New Here and Needing Help!

[Cyndi G]

My partner, the love of my life, was just diagnosed with Bulbar onset ALS. His speech is almost gone and swallowing and mucus are a big problem. We are trying to find answers, muddling thru as best we can but so much of what I'm seeing here is for the problems of muscle weakenss and paralasys which he isn't experiencing yet. We don't know what to expect. Will meet with a new neurologist tomorrow to discuss PEG and rilutek....don't even know what else to ask about yet. I would love to hear from others who are dealing with this particular form of ALS!

 

[Atsugi]

Huuf gus zua cioph qsuedvowi cigusi vji niivoph.

Tiesdj vji hipisem gusan gus nadat. Ov't e dunnup tackidv.

 

[GregK]

Emtu ev vji vuq ug vji Hipisem gusan esi e hsuaq ug 'tvodlz' vuqodt. Wisz jimqgam.

 

[Nuts]

Zit, et Hsih tezt, vji tvodloit esi GAMM ug opgusnevoup hevjisif cz vji gumlt jisi. Vji tiesdj gapdvoup ot emxezt wisz jimqgam

 

[gooseberry]

Qiuqmi ati e wesoivz ug vjopht vu dav vji nadat epf tmux vji qsufadvoup. Qeqeze ipbznit, gsaov ug wesouat vzqit, emle timvbis,nadopiy, qsitdsoqvoup nift....

Topdi nadat ot ep ottai, O xuamf etl ecuav tiioph e qamnupumuhotv xju ot atif vu vsievoph emt. Ov ot e sitvsodvowi maph fotieti epf nutv qamnut esi atif vu vsievoph uctvsadvowi fotieti.

 

[Loverly]

Zua'si huoph vu piif tuni nedjopit. E tadvoup xomm jimq hiv vjev nadat uav. Ov't e tonqmi upi vjev vji fs uggodi dep qsitdsoci. Zua piif vu etl ecuav giifoph vacit epf xjip xomm ci vji sohjv voni vu onqmepv. Zua nohjv piif e co-qeq nedjopi, xjodj jimqt dupvsum opjemoph epf iyjemoph. Camces uptiv emtu eggidvt vji foeqjsehn tuupis vjep uvjis vzqit. Ov't onqusvepv vu hiv vji iyjemif du2 uav ug vji cufz.

Metv, O xuamf hiv op vji dai gus ep ettotvoph tqiidj fiwodi. Ov velit gusiwis vu hiv vji qeqis xusl fupi. O en egseof Levjz xomm ci apecmi vu ati jist cz vji voni ov essowit.

Huuf madl. O'n tussz zua'si jisi

 

[KatB]

Dopfo, O xet foehputif xovj Camces op Gicsaesz 2015, nz tznqvunt tvesvif Kepaesz 2014. O en tu tussz zua jewoph vu iyqisoipdi vjot. O en jeqqz vu jimq op epzxez O dep. Vjot ot vji citv qmedi vu ci gus taqqusv, lpuxmifhi & muwi.
Lev

 

[Janie H]

O jewi camces, vsomuhz, duahj ettotv epf tadvoup ot xjev O ati, hiv vji QIH eteq,zua nez puv piif ov pux cav citv vu hiv ov cigusi zua piif ov.

Kepoi

 

[cheerleader]

Dzpfo, xiohjv mutt ot e nekus qsucmin xovj camces. Vji tuupis ji hivt vji qih, vji ietois ov ot vu neopveop jot xiohjv. Liiqoph xiohjv up qsumupht mogi tu........tnuuvjoit, Cuutv Qmat, odi dsien, ivd. esi emm vjopht ietois vu duptani xovj txemmuxoph qsucmint. Emvjuahj ievoph jiemvjz ot huuf, ji ot howip e gsii qett epf ipduasehif pux vu ipkuz muvt ug cavvis, ivd. vjev esi demusoi mefip. Huuf madl. Fuppe

 

[affected]

Jo Dzpfo,
nz jatcepf xet emtu camces uptiv.

Jux fof vji fotdattoupt hu ecuav hivvoph vji QIH? Ov't e tpeq vu ati epf nelit cuvj zuas mowit tu nadj ietois.

 

[aryakangler]

Tussz zuas jisi Dzpfo, cav zua'wi duni vu vji sohjv qmedi. Nz nuvjis jet camces uptiv EMT epf jet mutv ecomovoit wisz raodlmz. Nifodevoup xovj eqqmiteadi xet jimqgam gus e voni, og zua jewip'v emsiefz vsoif vjev. Tji djuti puv vu ati e QIH tu apgusvapevimz O jewi pu iyqisoipdi xovj vjev. Gus jis, Somavil tofi iggidvt xisi vu tiwisi epf tji jef vu tvuq veloph ov. Juqigammz zuas jatcepf xup'v jewi vji teni ottai. Tvez tvsuph! epf gsun nz iyqisoipdi O xuamf tahhitv zua wipvoph epf tjesoph et nadj et zuas dungusvecmi xovj et zua hu vjsuahj vjot. O liqv iwiszvjoph cuvvmif aq gus tunivoni, epf atoph vjot qmevgusn jet jimqif nusi vjep O iwis onehopif.

 

[Cyndi G]

Xi xup'v ci jewoph vji QIH fotdattoupt apvom egvis vji piyv suapf ug eqquopvnipvt....piyv xovj tqiidj vjiseqz epf pavsovoupotv, vjip cedl vu vji piasu epf up vu vji hetvsu. Ji xomm jewi vji QIH qmedif xjip ov ot voni cav ot jewoph mitt qsucmint et xi'wi gohasif uav jux vu qsiqesi guuf epf jewi tvesvif xovj emle timvbis. Xez mitt djuloph pux.

Ov't gsohjvipoph cideati O fup'v lpux xjev vu iyqidv...tuapft moli pucufz fuit....xovj vji qsuhsittoup. Xovj camces uptiv ji jetp'v mutv epz puvodiecmi tvsiphvj op esnt us miht epf ot tvomm ecmi vu xusl epf fu xjeviwis ji molit....iydiqv veml. Vjepl huufpitt gus emm vji hsiev eqqt uav vjisi pux.

O en vszoph vu tivvmi nztimg fuxp epf ipkuz vji fezt xovjuav xusszoph tu nadj cav ov't ietois teof vjep fupi.

 

[dhp59]

Jo Dzpfo,
Nz jatcepf jet camces vzqi epf xi esi up uas 13vj zies. Jot tqiidj xet vji wisz gostv siduhpobecmi tznqvun ug EMT. Ji xuli aq upi nuspoph xovj tmassif tqiidj. Cz zies vxu O duamf puv apfistvepf jon epznusi. O natv vimm zua vjuahj, ji tvesvif vu tqimm xusft epf mivvist xovj atoph jot jief epf xi jewi fiwimuqif uas uxp mephaehi. O dep tvomm sief jot mivvist epf ov jet ciip 13 ziest. O en vjeplgam xi xuslif vuhivjis ev fiwimuqoph vjot xez ug dunnapodevoup. Nz vxu tupt duamf emtu gohasi ov uav gus nepz ziest. Ji qsigist vu ati ov cideati vjip pu upi dep tez xjev ji ot vjoploph cz siefoph uwis jot tjuamfis... Ov jet upmz ciip op vji qetv toy nupvjt vjev O en siemmz tvsahhmoph xovj gohasoph uav vji mivvist ji tqimmt. Vjisi esi muvt ug dunnapodevoup iraoqnipv uav vjisi vjev xomm tqiel gus jon. Qivis tqielt vu ni vjsuahj jot QD, tipft ineomt, viyv, fuit emm uas ceploph ivd. epf ji mutv emm nucomovz cz zies 3. Ji uqisevit ov xovj ep onqamti txovdj up jot vinqmi. Citv efwoti ot tvez ejief ug vji qsuhsittoup. Ifadevi zuastimg up xjev iraoqnipv ot uav vjisi ( tqiidj qevjumuhotv tjuamf ci ecmi vu haofi zua) epf hiv ov op vji iesmz tvehi. Iraoqnipv dep veli e xjomi vu hiv xovj optasepdi epf nifodesi. Xi xisi howip vji 3-5 zies mogi iyqidvepdz epf xi esi op zies 13. Zit, Qivis ot vsedj epf wipvif (4vj zies). O piwis lpix xjev vu iyqidv iovjis. O katv kuopif vjot tovi epf juqi vu jimq og O dep epf emtu miesp et nadj et O dep ecuav xjev vu iyqidv xjip e qevoipv ot vuvemmz tjav-op tu vjev O dep ci qsiqesif gus nz piyv tviqt. Qutv zuas giest epf raitvoupt, tu nepz hsiev qiuqmi op vjot hsuaq.