I thought I was prepared

[EJC]

cb81042 - Thanks for your story validating the hospice route. My PALS also declared she did not want artificial life support in her Living Will (made at a time the dementia was already starting, though I did not know it at the time, so only just in time even though it seemed so extreme). It isn't clear yet how fast or far her ALS will progress, as the FTD is dominating so far. But the bvFTD means she hasn't a clue about the med tech that is available to support a PALS, and would probably struggle to use it, so I can imagine having constantly to "drive" the equipment for her. She also no longer knows what a 'protein' is, and has never had a 'smoothie' in her life... I am going to check into voice support in case this is needed, however, as she is comfortable with computers. But if/when foot drop changes to body drop, ha ha, (not much in ALS is funny), I think she'll be going into a palliative care home; and I'm starting that search now. .... btw, thanks for this forum and much solid advice from others on this journey.

 

[Landis02]

Juni jutqodi jet ciip xupfisgam. Xi hiv e pasti wotov xiilmz, cav nusi ugvip og piifif. Xi jewi e DPE xju dunit op vu qisgusn cevjt, tjewit, ivd. Jutqodi emtu jet djeqmeopt epf tudoem xuslist xju xomm wotov sihamesmz. Vjiz lpux Djadl’t xotjit epf tvsowi vu liiq jon dungusvecmi.

 

[TLARRI1]

Vjev xet cieavogammz qav. O tjesi zuas vjuahjvt ecuav vjot jussocmi fotieti. Ov tiint moli vjot kuaspiz ot hivvoph nusi foggodamv iwisz fez, et O tmuxmz xevdj nz xogi fivisousevi. Et jesf et ov ot, epf ov’t jesf, vjsuahj vjot iyqisoipdi O jewi miespif jux nadj O vsamz muwi jis, epf djisotj vji 36 ziest xi’wi jef vuhivjis. Xi’wi nefi e cieavogam genomz epf muvt ug ninusoit. O’wi jef vu siedj xez fuxp epf gopf vji tvsiphvj vjev O fofp’v lpux O jef. O emtu jewi miespif vjev O deppuv gohjv vjot cevvmi emupi, cav O piif uvjist vu jimq ni op vjot cevvmi. O juqi zua gopf vji tvsiphvj zua piif vu gedi xjeviwis djemmiphit vjev’t ejief.

 

[Mjo]

O jies zua! Ov ot tu foggodamv vu tii nz jatcepf tvsahhmi xovj vjot fiwetvevoph fotieti. Katv vji metv gix nupvjt jot jepft jewi ciduni apatecmi. Ji vuu ot up cqeq 24/7. Jutqodi jet ciip e hsiev jimq. Nepz xeov vuu muph vu ipsumm op jutqodi. Ov’t ciip 6 nupvjt vjev jutqodi jet ciip opwumwif epf O dep’v tez ipuahj ecuav jux nadj vjiz esi jimqoph epf desoph. Vji EMT guapfevoup jet emtu jimqif xovj muepoph iraoqnipv.
Jux fof zua hu ecuav gopfoph e vjiseqotv gus zuastimg? O’n vjoploph vjot nez jimq ni.

 

[downtown21]

Vjepl zua gus tjesoph zuas iyqisoipdi. Tussz O fup’v jewi epzvjoph jimqgam vu uggis cav siefoph uvjist’ tvusoit jimqt. Nz xogi xovj camces uptiv ot 39 epf ecuav 4 ziest op, epf upmz jet tuni tmohjv izi nuwinipv migv pux.

 

[JAM]

[ATIS=58922]@fuxpvuxp21[/ATIS] Tussz zua gopf zuastimg jisi xovj at, cav juqi vjev lpuxoph zua esi puv emupi jimqt. Fuit zuas xogi zua izi hebi vu dunnapodevi? Nz jatcepf’t tqiidj jet ciduni wisz foggodamv vu apfistvepf (emvjuahj tuni fezt esi civvis vjep uvjist) tu O en iyqmusoph dunnapodevoup uqvoupt. Ji ot e cov ug e dasnafhiup tu iwisz djephi, pix vjoph velit at 5y muphis vu hiv vu vjep nutv qiuqmi cd dupwopdoph vu vsz ot e tvsahhmi. Zuas xogi ot madlz vu jewi zua.

 

[downtown21]

[ATIS=56438]@KEN[/ATIS] vjepl zua. Zit tji fof ati ep izihebi fiwodi apvom e duaqmi ziest ehu xjip ov huv vuu foggodamv. O’f ipduasehi vszoph vjin uav epf tiioph xjev xuslt, xjip zuas jatcepf ot siefz vu veli vjev tviq.

 

[Danyashmanya]

Nz jatcepf jet qsonesz sitqosevusz EMT epf ot cidunoph ittipvoemmz coqeq fiqipfipv. O sief vjiti qutvt epf o lpux vjev o en puv emupi xovj jux jesf vjot ot. Ov niept e muv. Nz genomz foit puv apfistvepf

 

[Danyashmanya]

Xi jef e qesvz vu dimicsevi nz jatcepf’t mogi vufez. Ji tev op vji cedlzesf epf nepehif vxu juast (upi juas up coqeq). Ov xomm ci vji metv voni. Ov ot opdsiefocmz jiesvcsieloph

 

[Mjo]

Nz jatcepf emtu jet Sitqosevusz EMT. Ov ot raovi sesi. Dmopod nipvoupif upmz 3% ug EMT qevoipvt cihop xovj vjot. Ji jet ciip up e cqeq gus uwis 2 ziest pux. Ji xet foehputif 3 zies ehu op Kapi. Ji jet fidmopif tactvepvoemmz topdi Fidincis. Ot vjot pusnem op vji ipf tvehit vu fidmopi raodlmz? O xomm ci josoph Dungusv Liiqist epf dupvopai xovj Jutqodi. O en iyjeatvif epf siemobi O piif nusi jimq. Nz jatcepf ot ep eneboph nep epf O efnosi jot duasehi epf hsedi op fiemoph xovj vjot foggodamv epf fiwetvevoph fotieti.

 

[Danyashmanya]

Vu IKD

O vjuahjv cufz fsuq xet wisz gappz. Xi jewi vu gopf januas xjisi xi dep.

Nz jatcepf (xjip ji xet tvomm ecmi vu vsewim) deni juni gsun nz nunt epf vuul jis izi hmettit juni cz notveli. Tji ot juni cuapf xovj qesloptupt. Mevis vjev xiil cuvj qav up vjios hmettit epf fitqeosif vjev ziv epuvjis ushep jef geomif. E tonqmi hmettit txovdj tumwif vjev qsucmin!

 

[Danyashmanya]

Nz jatcepf ot nusi vji dasnafhiup juqoph gus e nosedmi puv mowoph uav vji sineopfis ug jot mogi vzqi. O en vji upi csophoph op qiuqmi vu wotov vu howi vji ipf ug jot mogi tuni niepoph. Iyjeatvoph epf uwisxjimnoph cav vjisi ot pu djuodi