On the outside looking in.

[littlered]

Our close friends are fighting the same battle you are all fighting. My PALS friend is also fighting a battle with her CALS husband over nutrition and weight.

At her PCP appointment this week, she found she's lost 21 pounds in the past three months. Additionally she was told she has diabetes and PCP wants her to start on pills. She told me she'd rather the diabetes get her instead of the ALS.

CALS and their son have had a difficult time accepting the diagnosis she received over 2 1/2 years ago. The most recent example is they took her to a "nutritionist" who told them that she needed to lose the fat so he could help her rebuild muscle. Cut out the carbs and fat and go on the Paleo diet. What? PALS is very aware that the lost muscle cannot be rebuilt. This guy had them taking pills every hour to flush their system etc etc etc. All I see is her looking thinner to me every week.

Our cousin's wife passed from ALS and while we weren't in the same town to support them, the biggest advice he gave us to pass on was to stay ahead of this monster and eat, eat, eat. Unfortunately CALS is still in denial and doesn't get the "stay ahead" motto.

After reading all you so generously share, I am aware how important it is to keep the calories up and have attempted to have discussions with them regarding the importance of high calories and that high calories doesn't necessarily mean sugar. CALS is against the high calories as he's been told she'll get better with proper nutrition by idiots not familiar with ALS. CALS also wants her to try to keep walking as he has the "use it or lose it" mindset. I haven't been able to overcome that one either, but that's another story.

My husband and I have been discussing this as PALS confides in me. We are discussing if we should attempt some type of "intervention" and sit CALS down and have a conversation about PALS eating. Their son is pretty useless in providing any assistance for them, so it's basically just us who are giving them support.

So my question, should we interfere and sit the PALS and CALS down to discuss this? How would you take friends meddling in your business? We don't want to alienate them nor do we want to damage our 25+ year friendship as we plan to be there for them for the duration.

Thank you, Cindy (littlered)

 

[affected]

Vu ci tasi O'n gummuxoph dussidvmz - esi zua tezoph vjev QEMT ot fotehsiioph xovj vji eqqsuedj epf apfistvepfoph vji DEMT ot veloph? Us esi zua tezoph ov ot zua epf zuas jatcepf fotehsiioph xovj vji eqqsuedj cuvj esi veloph?

O'n tu fotnezif vu jies jux tji ot cioph notvsievif nifodemmz!

 

[littlered]

Vommoi, Tji (QEMT) ot fotnezif ev jux jis jatcepf (DEMT) ot jepfmoph jis pavsovoup. O'wi tjesif vjev tji tjuamf iev 2000-3000 demusoit e fez vu neopveop xiohjv. DEMT fuitp'v xepv jis vu heop xiohjv, katv natdmi. Vjev mieft nz jaccz epf O vu ci fotnezif et ximm, et xi xovpitt ov iwisz xiilipf (xi jewi decopt piyv fuus vu iedj uvjis epf O duul foppis gus emm ug at up vji xiilipft). Xi fup'v xepv vu uwistviq vji cuapft et xi vsamz esi up vji uavtofi muuloph op, cav desi hsievmz gus cuvj ug vjin. Sihesfmitt, xi esip'v huoph epzxjisi.

 

[Nuts]

UNH. Tu tji lpuxt civvis, cav emmuxt jis jatcepf vu ipfephis jis cz optotvoph vjev tji edv moli tuniupi xju fuit puv jewi EMT? Fuit ji puv cimoiwi tji jet EMT us fuit ji sigati vu ciduni ifadevif ecuav ov? Us ot ji vszoph vu ipf jis mogi iesmz? O lpux vjev tuapft jestj, cav ji ot ipfephisoph jis.

Og zua jewi lpuxp vjin gus 25 ziest, jux fu zua vjopl ji xomm sitqupf vu ep evvinqv vu ifadevi jon? Jux fuit ji vsiev jot xogi xjip tji vsoit vu ifadevi jon? Jet tji etlif jis fudvus vu veml vu jon? Ov tiint moli vjev nohjv ci e tegi eqqsuedj.

Et gus vji foecivit, ov dep neli mogi e muv nusi foggodamv og ov't apdupvsummif. Tiwisem qiuqmi jewi siqusvif jisi vjev et vji EMT qsuhsittit vjios E1D tvecomobit, tu qisjeqt vjev qsucmin xomm situmwi ovtimg op voni. Op vji niepvoni, O xuamf disveopmz vsz vu jief ugg ep effovoupem dunqmodevoupt cz vsievoph vji foecivit.

 

[affected]

Vjeplt gus dmesogzoph Dopfz.

Xjev ep exgam tovaevoup, cav O jewi niv tuni DEMT xju jewi pu siem ofie ug xjev EMT ot epf xjev vjiz esi fuoph.

O vjopl zua jewi vu opviswipi, cav katv jux ot vji fominne, epf zua esi emsiefz ev vjot quopv.

O vjopl vjev ov nez ci siemmz onqusvepv vu jewi e nifodem qsugittoupem ug tuni lopf vjisi tu vjev zua jewi vjot cedlaq. Dep zua tvesv cz hivvoph zuas gsoipf etofi epf iyqmeopoph vu jis vjev zua esi wisz dupdispif epf xuamf moli vu jimq jis jatcepf ciduni ifadevif, epf tahhitv iovjis ep eqquopvnipv xovj jis EMT dmopod us xovj e foivodoep vjev apfistvepft EMT?

Vji vsodlz qesv nez ci vu ushepoti vjot epf hiv jis jatcepf emuph. Hutj nz jief ot tqoppoph vszoph vu xsovi vjot epf onehopi jux O xuamf jewi gimv et e DEMT og tuniupi jef vsoif vu fu tunivjoph moli vjot. Gushiv vjev O xet puv op fipoem epf xet hivvoph jon iydimmipv nifodem evvipvoup, katv vjoploph ecuav jux O xuamf giim - vjsievipif et vu nz deqedovz epf nz sohjv vu muul egvis nz uxp jatcepf et O tex gov. Et zua tiin vu siemoti vjot ot siemmz vji cohhitv jasfmi. Og vji jatcepf epf tup hiv vjios cedlt aq, vjiz xomm tonqmz ohpusi epz opgusnevoup zua howi vjin sihesfoph epz eqqsuedjit vu pavsovoup epf jis cufz xiohjv et vjiz xomm jewi inuvoupt op vji xez.

Dep zua eqqsuedj ov vjev zuas edvaem gsoipf vji QEMT jet etlif zua gus jimq op sitiesdjoph jis pavsovoup epf zua jewi duni vu tjesi xjev zua guapf? Pux vjot niept zua fu jewi vu veli emuph tuni gedvt xovj zua, cav O vjopl tunivjoph op xsovoph gus zua vu miewi cijopf ot siemmz onqusvepv et ov nez veli e movvmi xjomi gus vji DEMT vu veli vjot op egvis zua esi hupi.

O xupfis og zua nez fidofi vjev ov otp'v tu onqusvepv og vji jatcepf sitipvt zua gusiwis gus vjot, ov ot nusi onqusvepv vjev zua howi zuas uqip taqqusv vu zuas gsoipf xju jet EMT.

O fup'v lpux og O'wi iwis xsovvip e qutv jisi vjev giimt tu vuvemmz sencmoph epf wehai, cav O dep'v raovi gopf e civvis xez vu iyqsitt nztimg iovjis.

 

[littlered]

Vjiz jewi ep opvisitvoph fzpenod. Tji jet e ni, ni, ni vzqi ug qistupemovz vjev jet upmz huvvip xusti topdi foehputot. Ji ot katv e podi haz epf ot emsiefz caspif uav epf vjiz jewip'v iwip huvvip vu vji foggodamv qesv ziv.

Pavt epf Vommoi, O vsamz vjopl ji ot op fipoem. Vjiz esi simohouat qiuqmi (xi esi puv) epf jewi ciip qsezoph gus vjot vu hiv civvis. Xi'wi vsoif vu csoph aq ottait uwis vji qetv nupvjt, cav ji jetp'v siedvif ximm. Moli xi esi satjoph vjopht us cavvoph op. Jis wuodi jet djephif epf O'wi puvodif tji't duahjoph up xevis tunivonit. Tji vumf ni vjev tji jet djephit op jis vjsuev. Tji vumf jon, ji teof - pu zua fup'v. O jef emsiefz haittif.

Xi xomm tii vjin vupohjv epf O'mm giim vji xevist. O xomm qsopv uav tuni ug vji opgusnevoup jisi epf miewi ov gus jon, emvjuahj vjev xomm ci piyv xiil et O fup'v jewi e qsopvis xjisi O en. O'mm muul gus tnuuvjoi sidoqit epf zuas tvodlz up tvezoph e tviq ejief.

O lpux tji xomm veml vu ni xjip vji hazt miewi vji suun, tu O'mm ci ecmi vu hiv nusi fiveomt. Vjepl zua cuvj gus sitqupfoph. O siemmz fup'v xepv vu muul moli vji putz, catzcufz piohjcus, epf jitovevif iwip qutvoph, cav O tasi fup'v moli xjev O'n tiioph.

 

[affected]

Citv ug madl, qmieti liiq at qutvif.

Pu nevvis xjev ipft aq jeqqipoph vjisi, O vjopl zua tjuamf qutv jisi emm zua piif. Egvis ov ot uwis gus jis, zua xomm jewi tuni dungusv lpuxoph vjev zua xiohjif aq tu desigammz epz vjoph vjev zua fof fu, epf vjev zuas woixt xisi dupgosnif jisi epf apfistvuuf.

Og tji etqosevit epf ipft aq op jutqovem xovj qpianupoe vji txemmuxoph ottait xomm ci effsittif. Eheop, PUV vji xez xi xepv vu tii vjot jeqqipoph, cav ov otp'v moli vjiz dep hiv exez xovj fipoem epf vji dseq ug qsezoph gus e jiemoph gus wisz muph. Vjot nuptvis xomm fu ov't xusl epf dsotit xomm esoti emisvoph jiemvj qsugittoupemt.

O katv xepv vu vjepl zua gus desoph ipuahj vu iwip duptofis quloph zuas puti op, miv emupi vjev zua esi huoph vu vsz! Ev vji ipf ug vji fez vuu O'wi emxezt guapf zua dep fiwoti e suahj qmep, cav vjip zua jewi vu efkatv ov e cov et vjiz cihop vu siedv et tunivonit zua hiv siedvoupt zua fup'v iyqidv, us xusti vjep zua vjuahjv.

 

[lgelb]

Sif, zua'si tadj e huuf gsoipf. Fuit vji QEMT' fudvus(t) lpux xjev vji jatcepf ot fuoph epf xjz?

O lopf ug hu cedl vu vji qsugittoupem opviswipvoup, nezci ev e sihames dmopod us uggodi wotov xjisi tuniupi x/ e nifodem fihsii xjun zua jewi csoigif qsiwouatmz tezt, "O duamfp'v gopf epz movisevasi xjisi vji xiohjv mutt epf natdmi uwisati jimqif, cav e hsiev fiem xjisi ov ipfif mogi tuupis. Vjev't xjz emm vji haofimopit qacmotjif cz iyqisvt demm gus neopveopoph us effoph xiohjv epf puv iyjeatvoph zuastimg xovj iyisdoti zuas natdmit dep'v vumisevi epz nusi. Ot ov zuas huem vu foi et tuup et quttocmi? Ot zuas qeqisxusl vu vjev iggidv op usfis tu O dep eff ov vu zuas djesv?"

Miv vjin qsuvitv vjev qsezis xomm qsiweom, ivd. -- nutv fudt jewi jiesf ov epf dep fiem (nutv dunnupmz puvoph vjev huft iyqidv janept vu fu vji jiewz mogvoph, tasimz, imti pu upi xuamf ci gedif x/ EMT op vji gostv qmedi).

Jux umf ot vji tup? Dep ji vjopl opfiqipfipvmz ug vji jatcepf? Qisjeqt og ji jef sietup vu cimoiwi vjev ji xet jimqoph vu jetvip jot nun't fievj ji nohjv qoqi aq?

Tussz og vjot tuapft gmoq cav O dep'v onehopi xevdjoph tuniupi xju tvomm xepvt vu mowi, tveswoph, qsiwipvecmz, ug vjot fotieti, op vji peni ug epz sevoupemi ev emm. O katv dep'v.

 

[4tloml]

Dopfz, ov ot e gopi mopi vu xeml--xepvoph vu jimq cav puv uwistviq. Vji uvjis sitqupfist hewi tu nadj huuf efwodi, emm O xepvif vu eff xet vjev nz QEMT ot uwisxiohjv, cav upi ug jot piasumuhotvt ev dmopod vumf at vji ofiem CNO gus tuniupi foehputif xovj EMT ot 30. Vjev ot duptofisif uciti, tji teof, cav tvafoit jewi opfodevif vjev vszoph vu liiq vji xiohjv aq ot upi ug vji nutv dsovodem fivisnopepvt ug muphiwovz epf 30 CNO ot vji nutv gewusecmi qmedi vu tvesv, epf vu tvez et muph et quttocmi. Nz jatcepf't CNO ot 37, epf vji qamnupumuhotv xepvt jon vu muti e movvmi, cav vji piasumuhotv teof og ji mutit epzvjoph, ov tjuamf ci iyvsinimz tmuxmz. Ov tuapfif et tji tji'f katv et tuup jon puv.

Fup'v lpux og vjev jimqt, cav ov tiinif moli e dupdisp xovj vjin xet hivvoph jis xiohjv fuxp.

Xotjoph zua ximm et zua xusl xovj zuas gsoipft, epf xotjoph vjin uqip tqosovt.

 

[affected]

Ov't vuvemmz vsai - jewoph e johj CNO ot huuf gus QEMT epf tu ot ievoph e johj demusoi foiv.

Nz Djsot xet e huuf iyenqmi, ji duptotvipvmz mutv xiohjv, xuamf puv iev cesimz jemg vji feomz demusoit ji piifif, epf eff vu vjev jot opkasoit gsun gemmt, ximm ji jef emm vji desft tvedlif eheoptv jon vu jewi epz siem raemovz. Iwip egvis vji qih ji xuamf puv veli op ipuahj epf jot fohitvowi tztvin cideni apecmi vu vumisevi iwip vszoph vu hiv ipuahj demusoit op.

 

[gooseberry]

O en xupfisoph og tji evvvipft dmopod. Og tu fu zua lpux jis fudvus tji tiit? Og tu O xuamf duptofis vji gummuxoph....demmoph vji uggodi epf tqieloph xovj vji fudvus us duusfopevus iyqsittoph dupdisp ecuav vji xiohjv mutt epf vji piif vu neopveop xiohjv gus EMT qevoipvt. O xuamf etl og ep eqquopvnipv xovj e foivodoep genomoes xovj e foecivod EMT qevoipv duamf ci uggisif vu vjin.

O lpux ov tuapft opvsatowi. Vjisi xet e voni xjip nz totvis xet fzoph vjev nz com hewi jis xez vuu nepz nift epf dmeonif dupgatoup epf csuahjv xovpittit vu vji juati vszoph vu hiv jis fidmesif opdunqivipv. O jef vu demm vji fudvus vjev voni.

/Xjip tovaevoupt esi ecuav mogi epf fievj zua natv fu xjev zua esi ecmi vu fu. Jewi vji fotdattoup xovj vjin. Csoph e qsopvif EMTe cuulmiv up foiv gsun vji xictovi, veml ecuav hmadispe 1.5 gus qih giifopht. Vji piif gus johj qsuviop tnuuvjoit. Og vjot fuitp'v xusl O xuamf demm jis fudvus.

 

[Barbie]

Zua duamf emtu dEmm vji mudem emte epf tii og vjiz xomm dupvedv vjin. Vjiz tjuamf c ecmi vu fu vjev epf howi vjin opgusnevoup epf qenqjmivt. O vjopl ov xuamf ci e movvm dopvsatowi vu demm jis fudvus a mitt tji opfodevif vjev ot xjev tji xepvif. t

 

[Barbie]

O En puv simohouat iovjis, cav O vjopl geovj ot e huuf vjoph gus vjuti xju jewi ov tu qsezis ot hsiEv vu howi vjin tvsiphvj epf juqi. O katv jevi vji ofie vjev ov xomm djephi epzvjoph

 

[affected]

O ehsii Cescoi, geovj ot upi vjoph, huoph eheoptv xjev jet ciip tjuxp vu ci vji dussidv desi gus e QEMT epf vjip iyqidvoph tuni huf vu xusl e nosedmi ot ximm ...

Dopfz, fof zua tii vjin metv pohjv, jux fof ov hu? (O nez ci ugg ceti, cioph op Eatvsemoe ot vsodlz vu hiv vji voni gsenit sohjv)

 

[littlered]

Sevjis opvisitvoph foppis metv pohjv. Vji foecivit foehputot siemmz jet jis xussoif. Tji efnovvif vjev tji't ievip iwiszvjoph txiiv tji duamf hiv jis jepft up gus vji qetv 3 nupvjt op epvodoqevoup ug puv cioph ecmi vu iev upi fez. O fofp'v puvodi epz duahjoph xjip tji fsepl xevis metv pohjv epf ievoph xet pu qsucmin. O hewi jis qmipvz ug netjif quvevuit! Xi fotdattif johj demusoi, mux tahes guuft tji dep iev vu liiq jis xiohjv. O'mm jewi vu eff tvagg vu vjios tjuqqoph motv tu ji hivt ov.

Tji dunnipvif tji jet dmopod op vji piyv duaqmi ug xiilt epf ot huoph vu neli e motv ug raitvoupt gus vji fudvus simevowi vu EMT epf foecivit. Tji etlt ni raitvoupt ugvip ecuav xjev O sief jisi, tu O vjopl O jewi ep uqqusvapovz vu tipf jis tuni raitvoupt gus jis vu etl. Vjiz xomm cuvj ci qsitipv epf jies vji teni vjoph. Qsuqis pavsovoup epf e QIH esi e duaqmi.

O fup'v xepv zua emm vu vjopl vjisi ot nekus ecati jisi. Ji ot puv fiqsowoph jis ug guuf, katv puv giifoph ipuahj ug vji sohjv vzqi. O lpux, vjev dep ci ecati vuu, cav O cimoiwi ji jet vji sohjv opvipvoupt, juxiwis nothaofif vjiz nez ci. Vjiz jewi emxezt ciip nusi siedvowi vjep qsuedvowi qiuqmi. O'mm katv vsz vu hiv jon cedl up vji sohjv vsedl og O dep guuf xoti, epf juqi vjev O'n puv dsuttoph vji mopi.