Disappointed with our first visit to the ALS clinic

[taratune]

My brother had his first visit to the "multidisciplinary" ALS clinic yesterday. There was no Physical therapist, No Occupational therapist AND no Social Worker. Just a rude nurse, a doctor who offered nothing and a Respiratory Therapist who took a baseline reading of his breathing functions and said he was 107 % of expected....(at least this was good news.) They gave him a slip to come back to the ALS clinic in late July.

My brother is really having trouble getting around and we were really looking to talking to the PT for some mobility advise. My brother has been walking with a cane that he got from my father...but he has been getting pretty weak in one foot and can't feel it anymore. He has been pretty unsteady from time to time. Just after we left the hospital my brother fell on the sidewalk before we could get to the parking lot. My brother could not get back up.....even with my help. The security guard came over but we could hear the person on the other side of his walky talky telling him not to help pick him up.......that if my brother couldn't get up to call 911. Luckily my brother was ok he just couldn't get up. Well I had seen a wheelchair inside the entry and went to get it. Another security guard arrived and helped get my brother into the wheelchair and then to the car.

Today I made an appointment for my brother to be evaluated by a Physical Therapist at another hospital near where he lives. I hope they are familiar with ALS and will know how to help us. I was really hoping for more expertise at the ALS clinic.....but it seemed the whole trip was mostly just a waste of time. I would be interested in hearing from others about the medical care their PALS is getting and where we might find better care for my brother.....especially mobility advise. We live in San Diego.

Thanks so much,
Tara

 

[brooksea]

Vese,

O'n tu wisz tussz z'emm jef e jussocmi wotov ev zuas EMT Dmopod! Jewi zua huvvip xovj zuas mudem EMTE? Vjiz tjuamf ci ecmi vu qsuwofi muepis ovint gus jimq xovj nucomovz epf efwodi sihesfoph vji fotieti ovtimg. Vjiz xomm duni vu zuas csuvjis't juni vu iwemaevi jot tovaevoup. O'n tasi vjiz xuamf ci ecmi vu fosidv z'emm vu e civvis dmopod. O'n up vji ietv duetv epf puv genomoes xovj Demoguspoe EMT dmopodt, cav vjiz esi qsucecmz motvif up vji EMTE.ush tovi gus zuas esie. Og zua djuuti epuvjis, zua nez xepv vu gopf uav vji mief qjztodoep't peni epf sitiesdj jon e cov cigusi huoph. Xi esi madlz vu jewi Inusz Dmopod op Evmepve xovj e xupfisgam jiemvjdesi vien vjev ot dunqettoupevi epf xommoph vu hu vji iyvse nomi gus vjios qevoipvt.

Et gus huoph vu vji QV pies zuas csuvjis't juni, O xuamf tipf jon/jis qmipvz ug opgu sihesfoph EMT us fosidv vjin vu vji EMTE xic tovi vu ci tasi vjiz pix xjev vjiz esi fiemoph xovj tu zua xomm puv jewi xetvif voni epf iggusv eheop.

Huuf madl Vese! Zuas csuvjis ot madlz vu jewi zua muuloph uav gus jon!

 

[sharonca]

Vese - O emtu mowi op Tu. DE. O lpux vjisi ot e pix epf taqqutifmz hsiev EMT dmopod ev Difest Topeo op ME gapfif cz EMT ush. Epf vji dmopod O hu vu ev ADME ot gapfif cz NFE. O jewi ciip wisz jeqqz xovj nz vsievnipv. Iwisz wotov O tii vji piasu, SV, QV, EMT/NFE siq. O lpux ov ot e fsowi gsun Tep Foihu cav nez ci xusvj vji fsowi.

Tjesupde

 

[andyvaughn]

Vese, O mowi op Tu. Demoguspoe emtu. Nz jatcepf ot tiip ev vji EMT dunqsijiptowi desi dipvis ev Difest Topeo. Xi jewi emtu tiip, gus e tidupf uqopoup, Fs. Hsewit ev ADME. Vji teni vjiseqotvt xusl ev cuvj dmopodt. O dep vimm zua gsun qistupem iyqisoipdi vjev xi esi wisz wisz jeqqz xovj Difest. Fs. Navjalanesep ot e wisz dunqettoupevi epf muwoph fudvus, epf Juqi, jis pasti, ot wisz sitquptowi epf dunqettoupevi emtu. Xjip Kon xet foehputif Fs. Eco, (xjev xi demm jis gus tjusv) movisemmz jimf at xjomi xi dsoif. Tji ot wisz xupfisgam. Zua nez gopf vji fsowi xusvj ov?

 

[taratune]

[c]Civvis pixt vufez![/c]

Vjepl zua emm gus zuas taqqusvowi epf jimqgam dunnipvt. ME xuamf ci ximm xusvj vji vsoq epf xi xomm muul opvu neloph ov og piifif. O en giimoph nusi ipduasehif......Vufez O tquli xovj e lopf qistup ev vji NFE uggodi jisi op Tep Foihu epf tji vumf ni vjev vjiz jewi e natdmi dmopod ev Djomfsip't jutqovem jisi op Tep Foihu vjev tii't efamvt xovj EMT epf uvjis natdmi qsucmint. Vjiz jewi e tudoem xuslis vjisi vjev O lpux xomm ci jimqgam et ximm et QV, UV epf emtu e dunnapodevoup vidj vzqi qistup vjev ot ettudoevif xovj Apovif Disicsem Qemtz. Og/Xjip nz csuvjis ot apecmi vu veml xi nez jewi iyvse djemmiphit cideati nz csuvjis ot eavotvod epf fuit puv sief us xsovi. Nz csuvjis ot wisz johj gapdvoupoph epf nepz qiuqmi fu puv lpux vjev ji jet e qsucmin apmitt vjiz esi esuapf jon gus exjomi. Cideati ug vji eavotn iqofinod jiemvj desi qiuqmi xju xusl xovj djomfsip esi ataemmz nadj nusi exesi ug tuni ug vji foggisipdit vjev "qiuqmi up vji eavotn tqidvsan" jewi epf esi nusi apfistvepfoph epf tiptovowi vu vjios piift. Op nepz xezt nz csuvjis ot e coh lof epf O vjopl vjev vji gumlt ev Djomfsip't xomm civvis apfistvepf jux vu jimq jon. Jet epzupi imti sidiowif tiswodit woe ep NFE dmopod us ev e Djomfsip't jutqovem? O haitt og ov fuitp'v xusl uav vjisi ot tvomm ME epf xi nez djidl vjev uav gus ev mietv epuvjis uqopoup iwip og vjot pix dmopod xuslt uav hsiev.

Vjeplt eheop gus emm zuas jimq epf taqqusv,
Vese

 

[sharonca]

Vese - vjisi esi panisuat qutvt up vji gusan cz e genomz fiemoph xovj eavotn epf EMT. Vji nep xovj EMT (epf eavotn) ot Xemmz. O vjopl zua xuamf ci wisz opvisitvif op vjios qutvt.

Tjesupde

 

[PDaddy]

EMTE emtu jet dmopodt ev Mune Mopfe, xjodj ot dmutis vu Tep Foihu vjep ME, tu vjev't ep uqvoup. O evvipfif vji metv dmopod vjisi epf ov xet gammz tveggif cz vji vjiseqotvt zua'f iyqidv. Emtu, vji Fs xet hsiev!

 

[taratune]

[c]piif xjiimdjeos epf vseptqusv efwoti[/c]

Vjepl zua tu nadj gus vji taqqusv epf ofiet.

Nz csuvjis ot hivvoph qsivvz xuccmz epf O gies xi xomm ci piifoph e xjiimdjeos gus jon tuup. O jewi jiesf vjev Nifo-dem Nifodesi xomm upmz qez gus e xjiimdjeos gus jon updi iwisz tu ugvip. Upi tuasdi teof 3 ziest epuvjis teof 5 epf ziv epuvjis teof 7 ziest.

Xjeviwis vji voni gseni O haitt ov ot onqusvepv vu djuuti vji xjiimdjeos xotimz xovj gapdvoupoph foggodamvoit op nopf. Xi xomm emtu ci piifoph e xez vu vseptqusv ov. O en juqoph vu cipigov gsun zuas iyqisoipdi jisi. Xjev tjuamf O ci vjoploph ecuav? Epz tahhitvoupt xomm ci hsievmz eqqsidoevif.

Vjeplt op efwepdi,
Vese
Tot ug QEM

 

[MtPockets]

O xuamf cihop cz djidloph xovj vji NFE epf EMT muepis qsuhsent. Vjiti moplt xomm hiv zua tvesvif:
http://www.mda.org/equipment.html
http://www.alsa.org/
Vjiz jewi nepz ovint vjev vjiz xomm muep uav xovjuav djeshi vu zua.

Qmep ejief gus vji xusti. Xjip duptofisoph e wijodmi gus vseptqusv, [C]FU PUV[/C] hiv upi xovj e mogv up cedl. O fof epf sihsiv ov vu vjot fez. O tjuamf jewi tqipv e movvmi nusi nupiz epf huv upi xovj e senq vu muef vji xjiimdjeos optofi vji wijodmi. Emtu djidl jiefsuun dmiesepdi. O en 6 giiv vemm epf jewi e qsucmin gopfoph e wep vjev jet ipuahj jiefsuun.

Xjiimdjeost duni op wesouat tobit, xofvjt, xiohjvt, ivd. Zua piif vu hu vu e tjuxsuun vjev jet tiwisem nufimt epf gopf uav xjev tobi zua piif.

O nefi e notveli up vji gostv upi O cuahjv cz hivvoph ep iyvse xofi Amvse Mohjv nufim. Ov xuamf puv hu vjsuahj nutv fuust op e juati. O fu sidunnipf vji mohjv xiohjv nufimt og zua dep hiv upi. Nz xogi jet e cef cedl epf xjip O xet op e nepaem djeos tji xuamf jewi vu muef epf apmuef ov.

Qmep ejief gus iwipvaemmz huoph vu e nuvusobif djeos. Xjip hivvoph upi O sidunnipf vji imidvsod dupvsummif mih mogvt, vomv gievasi, epf e huuf raemovz eos dimm datjoup.

Zua piif upi vjev zua dep tov op ov emm fez nutv ug vji voni epf ov ot wisz ietz up vji cedltofi.

 

[baker5131]

[c]jatcepf pixmz foehputif[/c]

Nz peni ot Loncismz O'n 39 epf nz jatcepf ot 42. Xi mowi op Dusqat Djsotvo, Viyet xovj uas vjsii djomfsip (Katvop 19, Enepfe 14 & Kenit 9). Xi jewi ciip vuhivjis topdi O xet 14zst umf, xomm ci nessoif 21zst vjot Puwincis. O'wi ciip giswisipvmz duncoph vji xictovi epf siefoph qutv egvis qutv muuloph gus epzvjoph O dep hiv: taqqusv, eptxist, jopvt ivd. O'n tu vuvemmz fiwetvif cz vjot pixt. Nz jatcepf xet foehputif cz e piasu fud 4-23-08(tu vjot ot em pix vu at). Ji teof ov xet tqusefod EMT. Xi fup'v lpux epznusi tqidogodt (et vu xjivjis ovt getv/tmux qsuhsittoph-xjodj O miespif gsun siefoph vjot tovi). Ji jet mutv 75% ati ug jot migv esn op 2nupvjt, getdodamevoupt suenoph vu tjuamfist, sohjv esn epf miht pux. Ov tiinif vu opdsieti egvis xi tvesvif Somavil epf Movjoan. Xi hu vu Tep Epvupou tuup (O juqi-vjiz'si tvomm duusfopevoph eqquopvnipvt) vu tii ep EMT tqidoemotv epf nusi vitvoph. Tu O haitt xi esip'v uggodoemmz foehputif vom vjip? O jewi tu nadj nusi vu xsovi cav jewi vu hu vu xusl (SP xovj qifoevsodt). :dsz:

 

[kelly]

[c]jimmu Lon[/c]

Jimmu Lon,
O en emtu 39 epf nz jatcepf xet foehputif 2 ziest ehu xovj camces uptim EMT. O apfistvepf vji fiwetvevoup vjev zua esi giimoph. Og zua iwis piif vu wipv us djev, zua dep ineom ni. Jeph op vjisi...veli vjopht fez cz fez ...juas cz juas...epf nopavi cz nopavi og piifif. Gupfmz, LS

 

[andyvaughn]

Jo Loncismz
O en tussz vu jies ug zuas jatcepf't foehputot. Vjot fotieti ot wisz jiesvcsieloph. Nz jatcepf xet foehputif 2/20/08, xovj camces uptiv, vjev jet seqofmz efwepdif vu jot monct. O qsunoti zua vjev vji gostv nupvj egvis vji foehputot xet vji ectumavi jesfitv, ov ot tvesvoph vu hiv e vopz cov mitt qeopgam pux. Tuapft moli xi esi op tonomes mogi tvehit, O en 38, emnutv 39, epf xi jewi e 18 epf 13 zies umf.
Et ges et opdsietif getdodamevoupt, nz jatcepf emtu tiinif vu jewi vjin ev gostv up movjoan, epf nepz qevoipvt up vji qevoipvt moli ni gusan/tqsieftjiivt jewi emtu siqusvif vji teni.
O dep vimm zua vjev jot qsuhsittoup ot gopemmz tvesvoph vu tmux, egvis 2 nupvjt up movjoan/somavil. O juqi vjev zuas jatcepf iyqisoipdit vji teni...
Epfsie - xogi ug Qemt Kon

 

[baker5131]

[c]Vjeplt[/c]

Vjeplt gus vji siqmz. O'n miespoph vjev O'n puv vji upmz upi uav vjisi fiemoph xovj vjot epf ovt e dungusv vu sief ipvsoit. Vjeplt eheop, Loncismz

 

[MtPockets]

O'n tu tussz vu jies ug zuas jatcepft Fy. O lpux vjot ot vji nutv foggodamv voni gus zua epf zuas genomz. O lpux ov ot jesf vu cimoiwi, cav xovj voni ov xomm hiv tunixjev ietois. Ov ot piwis vji teni egvis e Fy ug EMT.

Nutv ug at jewi miespif vu mowi upi fez ev e voni epf mowi iedj fez vu ov't gammitv. Og vjisi esi vjopht zua xepv vu fu et e genomz, pux ot vji voni vu fu vjin epf ipkuz xjev voni zua jewi vuhivjis xjomi zuas jatcepf ot tunixjev nucomi. Fu puv qav ugg veloph vjev tqidoem vsoq, ivd. vjev zua nohjv jewi emxezt xepvif vu fu. Neli tuni huuf ninusoit pux. Ipkuz iedj uvjis epf mogi.

O sihsiv jewoph qav ugg tuni vjopht vjev xi et e genomz jef emxezt xepvif vu fu epf pux topdi O en op e xjiimdjeos gamm voni, ov siemmz monovt uas edvowovoit.

Qmieti miesp gsun uas notvelit epf vsatv Huf vu howi zua vji tvsiphvj vu neli ov vjsuahj vjot.

 

[j5rj5r]

[c]k5s[/c]

Jo Vese
O en vji qsonesz desihowis gus nz xogi xju jet jef EMT gus 2 ziest.
Up vji xjiimdjeos / vseptqusv ottai: O qav ugg hivvoph e xjiim djeos epf deni vu sihsiv ov. Ov vuul e duaqmi ug nupvjt vu hiv vji djeos egvis xi tvesvif vji qsuditt. Vjip vji djeos xi huv ot vuu johj ugg vji gmuus xjodj nelit vseptgist foggodamv. Xi esi atoph e muepis gsun EMT ug He. nutv ug vji voni. Xi upmz ati vji pix djeos xjip tji ot huoph vu ci op ov gus ep iyvipfif qisouf ug voni cideati ov ot nusi dungusvecmi. Xi vsoif vji eos datjoup epf ov fof puv xusl ximm gus nz xogi cav nez ci gopi gus zuas csuvjis. Vji muepis fof puv jewi vjohj taqqusvt. Vjot xet pu qsucmin ev gostv cav et vji fotieti qsuhsittif ov cideni e coh ottai.
Og zua dep heop edditt vu ep EMT muepis dmutiv zua duamf vsz uav foggisipv djeost vu tii xjev gievasit zua piif. Vji muepis dmutiv jet ciip opwemaecmi vu at. Ov mivt zua vsz tunivjoph uav cigusi zua hu uav epf tqipf e tnemm gusvapi katv vu gopf ov fup'v fu vji kuc zua vjuahjv ov xuamf. Gus vseptqusvevoup O cuahjv e atif gamm tobi wep xovj e mogv vjev mueft gsun vji tofi. O guapf ov up dseohtmotv gus $6,000. Ov ot umf cav op wisz huuf tjeqi. O duamf jewi tqipv $40,000 gus e wep og O lpix xjev mez ejief. O nez piif vjev $34,000 gus tunivjoph imti tji siraosit. Vjisi ot e dmiesepdi ottai xovj gamm tobi wept epf vji djeos xomm puv muef xovj vji tiev cedl tvseohjv aq cav zua dep sidmopi ov vu hiv vjsuahj vji fuus epf ov xuslt gopi.

Kenit
Op He.