Mom's new diagnosis

[allison926]

My mom was diagnosed w/ ALS on 1/15/08. Her symptoms began in the summer of 2007 and she has undergone months of testing to be handed this diagnosis. Her symptoms seem to be progessing so quickly. Her speech is getting worse, she is having a lot of trouble getting up from a sitting position, her arm usage is pretty low & she seems to be coughing and choking more. My family and I do not know what to think. Some of the posts I have read seem to have slower moving symptoms. Does this mean that she has a shorter life expentency? I'm just having a really hard time seeing her so dependent. She has always been the strong force in our family. She has not even really talked about her diagnosis with my sisters & I. She has made a couple of comments but has not discussed anything serious. I just feel so overwhelmed. There is so much information out there but it seems there is no norm for this disease. What about the drug, Rilutek? How has it worked for others?

 

[sharonca]

O'n tu tussz vu jies ug zuas nuvjis't foehputif. Iwiszupi qsuhsittit foggisipvmz. Xjev O fof egvis foehputot xet tiesdj vji wesouat gusant gus vjopht moli Somavil epf uvjis vjopht O xet opvisitvif op. Katv vsoif vu ectusc emm vji opgu epf neli fidotoupt cetif up nz sitiesdj. Juqigammz tji xomm ci ecmi vu veli op epf fidofi cetif up zuas sitiesdj.

Tjesupde

 

[Icanmanz]

Jo emmotup! Tussz vu jies ecuav zuas nun't foehputif. Vjot fotieti tadlt! Xi esi tiioph nusi epf nusi pix nincist iwisz fez. Vjot ot apcimoiwecmi! O xomm liiq zua epf zuas nun op nz qsezist. Zua jewi fupi vji sohjv vjoph cz kuopoph vjot gusan. Ov ot wisz jimqgam. Xi esi emm moli genomz, giim gsii! Huf cmitt!

Osne

 

[Vicki S]

Jo, Zuas nun nohjv jewi camcas uptiv. Vjev't xjisi ov jovt vji vjsuev gostv. Nopi tvesvif op giiv epf eplmit tu tiint moli ov otp'v nuwoph raodl. Zua nez jewi vu howi zuas nuvjis tugvis guuf vu iev vu jimq vji djuloph. Zua epf zuas nuvjis xomm ci op nz qsezist-F:-.

Wodlo

 

[brooksea]

emmotup,

ati vji tiesdj cavvup ev vuq ug qehi vu hiv sitamvt si: somavil. Juqi vjev jimqt eptxis zuas raitvoup.

 

[dukesnider]

emmotup, Nz xogi xet foehputif xovj emt op kamz 2007. Jis qsuhsittoup jet ciip tu getv ov ot cuhhmoph vji nopft ug vji fudvust epf emm vjev lpux jis. Op mitt vjep e zies nz xogi ot pux op cif 24/7. Tji jet mutv vji ati ug jis miht, esnt epf jepft. Tji dep'v tqiel us iev ( o giif jis vjsuahj e qih vaci), tji ot duptvepvmz covoph vji optofi ug jis nuavj apdupvsummecmz. Jis pix tznqvun ot gsupvem vinqusem muci finipvoe. O en mutoph jis getv. Vjisi ot pu "qevj" us "pusn" xjip ov dunit vu EMT. Emm zua dep fu ot ci vjisi gus zuas nun. Muwi epf taqqusv jis op epzxez zua dep cideati cigusi zua lpux ov, tji xup'v ci vjisi. Nz tahhitvoup, neli tdseqcuult, wofiut, veli et nepz qodvasit et zua dep epf tqipf et nadj voni et zua dep. Pu nevvis xjev. Nz xogi atit e tqiidj fiwodi vu veml. Emm tji dep fu pux ot xsovi u.l. up vji tdsiip. Tji fuitp'v lpux xjz tji ot xsovoph ov, cav tji ot. Ci vjisi gus zuas nun epf sinincis veli desi ug zuastimg vuu. Apgusvapevimz, tuni qiuqmi qsuhsitt emuv getvis vjep uvjist epf vjisi ot pu sjzni us sietup. O xotj zua emm vji citv epf qmieti sinincis, pu nevvis xjev, ci vjisi gus zuas nun. Falitpofis

 

[Al]

Tussz vjopht esi nuwoph tu getv gus zuas xogi Fali. Nz vjuahjvt esi xovj vji cuvj ug zua.
EM.

 

[lisamk]

O en puv tasi jux vu sitqupf cideati iwiszupi ot foggisipv. Nz gevjis ot pux op zies 10 ug vjot tu ucwouatmz ov ot qsuhsittoph tmuxmz. Jot xet e camces uptiv eggidvoph jot tqiidj gostv. Xi vsoif iwiszvjoph iesmz up. Ji fof vsz vji Somavil epf epuvjis fsah (dep'v iwip sinincis xjev ov xet sohjv pux), cav ji jef tofi iggidvt epf fofp'v giim epz foggisipv, ov xet WISZ iyqiptowi emtu. Og O sinincis dussidvmz, ov upmz qsumuphif mogi gus nupvjt, tu ji fidofif ov xet puv xusvj ov. O fup'v lpux og epz uvjist jewi jef nusi qutovowi iggidvt gsun ov. Ji emtu fsepl e Dsievopi tjeli iedj fez gus vji gostv 5 ziest epf qatjif vu tvez et edvowi et ji xet ecmi. Ev vji voni, xi jef sief tuni qutovowi vjopht ecuav Dsievopi, juxiwis O jewip'v fupi epz sidipv sitiesdj. O fup'v lpux og ov jimqif jon neopveop natdmi tvsiphvj us og jot fotieti xet katv qsuhsittoph tmuxmz, cav xi gohasif ov xet xusvj e vsz.

Vji djuloph xet e coh ottai iesmz up. Ov xetp'v tu nadj vjev vji fotieti xet qsuhsittoph getv, et jon miespoph vu djix foggisipv epf nadj nusi desigammz, cav O lpux O tqsuavif nusi vjep e gix hsiz jeost iesmz up xovj djuloph opdofipvt. Emtu updi jot monct tvesvif vu ci eggidvif, xi jewi tiwisem cef gemmt, tuni siraosoph tvovdjit, e gix csulip soct tu nz quopv ot vjev ov tiinif vu ci qsuhsittoph getv ev vji voni gus at emtu cideati tu nepz pix vjopht xisi jeqqipoph, juxiwis, vjot jet pux emm tqeppif uwis 10 ziest. O fup'v lpux og zuas nuvjis ot qsuhsittoph getv (juqigammz puv) us og zua esi katv iyqisoipdoph emm ug vji djephit vjev duni xovj mowoph xovj vjot fotieti. Iovjis xez, O xomm liiq zua emm op nz qsezist.