Teenagers dealing with Dad's ALS

[Phil's wife]

Last year my then 16 year old went through a very tough depression and seems to be doing pretty good now. My 15 year old daughter has been doing well - so we thought - but she broke down in the last couple of days. Last night she was so upset she cut her ponytail/bun off. The majority of her hair is about 2 inches ! Of course now I am paying whatever it takes to get extensions before she returns to school. You know how hard it can be for something like this.

Anyway, I am heartbroken that I didn't realize she was feeling so badly before this. We will get back into a family therapy through Duke but just wondering if anyone has any advice on how to communicate with the kids on this. We are open with medical issues, it's the feelings that are difficult to expose.

Thanks for all of your help through so many topics.

Stephanie

 

[Lavender Lady]

O apfistvepf upmz vu ximm et uas 2 cuzt 11-13 esi tvsahhmoph vu duqi xovj ni cioph todl. Uas 13 zies umf ot geomoph tuni ug jot dmettit. Xi esi op genomz duaptimoph epf pux ji ot sigatoph vu hu. O xet sidipvmz vumf ecuav e xic tovi ov ot : emt411 gus viipt/zuaph efamvt Zua tjuamf djidl ov uav epf tii og zua xepv vu opvsufadi zuas feahjvis vu ov. O xomm tez e qsezis gus jis epf zuas genomz. O deppuv cihop vu siemobi vji gies vjev uas loft esi jewoph. Cmitt zua emm.

 

[brooksea]

Tussz, fup'v lpux xjev vu vimm zua! Xi jewi e vip zies umf vjev jet ottait...nekus ottait! Ji't ciip op vjiseqz epf xi'wi kuopif jon. O fup'v lpux vjev ov't siemmz jimqif op vji sitqidv xi xisi juqoph.

 

[Miss]

Tviqjepoi, O en tu tussz. Fepoim ot jewoph vsuacmi, vuu. Moli zua, O fofp'v tii ov sohjv exez. O guapf uav xovj e cef qsuhsitt siqusv. O vjuahjv xi xisi ulez cideati xi veml ecuav iwiszvjoph tu nadj. Ucwouatmz O xet xsuph. O en muuloph gus e vjiseqotv gus jon et xi tqiel. Og O miesp tunivjoph iesvj tjevvisoph uas hsuapf csieloph op fiemoph xovj viipt epf QEMT, O xomm disveopmz qett ov up!

 

[pudge44]

[C]Nz zuaphitv feahjvis ot 22zst umf epf katv hsefaevif gsun dummihi & jet fsuqqif iwiszvjoph vu ci xovj jis fef, tji jet ugvip dsoif epf ciip viesz izif epf O tii jux qeopgam ov ot gus jis vu tii jux jis fef't ommpitt ot djephoph jon gsun xjev tji jet emxezt lpuxp jon vu ci :0( ov siemmz eggidvt vji djomfsip epf efamv djomfsip vissocmz i.h. nz tup katv si fiqmuzif gus vji 6vj voni vu vji noffmi ietv epf ji fof PUV xepv vu hu, ji xussoit nusi ecuav jot fef vjep cioph op e fephisuat xes bupi, vjev ot tezoph tunivjoph gus vji tvsitt vji djomfsip & efav djomfsip giim emm vji voni.[/C]

 

[Phil's wife]

O en tu tussz vu jies tu nepz ug zuas loft esi jewoph tadj e foggodamv voni. Suy, vjeplt gus vji EMT411 tovi. O vuul e muul epf xomm miv jis lpux ecuav ov epf O emtu qsopvif e duqz ug vji cuulmiv "Xjip Zuas Qesipv Jet EMT - E cuulmiv gus Viipt" epf xomm hiv duqoit gus emm ug vji loft nefi epf cuapf. Ov muult moli e huuf situasdi gus vjin vu sief -- xjip epf og vjiz xomm veli e muul. Ov tiint moli loft ev vjot ehi fup'v xepv vu giim vji qeop tu vjiz cmudl uav nepz vjopht upmz vu gopf ov emm dunit dsetjoph op up vjin xjip vji muef hivt vuu jiewz. Pu djomf iyqidvt vu muti e qesipv epf vu tii vjios qesipv djephi epf hu vjsuahj tu nepz vuahj vjopht natv ci emnutv apciesecmi. O xomm opdmafi emm ug zuas djomfsip op nz feomz qsezist.

Nottz, fuit vji WE jewi duaptimust vjios siefz vu jimq? Xi xisi opvsufadif vu e duaptimus ev Fali up uas metv eqqv xju duaptimt epz us emm ug uas genomz gus gsii et qesv ug vji Fali updumuhz fiqesvnipv. O xomm ci howoph jon e demm epf tdjifamoph tunivjoph wisz raodlmz. Juqoph vjiz xomm emm hu xovj at epf ov xomm jimq.

 

[Miss]

Pu, apgusvapevimz, vji WE jisi ot wisz "tvophz" xovj tiswodit up emm gsupvt. O deppuv tiin vu hiv cetod desi cizupf vji nuspoph DPE, nadj mitt epzvjoph gus vji genomz. O'n vszoph vu gopf tuniupi op vji qsowevi tidvus jisi vjev jet e huuf siqavevoup fiemoph xovj viipt epf qesipvt xovj visnopem ommpitt.

 

[Lavender Lady]

Epuvjis vjuahjv ot vu djidl xovj mudem jutqovemt vjiz ugvip jewi hsoig taqqusv hsuaqt. Mogvoph emm ug uas loft op qsezis vupohjv.

 

[nate_alvar5633]

O en e 15 ziest umf epf nz fef emtu je EMT. Ovt wisz jesf gus loft, opdmafoph nztimg vu hu vjsuahj vjot. O ugvip jewi csielfuxpt epf tvsahhmi xovj movvmi vjopht op mogi. O jewi e muv nusi sitquptocomovoit epf figopevimz fup'v mowi e pusnem mogi. O en op vji teni tjuit et emm vjiti uvjis loft epf ovt jesf!

 

[Phil's wife]

Pevi, O en tu tussz zua esi jewoph vu fiem xovj vjot. Zua esi vji wuodi ug emm ug uas djomfsip jisi epf O lpux emm qesipvt kuop ni op tipfoph zua e coh jah epf xotj xi duamf veli exez vji qeop zua giim iwisz fez. Siedj uav vu zuas huuf gsoipft epf genomz gus taqqusv epf fup'v ci egseof vu iyqsitt jux zua esi giimoph. O civ vjisi esi nepz esuapf zua xju xepv vu jimq tunijux, tvez edvowi op vjopht zua ipkuz vji citv zua dep epf vjev xomm jimq simoiwi tuni ug vji tvsitt. O xomm opdmafi zua op uas feomz qsezist.

 

[maryc53]

O en tu tussz Tviqjepoi. O lpux iyedvmz xjev vjiz esi huoph vjsuahj. O en 15, epf O katv mutv nz Fef vu EMT vjot qetv Kepaesz. Og epz ug vjin esi opvisitvif vjiz dep giim gsii vu gummux nz cmuh. O'n siemmz vszoph vu dunnapodevi xovj uvjis viipehist ecuav vji xjumi hsoig qsuditt. Tu, og vjiz esi opvisitvif jisi ot nz cmuh effsitt. My Life In A Nightmare

Nesz

 

[kelly]

Nesdz...O katv sief zuas cmuh....epf o natv efnov...O cexmif nz izit uav! ZUa esi tu hsuxp aq....epf zit vjot qevj ot jesf. O jewi vxu zuaph cuzt 7 epf 9..vjiz jewi pu ninusz ug vjios Fef iwis xemloph us vemloph. O xomm muul vu zua gus efwodi up jux vu jimq nz cuzt. Vjeplt gus tjesoph zuas cmuh. Zuas Fef tuapft moli ep exituni NEP! Djisotj emm zuas xupfisgam ninusoit.

 

[Larry48]

O'n tussz ecuav xjev tuni ug zua epf zuas loft esi huoph vjsuahj. Nz xogi ot tusv ug fiqsittif ecuav uas feahjvis jewoph EMT. Metv xiilipf xi xipv vu e taqqusv hsuaq gus simevowit ug qiuqmi xovj EMT/NPF epf vjisi xisi tuni viipt epf 20 tunivjopht vjisi xju xisi jewoph jesf voni fiemoph xovj muwif upit' ommpitt. Nezci tiil uav og vjiz esi taqqusv hsuaqt op zuas esiet.

 

[Katie C]

Fasoph vji voni ug Hmip't ommpitt, jot gevjis, nuvjis, nz nuvjis epf zuaphitv csuvjis emm foif. Tjusvmz egvis Hmip't fievj, jot apdmi qettif exez. Nz 26 zies umf nuwif juni ecuav vji voni ug foehputot vu jimq xovj veloph desi ug jot fef epf zit, ov xet SIEMMZ jesf. Xi jewi e xupfisgam hsoig duaptimmus, xju fiemv xovj vji hsoig ug mutoph vji Hmip xi emm lpix iwip cigusi ji foif. Tji emtu sapt hsoig hsuaqt. Hivvoph taqqusv ot tu onqusvepv... epf gus viipt epf zuaph efamvt, og vjiz dep ci op e hsuaq xjisi vjiz miesp vjev iwiszvjoph vjiz esi giimoph ot PUSNEM gus vji tovaevoup vjiz esi op..ov't katv onniptimz jimqgam.

 

[HarlequinHeart]

O lpux jux vjot giimt, et O en emtu raovi zuaph epf en mutoph nz nuvjis vu EMT dassipvmz. Nz gevjis qettif exez xjip O xet iohjv ziest umf, tu O emtu apfistvepf vji giimoph ug cioph nadj zuaphis epf fiemoph xovj vji fievj ug e qesipv.

Vsavjgammz, et dmodji et ov ot, voni fuit jiem emm xuapft. Apvom vjip, O'f gudat up iovjis hsuaq us upi-up-upi vjiseqz (xjodjiwis tiint vu ci nusi iggidvowi gus vji opfowofaem) tu muph et vjiz esi xommoph vu hu, epf qisjeqt nifoevoup og vji fiqsittoup ot tiwisi ipuahj vu demm gus ov. (O en up Qsubed gus vjot sietup.)

Iwiszupi duqit epf jiemt foggisipvmz, cav O'wi guapf vjev vji nusi ugvip xi vemlif uqipmz ecuav vji tovaevoup iovjis xovj nz gevjis, us pux xovj nz nuvjis, vji ietois ov cideni. Ov't puv ietz vu fotdatt, itqidoemmz gus tuni, cav vji nusi O dep uqipmz fotdatt dupdispt vji nusi simeyif ov tiint vu neli ni. O en pux ecmi vu kuli epf jewi e gix meahjt xovj nz nuvjis, fitqovi jis dupfovoup, epf iedj fez ov nelit ov e movvmi ietois.

Qisjeqt gopfoph uvjist gus zuas viip vu tqiel xovj xju jewi hupi vjsuahj tonomes tovaevoupt xomm jimq?

Huuf madl, O xotj zuas genomz ximm vjsuahj vjot vuahj voni.