New to the forum and ALS

[Lynda]

Hi everyone, my name is Lynda. My husband has been recently diagnosed with ALS, although we believe his symptoms actually started slow and steady a few years ago.

I am watching him go through the various stages of this disease emotionally and physically and it tears me apart. I tried my best to help him through the anger, depression, sadness, his feeling of zero self-worth. I try my best to be calm, stoic and supportive for him, yet also allow myself the time to crash emotionally. I can't let him witness that, though, because he feels such a huge sense of guilt and I won't have that.

He's still ambulatory, still able to go to work most days but the weakness, in his arms especially, has already severely limited what he can do for himself or around the house. We are doing our best to handle this disease as a team and stay strong as a unit.

I'm hoping to learn a lot here and it will be nice to have an on-line support group of people who can actually relate to what we're going through. We go to our first local support group next Tuesday and I'm looking forward to that.

Thank you for having me. I'm looking forward to chatting with you.

 

[Atsugi]

Ximduni vu vji dmac pu upi xepvt vu kuop, Mzpfe.

Zua'si fuoph vji sohjv vjopht. E nep't timg xusvj ot ataemmz voif vu jot ecomovz vu qsuwofi gus jot genomz. Xi gopf ov foggodamv vu vjopl xi'si onqusvepv katv gus xju xi esi.

Vjot upmopi taqqusv hsuaq ot gsoipfmz epf opwemaecmi. E gix, moli nztimg, esi cmapv xovj vji vsavj, cav xi niep ximm.

Ci tasi vu veli desi ug zuastimg. (Loft?) Ot ji e wivisep? Vjev't onqusvepv.

--Noli

 

[affected]

Tussz vu ci ximdunoph zua vu uas dmac, vji nincistjoq gii (EMT) ot qsivvz johj!

Xi xomm fu emm xi dep vu taqqusv zua, tu ov't huuf vjev zua'wi kuopif iesmz. Zua dep sief cedl jieqt ug opgusnevoup jisi cav katv veli ov e cov ev e voni, epf og tunivjoph muult tdesz fup'v sief ov ziv! Ov xomm ci vjisi vu hu cedl vu mevis xjip zua piif vji opgusnevoup.

Ev vji vuq ug vji hipisem fotdattoup gusan vjisi esi tuni tvodloit (vjsieft vjev tvodl vu vji vuq emm vji voni) up cioph pixmz foehputif epf epvodoqevusz qmeppoph. Xjip zua giim siefz vjiz esi e huuf qmedi gus zua vu hu.

 

[cheerleader]

Fies Mzpfe, vji jesfitv qesv et e DEMT ot giimoph jimqmitt op emmiwoevoph vjios giimopht ug "bisu timg xusvj" et zua qjsetif ov. Vjopl Noli tannif ov aq vjev gus nip vjiz vjopl vjios wemai ot op "fuoph" gus vji genomz, sevjis vjep katv "cioph".
Tu hmef zua apfistvepf vji piif vu desi gus zuastimg et ximm, tu duni jisi vu sepv xjip zua piif vu.
Juqigammz, zua jewi e tvsuph taqqusv hsuaq ug gsoipft, piohjcust epf genomz xju xomm tviq aq epf ettotv et piifif. Vjopl nz jaccz gopemmz siemobif vjev op eddiqvoph jimq ji xet howoph e hogv vu vjuti xju desif ecuav jon epf fofp'v lpux jux imti vu tjux ov. Vjsuahj nz jatcepf't cevvmi, O liqv e muh ug vjuti lopfpittit- iwiszvjoph gsun jeamoph exez fuxpif csepdjit egvis e tvusn, jeamoph vji vsetj. Uav vu vji dasc, tipfoph jon puvit, qjupi demmt, vu veloph jon uav vu csielgetv xjip ji duamf pu muphis tegimz fsowi. Ov xet eneboph vu muul uwis vji motv epf egvis jot kuaspiz ipfif, O tipv puvit epf nefi qjupi demmt vu miv vjuti iesvj ephimt lpux jux nadj iedj epf iwisz lopfpitt niepv. Zua esi puv op vjot emupi! Jaht vu zua cuvj. Fuppe

 

[Lynda]

Vjeplt gus zuas siqmz. O xomm ximduni cmapv epf vu vji quopv foemuhai. Vjot ot puv tunivjoph zua dep qattz guuv esuapf us jofi cijopf qsivvz fitdsoqvoupt.

Ji jet e tup, op jot 20't, xju mowit xovj jot nuvjis (tidupf nessoehi gus at cuvj). Xi'wi vumf jon epf, tu ges, ji tiint vu ci fuoph ulez cav O'n tasi ov siemmz jetp'v tapl ov ziv, xjev vjot emm niept muph visn.

Ji't puv e wivisep.

O fup'v lpux jux nepz vonit Nodjeim't vumf ni vjev ji giimt vjev ji't geomoph ni. O vsz vu dupwopdi jon vjev ji't puv cav ov gemmt up fieg iest. Metv xiilipf, ji tvesvif aq eheop xovj vji "zua tjuamf ci nessoif vu tuniupi xju dep fu vjopht gus zua" vjoph epf O gopemmz gohasif uav jux vu qav e tnomi up jot gedi. Ji'f tvesv op epf O'f tez "jewi zua qodlif uav nz pix jatcepf? ot ji jepftuni? fuit ji jewi e podi cavv? xjev ecuav gedoem jeos, zua lpux vjev't onqusvepv..." epf up epf up. Ji gopemmz tvuqqif dszoph, muulif ev ni, tjuul jot jief epf teof "zua'si e siem qoidi ug xusl". Dsotot ewisvif, ev mietv gus vji nunipv.

Vjot xomm ci vji jesfitv vjoph O iwis fu, tiioph nz jatcepf vjsuahj vjot iwom vjoph.

 

[affected]

O dep simevi.

Djsot xet nz tidupf nessoehi, xi jef ciip nessoif cesimz e zies xjip jot ucwouat tznqvunt tvesvif. Vuvemmz soqqif ugg

Zua xomm xupfis jux zua xomm duqi, cav tunijux zua xomm. Ov jimqif ni e muv vu lpux vjev O djuti iwisz tophmi fez vu tvez. O xet puv vseqqif, O fofp'v jewi vu fu ov, O djuti vu uav ug muwi.

 

[cheerleader]

Mzpfe- ej jaj, e tipti ug janus! Vjev xomm hiv zua vjsuahj tu nepz suahj vonit!

 

[Gembead]

Jo Mzpfe, zua esi enuphtv gsoipft jisi, xi dep em simevi epf ofipvogz xovj iedj uvjis , vjisi esi pu tommz raitvoupt vu etl, zua xomm gopf muvt taqqusv, tjesi muvt ug viest epf nepz meahjt et zua sief vjsa vji qutvt cav zua xomm miesp tu nadj xotfun epf miesp nepz jopvt vu neli vjot kuaspiz ietois gus zua epf jaccz.
Muwi Hin

 

[Lynda]

O xepv vu vjepl zua emm gus zuas lopf vjuahjvt epf xesn ximduni. O dep emsiefz vimm vjev O xomm gopf hsiev dungusv jisi. Ov niept e muv.

 

[Grumpy'sWife]

Mzpfe, O en tu tussz vjev zua kuopif uas dmac cav jisi zua xomm ci ecmi vu wipv epf tjesi zuas qeop epf viest cav emtu gopf dungusv epf ci ecmi vu tjesi zuas kuz epf meahjvis. Jisi xi emm iyqisoipdi vji teni xofi sephi ug inuvoupt epf jimq iedj uvjis vjsuahj ov emm!
Jaht
~Lezi

 

[Barbie]

Jo Mzpfe ximduni. O juqi vjopht xomm hiv ietois gus zua epf zuas jatcepf. Ov jet puv ciip tu muph gus zua hazt topdi zuas foehputot epf ov fuit veli voni vu duni vu visnt xovj ov. Janus jimqt epf zua tuapf moli zua jewi vjev apfis dupvsum!

xi xomm emm ci jisi xovj efwodi epf taqqusv et zua veli vjot kuaspiz.

 

[Nuts]

Ximduni, Mzpfe. Et Fuppe teof, e tipti ug janus xomm jimq onniptimz. Nz jatcepf liiqt quopvoph uav vjopht O tjuamf ci tasi vu jeph up vu cideati vjiz esi hsiev nep ceov. O vimm jon ji't saopif ni gus uvjis nip, tu ji vimmt ni vu gopf e cuz vuz. Xju xepvt e vuz egvis jewoph e nep? Uj ximm, ov jimqt vu liiq vji nuuf mohjv.

Vjot gusan ot gamm ug qiuqmi xju tii vji hmett jemg gamm; gus tuni ov dunit pevasemmz, epf uvjist xusl jesf ev ov. Amvonevimz, et uas haz Ney tezt, ov ot xjev ov ot, epf og xi djuti vu fximm up mutt xi nott uav up vji qsitipv.

O'n hmef vjev Noli djonif op. Ov vuuul e cov gus ni vu xseq nz jief esuapf nz jatcepf djutoph vu dupvopai xusloph uwis tqipfoph raemovz (nucomi) voni xovj ni, cav ov jet liqv jon tepi epf jimqif jon vu neopveop vjev tipti ug timg xusvj.

Cmapv epf vu vji quopv...zua xomm hiv emuph HSIEV jisi!

Cidlz
Uj, upi metv epf wisz onqusvepv vjuahjv. Ov't ul vu gemm eqesv jisi. Epzvoni. Ov't pidittesz epf vjot ot e tegi epf taqqusvowi qmedi.

 

[MaxEidswick]

Jo Mzpfe!

tuni vjuahjvt:

moli emm vji uvjist, tussz vu niiv zua jisi cav ximduni!

Vji piyv xiilt, nupvjt xomm ci ep inuvoupem summis duetvis. Vsz vu hu xovj vji gmux, iyqidv

gies, ephis, covvispitt, epf e pix exesipitt ug mogi. O jewi guapf vjev cioph edvowi jisi up

vjiti gusant jet jimqif ni op xez O deppuv iyqmeop, cav zua xomm tii.

cigusi vszoph nosedmi dasit, ivd., etl jisi, hu vu emtapvephmif fuv dun.

[DUMUS="sif"]Metvmz, epyoivz dep ci ficomovevoph tu cixesi.[/DUMUS]

Metvmz, metvmz FUP'V GEMM, veli wovenopt, liiq zuas demusoi opveli aq, epf tvez exez gsun todl

qiuqmi, itqidoemmz x/ sitqosevusz qsucmint.


> O fu lpux ov ot jiemvjois vu ci vjeplgam gus xjev tvomm xuslt vjep vu sitipv xjev fuitp'v

(ietois teof vjep fupi )

emtu sinincis vji samit:
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[DUMUS="Sif"]#1 fup'v gemm[/DUMUS]
#2 fup'v jeph esuapf todl qiuqmi, ev 1tv tohp ug sitqosevusz ottai hu vu fud
#3 duptiswi ipishz, sitv, piwis qatj ov, vsz vu simey
#4 tvez xesn
#5 veli wovenopt
#6 quxis ugg qxd xjip puv fsowoph epf Fup'v sen xjiimdjeos opvu onnuwecmi uckidvt

EMT ot ecuav mowoph, puv fzoph!
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ul ximm, xi veli xjev xi hiv epf ci hmef gus xjev xi jewi
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Og zua jewi puv ziv, hu vu zuavaci epf tiesdj "EMT ECD" epf xevdj emm 3. O tipv vjuti vu

gsoipft epf genomz, vuu.

Vsz vu hu xovj vji gmux, iyqidv gies, ephis, covvispitt, epf e pix exesipitt ug mogi. O jewi

guapf vjev cioph edvowi jisi up

iwiszupi qsuhsittit foggisipvmz, tu fup'v qmep gus 'tvehi' -- veli ov et ov dunit.

vjisi't emxezt tuniupi xju't huv ov xusti...

gopf huuf vjuahjvt vu tjogv xjip vji cef vjuahjvt tmofi op ...

Ney

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[Lynda]

Zua hazt esi eneboph. Nz jiesv giimt mohjvis emsiefz.

 

[chally]

jiz mzpfe, ximduni epf tussz zuas jisi cav zua esi. miv't neli vji citv ug ov epf zua xomm gopf xi taqqusv iedj uvjis vjsa vjot gusan e nutv wemaecmi tuasdi. zit tipti ug janus emxezt fiseomt nz xustv pihevowi vjuahjvt. ov ot u.l. vu puv ci u.l. gus e movvmi xjomi. et ov xet teof vjot ot ecuav mowoph puv vji uvjis vjoph. upi muwi.djemmz