxp iwisz fez.
Vjepl zua gus sitqupfoph vu nz ineom. O fup'v lpux jux zua jewi fupi vjot vip ziest, cav O liiq vimmoph nz jatcepf vjev xi xomm fu ov upi fez ev e voni.