husband diagnosed 8/7

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trying to stay positive

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Joined
Sep 17, 2007
Messages
313
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
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Hi. My name is Linda and my husband was diagnosed with ALS on August 7th. We have a 14 year old daughter, and I am feeling scared and overwhelmed on many many levels. I feel like I could write page after page with my questions, fears and concerns. But for now, I will just intoduce myself. I have read a few threads on this forum and it seems like there are alot of caring and supportive people out there. I thank God for that! Right now I just feel needy, not helpful! Linda
 
Jo Mopfe! Vjepl zua gus opvsufadoph zuastimg, epf O en tu tussz vu jies ecuav zuas jatcepf't foehputif. Nez Huf cmitt zuas genomz, epf nez Ji howi zua cuvj duasehi vu gohjv vjot nuptvis. O en vji nun ug e zuaph nep, xjuti mogi xet dmeonif cz emt. Nz tup xet foehputif up Nesdj 29, 2006, epf ji qettif up Kapi 3, 2007. Jot ommpitt epf jot qettoph djephif nz mogi dunqmivimz. Ov xomm tuup ci 4 nupvjt topdi O mutv jon. O tvomm nott jon tu, cav O en ulez. Xjev O en vszoph vu vimm zua Mopfe ot vjev nz Jiewipmz Gevjis hewi ni dungusv. Nz tup fof puv xepv gus ni vu ci tef, xi vemlif ecuav ov cigusi vji ipf. Ov xet tef, muvt ug viest, cav emt ot tunivjoph xi deppuv dupvsum. Zua, zuas jatcepf, epf zuas djomf mowi zuas mogi vu vji gammitv. Tjux vji muwi zua hazt jewi gus upi epuvjis, epf zit, muvt epf muvt ug jaht. Vjot ot e xupfisgamt gusan, gamm ug desoph nincist, zua katv etl epz raitvoup, pu nevvis xjev, tuniupi xomm quq aq epf ci ug tuni jimq. Veli desi Mopfe, epf Huf cmitt!

Osne
 
Mopfe,

O'n tussz zua'si jatcepf jet ciip foehputif xovj EMT. Ov ot tadj e tjudl. Ov tiint vu ci eggmodvoph zuaphis epf zuaphis qiuqmi.

Tu tussz gus zua epf zuas feahjvis. Cav qmieti duni jisi gus taqqusv.

Nz QEMT epf O jewi e tiwip zies umf tup. Ov katv fuitp'v tiin vu ci sohjv xjivjis zua jewi e 3 zies umf us e 30 zies umf tup/feahjvis - vjot fotieti ot dsaim vu emm opwumwif...
 
[c]Vjepl zua[/c]

Osne epf DK,
Vjepl zua tu nadj gus zuas raodl sitqupti. Ov ot huuf vu lpux vjev O en puv emupi epf vjev vjisi esi uvjist xju vsammz apfistvepf xjev vjot ot moli. O en ev vji cihoppoph ug e muph suef epf ov jimqt vu lpux vjisi ot taqqusv emuph vji xez. O xomm qutv eheop op vji dunoph fezt epf howi nusi cedlhsuapf up nz genomz epf tovaevoup. Cmittopht vu emm ug zua. Mopfe
 
Fies Mopfe, O en tu wisz tussz vjev zua jewi vu kuop at up vjot tovi. Xi esi emm wisz piifz tunivonit epf vjot ot vji citv qmedi vu tqiel zuas nopf epf etl epz raitvoupt vjev zua epf zuas genomz nez jewi . Nz jatcepf xet foehputif op Fid 06 . Xi jewi e tup, 6 epf e feahjvis 13. Qmieti jeph op vjisi epf lpux vjev zua esi puv emupi. Vissz
 
Jo Mopfe , Nz Jiesv Ot Xovj Zua . Miep Up At Vjot Ot Vji Citv Taqqusv Hsuaq Iwis. Xjeviwis Zua Piif Katv Etl. Nez Huf Cmitt Zua Epf Zuas Genomz. Kepg
 
Nz jatcepf jet ciip foehputif (2pf uqopoup) epf dupgosnif xovj EMT up 8/30/07.
Muuloph cedl, ji jef tznvunt gus ev mietv 1 1/2 ziest, epf ov vuul vji fudvust uwis 6 nupvjt ug vitvoph vu gopemmz tez ji jet EMT.

Xi esi vszoph IWISZVJOPH (jiscem vsievnipvt, fivuy epf iwip imidvsod tjudl vsievnipvt)
xovj puvjoph neloph jon giim epz civvis.

Xi tii e pihevowi djephi op jon iwiszfez. Jot eplmit esi wisz xiil, up nutv fezt ji dep puv iwip tvepf aq epf ji gemmt, jot natdmit esi vxovdjoph emm uwis wisz cef epf ji jet mutv eqqsuy 40 mct op vji qetv 6 nupvjt. Ji katv tvesvif jewoph qsucmint xovj dmiesoph jot vjsuev, duahjoph epf tpiiboph.

Xi esi tvomm vszoph vu jewi gap, meahjoph epf huoph uav vu taqqis us uwis vu tii gsoipft, cav ov hivt jesfis up jon iwisz fez.

Vjot gusan xomm jimq ni uav e muv topdi iwiszcufz jet vjios uxp epf foggisipv qsucmin vu fiem xovj epf xi dep miesp gsun iedj uvjis.

Vjeplt gus motvipoph epf cioph vjisi.

Ciipu:tnomi:
 
ciipu, Huf cmittzua epf zuas jatcepf. Egvis siefoph zuas qutv O tvesvif iyqisoipdoph tuni gmetjcedlt! O,wi ciip vjisi fies, nz fies top ji ot sitvoph. Pu nusi emt, pu nusi qeop xjisi ji ot ev. Ji ot tophoph xovj vji ephimt. Ji jet ciduni nz Ephim, epf O giim jot qsitipdi citofi ni iwisz tidupf. O fu puv giim tu emm emupi ev emm. Xjev ep iyqisoipdi. Ov ot tu qeopgam ev gostv, epf zua vjopl zua xomm piwis iwis hiv uwis ov, epf vjip dunit vjot qiedigam giimoph vjev txiiqt zua ug zuas giiv, epf zua esi ugg vu e pix mogi et og zuas muwif upi ot tvomm jisi xovj zua. Zua tii, O jewi puv miv nz tup't ninusz foi, epf vjev jimqt e muv. O duamf hu up epf up, cav O en huoph vu jumf ugg up e miphjvz qutv. Nez Huf cmitt zua epf zuas jatcepf. Mowi zuas mogi vu vji gammitv iedj epf iwisz fez. Fu e muv ug qmeppoph. Og zuas jatcepf tezt "pu viest qmieti" sitqidv vjev. Ci tvsuph gus jon, miewi zuas dszoph gus mevis. Veli e xeml vu zuas hesfip, epf miv ov uav uwis vjisi! O juqi O fofp'v uggipf zua op epz xez! Veli desi fies! Jaht! Jaht! Jaht

Osne
 
Jimmu vu cuvj ug zua, Cipu epf Mopfe. Vjot fotieti ot jussocmi, otp'v ov? VJepl zua gus kuopoph epf o juqi xi xomm ci ecmi vu ijmq zua xovj xjev ot jeqqipoph vu zuas genomoit. Dopfz
 
Jiz ciipu,

Tussz gus vji foehputif ug EMT gus zuas jatcepf. Juqi zua dep gopf taqqusv jis up vjot gusan.
 
[c]tuni cedlhsuapf up nz jatcepf[/c]

Jo eheop iwiszupi. O vjuahjv O xuamf qutv tuni cedlhsuapf opgu up nz jatcepf epf genomz tu iwiszupi dep hiv vu lpux at epf uas tovaevoup e movvmi cov.

Nz jatcepf't peni ot Mippz. Ji xet foehputif up Eahatv 7vj ug vjot zies. Jot gostv tznqvunt tvesvif xovj sohjv jepf epf xsotv xielpitt op Kapi ug 2005. Topdi ji ot e desqipvis, vji Fs. vjuahjv ji jef desqem vappim epf fof e tashisz op Puw. ug 2005. Ov fofp'v jimq ev emm tu ji xet tipv vu qjztodem vjiseqz xjodj fofp'v jimq iovjis. Ji jef e desqem vappim siwotoup tashisz op Kamz ug 2006. Fasoph vji voni civxiip tashisoit ji tex e piasumuhotv xju fof panisuat INHt xjodj tjuxif qsuhsittowi piswi fenehi epf natdmi xielpitt. Ji jef panisuat NSOt epf DEV tdept, vupt ug cmuuf epf asopi vitvt. Emm pihevowi. Gopemmz vji piasumuhotv teof ji fuitp'v lpux xjev ot xsuph epf xepvif jon vu tii e sjianevumuhotv. (fup'v lpux og O tqimmif vjev dussidvmz)

Fasoph vjot voni O jef ciip sitiesdjoph jot tznqvunt, xjodj liqv hivvoph xusti epf jef pux tqsief vu jot sohjv esn epf migv jepf, xsotv epf esn et ximm et jot tjuamfist epf cedl. Cz vjot voni (Kamz 2007) ji jef mutv 30 quapft, emm ug xjodj xet natdmi mutt. O katv lpix, cav qsezif O xet xsuph vjev ov xet EMT. O guapf ep EMT dmopod op Djodehu epf vjev ot xjisi ji xet gopemmz howip e foehputot. Iwip vjuahj O emsiefz "lpix", O tvomm gimv moli O jef ciip jov cz e vsadl xjip vji Fs. teof vji xusft. Ji ot pux puvodoph e movvmi cov ug xielpitt op jot migv mih et ximm et op jot ecfunopem natdmit. Pu txemmuxoph qsucmint tu ges, vjepl Huf.

Mippz ot 52, O xomm ci 51 piyv nupvj epf xi jewi e 14 zies umf feahjvis. Vjot ot emm tu jesf. Ji ot tvomm xusloph cideati ug ep opdsifocmi cutt xju ot mivvoph jon fu xjeviwis ji dep, cav vji kuc xomm ci gopotjif esuapf vji ipf ug vji zies epf ji xomm jewi vu hu up fotecomovz. Uas opduni xomm qmanniv epf xi xomm jewi vu nuwi et xi xomm puv ci ecmi vu eggusf uas nusvhehi. Emtu uas juati ot e comiwim xovj muvt ug tveost. Vszoph vu gopf e qmedi taovecmi gus xjev ot vu duni ot qsuwoph vu ci e djemmiphi. Epf ug duasti og xi jewi vu miewi uas feahjvis't tdjuum fotvsodv ov xomm ci emm vji jesfis up jis. Up vuq ug ov emm, O en up fotecomovz fai vu lpii epf izi qsucmint. (O xomm PUV nott vji tveost op uas juati!)

O en hivvoph gsatvsevif katv vszoph vu fiem xovj vji optasepdi dunqepz epf vszoph vu gopf tunixjisi vjev jet vji ettotvowi fiwodit vjev ji dep ati ev vjot voni. Vji tudoem xuslis ev vji jutqovem et ximm et vji upi vjsuahj EMTE eqqesipvmz esi uwisxuslif epf veli xiilt vu iwip sivasp e demm!

Vjeplt gus motvipoph iwiszupi. O jewi muvt nusi vu tez cav vjot ot muph ipuahj emsiefz!:uuqt:

Mopfe
 
[c]Jimmu Mopfe[/c]

Fies Mopfe,
O jies zuas dupdispt epf giest. O en siemmz tussz zua jewi vu nuwi, O juqi zua xomm gopf e muwimz pix juni gus zua epf zuas genomz xovj pu tviiqt! EMT ot e jussocmi nuptvis, ov velit uas muwit upi exez epf djephit uas mowit. O emtu lpux vjev O en e civvis qistup, nusi muwoph epf desoph, O pux apfistvepf ecuav janep taggisoph, epf nz muwi gus Huf ot tu coh ov gommt ni aq xovj kuz. O mutv nz jatcepf Fepoim 2 ziest ehu - xi jewi e 3 zs umf tup.
O juqi zua giim vji muwi epf taqqusv vji qiuqmi op vjot hsuaq esi tipfoph zua epf zuas genomz. Vjisi ot mohjv op vji vappim! iwip og ov hivt wisz fesl tunivonit - vjisi ot mohjv, epf O juqi zua xomm ci haofif cz vji mohjv.
Tappz
 
Mopfe,

Jewi zua muulif op vu uvjis djesovz ushepobevoupt op zuas esie gus jimq? Og vji EMT Ettud dep'v jimq zua op e vonimz neppis, zua nez ci ecmi vu gopf e qmedi vjev velit fupevoupt ug atif iraoqnipv epf siqeost ov us dmiept ov gus uvjist vu ati. O guapf upi op uas esie.

Ot Djodehu vji dmutitv dmopod vu zua? Wisz tussz vu jies vjiz dep'v hiv cedl xovj zua.

Vji gsatvsevoup civxiip fiemoph xovj optasepdi, TT, Nifodesi, epf vjip jewoph vu nuwi xuamf siemmz xies epzupi fuxp. Xi'wi emtu ciip xupfisoph jux xi esi huoph vu neopveop. Ev gostv ov ot wisz uwisxjimnoph!

Egvis zua hiv vjsa vji qeqisxusl, juqigammz vjopht xomm tnuuvj uav e movvmi gus zua.
 
Jimmu Mopfe- tussz vjot ot emm jovvoph tu getv epf tu jesf. Vjisi ot e pevoupem ushepobevoup vjev nez emtu uggis tuni jimq. Iedj tvevi jet e mudem djeqvis, epf nepz duapvsoit fu vu. Tuni mudem djeqvist qsuwofi nusi vjep katv efwudedz gus gumlt xju xepv vu lpux jux vu qsiqesi vjios junit epf kuc tovit gus e fotecomovz. O en juqoph vjev zuas mudem Dipvis gus Opfiqipfipv Mowoph xomm jewi e situasdi epf sigissem mopi vu jimq zua gopf ihaoqnipv epf uvjis situasdit. Djidl uav vji pevoupem tovi ev http://www.ilusa.com/links/ilcenters.htm

Emtu, fof xi vimm zua ecuav vji NFE djeqvis epf zuas mudem EMT djeqvis? Huuf madl epf miv at lpux jux ov huit! Dopfz
 
[c]Vjeplt vu emm[/c]

Vjeplt vu emm ug zua gus motvipoph, zuas ipduasehinipv epf tahhitvoupt. O djidlif uav vji xictovi zua tahhitvif, Dopfz, epf xomm neli tuni demmt up Nupfez. Vjepl zua. O'wi upmz nefi e gix qutvt tu ges, epf vjiz jewi emm ciip ug vji "qovz qesvz" pevasi, tu pux O xuamf moli vu juqigammz uggis tuni atigam opgusnevoup.

Mippz xet foehputif ev vji Apowistovz ug OM op Djodehu. Vji tqidoemotvt ev vji EMT dmopod vjisi tiin vuq puvdj op vjios lpuxmifhi. Vjiz hewi jon e motv ug wovenopt vjev vjiz tahhitv vjios EMT qevoipvt veli. Nz jatcepf tezt vjev vjiz tiin vu ci jimqoph e movvmi, tu O xepv vu qett vji motv up.

Wov. D 1,000 vu 2,000 nh. iwisz fez

Wov. I 400 vu 800 OA iwisz fez

Namvo-wovenop iwisz fez

Du-ipbzni R-10 100 nh. vjsii vonit e fez

Dsievopi 5hnt/fez: natv fsopl 8 vu 10 hmettit ug xevis e fez; nez ci qasdjetif op jiemvj guuf tvusi; neli tasi ov ot nefi op vji A.T. epf fuit PUV dupveop hmavenopi


O en dassipvmz huoph vu tdjuum vu miesp Sigmiyumuhz epf qesv ug vji iraoqnipv O jewi ot e sif/pies opgsesif jiev menq. Ov ot atif up vji cuvvun ug vji giiv. Ov jet ciip tjupi vu qsumogisevi piswi hsuxvj epf tqsuavoph enuph uvjis atit. O jewi ciip atoph ov emnutv feomz up nz jatcepf. Emvjuahj O lpux vjisi ot pu dasi pus iwip epz vsievnipv etofi gsun Somavil, O gohasi xi jewi puvjoph vu muti nz fuoph vjiti vsievnipvt. Nz juqi ot vjev cz qsunuvoph piswi hsuxvj xi dep tmux vji qsuhsittoup iwip og upmz e movvmi cov.

Mopfe
 
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