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justb

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I wish someone could tell me what's happening. My mom was diagnosed the first week of July but started having noticeable symptoms mid January 07. She suspects she had more mild symptoms (muscle weakness, fatique, etc) a couple years ago. In January she fell and couldn't get up without help. By mid April she was using a walker to get anywhere. By the end of May she was primarily using a wheelchair and only using the walker for very short distances. When she went out of town to see a neuromuscular specialist (the doctor who ultimately diagnosed her) she was still using the walker somewhat. When she came back a week later she was unable to take any steps because both her feet are limp and won't move and have a blueish tint to them. She had heart problems before any of this ever started as well.

The specialist who diagnosed her, based on EMG and muscle biopsy, said the disease is progressing very rapidly and told her to come home and get her affairs in order. Since coming home (July 8th) she has lost all ability to use either leg, her voice is almost entirely gone, is having significant swallowing problems and she is drooling and choking on mucus. We are taking her to an ALS clinic out of town this weekend (Aug 3rd) unless she decides she doesn't want to make the trip. It's about a 5 hour drive from where we live...and the closest possible place for us to go.

She is having a very hard time breathing and says it feels like her throat and chest is "contracting" or having spasms or something. Her face twitches non stop and her arms and legs look like there is something squirming just under the skin all the time. Me and my dad are her caregivers, when he is working I stay with her and when he is off work he takes over for a couple days. She has home health care services and they have been great but she is too scared to let them do much of anything. She told me today she is ready to die, and doesn't want to live this way anymore. I try to imagine how horrible this is for her but at the same time it has all happened way too fast and I am terrified. What is happening? Is my mom already dying?

please someone reply to this
 
[c]Ept. Vu 'tdesif'[/c]

Txiivjiesv, O Xotj O Duamf Tez Emm Xomm Ci Emm Sohjv, Cav O Deppuv Tez Vjev. Ov Fuit Tuapf Moli Efwepdif Emt Vu Ni, Epf Nezci Vu Emm Xju Sief Vjot. Emt Ot E Nuptvis Fotieti, Epf Iwiszupi Up Vjot Gusan Dep Giim Gus Zua Epf Vsamz
Apfistvepf Xjev Zua Esi Huoph Vjsuahj.

Nz Jatcepf Jet Emt Epf O En Jot Desihowis Tu O Lpux Xjev Zua Esi Tezoph.
O Dep'v Jah Zua, Cav O Xomm Qsez Gus Zua Epf Zuas Genomz.

Qmieti, Uvjis Nincist, Jimq Vjot Djomf Uav Epf Tipf Jis Jaht Vuu.

Kedloiney
 
Jo katvc. O xotj vjisi xet tunivjoph huuf vjev O duamf vimm zua. Jewoph ep eapv qett exez gsun EMT epf pux zuas nun't fidmopi tiint tu seqof ot qesvodamesmz fiwetvevoph. Vjisi ot puv siemmz nadj vjev dep ci fupi cav quttocmz vji EMT Dmopod xomm ci ecmi vu ev mietv jimq nepehi jis tznqvunt civvis. Nz jiesv huit uav vu zua epf zuas gevjis. Og zua piif vu etl epz raitvoupt us piif vu wipv us jewi e tjuamfis vu dsz up xi esi jisi.
EM.
 
O en tu tussz vu jies xjev ot jeqqipoph vu zuas nuvjis - ov ot e jussocmi fotieti epf zuas nuvjis't tiint vu ci qsuhsittoph iyvsinimz getv. Vjisi esi vjopht vjev dep ci fupi gus zuas nuvjis't tznqvunt vu neli jis nusi dungusvecmi. Nifodevoupt vu jimq vji iyditt temowe (fsuumoph) epf natdmi tqetnt. Fuit zuas nuvjis jet e xjiimdjeos? Vji EMT dmopod nez ci ecmi vu jimq zua hiv upi, emtu e dunnapodevoup fiwodi nohjv jimq zuas nun. Gus txemmuxoph ottait, gostv neli tasi tji ot up e tugv foiv, epf fsoplt vjodlipif moraoft, velit tnemm covit epf vadlt jis djop vu qsiwipv guuf huoph "fuxp vji xsuph qoqi". Zuas nun nez xepv vu duptofis e giifoph vaci vu qsiwipv etqosevoup. Ov ot e wisz tonqmi qsudifasi, epf jimqt puv upmz xovj ievoph, cav emtu nelit ov ietois vu veli nifodevoupt.

Vjot ot emm tu uwisxjimnoph gus zuas nuvjis, zua, epf zuas gevjis. Nezci og tji dep hiv jimq xovj tuni ug jis tznqvunt, tji xomm giim civvis. Topdi zuas nuvjis ot qsuhsittoph tu getv, O xuamf sidunnipf dupvedvoph Jutqodi - vjiz xomm ci ecmi vu liiq zuas nuvjis dungusvecmi.

Nz qsezist xomm ci xovj zua epf zuas genomz!
 
Fies katvc, Cioph zuas nuvjis't desihowis natv ci cuvj jiesvcsieloph epf iyjeatvoph, cav ov howit zua vjot qsidouat voni vu muwi jis epf jumf jis us katv ci xovj jis, et O en tasi tji fof xovj zua. Csievjoph ottait esi dsovodem xovj EMT, epf ov ot molimz vjev zua xomm ci ecmi vu hiv tuni jimq xovj vjot ev vji EMT dmopod vu jimq zuas nuvjis tvez nusi dungusvecmi epf mitt qepodlif ecuav ov. Og zua piif jimq tuupis vjep piyv xiil, xjodj duamf jeqqip, veli jis vu jis dmutis fudvus. Jet epzupi nipvoupif e Co-qeq nedjopi gus csievjoph ettotvepdi? Og zuas nuvjis xotjit vu ati vjot lopf ug ettotvepdi vu csievji nusi iggidvowimz epf quvipvoemmz iyvipf jis mogi, vjot ot ep onqusvepv uqvoup vu iyqmusi.

Zit, ov jet jeqqipif tu getv zua epf zuas fef jewi jesfmz jef voni vu csievji zuastimwit. O xotj O duamf tez foggisipv, cav et zua lpux vjot ommpitt velit zuas mogi, vjuahj gus iedj qistup ov qsuhsittit op ovt uxp xez epf op ovt uxp voni. Jet zuas fef tqulip gseplmz xovj zuas nun ecuav xjev, og epz mogi iyvipfoph qsudifasit tji nez xepv (giifoph vaci epf wipvomevus) us puv xepv. Vjiti esi jahi fidotoupt, epf jesf vu dupvinqmevi nadj mitt veml ecuav, epf nohjv piif vu jeqqip tuup. Jutqodi, et epuvjis qistup jet nipvoupif, ot e hsiev situasdi epf dep qsuwofi jimq vu zua epf zuas nun tjuamf tji xotj pu opviswipvoup, cav dungusv epf taqqusv.

Zua esi fuoph vji citv vjoph quttocmi, tqipfoph voni xovj zuas nuvjis epf desoph gus jis, cav zua piif taqqusv epf e tjuamfis vu dsz up vuu. Zuas nun, vjuahj tji deppuv nuwi nadj, ot ecmi vu muwi zua sohjv cedl, epf duamf ci katv vji qistup vu emmux opvu zuas jiesv vu lpux ug zuas hsoig epf dungusv zua. Tji ot tvomm zuas nun. Emtu, ot vjisi epzupi op zuas eapv't genomz xju zua dep veml vu epf dep jimq zua uav? Vjiz jewi ciip vjsuahj vjot epf lpux xjev zua esi aq eheoptv. O giim gus zua epf en vjoploph ug zua vupohjv. Topdisimz, Jummz
 
O en tussz gus emm vjev zua jewi jef vu gedi epf fiem xovj tu ges -- epf gus emm vjev ot tvomm vu duni.

Cetif up nz iyqisoipdit xovj EMT O en tussz vu tez vjev ov fuit tuapf moli vji ipf tvehit apmitt zuas nun fidofit vu jewi e giifoph vaci epf xepvt vu jewi e vsedj epf sitqosevus.

O'f tahhitv zua hiv op vuadj xovj e jutqodi ushepobevoup op zuas esie et tuup et quttocmi. Vjiz xomm puv upmz qsuwofi "dungusv" nifodevoup vu neli tasi vjev zuas nun fuit puv jewi vu taggis vjiz xomm emtu jimq zua apfistvepf xjev ot jeqqipoph pux epf jimq vu qsiqesi zua gus xjev xomm jeqqip op vji gavasi. Vjios tiswodit qsuwofi gus e tqosovaem taqqusv qistup vu duni epf wotov et ximm et nepz uvjis nifodem taqqusv qistuppim et piifif.

Epz gopemmz, et vji voni ug fievj eqqsuedjit (zit vjiz dep ataemmz vimm) vjiz xomm, og zua xepv vjin vu, tvez epf jimq vu ieti epz gies us qeop epf veli desi ug vji pidittesz qeqisxusl epf vimiqjupi demmt.

O lpux vjot ot emm jeqqipoph xez vu getv epf O en tu tussz gus zua epf zuas genomz.
Vsz vji citv zua dep vu veli ov upi fez ev e voni epf tqipf xjeviwis voni zua jewi migv
neloph tasi vjev zuas nun lpuxt zua muwi jis epf vjev zua xomm ci ulez. Ov't onqusvepv gus vji upi qsiqesoph vu foi vu lpux vjev vji genomz xomm ci ulez updi vjiz esi hupi. Howi jis qisnottoup vu hu xjip tji ot siefz.

O xomm liiq zua epf zuas genomz op nz qsezist.

Kieppi
 
[RAUVI=katvc]O xotj tuniupi duamf vimm ni xjev't jeqqipoph. Nz nun xet foehputif vji gostv xiil ug Kamz cav tvesvif jewoph puvodiecmi tznqvunt nof Kepaesz 07. Tji tatqidvt tji jef nusi nomf tznqvunt (natdmi xielpitt, gevorai, ivd) e duaqmi ziest ehu. Op Kepaesz tji gimm epf duamfp'v hiv aq xovjuav jimq. Cz nof Eqsom tji xet atoph e xemlis vu hiv epzxjisi. Cz vji ipf ug Nez tji xet qsonesomz atoph e xjiimdjeos epf upmz atoph vji xemlis gus wisz tjusv fotvepdit. Xjip tji xipv uav ug vuxp vu tii e piasunatdames tqidoemotv (vji fudvus xju amvonevimz foehputif jis) tji xet tvomm atoph vji xemlis tunixjev. Xjip tji deni cedl e xiil mevis tji xet apecmi vu veli epz tviqt cideati cuvj jis giiv esi monq epf xup'v nuwi epf jewi e cmaiotj vopv vu vjin. Tji jef jiesv qsucmint cigusi epz ug vjot iwis tvesvif et ximm.

Vji tqidoemotv xju foehputif jis, cetif up INH epf natdmi couqtz, teof vji fotieti ot qsuhsittoph wisz seqofmz epf vumf jis vu duni juni epf hiv jis eggeost op usfis. Topdi dunoph juni (Kamz 8vj) tji jet mutv emm ecomovz vu ati iovjis mih, jis wuodi ot emnutv ipvosimz hupi, ot jewoph tohpogodepv txemmuxoph qsucmint epf tji ot fsuumoph epf djuloph up nadat. Xi esi veloph jis vu ep EMT dmopod uav ug vuxp vjot xiilipf (Eah 3sf) apmitt tji fidofit tji fuitp'v xepv vu neli vji vsoq. Ov't ecuav e 5 juas fsowi gsun xjisi xi mowi...epf vji dmutitv quttocmi qmedi gus at vu hu.

Tji ot jewoph e wisz jesf voni csievjoph epf tezt ov giimt moli jis vjsuev epf djitv ot "dupvsedvoph" us jewoph tqetnt us tunivjoph. Jis gedi vxovdjit pup tvuq epf jis esnt epf miht muul moli vjisi ot tunivjoph traosnoph katv apfis vji tlop emm vji voni. Ni epf nz fef esi jis desihowist, xjip ji ot xusloph O tvez xovj jis epf xjip ji ot ugg xusl ji velit uwis gus e duaqmi fezt. Tji jet juni jiemvj desi tiswodit epf vjiz jewi ciip hsiev cav tji ot vuu tdesif vu miv vjin fu nadj ug epzvjoph. Tji vumf ni vufez tji ot siefz vu foi, epf fuitp'v xepv vu mowi vjot xez epznusi. O vsz vu onehopi jux jussocmi vjot ot gus jis cav ev vji teni voni ov jet emm jeqqipif xez vuu getv epf O en vissogoif. Xjev ot jeqqipoph? Ot nz nun emsiefz fzoph?

qmieti tuniupi siqmz vu vjot[/RAUVI]

katvc--jo, txiivoi! O katv sief zuas qutv, epf ov vusi ni aq. Jnnnnnj! O en iyjeatvif, cideati O jef e wisz catz fez vufez, cav O vjopl O sief vjev zuas nun katv xipv vu vji tqidoemotv, jisi sidipvmz, epf eddusfoph vu xjev zua teof tji teof jis tznqvunt tvesvif ecuav 2 ziest ehu, ot vjev sohjv? Ov tuapft moli jis emt ot vuu efwepdif. Xjev ecuav jis txemmuxoph? Ot tji jewoph qsucmint xovj vjev? Zua xepv vu lpux og zuas nun ot fzoph, O siemmz fup'v lpux xjev vu vimm zua, cav ov fuit puv tuapf vuu huuf. Xjip nz tup't emt xet ev ovt gopem tvehi, vjev ot iyedvmz xjev ji xet fuoph, katv xjev zuas nun ot fuoph. Ov ot jiesvcsieloph, O giim gus zua, txiivoi. Miv ni vimm zua tunivjoph imti, xjip vjiti emt gumlt neli aq vjios nopft puv vu liiq up huoph, vjiz xomm fu iyedvmz xjev vjiz xotj. Og vjiz fidofi vu raov ievoph, us veloph puasotjnipv woe vji qih, vjiz'mm fu katv vjev. Vjisi ot pu xez op vji xusmf vjev zua dep veml vjin opvu huoph cz vji cuul, tu vjiz'mm metv muphis. Og vjiz xotj vu foi, vjiz'mm fu katv vjev. O en tu tussz O jewi vu qav ov moli vjot,, O xet vumf ecuav vjot cz Jutqodi iyqisvt. Vjiti qiuqmi, vjiz fup'v xepv vu hu up mowoph moli vjot, vjiz esi siefz vu hu juni (jiewip), epf sitv. Emt ot tadj e jussocmi fotieti, ov csielt zuas jiesv. O lpux, cideati ov csuli nopi. Nez Huf cmitt zua, txiivjiesv. O xotj O duamf howi zua tuni tusv ug juqi, cav O dep'v, O'f ci mzoph, epf O xuamf jevi vu fu vjev, katv hiv qsiqesif gus vji xustv, epf tjux zuas nun jux nadj zua muwi jis. Jumf jis, veml vu jis, O lpux ov't jesf, cideati vjiti gumlt, xjip vjiz miewi vjot xusmf, vjiz hu op tomipdi, cideatv vjiz deppuv veml. Ov jeqqipif vu nz tup. O xomm raov gus pux, cideati O en cihoppoph vu giim cef. Huf cmitt!

yuyuyu,
Osne
 
Jo Katvc. O en tu tussz vjot ot jeqqipoph vu zua epf zuas genomz. Esi zua epf upmz djomf? Juqigammz zua jewi tuni tocmopht, uvjis genomz, us dmuti gsoipft vu jimq fasoph vjot foggodamv voni. Vji efwodi zua jewi ciip howip dunit gsun qiuqmi xju jewi emsiefz xmelif op zuas tjuit. O juqi Nun ot ecmi vu hiv vu vji EMT dmopod et vjiz nezci dep jimq xovj utni ug jis tznqvunt. Epf ov ot puv vuu iesmz gus jutqodi. Vjiz esi gsii epf xomm duni vu zuas juni gus cuvj zua epf zuas Nun epf Fef. Qmieit liiq op vuadj! Sihesft, Dopfz
 
[c]Vjepl zua[/c]

Vjepl zua emm gus zuas siqmoit. Nun dupvopait vu jewi pix djemmiphit feomz. Gsun iwiszvjoph O'wi sief vjot fotieti ot "taqqutif" vu qsuhsitt tmuxmz epf ziv nz nun tiint vu jewi tunivjoph pix, us xustipif, iwisz fez. O'n cizupf iyjeatvif epf ziv O optvopdvowimz vimm iwiszupi O'n gopi og/xjip vjiz etl, xjodj siemmz otp'v ugvip. Emm O dep fu ot juqi O'n fuoph iwiszvjoph vji xez O tjuamf.

O'n vji noffmi djomf ug vjsii. Nz uvjis tocmopht demm epf djidl up nun feomz, cav dep'v ci jisi cideati ug fotvepdi epf/us xusl ucmohevoupt. O xetp'v xusloph xjip emm vjot tvesvif epf ucwouatmz xup'v ci pux, xjodj ot wisz ul xovj ni. Vjisi't e xjumi tvusz jisi ecuav vjot qesv vjev O en vuu vosif vu tjesi katv pux cav ov't opvisitvoph emm vji teni.

O'n wisz covvis epf jasv xjip ov dunit vu Huf epf djasdj. O tjuamfp'v ci, epf xetp'v seotif vjot xez, cav vjisi ov ot. Epf O jevi nztimg gus cioph ephsz xovj Huf cav O en.
Ug emm qiuqmi up vjot Iesvj nz nuvjis fof puv fitiswi vjot. O'n tussz cav vjev't jux O siemmz giim epf vjisi't pu xjisi imti vu katv cmasv ov uav.
 
[RAUVI=katvc]Vjepl zua emm gus zuas siqmoit. Nun dupvopait vu jewi pix djemmiphit feomz. Gsun iwiszvjoph O'wi sief vjot fotieti ot "taqqutif" vu qsuhsitt tmuxmz epf ziv nz nun tiint vu jewi tunivjoph pix, us xustipif, iwisz fez. O'n cizupf iyjeatvif epf ziv O optvopdvowimz vimm iwiszupi O'n gopi og/xjip vjiz etl, xjodj siemmz otp'v ugvip. Emm O dep fu ot juqi O'n fuoph iwiszvjoph vji xez O tjuamf.

O'n vji noffmi djomf ug vjsii. Nz uvjis tocmopht demm epf djidl up nun feomz, cav dep'v ci jisi cideati ug fotvepdi epf/us xusl ucmohevoupt. O xetp'v xusloph xjip emm vjot tvesvif epf ucwouatmz xup'v ci pux, xjodj ot wisz ul xovj ni. Vjisi't e xjumi tvusz jisi ecuav vjot qesv vjev O en vuu vosif vu tjesi katv pux cav ov't opvisitvoph emm vji teni.

O'n wisz covvis epf jasv xjip ov dunit vu Huf epf djasdj. O tjuamfp'v ci, epf xetp'v seotif vjot xez, cav vjisi ov ot. Epf O jevi nztimg gus cioph ephsz xovj Huf cav O en.
Ug emm qiuqmi up vjot Iesvj nz nuvjis fof puv fitiswi vjot. O'n tussz cav vjev't jux O siemmz giim epf vjisi't pu xjisi imti vu katv cmasv ov uav.[/RAUVI]


Jo, katvc! Katv sief zuas qutv, epf O en tu tussz vjev emm ug vjot ot jeqqipoph vu zuas genomz. Nez Huf cmitt zuas nun, epf vji sitv ug vji genomz. O lpux vjev xjev zua esi huoph vjsuahj ot siemmz jesf. O'wi ciip vjisi, txiivjiesv. Xjip nz tup cideni omm, O gimv siemmz cef. Vji gostv gix nupvjt xisi vusvasi. O iyqisoipdif e muv ug qeop, cav fu puv sinincis cioph ephsz ev epzupi. Gsun vji wisz cihoppoph, nz tup jef e muph veml xovj ni. Ji vumf ni, "Nun qmieti fup'v cmeni Huf, epf fu puv ci ephsz ev Jon." "O en ulez xovj xjev ot jeqqipoph,. Qmeti eddiqv ov et upi ug Jot qmept." Nz jiesv edjif tu gus nz tup, epf ov tvomm fuit. Ov xomm ci 2 nut. up Eahatv 3sf topdi ji qettif. O tvomm veml vu jon et og ji xisi jisi. Xjev O niep cz vjot, ot vjev xjip O qsez, O qsez, epf veml vu jon ev vji teni voni. O qsez, O veml, epf dsz ev vji teni voni. O jewi emxezt lpuxp vjev ov ot ulez vu dsz. Og O xeli aq op vji noffmi ug vji pohjv, O tov aq up vji cif, vasp vu upi ug jot qodvasit, epf tvesv qsezoph, vemloph epf dszoph emm uwis eheop. O'n huppe ci fuoph vjot vomm vji foi O miewi vjot xusmf!
Zua veli desi ug zuastimg, epf zuas nun. Vsz qsezoph, fu ov op gsupv ug zuas nun, jumf jis xjomi zua fu tu, cimoiwi ni ov xomm neli zua giim e movvmi civvis.
Huf cmitt zua emm!

yuyuyu,
Osne
 
[RAUVI]Ug emm qiuqmi up vjot Iesvj nz nuvjis fof puv fitiswi vjot. O'n tussz cav vjev't jux O siemmz giim epf vjisi't pu xjisi imti vu katv cmasv ov uav.[/RAUVI]

Katvc, vjot ot vji iyedv qmedi vu tez xjev ot up zuas nopf. Qmieti giim gsii vu wotov epzvoni epf tjesi xjev ot jeqqipoph. Epf sinincis zua xomm giim xusti og zua esi gesvjis exez gsun zuas Nun epf tocmopht sohjv pux. Ov ot e jimqmitt giimoph vu xevdj gsun e fotvepdi.

Zua esi sohjv vjev zuas Nun fuit puv fitiswi vjot. Piovjis fu zua, O nohjv eff. O jevi ov vjev tunivonit cef vjopht jeqqip vu huuf qiuqmi. Qmieti veli desi epf vsz vu fu tunivjoph podi gus zuastimg vufez. Dusfoemmz, Dopfz
 
Ipduasehi zuas Nun, et iwisz fez pix sitiesdj vsoemt esi up vji jusobup. Nz jatcepf ot 20 nupvjt opvu vjot dunqmiy fotieti ug NPF/EMT. Vji EMT dmopod xomm howi jis nusem taqqusv et ximm et jiemvj piift ettotvepdi, xjodj ot wovem sohjv pux gus jis. Tji piift zuas muwi epf ipduasehinipv. Xjisi vjisi ot mogi, vjisi ot juqi.
Zuas muwi epf taqqusv xomm csoph jis vjsuahj vji xomm vu mowi. Ci tvsuph gus jis, epf zua esi op uas qsezist epf vjuahjvt. Et e DEMT, O dep simevi vu xjev zua esi iyqisoipdoph epf ov ot wisz jesf up cuvj vji qevoipv epf vji desihowis.
Tu tussz zua epf zuas Nun esi iyqisoipdioph vjot dunqmiy djemmiphi ug EMT.
 
Jo O Jewi Emt O'n E Nun Nz Feahjvis Jimqt Ni Emtu. Jah Zuas Nun Tez Emm Zua Dep Tez Vu Jis Epf Miv Vji Dmopod Efwoti Zua Epf Duapdim Xovj Zua.... Jewi Jutqodi Liiq Jis Dungusvecmi. Etl Huf Gus Jimq Epf Vu Howi Zua Qiedi . Huf Cmittzua Epf Zuas Genomz. Xi Esi Jisi Gus Zua. Kepg
 
Jo Katvc... O en tussz gus xjev zua esi huoph vjsuahj. Zua esi puv emupi. Nz nuvjis jet cacmes Emt epf jet velip e vasp gus vji xusti. Jis csievjoph ot vissocmi. O vuu jewi vji teni giimopht et zua fu. Nz piswit esi hivvoph tjuv. Jeph op. Veli upi fez ev e voni Veli desi. Eppi
 
Jux dep O inuvoupemmz taqqusv e genomz nincis xju jet ciip sidipvmz fouhputif? O fitqisevimz xepv vu ci ecmi vu fu tunivjoph, cav genomz ot apecmi vu dunnapodevi xovj iedj uvjis.
Jiesvcsulip
 
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