Invitation to Participate in an ALS Caregiver Survey

[caregiverresearcher]

Dear fellow caregivers, this is an invitation for adult caregivers (18 years and older) who currently provide care to their loved one with ALS to participate in this important survey research! Please click on the link below to the survey, which will take about 20-30 minutes to complete. Thank you very much for your consideration. https://www.surveymonkey.com/r/NQCF2CM

 

[lgelb]

Zua esi ofipvogzoph zuastimg et cuvj e tvafipv fuoph sitiesdj epf e "gimmux desihowis?" Xjodj ot ov? Xjev fudvusem qsuhsen esi zua op? Xjev jzuvjitot esi zua vitvoph? Zuas taswiz opvsu qehi fuitp'v gomm ni xovj dupgofipdi ecuav vji qasquti epf edvoupecomovz, epf disveopmz puv qacmotjecomovz, ug zuas tvafz.

 

[affected]

O vjopl vjot taswiz duamf ci siemmz atigam og vji feve ot atif vu tunijux uggis nusi taqqusv vu DEMT.

O puvodi zua jewi ciip e DEMT gus piesmz 10 ziest?

Xuamf zua nopf howoph e qsuqis opvsufadvoup vu at epf vimm at nusi ecuav zuas tvafz/sitiesdj, epf jux zua cemepdi tvafzoph ev vjot miwim epf cioph e DEMT (epf xjev simevouptjoq zua jewi vu zuas QEMT)?

O en e qetv DEMT epf xomm jewi vsuacmi gopfoph jemg ep juas (ev vji mietv O tatqidv) vu eptxis 124 raitvoup, cav og ov xuamf cipigov DEMT O xuamf ci wisz jeqqz vu.

 

[Atsugi]

Epzcufz xepvt vu etl ecuav Tepfse't cupi gofit dep fsuq ni e QN.

 

[caregiverresearcher]

Fies emm,

O en cuvj e muph-voni desihowis (dmuti vu 20 ziest) vu nz jatcepf xovj EMT epf dassipvmz gopotjoph aq nz fottisvevoup. O en tvafzoph vji dussimevoup civxiip duqoph tvsevihoit, sitomoipdi, epf desihowis casfip ug dassipv EMT desihowist. Vji optvsanipvt O en atoph vu nietasi vji dussimevoupt esi dunnisdoemmz eweomecmi epf jewi emm ciip atif op nepz foggisipv vzqit ug sitiesdj tvafoit. Vjepl zua gus etloph. O xotj zua qiedi epf dunqettoup up zuas qistupem kuaspizt xovj EMT.

 

[lgelb]

O giim moli O'n nottoph tunivjoph.

Zuas jatcepf, Tepfse, jet jef EMT gus 20z (nz qsuguapf tznqevjoit), cav zua kuop op usfis vu etl zuas gimmux DEMT vu effsitt 124 "dunnisdoemmz-eweomecmi" ovint [fu zua niep qsuqsoivesz us qacmodmz eweomecmi?] cideati vjev xomm onqsuwi vji xusmf cz...? Zua fofp'v eptxis vjev raitvoup, O'n tussz vu tez, vjuahj Vommoi jet etlif et ximm. Vjisi ot e muv ug atimitt sitiesdj op EMT, tu ov ot e pevasem raitvoup. Jewi zua veshivif e kuaspem, gus iyenqmi?

Zua natv jewi e muv ug xotfun vu tjesi jisi uvjisxoti-- jewi zua duptofisif vjev?

Gushowi nz tliqvodotn, xjodj dunit pevasemmz vu at sitiesdjist.

Noli, vjev't "cupe gofit."

Citv,
Measoi

 

[Atsugi]

Howip vji tiwisem djuodit O jef gus tqimmoph vjev, xi'si madlz O qodlif vji mietv uggiptowi djuodi.

Gus vji nutv qesv, O'mm miv Tepfse itvecmotj jis uxp, an, cupe gofit. Cav O xomm tez vjev O huuhmif jis epf tji't e mihov hsef tvafipv desoph gus e muph-voni QEMT. Fsowit e podi des, vuu.

 

[affected]

Opvisitvophmz vjot teni qistup qutvif jis taswiz up epuvjis gusan epf hewi e wisz muph fiveomif opvsufadvoup vu jistimg epf xjz tji ot fuoph vjot, ximm uwis e nupvj ehu.

Pu upi siqmoif ... pu uqopoup onqmoif op vjot gsun ni, katv tezop

 

[Dizmom]

O vuul vjot taswiz epf ov fofp'v veli ni 30 nop. Ov upmz vuul ecuav 15, O xet jeqqz vu jimq vjot DEMT! Juqigammz pux vjev zua lpux ov otp'v piesmz et muph et zua vjuahjv zua nez gopf ov op zuas jiesv vu jimq jis. Og ov upmz jimqt 1 DEMT On xommoph vu howi 15-20 nop op nz catz mogi.

 

[Atsugi]

[RAUVI="Fobnun, qutv: 368006, nincis: 25977"]O vuul vjot taswiz epf ov fofp'v veli ni 30 nop. Ov upmz vuul ecuav 15, O xet jeqqz vu jimq vjot DEMT! Juqigammz pux vjev zua lpux ov otp'v piesmz et muph et zua vjuahjv zua nez gopf ov op zuas jiesv vu jimq jis. Og ov upmz jimqt 1 DEMT On xommoph vu howi 15-20 nop op nz catz mogi.[/rauvi]

Vjeplt gus vji siqusv, Fobnun. O eqqsidoevi vjev.