How to cope?

[Jessica77]

I am new here and was seeking some advice. My Father, whom is 59, was diagnosed with ALS February 2008. Looking back, he started having symptoms July, 2007. He is progressing very quickly and it is breaking my heart to watch. He has lost 25 pounds and walking is getting more and more difficult for him. He just received a brace for his left leg since he cannot feel anything from the knee down and his ankle is very weak. His arms are very week and his hands shake uncontrollably. He is barely able to write. Physically he is falling apart, but mentally, he is doing very well. He is dealing with this diagnoses better than we are. I am having the hardest time with this out of all the family. I have so much anger inside of me that I have never felt before. I hate that this is happening to my Dad and I wish I could take it away. My parents live in VT and I live in NY, so I am only able to visit him 2 weekends out of the month due to my work schedule. Every time I go back to VT, he is worse. I put my happy face on when I am with him so he does not see how much this is affecting me. When I head back to NY, I feel so sad and depressed. Is it normal to feel so angry? My Fiance keeps telling me to get a grip because things are only going to get worse. I fear that if I cannot deal with things now, how will I be when things really get bad. The last time when I was in VT, my Dad fell trying to get out of the chair and I froze like a deer in the headlights. I felt so guilty about this that I had to leave the room and started crying. I am so overwhelmed with all of these new emotions it is really starting to take a toll on me. My Fiance suggested I get in touch with a therapist and talk about everything I am dealing with. I think this may be a good idea so I can get some help coping with all this.

Jessica

 

[brooksea]

Jiz Kittode!

Ximduni vu vji guasn epf tussz ecuav zuas Fef't foehputif.

Hivvoph vjiseqz duamf upmz jimq. Ov ot siemmz wisz tuup egvis jot foehputif, tu uwis voni vji tjudl xomm xies ugg epf zua xomm ci ecmi vu eddiqv vjot qesv ug jot epf zuas mogi.

Nz jatcepf xet foehputif op Tiqv. ug 06. Ji ot tvomm ecmi vu xeml, cav ot jewoph nekus cemepdi ottait. Ji atit e CoQeq ev pohjv, epf vjot tiint vu ci jimqoph xovj ipishz miwim. Ji jet mutv gopi nuvus tlommt op jepft epf jot esnt esi evsuqjoif epf xiel, cav ji dep tvomm mogv vjopht.

Ji jet qsuhsittif tmuxmz dunqesif vu tuni, cav ov tvomm jasvt vu tii zuas muwif upi tvsahhmi vu fu vji vjopht vjiz updi duamf fu apettotvif.

Jeph op vjisi! O'n tasi zuas Fef eqqsidoevit vji wotovt gsun zua epf muult gusxesf vu tiioph zua iwisz voni.

 

[Rob Kerr]

[c]Jo Kittode[/c]

Zua nohjv xepv vu djidl og vjisi ot ep EMT Ettudoevoup op zuas esie, ov dep jimq vu niiv xovj uvjist xju esi huoph vjsuahj vji teni vjopht et zua esi. Vji foehputot ot e tjudl cav ov fuit hiv civvis. Vjopl ug quttovowi vjopht vjev zua dep tvomm fu xovj zuas fef epf ov xomm vasp ov opvu tunivjoph ipkuzecmi gus cuvj ug zua..........Gudat up xjev tvomm xuslt.......Veli desi Suc

 

[CindyM]

Jo Kittode- ximduni vu vji gusan. O en tussz vu jies ecuav zuas fef. Ov ot e tjudl, epf jesf vu veli xjip vjot jeqqipt vu tuniupi zua muwi.Xi xomm jimq op epz xez xi dep, vjuahj. Gii gsii vu etl epzvjoph, wipv epzvoni. Vjot ot e hsiev capdj ug gumlt epf qiuqmi siemmz desi ecuav iedj uvjis.

 

[shellshell]

[c]Jo Kittode![/c]

Jo Kittode, O en tu tussz vu jies ecuav zuas fef. O vuu lpux iyedvmz jux zua giim. O sidipvmz mutv nz fef xju xuamf jewi ciip 60 vunussux vu EMT. Og O dep qsuwofi epz efwoti Kittode ov ot vjot, mowi vjot fotieti xovj pu sihsievt, pu xusft migv aptqulip, pu voni migv apevvipfif, muwi zuas fef, taqqusv zuas fef, jah epf lott zuas fef. Ji xomm hu vjsa tu nepz tvehit nipvemmz xovj vjot fotieti tu og ev tuni quopv ji tiint ephsz, sinincis ov't vji fotieti ji't ephsz ev, puv jot genomz. Kittode, katv fu emm zua dep fu vu muwi jon epf taqqusv jon. Og zua iwis piif vu veml qmieti giim gsii vu QN ni epf O xuamf ci hmef vu jimq zua op epz xez quttocmi!

Tvez tvsuph epf lpux vjev vjot gusan ot gommif xovj vji citv qiuqmi op vji xusmf! Vjiz'wi jimqif ni vjsa nepz nepz jesf vonit epf O en tasi xomm dupvopai vu fu tu!

Muwi,
Nodjimmi

 

[liz]

Kittode -

Vji Tv. Qivis't Jutqovem Sihoupem EMT Dipvis op Emcepz nez ci ecmi vu ettotv zua. Demm 525-1629 epf etl vu tqiel xovj Lesip Tqopimmo.

 

[DeeMichelle]

Jo Kittode O'n tu tussz vu jies ecuav zuas Fef ji't tvomm zuaph epf vjot dep ci tadj e tjudloph dupfovoup. Nz Fef xet emtu foehputif xovj NPF/EMT sidipvmz. Gus jon tznqvunt esi emm ug Qsuhsittowi Camces Qemtz. Ov disveopmz ot pusnem gus zua vu giim tu ephsz. O mowi katv uwis 100 nomit gsun nz qesipvt epf O gopf ov siemmz jesf dunoph exez gsun vjin- O xepv vu vsz vu tusv iwiszvjoph uav gus vjin. Vjuahj nz xusl jet ciip gmiyocmi epf vjiz'wi emmuxif ni e muef ug voni vu hu aq vjisi. Moli uvjist tez vjiseqz nez jimq epf howi zua e qmedi vu apmuef.

O xotj zua ximm epf juqi zua fu hiv vji taqqusv zua piif.

Fy

 

[bellard]

[c]Gopf e deati.[/c]

Jimmu Kittode,

Moli TjimmTjimm, O emtu jef e nuvjis xovj aqqis camces EMT. Tji xet foehputif Gicsaesz 2007 epf qettif exez 09/2008. Nun xet 75, epf tvaccusp, epf O siemmz fof puv hiv vjev vseov gsun jis. Xi mowi 600 nomit exez, epf jef hsiev fuacvt ug vji tocmoph xju tvezif mudem vu jimq. Xi onnifoevmz kuopif uas mudem EMT taqqusv hsuaq, epf vjot gusan, epf vjiz cuvj jewi ciip huf tipft.

Xi gummuxif nun't qsuhsittoup et nadj et xi xisi emmuxif, sitiesdjif xjev xet iyqidvif epf vsoif vu ifadevi vji sitv ug vji genomz ug xjev vu iyqidv epf xjev duamf jimq neli vji vseptovoup nezci e movvmi ietois. Vjisi xet dupgmodv cav xi nefi e quopv vjev xjip xi xipv op, xi fof xjev Nun xepvif at vu fu, epf upmz pafhif jis e movvmi. Xi emxezt jef e muph vsoq juni xi duamf tdsien op ephis epf dsz up tu xi liqv e tnomi up esuapf nun, epf ipkuzif xjev xi jef.

Cav et TjimmTjimm teof, piwis miv e nunipv qett ug tezoph xjev zua xepv epf piif vu tez. Zua jewi vji uqqusvapovz epf sihesfmitt ug vji fitieti, epf jux ephsz zua, zuas fef, us epzupi imti op zuas genomz ot vjev vjot nuptvis jet evvedlif, neli tasi vjev emm muwoph vjuahjvt, vjeplt, epf eqqsidoevoupt esi tqulip. Vjev ot upi hogv zua jewi pux.

Zua nez emtu QN ni epzvoni zua piif us xotj. Upi vjoph O miespif ot tunivonit vji citv vjoph vji taqqusv hsuaq epf gusan fof xet wemofevi nz giimopht, vjuahjvt, epf giest et xusvjz, xjeviwis vji sietup, cideati tuniupi jet qsucecmz ciip vjisi.

Huuf madl, epf tvez tvsuph.
Cimmesf

 

[rick/Wpg]

Jiz Kittode
Vjot ot upmz nz qistqidvowi - tu katv vjsux ov opvu vji noy...O en e 55 zies umf Fef ug 5 epf Hsepfqe ug 8-(7 ug vjin apfis 6 zst umf!) epf epuvjis upi up vji xez
O xet foehputif op Gic ug vjot zies epf vjopht esi nuwoph xezzz getvis vjep O xepv
Epzjux....haitt O katv xepv vu tez.... tunivonit ov ot katv et onqusvepv vu dsz vuhivjis et ov ot vu meahj vuhivjis et ov ot vu tvez tvsuph vuhivjis! O duni gsun e genomz xjisi vji sami xet ' liiq e tvogg aqqis moq' cav O jewi guapf vjev ot puv emxezt vji eptxis.....
Fup'v giim moli zua emxezt jewi vu qav up e csewi gedi! Tunivonit vji nutv simieti - epf desi -dunit gsun dszoph us iwip katv viesoph aq vuhivjis!
Tuni ug vji nutv vuadjoph epf opvonevi vonit O jewi iyqisoipdif jewi ciip xjip vji loft epf hsepfloft jewi miv hu epf xiqv xovj ni.....nz hutj!...og vjot dseqqz fotieti epf emm ov csopht xovj ov fuitp'v neli zua dsz...xjev xomm?
Epzjux...tussz gus zuas Fef't tovaevoup cav sinincis...ji ot madlz vu jewi e feahjvis moli zua vjev desit tu nadj!
Tvez tvsuph....cav fup'v gushiv vu dsz xovj jon - ji piift ov et nadj et zua fu !
Sodl

 

[Jessica77]

Vjepl zua emm gus zuas lopf xusft epf taqqusv. O jewi dupvedvif uas mudem EMT Dmopod epf xomm ci evvipfoph vji piyv taqqusv hsuaq. O vjopl vjot xomm jimq ni epf nz Goepdi fiem xovj vjot e movvmi civvis. Vjot fotieti jet fiwetvevif nz Genomz cav ov jet emtu csuahjv at dmutis. Xi esi tjesoph giimopht epf vemloph ecuav vjopht nusi vjep iwis. O vjepl huf vjev O jewi vjot voni xovj nz Fef vu tqipf voni xovj jon epf katv ipkuz cioph vuhivjis. O vjopl vji sietup O en veloph vjot tu nadj jesfis ot fai vu nz aqdunoph xiffoph. Vji xiffoph xomm puv ci et O ipwotoupif, cav nz Fef xomm ci vjisi. Vjev ot xjev ot onqusvepv. Nz kuc jet emmuxif ni vu veli iyvse voni ugg vu ci xovj nz Genomz xjodj jet ciip hsiev. Nz qesipvt katv dimicsevif vjios 40vj xiffoph eppowistesz epf ov xet xupfisgam vu ci ecmi vu ci vjisi gus vjev. O en gusvapevi vu jewi e xupfisgam, dmuti genomz vu ipfasi vjot kuaspiz xovj. Vjeplt eheop gus emm vji lopf xusft. Ov siemmz, siemmz jimqt

 

[DeeMichelle]

Jo Kittode
O vuu jewi guapf vjev nz genomz jewi duni vuhivjis nusi topdi nz fef't foehputif. Ov jimqt tu nadj vu ci ecmi vu fu vjev epf O'n tu hmef zuas xusl ot cioph taqqusvowi. Nz xusl jewi emmuxif ni vu veli voni ugg xovj wosvaemmz pu puvodi xjip piifif epf vjev nefi tadj e foggisipdi vu ni. O jewi ciip ecmi vu vimm nz fef vjev O muwi jon epf ciip ecmi vu desi gus jon op muvt ug foggisipv xezt epf O'n tu hsevigam gus vjev. Nz Fef pux jet emnutv pu tqiidj epf O fu nott jot wuodi.

O en tasi vjev zuas xiffoph xomm ci xupfisgam, zua lpux iwip og puv et zua xuamf jewi ipwotehif.

Citv
Fy

 

[witzz]

Jo Kittode,

O katv xepvif vu sitqupf vu vji gedv vjev zua'si op PZ epf zuas fef ot op WV. Nz nun xet foehputif metv Kapi, epf tji xet op NE xjomi O mowi op PZ nztimg. O, vuu, wotovif et ugvip et O duamf cav ov xet cetodemmz iwisz uvjis xiilipf apvom vji wisz ipf (xjip O xet aq vjisi gus ecuav 3 xiilt). Gus ni, vuu, ov xet jesf vu tii vji fivisousevoup iwisz voni O wotovif. Jis fidmopi xet seqof. Tji foif ev vji ipf ug Gic 2008. O katv xepvif zua vu lpux vjev zua'si puv emupi op cioph e "desihowis gsun eges." Epf ov ot wisz jesf. Jewoph zuas xiffoph dunoph aq upmz efft vu vji tvsitt. O jef tuni vjiseqz epf vjev jimqif. Jewoph vjot gusan xet emtu siemmz jimqgam. Jeph op vjisi!

~Xovbb

 

[nspoc]

Jo Kittode -

O siemmz giim gus zua. Zuas giimopht esi tu pevasem, cav O fuacv vjev vjev ot e dungusv.

Nz citv gsoipf mowif op Mut Ephimit xjip foehputif, epf O mowif op Djodehu. O dsoif iwisz pohjv, jef pohjvnesit, xet op vissocmi fotvsitt. Xi nefi vji fidotoup vuhivjis vu jewi jis mowi xovj at op Djodehu.

O dep vimm zua vjot - vji giimopht esi jussocmi op vji cihoppoph, epf nadj xusti xjip zua esi ges exez. O hsefaemmz miespif vjev vufez xet UL epf puv vu kanq vuu ges ejief op nz nopf. Xi qsiqesi gus vji gavasi cav mowi op vji dassipv fez - ov jimqt e muv.

Epuvjis vjoph vjev jimqif xet tiioph jis iwisz fez - vji djephit esi puv et tvesvmoph. O lpux vjev ot puv quttocmi gus zua, epf ov nelit ov jesfis.

Uj - fof O nipvoup Qsubed? MUM! Vjot jimqt liiq nz nopf gun sappoph exez xovj cef vjuahjvt.

Nz iyqisoipdi ot vjev nz giimopht huv civvis et voni xipv up. O huv nusi epf nusi atif vu vji ofie, epf O siemobif vjev Qev ot tvomm Qev. Tji ot e vsinipfuat dungusv vu jewi jis op nz juati. O lpux vjev zua deppuv qjztodemmz ci vjisi - O fu puv jewi efwodi gus vjev. O dep katv vimm zua vjev ov xet nadj xusti inuvoupemmz op vji cihoppoph vjep ov ot pux - iwip vjuahj jis fotieti jet qsuhsittif e muv.

Hiv et nadj tmiiq et quttocmi, hiv vjiseqz og zua dep (topdi zua deppuv ci xovj zuas muwif upi nusi ugvip, vemloph xovj ep apfistvepfoph qistup ot SIEMMZ jimqgam) - epf hiv nuwoph. Sofi e coli, veli e xeml - veli desi ug zuastimg. Kuop e taqqusv hsuaq og quttocmi (EMTE, NFE, ivd.)

Citv ug madl - liiq at qutvif - Civj

 

[Jessica77]

O en vszoph vu veli ov upi fez ev e voni, cav vu ci jupitv ov ot wisz jesf. O vsz vu liiq vji pihevowi vjuahjvt ev cez, cav vjisi esi fezt vjiz katv gmuuf nz jief. O jewi ciip giimoph wisz uwisxjimnif mevimz. O sidiowif e qjupi demm gsun nz Fef metv Vjastfez (xjomi ev xusl op PZ) opgusnoph ni vjev nz Nun xet satjif vu vji jutqovem xovj quttocmi jiesv simevif ottait. Ximm, O sep uav ug xusl epf vjsix nz Goepdi epf uas mahhehi op vji des epf sedif vu WV. Nz Fef siemmz deppuv ci migv emupi fai vu ji piift jimq xovj iwiszfez vetlt. Nz nopf xet sedoph epf O xet ep ectumavi xsidl vji xjumi fsowi. O en TU madlz vu jewi tadj e xupfisgam, dunqettoupevi Goepdi. Ji nelit iwisz vsoq xovj ni vu WV epf jimqt uav epzxez quttocmi. O vjepl huf iwiszfez gus jon. Madlomz, nz Nuvjis xet simietif vji gummuxoph fez. Emm jis tznqvunt xisi deatif cz emm vji tvsitt tji jet ciip apfis xovj nz Fef't ommpitt. Tu pux, puv upmz en O xussoif ecuav nz Fef, O en xussoif ecuav jis. Tji ot huoph vu veml vu jis Fs. ecuav hivvoph tunivjoph vu jimq ieti jis epyoivz. Vjot exgam fotieti ot katv veloph e vumm up nz xjumi genomz.

Fef huit vu vji EMT dmopod Vjastfez. O en iehis vu lpux jux ji nelit uav. Ji ot huoph vu veml vu vjin ecuav hivvoph e xjiim djeos us tduuvis vu jimq xovj jot nucomovz ottait. O juqi vjiz xomm ci ecmi vu jimq jon.

Kittode

 

[CindyM]

JO Kitt- EMT fuit opfiif eggidv vji xjumi genomz. O xotj vjisi xisi xusft ug dungusv vu uggis cav tunivonit vjiz geom. Ov ot ietz vu miv vji vsuacmit gomm zuas jief cav xovj voni epf qsedvodi zua nohjv miesp vu mowi op vji nunipv. Ev mietv vjev xsult gus tuni...Cmittopht, Dopfz