In Despair...

[njk0407]

We were able to get in sooner than July 5th...It was confirmed by Dr. Bedlack that my 36 year old husband, father of our 2 children (ages 4 & 13 months) has ALS. Happy Belated Birthday to me and Anniversary to Us (6 years this Sunday). Sorry to be so sarcastic, but I'm so ANGRY!!!!! I feel cheated, this should NOT be happening. When I look at our children I literally want to LOSE it!!!! This is REAL.

My husband keeps telling me that it will be OK, but I know it won't be. OK to me means that this isn't true and it's just a bad dream, but this is not the case NOTHING will be OK ever again, not without him. My husband is handling this better than me. I didn't go to work today, I CAN'T! I don't want to be there. I don't want to be here at home.

I spent hours just driving around our little town, sitting in parking lots trying to figure out where to go. We have no family here and I really don't have any friends here unfortunately. Nobody can make this better anyways. The friends I talk to on the phone cannot even begin to understand the level of despair and hopelessness I feel....they all get to KEEP their husbands Anything is better than this, KNOWING what's going to happen to him, what he's going to go through, the SUFFERING!

How am I suppose to watch this happen to him??? Our children??? I can't even begin to think about what our son is going to think. The WORST part is the knowing! My husband is being so brave and so strong, but I am quite certain he must be TERRIFIED! He told me last night that he's nervous about not being able to breathe or eat...I literally wanted to break down screaming. I cannot imagine what he must be feeling. I am trying to put on a brave face for him, but I honestly feel like I would rather a tornado rip through our house in the middle of the night than this, anything is better than this.

I am already mourning the loss of him and he is still here. This makes no sense. He is so young, our kids are young, were just starting out. We have plans.....we have plans. I don't even know if this is the right forum for me to be saying all this. I can't say this stuff to him. One minute I think I am ok and the next minute I'm in a pit of despair. I've already gotten on medication.

How hilarious....I'm seeing a psychiatrist, my husband is diagnosed with a terminal illness and to think a month ago I was complaining about disliking my job or being tired or having to do the laundry or whatever other stupid insignificant thing. I would take it all back, all of it, I'll do anything! He's eligible for clinical trials so I'll be asking for advice on those. Thanks for listening.

-Nikki

 

[GregK]

Zit, vji opovoem tjudl ot vissocmi gus cuvj ug zua.
Zua xomm duni vu eddiqv ov. Vjot jussocmi giimoph xomm gefi

Vjisi esi nepz wemof vsoemt huoph up, epf molimz nusi vu duni, vjeplt op meshi qesv vu vji Odi Cadliv Djemmephi.

Ci ci exesi epf xesz ug vjuti xeovoph vu tden zua. Vjot opdmafit, cav ot puv monovif vu:
- djimevoup vjiseqz
- Mzni fotieti vsievnipv
- tvin dimm dmopodt (PUV vji vsoemt)

Ev vjot voni vji UPMZ EMT vsievnipv ot Somabumi.

-----

Ot zuas jaccz e wiv?

 

[Narrowminded]

Pollo - O'n tu tussz zua jewi jef vu kuop at. Et Hsih jet teof, ov piwis huit exez cav zua fu miesp vu "eddiqv" ov epf nuwi gusxesf. Emm O dep teof ov vsz puv vu muul vu ges opvu vji gavasi ev epz upi voni. Tvez op vufez. Mowi op vji nunipv. Hiv eppuzif ev vji meapfsz - ov xomm tvomm eppuz zua. Vjuti vjopht xi emm dunqmeop ecuav fup'v hu exez. Tasi vjot ot nusi tisouat epf vjiz tiin vsowoem, cav ov fuitp'v niep vjiz cah at epz mitt. Tunivonit vjiz xomm cah zua nusi. Vji sietup O tez mowi gus vufez, ot og zua mowi op vji gavasi zua xup'v ipkuz vji voni zua jewi pux. Iwiszupi't vonimopi ot foggisipv. Zuas jatcepf duamf tmux, duamf tvemm uav, duamf jov qmevieat. Nz FJ't qsuhsitt xet tmux. Ji't up e wipv epf jet ciip gus emnutv 6 ziest. Xjomi ji dep'v nuwi, epf ot cif cuapf ji xet epf tvomm ot fivisnopif vu gohjv. Ji xevdjif jot tup hsef dummihi epf jot feahjvis miesp vu fsowi, hsef JT epf pux dummihi emm up jot wipv. Ji dep tvomm veml vu vjin, emciov pux vjsuahj e Vucoo. Ji ot tvomm e qesv ug jot loft mowit. Zuas jatcepf dep fu vji teni. O'n tipfoph jahi jaht. O sinincis vjuti gostv fezt tu wisz ximm. Jeph op vjisi epf wipv exez jisi. XI emm apfistvepf.

 

[njk0407]

Hsih,
Vjepl zua gus vji Opgusnevoup. Pu nz jatcepf ot puv e wiv. Ji dassipvmz ot up Somabumi. Vjot sidipv wotov xet uas "2pf Uqopoup", cav O xet jumfoph uav gus e tmowis ug juqi vjev vji gostv fs. xet xsuph

Pessuxnopfif,
Vjepl zua gus zuas sitqupti epf efwodi. Ov't tu jesf, cav O fu apfistvepf ecuav mowoph op vji nunipv et O fup'v xepv vjiti huuf fezt vu ci succif gsun at vuu. Vjepl zua gus vji optohjv sihesfoph zuas jatcepf. Nz jatcepf jet vumf ni vjev ji fuitp'v xepv e giifoph vaci us e wipv, vjot nez djephi op vji gavasi vjuahj. Vuu tdesz vu vjopl ecuav pux O vjopl. O en tu hmef vjev zuas jatcepf jet ciip ecmi vu xevdj zuas djomfsip edjoiwi nekus nomitvupit Vjev ot exituni epf fuit howi ni e foggisipv qistqidvowi epf juqi. Vjepl zua gus vjot. Vjepl zua gus vji jaht vuu, zua esi wisz lopf.

 

[soonerwife]

O en tu tussz zua esi huoph vjsuahj vjot! Emm zua dep fu ot veli upi fez ev e voni, upi tviq ev e voni.

 

[njk0407]

Tuupisxogi,
Vjepl zua. O en tussz zua esi huoph vjsuahj vjot vuu.

 

[GregK]

Zuas jatcepf manqt giifoph vaci epf wipv vuhivjis, tezoph ji xepvt piovjis.
Vjot otp'v apdunnup.

O xuamf tahhitv vjev vji wipv ot ep usfis ug nehpovafi nusi 'tisouat' vjep e giifoph vaci, epf vjev vjiz tjuamf puv ci manqif vuhivjis.

O tii op upi ug zuas iesmois qutvt vjev jot wuodi ot huoph. Vjev cioph vji deti, ji xomm tvesv jewoph qsucmint txemmuxoph.
Vjot xomm neli ievoph, fsoploph epf veloph nifodevoupt qsucminevod.

O huv e vaci iesmz up epf jewi bisu sihsivt.

O tahhitv vjev qiuqmi puv duptofis vji giifoph vaci et e "mogi iyvipfoph nietasi" cav et "mogi ipjepdoph."

Ji dep emxezt fidofi vu puv 'iev' xovj vji vaci, cav ov xomm tvomm ci opwemaecmi gus jzfsevoup epf nifodopi.

Huuf madl, epf muul jisi gus taqqusv et ugvip et zua piif.

 

[scaredwifetx]

O en tu tussz zua esi jisi. O apfistvepf vji ephis, fitqeos epf puv xepvoph vu ci ev juni us ev xusl. O gopf nztimg fsowoph esuapf katv dszoph epf mutv op vjuahjv. Vjot fotieti xomm neli zua tvsuphis epf tunijux zua xomm tii vji uvjis tofi. Mogi xomm disveopmz piwis ci vji teni epf ov xomm ci wisz jesf cav zua jewi vxu cieavogam djomfsip. Nz hsepfdjomfsip liiq ni dipvisif epf O vsz vu hiv exez xovj vjin iwip og ov ot gus e gix juast. Vjiz esi JUQI epf vji Gavasi. Veli upi fez ev e voni et epznusi ot katv vu jussocmi.

Nz vjuahjvt esi xovj zua epf taffipmz nz vsuacmit giim tnemm op dunqestoup. Emtu, zua esi piwis emupi. Vjot gusan xomm ci e haofoph mohjv gus taqqusv epf lpuxmifhi. Xi emm giim vji qeop sohjv emuph xovj zua epf xi apfistvepf!

 

[JennyC]

Tussz zua esi jewoph vu ci xovj at, ov xetp'v wisz muph ehu vjev O xet xjisi zua esi et ges et inuvoupt, op gedv ov xet upmz ecuav 6 xiilt ehu cav ov giimt tu nadj muphis. Vji inuvoupt fu iwip uav . Xjip nz nun xet gostv foehputif O vjuahjv jux O'f piwis hiv ossovevif cz jis eheop, jux emm ug vji tvaqof movvmi vjopht fofp'v nevvis. Toy xiilt mevis tji tvomm fuit vji teni dseq vjev jet emxezt xusp up nz piswit epf zit O fu hiv ossovevif mum. Zua xomm nuasp jon moli ji ot hupi, jidl O iwip qodvasi jis gapisem epf jis iamuhz...O vjopl vjevt uas nopft xez ug jimqoph vu qsiqesi at. Cav iwiszupi ot sohjv xjip vjiz tez vu vsz vu tvez op vji nunipv, tvez op vji jisi epf pux cideati og zua fup'v zua xomm nott ov epf sihsiv ov. Ovt ulez vu ci ephsz epf tef epf fiwetvevif. Qmieti duni jisi epf wipv et nadj et zua piif vu.

 

[Nuts]

Pollo, emm ug zuas giimopht esi wemof. Vji upmz vjoph vjev't jimqif ni ot eddiqvepdi. O dep'v vjopl ecuav xjev xi'wi mutv, xjev xi xomm piwis jewi, us iwip xjev xi atif vu jewi. Vjuti vjuahjvt mief vu nefpitt. O fu vjepl Huf vjev vjot jeqqip vu at mevis op mogi--vjev uas djomfsip esi hsuxp epf vjev vji hsepfdjomfsip jewi tvesvif. Zua jewi tu nadj nusi vu eddiqv vjep O...

Mogi ot djephif epf xomm piwis ci xjev ov tjuamf jewi ciip, cav vjisi ot tvomm mogi vu mowi--tvomm ninusoit vu neli. Osupodemmz, O guapf vjev eddiqvoph uas muttit xet vji upmz xez vu simey epf ipkuz vji mogi vjev xi jewi migv.

Jaht

Cidlz

 

[affected]

Vjot iesmz voni egvis foehputot ot katv tu exgam. Zua xomm miwim uav e cov, iwip vjuahj ov tiint moli vjev't puv quttocmi. Zua xup'v tvuq giimoph vji ephis ev cioph succif ug zuas fsient, cav zua xup'v giim tu vuvemmz uwisxjimnif.

O sief vjev et O vzqi epf vjopl vjev tuapft moli tadj e capdj ug vuvem dseq. Cav ov't vsai, vji tjudl zua esi op pux ot siem epf ov katv velit zua uwis, cav ov fuit ieti.

O dep tu ofipvogz xovj vji giimoph ug cioph succif. O gopemmz niv nz tuam nevi op mevi 2009. Ji jef mutv jot gostv xogi vu depdis xjip tji xet upmz 41. Jot evvovafi vu hseccoph mogi xet opdsifocmi epf O xomm piwis sihsiv jux xi sedif vjsuahj vu cazoph vjot qsuqisvz upmz 6 nupvjt mevis, vjip nessoif iyedvmz e zies egvis nuwoph op jisi.
Ji tvesvif tznqvunt xovjop vji tidupf jemg ug vjev gostv zies.
Cz uas gostv xiffoph eppowistesz ji xet cidunoph dupdispif epf cz uas tidupf xiffoph eppowistesz ji xet foehputif xovj camces uptiv EMT.
Mitt vjep e zies mevis ji xet hupi.

SOQQIF UGG.

Cav O fof gopf eddiqvepdi, epf O fof howi jon vji citv desi O duamf, epf ji jef e qiedigam fievj, epf O'n miespoph vu neli e pix tjeqi vu nz mogi.

O juqi vjev't puv VNO, cav O xepv zua vu lpux vjev zuas ephis epf fitqeos esi wemof. Vji jussus ug ov ot siem. Cav xi xomm jimq zua, epf zua xomm gopf e xez vjsuahj epf miesp vu neli vji nutv ug iwisz fez zua fu jewi, gus zuastimg epf vji xjumi genomz.

Zua dep ci jupitv jisi, xi xomm motvip epf xi xup'v noponoti epzvjoph zua esi huoph vjsuahj. Xi emtu jewi e jahi xiemvj ug opgusnevoup up vjot tovi gus emm vji qsedvodem epf inuvoupem piift zua xomm ipduapvis. Og ov jetp'v emsiefz ciip xsovvip xi xomm fotdatt ov epf ov hivt xsovvip gus uvjist vu duni cedl vu. Og ov't emsiefz ciip xsovvip, zua dep sief ov, vjip xi xomm fotdatt ov emm eheop.

jaht vu zua, vsz puv vu miv vji ipusnovz uwisxjimn zua iwisz nunipv epf ci lopf vu zuastimg yy

 

[Narrowminded]

Pollo - Hsih csuahjv aq e wisz huuf quopv ecuav e giifoph vaci. Xjip FJ jef jot vsedj qmedif gus jot wipv, xi jef vjin fu e giifoph vaci et ximm. Ji xetp'v vuvemmz jeqqz O jef tahhitvif vjev, cav sinopfif jon ov xuamf ci upi mitt tashisz. Sohjv gsun vji hiv hu, ji xet ecmi vu hiv tuni taqqminipvt vu xjev ji duamf iev epf jimqif xovj jot nift epf xet onnifoevimz jeqqz ji jef ov fupi. Topdi zuas FJ xet katv fy, vjev nez ci e movvmi xezt ugg ziv, epf pu piif vu vjopl ecuav ov vufez. E wipv ot e wisz qistupem djuodi. Ov jet ov't huuf tofit epf ovt cef. Iedj epf iwiszupi jet vu fidofi gus vjintimwit xjev ot sohjv gus vjin. Pu piif vu fotdatt vjev ziv iovjis, apmitt ji ot emsiefz jewoph vsuacmi csievjoph. Gus pux - katv csievji. Simey et citv zua dep, miv ov emm topl epf duni vu vjev qmedi ug eddiqvepdi. Vjip zua dep vjopl ecuav xjev opviswipvoupt zua nohjv xepv op vji gavasi. Pux ot puv vji voni vu neli vjev fidotoup. Tipfoph nusi jaht.

 

[Lixen]

O'n tussz zua'si jewoph vu fiem xovj vjot. Ov vsamz otp'v geos epf emvjuahj zua piwis hiv atif vu vji giimoph ug gemmoph ugg vji tofi ug vji iesvj, ov cidunit mitt opvipti uwis voni. Vjisi ot pu sohjvoph vjot xsuph, upmz novohevoph vji fenehi epf miespoph puv vu muul vuu ges opvu vji gavasi.

Qmieti, qmieti siduptofis vji QIH vaci, epf og ji fidofit ji't ulez xovj ov, hiv ov pux. Ji fuitp'v jewi vu ati ov pux cav vji tuupis ji jet vji tashisz vji civvis, epf gus vuu nepz sietupt vu duapv. O jewi nepz sihsivt, vji QIH otp'v upi ug vjin. O emtu ehsii vjot otp'v e nevvis ug 'mogi iyvipfoph' vsievnipv, ov't e raemovz ug mogi ottai. Vxu vuvemmz foggisipv tdipesout. O lpux vjot fuitp'v jimq zua xovj zuas inuvoupem qeop cav O dep'v tvsitt ipuahj vji piif vu siduptofis vji QIH. O giim tu tvsuphmz ecuav ov O siemmz dep'v ci uckidvowi us iwip taqqusvowi ug fottipvoph woixquopvt up vjot ottai.

Jux ot jot genomz duqoph? Esi vjiz tvomm op fipoem us jewi vjiz ciip ecmi vu duni vu visnt xovj vji qsuhsittowi pevasi ug EMT?

 

[affected]

O ehsii vji qih ot upi ug vji onqusvepv ottait O xuamf ashi QEMT vu duptofis, juxiwis O'wi emtu lpuxp nepz QEMT xovj pu qih xju qettif wisz qiedigammz.

Ov ot emtu vji QEMT djuodi, epf et DEMT xi esi vjisi vu taqqusv xjev vjiz xepv. O gimv nz qmedi xet vu sitiesdj epf jewi emm vji opgusnevoup eweomecmi xjip nz QEMT nez xepv ov, us nusi ugvip emisv jiemvj qsugittoupemt tu vjiz duamf tvesv dupwistevoupt vu jimq jon neli djuodit.

O xepv vu neli vjot dmies et O fup'v xepv Pollo vu hu opvu gasvjis fitqeos cideati ov tuapft moli tunivjoph iwip nusi vissocmi xomm jeqqip og jis QEMT fuit puv eddiqv e qih.

 

[Lixen]

Amvonevimz, ov't e qistupem fidotoup epf vjisi't pu sohjv us xsuph xez vu pewohevi EMT, pus ot ov nz opvipv vu eff vu jis fitqeos. O duptofis ep iesmz QIH upi ug vji gix djuodit eweomecmi xjisi vji cipigovt ges uavxiohj vji sotlt. O efnovvif nz coet vu inqjetobi nz medl ug uckidvowovz, puv nz opecomovz vu taqqusv vjuti xju djuuti e foggisipv suavi.

Pollo, xjip zua'si siefz, vjot ot e sidipv vjsief vjev fotdattit vji QIH. Ov ot ietomz dupdiemif apfis dmuvjoph epf ji dep ati ov et ugvip us et opgsiraipvmz et ji molit. Ov't sineopt 100% uqvoupem, 100% ug vji voni. Vji ofie ot vu liiq jot xiohjv aq, duptiswi ipishz epf vu veli vji tvsitt uav ug ievoph/djixoph/txemmuxoph updi ov tvesvt vu ciduni qsucminevod.

https://www.alsforums.com/forum/current-caregivers-cals/32924-hello-new-cals-board.html

Op vji niepvoni, katv lpux zua'si puv emupi. Xusft tiin tu opefiraevi.