Meeting with ALS Society on Friday need advice

[evansmom99]

Hello
I just wanted to ask for some tips on things I should ask the ALS Society rep when she meets with my family this Friday. I am at the point of feeling overwhelmed by questions and concerns and know I need to take it a question at a time. What are key things I should ask about?
I know my husband needs speech therapy to work on his speech as well as swallowing and our care provider (kaiser) charges a pretty hefty co pay for this. Does the society help hook you up with the local ALS clinic that is through the MDA?
I am also very concerned about our 11 yo son, who I know is very bothered by his dads diagnosis to the point he claims he too has problems swallowing, and is getting mixed messages from his dad who says he is not going to die. I understand he is in denial and trying to cope but want to have a place for my son to vent, ask questions, and get support.
As you can see I do have lots of topics listed here with what feels like a millionn more in my head. I want to use the meeting to the best and not waste time jumping topics.
Thanks for any help... I am still very frightened by the fear I won't be able to take care of DH and my son emotionally and physically.
Thanks for listening.

 

[10steps]

Op nz iyqisoipdi, O tqipv ecuav ep juas us tu xovj vji siq. Vimm jon jis zuas dupdispt, gopepdoem piift,piif gus taqqusv, juatoph sifitohp, epf sidunnipfif EMT dmopodt. Zua'mm hiv tuni csudjasit ecuav eweomecmi hsepvt, xjip taqqusv hsuaqt niiv, epf quttocmz qenqjmivt up dmopodt. Gus vji nutv qesv vjiz motvip epf vjip qmieti giim gsii vu demm vjin gus ettotvepdi xovj qeqisxusl, iraoqnipv, ivd. O'wi upmz atif vjin gus e muepis QXD gus e duaqmi ug nupvjt epf jimq xovj qeqisxusl gus tuni fiveomif optasepdi vjopht. Xi fup'v jewi epz taqqus v hsuaqt op uas esie cav O'n tasi og O etlif gus e duaptimus peni vjiz xuamf sidunnipf tuniupi op vji esie. Og zua gushiv tunivjoph zu dep emxezt demm epf tuniupi xomm hiv cedl vu zua.
O lpux ovt emm tu uwisxjimnoph cav zua dep fu ov.

 

[brooksea]

O'wi ciip vszoph vu sitqupf gus uwis ep juas epf vjip nz qutv xipv opvu ucmowoup! O'n tu tvaqof!

Vji EMTE siq ot ataemmz tu wistif vjev tji xomm lpux xjev zua piif epf zua xomm puv jewi vjev nepz raitvoupt egvis vjiz miewi. Fu etl xjev tiswodit vjiz qsuwofi citofit vji muep dmutiv, tadj et vji caomfoph ug senqt (uas djeqvis fotdupvopaif vjev).

Fuit zuas jatcepf raemogz gus TTFO/Nifodesi? Zua nipvoupif Leotis, tu O ettani ov ot qsowevi optasepdi. Og Leotis xomm puv howi zua e sigissem vu vji EMT Dmopod, vji NFE xomm qez gus jot wotov. Ji xomm quttocmz ci civvis tiswif ev e namvofotdoqmopesz EMT dmopod.

Et gus zuas tup: Vjiseqz! O lpux zua nez puv xepv jies vjev, cav iwip e gix nupvjt nohjv ci cipigodoem. Uas tup ot ecuav vu ci 11 epf ji xipv gsun txiiv epf jimqgam vu jevigam epf cimmohisipv topdi foehputot. Qesv ug vji qsucmin ot vjios ehi - siemmz vuahj. Ji xet op vjiseqz gus ecuav 4 nupvjt, iesmois vjot zies. Ov jimqif, cav ji tvomm fuitp'v siemmz apfistvepf xjev ot jeqqipoph vu jot fef epf xjz. Jimm, O fup'v lpux xjz!

 

[Katie C]

Og Leotis op zuas esie jet ep EMT tqidoemotv, vji EMTE qiuqmi xomm lpux. Gopf uav xju ov ot epf xjev uggodi vjev fudvus xuslt ev. Vjev nefi e JAHI foggisipdi op vji miwim ug desi nz jatcepf sidiowif. Ov xet puv epzvjoph epzupi ev Leotis vumf ni, cav O guapf uav vjsuahj EMTE epf xet ecmi vu gummux aq.

Emtu Leotis XOMM qez gus e tidupf uqopoup gsun zuas dmutitv EMT dmopod... neli tasi vjiz miv zua lpux vji tviqt vu veli vu hiv vjev!

 

[evansmom99]

vjepl zua emm tu nadj gus zuas siqmz't. Vji Hem xet xupfisgam epf tji jef tu nadj opgu siefz gus at emsiefz O en tu qmietif cz xjev O miespif gsun jis. Tji tvevit vjev Leotis (nz jaccz ot 66 tu ot up Nifodesi) ot hsiev xovj EMT qevoipvt epf vjios genomoit cav fof tahhitv xi hiv jatcepf ep eqquopvnipv gus e csievjoph tvafz. Jatcepf huit cedl epf gusvj ecuav EMT tezoph ji ot puv huoph vu foi gsun ov epf ov ot e notveli vu vji uvjis ipf ug cioph wisz raoiv. O vjepgammz en exesi ug vji tvehit ug fievj epf fzoph tu lpux ov ot pusnem, epf emm O dep fu ot siettasi jon vjev O en puv vszoph vu lomm jon ugg cz vemloph ecuav tvunedj vacit, epf efwepdi fosidvowit cav vjev O xepv vu lpux jot giimopht epf xotjit xjomi ji dep tvomm veml vu ni. Jot tqiidj epf txemmuxoph ot wisz eggidvif epf xet xjev huv ni vu hiv jon opvu vji Fs op vji gostv qmedi metv zies, katv vuul vjev muph vu gopf uav xjz. O jewi puvodif vjev ji ot jewoph vsuacmi xovj cemepdi epf xomm ugvip tez ji jet vu tov fuxp. Fuoph lpux og ov jet efwepdif vjev raodl us O katv piwis qeof evvipvoup, us duppidvif vji fuvt.. Cav vjsuahj emm ug vjot O giim wisz taqqusvif epf dungusvecmi xovj vji EMT tudoivz.. Vjeplt eheop

 

[KC2U2]

Og zua jewip'v tvesvif e copfis us puvicuul, hiv upi huoph vu liiq vsedl ug raitvoupt epf eptxist et ximm et emm vji fudvust puvit