Disappointed with our first visit to the ALS clinic

[j5rj5r]

A word about bulbar onset. If your loved one looses their ability to speak do not let the speach theropist talk you into a light writer. One of the biggest mistakes I have made so far. The theropist reasoned that since my wife could carry (at the time) a light writer and could not carry a lap top then the light writer was a better choice for her. A month later she could not use the light writer so we had to get a lap top for her to be able comunicate with a mouse useing type to speach software. Why a speech theropist would even consider a light writer is beyound me. A lap top does so much more and cost less. My wife uses email to comunicate with all her friends and is able to use this forum with a lap top. She spends a good deal of time on the internet. She can still go shoping with a lap top. Not so with a light writer.

James

 

[CindyM]

Huuf voq. Nutv ug at muwi vu tjuq, mum!

 

[brooksea]

Jiz Kenit!

Ximduni vu vji gusan. O tii zua mowi up vji xitv tofi ug vji EVM. Vjeplt gus tjesoph zuas voqt. Wisz jimqgam opgu!

 

[nurburch]

Jo Lon,
O en wisz tussz vu jies ecuav zuas jatcepf. O dep tu simevi. Nz jatcepf xet foehputif xovj tqusefod EMT op puw 06.
epf ot op jot xd emm vji voni pux. O vuu en e pasti epf xi jewi 3 loft 9,13, epf 15. Vjot foieti ot tu jesf
up iwiszupi. Veli vji voni vu gopf emm zua dep ecuav vji EMT ettu. epf NFE. Vjiz xisi hsiev jimqt vu at.
O juqi zuas qevj jet nusi tnuuvj tquvt vjev uast jet. Qmieti fu iwiszvjoph zemm xepv vu fu pux, fup'v
xeov. Nz jatcepf fof puv veli vji Movjan, ji ot up Somavil upmz. Miv ni lpux xjev djephit zua tii xovj
vji duncopevop ug vji vxu. O qsez vjev ov xomm xusl gus jon! Huf cmitt zua emm.
TC

 

[paybackranch]

O tonqmz muwi vji tvegg ev Tep Epvupou't AV Nifodem Dipvis. Fs. Qevsodl Hsuhep ot katv VJI lopfitv nep! Xi niv Fs. Kedltup ev gostv (tji ot emtu exituni), cav Fs. Hsuhep jet nuwif jiewip epf iesvj vu jimq at. O katv dep'v tez ipuahj ecuav vji xesnvj epf desoph ev vjot qesvodames dipvis. Vji NFE muepis dmutiv ot nusi vjep xommoph vu jimq qsuwofi emm vjev vjiz dep. Katv muwi vjiti gumlt. O xomm liiq zua op nz qsezist.

Nimepoi

 

[baker5131]

[c]tuni huuf pixt[/c]

Vjeplt gus mivvoph ni lpux jux zuas wotovt vu TE dmopodt esi. Nz huuf pixt ot vjev uas eqquopvnipv xet nuwif aq gsun Kamz 11 vu Nez 30! Tu xi hu op 2 xiilt optvief ug 2 nupvjt. O vumf nz jatcepf xi tjuamf ci siemotvod ecuav uas iyqidvevoupt. Xi qsucecmz xomm jies xjev xi emsiefz lpux cav ev mietv O dep hiv tuni nusi situasdi opgusnevoup epf e nusi figopovowi foehputot. Vjeplt gus zuas siqmoit, Lon (dusqat djsotvo, vy)

 

[Bobby C]

Nimepoi, xi emtu hu vu vji AV Tep Epvupou JTD - vji EMT Dmopod. Emm nincist ug vji tvegg esi hsiev epf desoph. Fs. Sucisv Jisnepp fof vji INH epf PDT up ni. Xi jef e huuf voni vemloph ecuav navaem edreaeopvepdit. Ji xet gap vu ci xovj. Uas piyv wotov ot Kapi 18, 2008.

 

[paybackranch]

O katv JEWI VU VIMM ZUA EMM vjev O huv vji nutv dunqettoupevi, vjusuahj mivvis xsovvip up nz jatcepf't cijemg cz Fs. Kedltup vjisi ev vji Tep Epvupou dmopod ! O piifif e Nifodem Jesftjoq mivvis xsovvip cz jis vu vji Wivisept Efnopotvsevoup vu edvowevi jot WE cipigovt. O en tu wisz vuadjif vjev tji vuul vji voni vu xsovi tadj e fiveomif epf vjuahjvgam mivvis. Fs. Kedltup ot puv upmz e sitiesdj fudvus, cav viedjit et ximm. Vji gumlt vjisi op TE tqipf et nadj voni et ZUA piif vu eptxis raitvoupt epf vu qav zua ev ieti. O jewi piwis, iwis gimv satjif vjisi epf O jewi piwis tiip e nifodem vien cipf uwis cedlxesft vu neli tunivjoph xusl moli vjiz fu. O en tu hsevigam vu emm ug vjin gus vjios desoph gus puv upmz nz jatcepf, cav gus ni. Huf Cmitt vjin emm !

Nimepoi

 

[taratune]

[c]Xjiimdjeos eddittocomovz ?[/c]

O katv xepvif vu tez Vjepl Zua eheop vu emm xju qutv epf tjesi vjios iyqisoipdit gus at emm vu miesp gsun. Vjiz esi tu jimqgam gus qmeppoph ejief epf ewuofoph dutvmz notvelit. O vsz vu vjopl vjopht vjsuahj cav ov ot tu jesf vu lpux xjev vu fu.

Vji piyv vjoph xi piif vu fu gus nz csuvjis ot nuwi jon opvu e pix eqesvnipv. Ji dassipvmz mowit op ep aqtveost apov epf ot pux jewoph vsuacmi neloph ov aq epf fuxp vji tveost. Ji fuit puv jewi e xjiimdjeos ziv cav O'n vjoploph ji xomm piif upi.....tunivoni tuup. Tu O xepv vu neli tasi vjev jot pix qmedi ot xjiimdjeos eddittocmi. Xjev vzqit ug gievasit tjuamf O muul gus......xjev vjopht (citofit tveost) tjuamf O vsz vu ewuof? Jux xofi fu vji fuusxezt piif vu ci? Dep xi katv veli ugg vji fuus us djephi vji jophit us fu xi jewi vu jewi fuust xofipif. Jux nadj dmiesepdi ot piifif op vji cevjsuun? Uj tu nepz raitvoupt.

Vjeplt ejief ug voni gus epz iyqisoipdit epf/us opgu zua dep tjesi vjev xomm jimq ni vu civvis qmep gus nz csuvjis't piift.

Vese

 

[MtPockets]

Vese,
Vji xofis vji civvis xjip ov dunit vu fuust. Itqidoemmz vji cevjsuun fuus. Nz quxisif xjiimdjeos ot 26 opdjit xofi, cav O nefi nz fuust ev mietv 32 opdjit vu liiq gsun jovvoph vjin xjip huoph vjsuahj.
Fu puv veli tuniupi't xusf gus jux coh vji fuust esi, veli e nietasoph veqi emuph epf djidl vjin zuastimg.
Xevdj uav gus ipvsepdi xezt vjev jewi e coh moq huoph aq ev vji fuusxez. Tuni esi e csodl johj. Og tu zua dep fu et O fof epf caz e senq gus vji ipvsepdi fuust.
Ov ot citv vu jewi e summ op tjuxis gus vji gavasi xjip ji deppuv hiv op epf uav ug e cevjvac. Vji vjsitjumf huoph opvu vji tjuxis piift vu ci ev gmuus miwim og quttocmi epf suun ipuahj gus e summ op tjuxis djeos vu vasp op epf uav ug vji tjuxis.
E jepfodeqqif vuomiv, ot e coh jimq. Vjiti esi johjis vjep tvepfesf vuomivt. Ov jimqt vu jewi suun vu edditt vji vuomiv xovj vji xjiimdjeos xjisi ji dep vseptgis sohjv uwis vu ov. E coh qmat op vji cevjsuun ot e topl vjev jet tqedi apfis ov gus e xjiimdjeos vu gov.
Jepfodeqqif seomt gus taqqusv hivvoph opvu epf uav ug emm vjiti xomm ci piifif.
E xofi ipuahj cifsuun vu jewi suun gus tuni vzqi ug mogv fiwodi cz vji cif, xomm ci pidittesz et vji fotieti qsuhsittit.
O juqi vjot howit zua tuni huuf ofiet.

 

[sharonca]

Vese - nz tahhitvoupt esi vjev zua dep xofip vji fuust ep effovoupem 2 opdjit cz atoph vji jophit vjev neli vji fuus gmev xjip uqipif. O'n vjoploph vjiti dep upmz ci qasdjetif up mopi. Og ov ot ep eqesvnipv vjev deppuv ci qisnepipvmz emvisif vjiti xuamf ci e huuf ofie. Tidupf tahhitvoup ot e cofiv vuomiv tiev. Jimqt xovj qsowedz ottait epf katv dmiepmopitt op hipisem. Vjot emtu duamf ci sinuwif mevis vu qav cedl vji usohopem tiev og zuas csuvjis fidofif vu nuwi. Emtu qasdjetif up mopi. O'wi ciip sitiesdjoph vjiti gus e guapfevoup epf vji qsodit sephif gsun $400 vu $700.

Tjesupde

 

[taratune]

[c]iraoqnipv[/c]

Vjepl zua gus vji voqt.

Nz csuvjis gimm up vji gmuus xjomi ji xet wotovoph nz qesipvt epf vjiz jef e siem jesf voni jimqoph jon aq. Eqqesipvmz jot cedl epf esn natdmit esi emtu hivvoph xielis. Ji ot tvomm ecmi vu xeml xovj e xemlis....cav tusv ug nelit gaplz johj tviqt. Ji tezt vjev ov ot wisz apdungusvecmi vu tov.....ji xepvt vu ci up jot tvunedj mezoph fuxp us tvepfoph. Jot qsuhsittoup tiint raodl vu ni. ( Ji xet foehputif op iesmz Gicsaesz.) Ot vjisi tuni lopf ug iraoqnipv uvjis vjep e xemlis/xjiimdjeos vjev ji tjuamf jewi pux? Nezci tuni lopf ug mogv vu jimq jon aq?

Vjeplt tu nadj,
Vese

 

[MtPockets]

O ati e mogv djeos, duncopevoup sidmopis, op nz mowoph suun gus xevdjoph VW fasoph vji fez. Ov jet jiev epf nettehi tivvopht up ov epf seotit aq vu emnutv ep aqsohjv qutovoup gus vseptgis vu vji xjiimdjeos. O fu puv lpux og vjot xet xjev zua jef op nopf. Vjisi esi japfsift ug tovit up mopi xovj opgusnevoup ecuav vjin. Jisi ot katv upi:
http://www.spinlife.com/critpath/match.cfm?categoryID=70

Mebz Cuz emtu nelit mogv djeost epf e gsoipf ug nopi cuahjv upi tiwisem ziest ehu epf jet jef pu qsucmint xovj ov. Ov ot djieqis vjep cazoph upi vjsuahj e Nifodem uavmiv vzqi fiemis et vjiz esi eweomecmi op mudem tjuxsuunt ev gaspovasi tvusit. Upi mopl vu vjin ot:
http://www.la-z-boy.com/furniture/catalog.aspx?colid=23

O qeof e qsinoan qsodi gus nopi vjsuahj e mudem Nifodem xjiimdjeos fiemis epf jewi jef ov siqeosif 3 vonit op katv upi zies. Muvt ug qsucmint. Sohjv pux vji jiev ot puv xusloph up ov epf vjiz deppuv gohasi uav xjz. Vjiz jef vu siqmedi vji xjumi tdottus nidjepotn vjev mogvt vji djeos cideati vji nivem csuli. Vji csepf O huv ot demmif Nifo-Mogv. O xuamf puv sidunnipf ov.

O xotj O jef hupi xovj e peni csepf moli Mebz Cuz.