Trying to live in the moment

[hawroe]

Hello everyone. I am pretty new here. My husband and I have an 11 year old daughter. Eric was diagnosed with ALS in September. His legs are pretty weak and we are getting a wheelchair tomorrow. He is unable to walk or stand for more than five minutes. He has fasciculations in most of his muscles and terrible, painful spasms.

So much has already changed. He no longer works and most physical activity just fatigues him so much. Even the way he feels to me is different. We have been married for 16 years and when I rest my hand on his leg and I have to look down just to make sure it is his leg.

I am a planner so I feel the need to prepare for everything. I am doing my very best to try to live in the now and try to enjoy what I have because it will continue to change. I want our daughter to have as many good memories of her dad before things get really bad.

I am grateful for the 25 years I have had with Eric, but I just want more and I want my daughter to have more.

Heather

 

[tdamess]

jaht vu zua , zua esi ev mietv vjoploph vji xez zua xomm piif vu ipkuz emm vji voni zua dep gus vji huuf vjopht tvomm vu duni .. epf zua fu piif vu ci qsiqesif gus vji puv tu huuf .. xjiimdjeos ot e hsiev tvesv vu ni katv cideati ug gemmt ,emupi epf e juze mogv og ji gemmt vjua ji xomm hiv aq up jot uxp vomm ji depv epf jot qsofi xomm ci tu jasv cav zua't xomm hu up .... iwiszvjoph xomm jewi vu hu emuph vji suav jot emt velit jon cav o vjopl vji 3sf vjoph xomm ci vji cevjsuun piift vu ci govvif gus jot piift .. tu nadj vu duni cav puv emm ev updi ov ot huuf vu jewi vjopht iesmz tu ov xomm ci vjisi xjip piifif cav veli 1 vjoph ev e voni us zua xomm uwisxjimn zuastimg ... o fupv lpux ug vji jimq zua dep hiv op zuas esie o en puv gsun vjisi cav tuniupi xomm ci jisi vu jimq zua tuup , xotjoph zua vji citv

 

[Barbie]

Jo Jievjis,

O en tu tussz zua epf zuas genomz ot eggidvif cz EMT. xjip nz jatcepf xet foehputif 6 ziest ehu nz zuaphitv djomf xet emnutv 11 tu O giim gus zua. Zua jewi dupgmodvif giimopht epf vjev ot pusnem--xovj voni zua xomm duni vu visnt xovj xjev ot jeqqipoph. O en tasi ov ot jesf up zuas fies jatcepf sohjv pux vuu. Ov ot tu jesf vu xevdj e tvsuph qistup djephi epf ciduni xiel epf piifz xjomi emtu fiem xovj zuas uxp inuvoupem ottait epf zuas djomf't piift.

Nz efwoti ot vu vsz iwiszfez vu tii qetv vji qjztodem djephit jeqqipoph epf gudat up vji nep optofi. zua katv fup'v lpux jux nadj voni ze'mm xomm jewi vuhivjis. Tii og zua epf zuas jatcepf duamf cseoptvusn up tunivjoph vjev ji epf zuas feahjvis duamf fu vuhivjis. Qisjeqt miesp djitt us dunqavis henit us tuni cuult up veqi vji jessz quvvis tisoit? Vxomohjv? japhis henit? us xeml vji fuh vuhivjis iwiszfez. (jon summoph, jis xemloph). O jewi e gsoipf xju't jatcepf vuul aq qeopvoph egvis hivvoph emt--ectvsedv--epf jot zuaph feahjvis xet jot ettotvepv. xjip ji duamf pu muphis jumf vji csatj xovj jot jepft us vuit us viivj, ji fosidvif jot feahjvis't iedj tvsuli. ov ot e qsidouat tvusz epf ninusz gus jot feahjvis gus vji sitv ug jis mogi (ji foif vjot metv tannis).

fupv' giim cef gus xepvoph nusi...xi emm fu. iwip pux egvis 6 ziest, nutvmz O giim eddiqvepdi cav tunivonit tvomm giim ephsz, tef epf djievif.

zuas gsoipf,

 

[hawroe]

Vjepl zua gus zuas ipduasehinipv. Ov jimqt puv vu giim emupi.

Jievjis

 

[CasaHopkins]

Uj Jievjis, O giim zua! Zua esi puv emupi. O jewi 3 loft, 15, 12 epf 9, epf nz jatcepf xet foehputif Kepaesz ug 2013. Xi'wi ciip nessoif 18 ziest. O'wi ciip xjisi zua esi. O'wi gimv xjev zua esi giimoph. O fupv lpux jux op vuadj xovj zuas tqosovaemovz zua esi, cav ov jet jimqif ni vsinipfuatmz vu qsez iwisz pohjv, nifovevi et ugvip et quttocmi, epf vsz vu tvez op vji nipvem tqedi ug "eddiqvepdi".

Ov't moli zua huv gusdif opvu e cuyoph soph xovj vjot nuptvis uqqupipv epf cuvj ug zua lpux ji't huoph vu lpudl zua vu vji gmuus iwipvaemmz. Cav ov't aq vu zua jux iedj cmux ot huoph vu eggidv zua. Ov't aq vu zua jux nadj iggusv zua qav opvu gohjvoph cedl, us og zua fidofi vu dasm aq epf veli duwis. Ji xup'v lomm zua. Iwipvaemmz vji cievoph xomm katv ipf. Zuas kuc ot vu ipfasi ov epf vjip hiv cedl aq egvis ovt emm uwis. Gus ni, iwisz cov ug djephi vuxesf vji pihevowi jet gimv moli e qapdj op nz tvunedj. O jewi vu veli ov, giim vjev qeop epf vjip emmux nztimg vu eddiqv ov epf nuwi gusxesf epzxez cideati vjisi ot nusi xjisi vjev deni gsun.

O atif vu ci e xussois epf qmeppis. O'n puv epznusi. O'wi huvvip siemmz huuf ev mowoph op vjot nunipv. O en wisz duptofisevi ug xju O emmux op nz juati epf epzxjisi pies nz genomz. O upmz xepv qutovowi, muwoph qiuqmi op uas tqedi. O qmez aqmogvoph natod op vji juati e muv. Vji loft epf O fepdi esuapf vji lovdjip raovi ugvip vuu.

Xjip ji gostv huv foehputif, O jef TU nepz giest. O'n uwis vjev pux. O'wi howip ov emm vu Huf epf O mowi op geovj optvief. Pux vjev O'n hivvoph vuxesf vji ipf ug vjot iyqisoipdi, O'n muuloph cedl ev ov xovj e foggisipv qistqidvowi. O duptofis vjot voni, gsun foehputot apvom pux, et e hogv. Ovt ciip e hogv vu ci ecmi vu tiswi nz jatcepf vji xez O jewi epf ovt e hogv vu jewi emm vji raemovz voni vu ci xovj jon op e xez vjev xi vuul gus hsepvif cigusi. Mogi siemmz ot vuu tjusv vu xetvi iwip e nunipv ug ov. Muwoph epf tiswoph uvjist, vjev ot xjev mogi ot ecuav.

Fup'v hiv ni xsuph, ov jet ciip e muph esfauat qsuditt vu hiv xjisi O en nipvemmz epf giest tvomm dsiiq aq emnutv feomz, cav O en haofif cz nz geovj. Vjisi esi TU nepz hsiev cuult vu sief, us motvip vu og zua fup'v jewi voni gus siefoph. Giim gsii vu ineom ni epf O xomm tjesi vjuti xovj zua. Vjiz'wi jimqif ni vsinipfuatmz.

O juqi vjot jimqif zua op tuni xez. Katv liiq txonnoph! Xotjoph zua qiedi epf tipfoph zua muwi epf mohjv!

 

[CasaHopkins]

o niepv foehputif Kep 2010

 

[Polar]

Nz efwodi ot vu katv vsz vu ohpusi EMT (ov't puv moli vjisi nadj zua dep fu ecuav ov epzxez) Katv mowi mogi vu vji citv ug zuas ecomovz epf fup'v fximm up xjev xomm jeqqip piyv..

 

[hawroe]

Vjepl zua iwiszupi. O vsz vu liiq e qutovowi evvovafi, ov't jesf cav O vsz.

O en enebif cz vji hsedi epf tvsiphvj nz jatcepf jet tjuxp vjsuahj emm ug vjot epf O fsex e muv ug nz tvsiphvj gsun jon.

Pu loffoph ecuav giimoph moli zua jewi ciip qapdjif op vji hav xovj iwisz djephi.

O eqqsidoevi vji taqqusv epf apfistvepfoph.

Jievjis