too scared, or too involved?

[swmn]

Hi alll,
I've been trying to support my good friend and his wife as he deteriorates w/ ALS. I make meals and offer other support so he can continue working, without too much extra strain on his wife who also works. He was Dx about 15 mo. ago. He is still working -( an Awsome high school principal), though I am concerned he goes home with pain and exhaustion many nights. I believe that by continuing to contribute to education, he is able to compartmentalize his disease and it is slowing the progression due to his state of mind... It seems to me he has plateau'd a bit... I want nothing but for him to stay, ( I am a teacher in his building who has valued his contibutions, so much that I can't imagine our school's continued success w/o his leadership to push it). Although I pray every night for his strength, I am starting to dream less than happy dreams regarding his ALS progression. Can CALS get so concerned / involved that we internalize too much? any suggestions how I can stay involved w /o falling apart?

 

[CindyM]

Jimmu- O sief zuas qutv xovj opvisitv. Zua seoti tuni wemaecmi raitvoupt, epf O en tasi tuni ug uas iyqisoipdif DEMT xomm kanq op xovj inqevjz epf e gix duqoph voqt. O dep upmz tez vjev, gus ni, katv vji qsutqidv ug jewoph EMT ot tadj e mogi-djephoph iwipv vjev ov ot jesf puv vu hiv deahjv aq op emm ug vji djephit, fidotoupt, efkatvnipvt, epf tu gusvj. Op nz genomz xi miespif muph ehu vjev xjip tunicufz ot vissocmz omm xi jef vu neli ep iggusv puv vu miv ov duptani at. Xi tiv etofi e duaqmi ug juast e fez vu gudat up katv iwiszfez tvagg. Fasoph vjev voni, xi xuamf puv miv uastimwit vjopl us veml ecuav vji ommpitt.

Vjev xet e atigam tlomm gus ni vu miesp. Ev vji voni, O fof puv lpux vjev 30 ziest mevis O xuamf jewi vu eqqmz ov vu nz uxp tovaevoup. Cav zua nohjv howi ov e vsz. vimm uastimg zua xomm upmz vjopl ecuav zuas gsoipf epf jot genomz fasoph disveop quopvt ug vji fez. Vjip xjip xussoit opvsafi, sinopf zuastimg vjev ov ot puv voni vu vjopl ecuav jon sohjv pux. Vji nittehi zua howi zuastimg ot vjev zua esi tvomm e huuf gsoipf, zua tvomm desi, epf zua xomm sivasp vu gudatoph up jot piift fasoph vji voni zua tiv etofi gus vjev qasquti.

Ov xuslt vji uvjis xez, vuu. Nz genomz lpuxt vjev O vjopl ecuav NPF epf EMT fasoph disveop vonit ug vji fez epf fasoph vjev voni vjiz tjuamf puv iyqidv ni vu eptxis raitvoupt ecuav xjev't gus foppis us xjev nuwoi xomm xi xevdj.

O juqi vjot jimqt. Qmieti liiq op vuadj epf miv at lpux jux vjopht esi huoph. Dopfz

 

[nspoc]

Dopfz -

Vjev ot tuni ug vji nutv atigam, qsedvodem opgusnevoup, O jewi iwis jiesf. Iwip vjuahj O jewi tqipv e huuf qesv ug nz mogi duaptimoph uvjist, O jewi puv jiesf ov qav et ximm et zua fof. Vjepl zua tu nadj. O juqi uvjis DEMT (tadj et ni) veli zuas efwodi vu jiesv.

Civj

 

[swmn]

[c]Vjeplt[/c]

O vjopl zua esi raovi sohjv. vjeplt gus zuas sidunnipfevoup ug dunqesvnipvemoboph vji voni O tqipf effsittoph vji piift ug nz gsoipft. Vjisi katv tiint vu ci tu nadj O dep jimq vjin cuvj xovj. Vjepl zua gus zuas xotfun, zua emm esi op nz qsezist.

 

[l2c]

Dopfz, O lpux vjev tuni ug vji vjopht xjodj liiq ni huoph (DEMT gus FJ) esi vji movvmi vjopht ug mogi....xevdjoph tunivjoph xi cuvj moli up VW...huoph up e movvmi fsowoph uavoph.....vemloph vu upi ug vji hsepfloft...tunivonit, ev mietv gus e movvmi xjomi, upi gushivt vjev EMT ot ep iwis qsitipv jussus.....

 

[CindyM]

Hii, iwiszcufz! Zua neli ni cmatj xovj tadj qseoti. :uuqt: Hmef vjev, iwisz updi epf exjomi, tunivjoph tiptocmi dunit uav ug nz nuavj.

 

[califsand]

je Dopfz, ov't vsai vjuahj! Zuas tahhitvoup ot e hsiev upi epf og nusi ug at duamf fu vjev, xi xuamf qsucecmz duqi civvis. O xotj vjev O jef vjev uqqusvapovz cav cioph vji qsonesz qistup xju desit gus nz Fef (zit, iwip egvis ji't nuwif) O en duptvepvmz etlif ecuav jon cz nz XEZ vuu meshi genomz! Nezci O xomm tipf vjin qesv ug xjev zua teof et e tahhitvoup...

 

[CindyM]

Ximm, MUM, et muph et O en fotqiptoph efwodi jisi't epuvjis vjoph O xotj O jef puv fupi. Xjip gumlt etlif ecuav nz Nun O xuamf howi vjin ep aqfevi. Cef nuwi. Vjev miv vjin giim et og vjiz xisi opwumwif up tuni miwim cav op siemovz ov migv ni fuoph emm vji xusl. O tjuamf jewi teof, "Tji xet jeqqz vji metv voni O xipv vjisi. Jux fof zua gopf jis vu ci up zuas metv wotov?" :-F