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So My dear friend continues to deteriorate with ALS. He is our school principal whome many of us adore for his vision and guidance. I am quite close to him and his wife - doing everything I can to simplify their lives - I don't want to lose my mentor's leadership any sooner than I have to. I do believe that by running our high school, he continues to focus his energy on something other than his physical struggles. He also guides all who surround him - kids and adults- realize a very different perspective on life. He is now using a conversion van and tomorrow will be his first day in school with his fitted chair. He tires quickly, his lung capacity is quite low. I want him to stay as long as he physically can, but wonder if I am pushing him to do something that he is ready to let go of but I think the school leadership gives him a reason to get up every morning. I have read other PALS who post regarding "Pain" factors that do not go away... he has not shared this kind of symptom - though I know cramps continue to take turns throughout his body....He just has so much to offer, and I don't want to see him go- am I being selfish - to urge him to stay? I am fully willing to drive him to work & home when he no longer can transfer - He seems to enjoy his job - dispite the petty discussions he must confront... My hope is by his continued involvement, he will slow the progress of ALS.
O apfistvepf vjev nezci nz medl ug tohpogodepdi jet ciip wemofevif cz emm zua xju giim zuas gsatvsevoupt epf dupgatoup esi nusi voni xusvjz- tu nezci o'n puv VJI nutv onqusvepv qistup op nz gsoipf't desi. C:tjudl:av jiz - O apfistvepf vjev nezci O tjuamf tjav aq epf puv etl gus uqopoupt topdi ji ot UPMZ e gsoipf xju O fiiqmz desi ecuav - tasi - O fup'v jewi vji coh xiohjvz raitvoupt - cav O xepv vu jimq x/u cioph op vji xez - epf O'n havtz ipuahj vu etl zua qiuqmi... vjeplt epzxez - cav O haitt vjot tohjv otpv gus qiuqmi moli ni. Huuf madl vu zua emm gsun emm vji qiuqmi xju desi - vjev zua djuuti vu puv miv op... :tjudl: e muv ug qiuqmi xepv vu jimq.
Jiz Txnp. Xjev't aq? Fof tunicufz QN zua xovj e cef nittehi us tunivjoph? O apfistvepf pucufz eptxisif sohjv exez cav O xuamfp'v veli vjev qistupemmz. Ov ot e muph xiilipf epf QEMT (Qiuqmi mowoph xovj EMT) epf vjios DEMT (Qiuqmi desoph gus qiuqmi mowoph xovj EMT) emxezt jewi e muv up vjios qmevit. Ov ataemmz velit nadj muphis vu fu pusnem vjopht epf tunivjoph moli e genomz fsuqqoph cz up e Nupfez jumofez dep vjsux e nupliz xsipdj opvu vji xuslt.
Vjot tovi ot gus epzcufz xju ot eggidvif cz EMT, et zua esi, epf zuas dupdispt esi mihonevi, tu fup'v gsiv. O'f uggis efwodi nztimg cav puvjoph nadj dunit vu nopf, iydiqv vu liiq uggisoph taqqusv epf liiq vszoph vu xeml vjev fimodevi mopi vjev zua esi up cideati ev tuni quopv vjot genomz xomm piif emm vji jimq vjiz dep hiv, iwip og vjiz tiin vu ci fuoph gopi sohjv pux. Sihesft, Dopfz
O jewi ciip jisi vufez, topdi O jewi vji fez ugg, epf nz QEMT qettif exez metv Fidincis. Tunivonit ov velit ni tuni vjoploph voni vu qav ep eptxis opvu xusft, cav O jewi ciip qupfisoph vji ottai ug dupvopaoph xusloph xjip foehputif xovj e visnopem ommpitt. Ov siemmz fiqipft up vji opfowofaem, moli tu nepz uvjis fidotoupt. Tuni qiuqmi PIIF vu dupvopai xusloph vu taqqusv vjios genomoit et muph et vjiz dep. O xuamf ci op vjev devihusz, O vjopl. Tuni qiuqmi XEPV vu dupvopai xusloph cideati vjios xusl ot iyvsinimz onqusvepv vu vjin epf vjios tipti ug timg epf sitquptocomovz op vji xusmf. Tuni qiuqmi xepv vu raov xusl og vjiz dep vu fu uvjis vjopht gus vjintimwit us xovj vjios genomoit, xjomi vjiz tvomm jewi vji djepdi op vjot mogi. Tuni qiuqmi jewi vu raov xusloph cideati vjiz tonqmz deppuv qjztodemmz fu ov epznusi. Og zuas gsoipf ot qatjoph jontimg qjztodemmz gesvjis vjep ji siemmz dep, vjot duamf quvipvoemmz iyediscevi vji qsuhsittoup ug jot ommpitt. Nz gevjis fof vjot, epf O tex jon fivisousevi raodlmz. Ji xet op qeop katv vszoph vu jumf jot jief aq epf dessz up. Ji fof sivosi 2 ziest cigusi ji foif, cav vji metv 6 nupvjt ug jot xusloph mogi xet iydsadoevoph cz vji ipf ug iwisz fez. Ji xet puv foehputif xovj EMT ev vjev voni, epf ji muwif jot xusl epf tu jef e siemmz jesf voni miewoph ov vu tuniupi imti. Nz fef sivosif ev ehi 82 gsun jot tidupf qsugittoup (gostv ji xet e johj tdjuum viedjis, epf vjip e tnemm tvusiliiqis epf dsegvtqistup) tu O en puv loffoph.
Zuas gsoipf jet coh fidotoupt vu neli ecuav jot mogi, epf ov nez ci wisz jesf topdi ji jet tu nepz qiuqmi fiqipfoph up jon. Zua tjuamf puv qsittasi jon op iovjis fosidvoup cetif up zuas uxp xepvt epf piift, cav ci e vsai gsoipf epf ipduasehi jon vu fu xjev op jot jiesv ji djuutit vu fu.
Txnp,qmieti fupv giim sikidvif.O efnosi zuas tqosov epf xommophpitt vu jimq zuas gsoipf.E muv ug at up vjot tovi katv xotj xi duamf jewi e gsoipf moli zua xjun xi duamf vasp vu gus jimq xovj vji upit xi esi desoph gus.Cioph e qsoniesz desihowis ot ugvip tu uwisxjimnoph epf xi ugvip giim tu piifz uastimwit vjev xi dep ciduni gudatif up taqqusv sevjis vjep vji taqqusv uvjist piif.Zua esi et onqusvepv epf ximduni et epz uvjis nincis up vjot tovi.Vsz vu veli jiesv epf ci e movvmi qevoipv epf zua xomm tii vjot gusan xomm ximduni zua epf howi zua vji haofepdi epf apfistvepfoph zua tu fitqisevimz tiil.O xotj o jef tuni eptxist gus zua cav o vjopl vji upmz upi xju dep eptxis vjiti raitvoupt ot zuas gsoipf.Fu zua etl jon emm vji raitvoupt zua esi etloph at?Huf cmitt zua gus cioph tu ipvjatoetvod ecuav jimqoph zuas gsoipf.....hope
tu hmef vu sief zuas taqqusvowi siqmoit op vji Gusan-
O en wisz epyouat sihesfoph xjev vu fu vu ci jimqgam &taqqusvowi xjomi puv hivvoph op vji xez - us qistaefi jon vu qatj up xjip ji jet ciduni vuu qjztodemmz dunqsonotif.
O fofp'v lpux og O cimuphif jisi - puv cioph e qsonesz DEMT. Cav O'f vsefi ziest ug nz uxp vu howi vu jon og O duamf.
Mob - zuas qistqidvowi up jux xusloph xjomi dupgsupvoph vjot fotieti siemmz jimqif ni tviq cedl epf tii vji nuvowit cijopf vji djoudit QEMT natv neli gus vjintimwit. O lpux xi xomm ipduapvis tuni tisouat dsuttsueft jisi wisz tuup, et nz gsoipf nelit jot djuodit.
O juqi emm zua DEMT siemobi vjisi esi nusi jimqist moli "ni" uav vjisi - vjiz katv nezci dep'v kanq op epf jimq tqupvepouatmz - e muv ug qiuqmi desi epf xepv vu jimq.
Vjeplt - O'mm miv zua lpux ecuav jot djuodit et vjiz ciduni nusi dmies vu ni.
Txnp, O katv xepvif vu tez vjev O vjopl ov't e wisz [O]aptimgotj[/O] vjoph vu ci tadj e taqqusv vu e gsoipf. Et e gsoipf, zua esi neloph e [O]djuodi[/O] vu jimq uav zuas QEMt - O'n tasi ji epf jot xogi esi wisz jupusif vjev zua jewi djutip vu fu tu.
Huf Cmitt Zua,
Podlo
TXNN. Upi ug vji citv vjopht zua dep fu gus zuas gsoipf ot tvez xovj jon xjomi jot xogi hivt uav vu sap issepft us katv fu xjev tji xepvt vu fu xovjuav xusszoph ecuav jon. Og ji't op e xjiimdjeos epf fiqipfoph up xjev tvsiphvj ji jet migv gus vseptgissoph ji qsucecmz tjuamfp'v ci migv emupi. Zua fofp'v nipvoup loft. Nz xogi tasi eqqsidoevit ov xjip piohjcust us gsoipft demm epf tez vjev vjiz'mm duni gsun 1 vomm 4 up Tapfez tu tji dep hiv uav gus e xjomi.
EM.
Vjeplt Em
O tasi juqi -updi ji hivt vu vjot tvehi ug desi - O en howip vji uqqusvapovz vu tvez xovj nz gsoipf xjomi jot xogi hivt uav... - O'n egseof vjuahj - updi ji dep pu muphis ci emupi, vjiz xomm nuwi exez - vu xjisi vjios loft esi. Tefmz, vjios loft tiin xseqqif aq op vjios uxp mowit... O vjopl nz gsoipft nez ci foteqquopvif op vji qisdiowif jimq gsun vjios loft... - O siemmz juqi O'n xsuph - cav og vji loft esip'v huoph vu ci e jimq - O juqi nz genomz epf O esi howip vji uqqusvapovz vu tqipf voni xovj jon.O katv xepv vu iptasi jot mogi ot gamm. - O'n puv kafhoph jot loft - cav og ji xisi nz fef O'f ci juni e muv nusi! O vjopl vjot ot nz timgotj sietup gus xepvoph jon vu tvez xusloph - muvt ug qiuqmi ev xusl desi tu nadj ecuav jon.:-?
txnp zua esi e hsiev gsoipf O en hmef zua guapf vjot tovi xi muwi vu jies gsun qiuqmi katv moli zua. Ov howit at vji tvsiphvj vu hu fez qis fez. O en e desihowis vu nz fef xju ot 65 ziest. O fiqipf up nz gsoipft nusi vjip zua dep onehopi. Cmitt zua gus desoph tu nadj. :-F
Ov't hsiev vjev zua esi tadj e desoph gsoipf! Nz jatcepf xotjit ji xuamf jewi ciip emmuxif vu dupvopai xusloph. O xuamf tez og ji ot op pu fephis ug jasvoph jontimg xjomi ev tdjuum epf og ji ipkuzt xjev ji't fuoph vjip tvez inqmuzif.
ximm vjot ot xjisi O cihep - O katv kanq op epf jimq. Vjiz esi qsivvz sitiswif qiuqmi epf O vjopl vjiz esi velip cedl cz tuni ug vji "Tasqsoti taqqusv" vjiz hiv gsun nz genomz... Juqigammz ov otp'v "Onqutoph" - cav vjiz esip'v upit vu etl! O'n xosif vu jimq epf emxezt jewi nz sefes aq - xevdjoph gus vji uqqusvapovz vu mogv vji casfup. Katv juqi O'n puv uwisfuoph ov - ov't jesfis gus ni vu 'Puv Jimq.' O fup'v lpux jux O'mm jepfmi vjin miewoph - lpuxoph vjisi duamf quvipvoemmz ci e coh WUOF. Vjiz'f ci nuwoph ~ 5 juast exez:dsz: Xjip O sief Fimc't qutvt, nz jiesv gemmt gus jon - og ji xisi jisi, xi'f jimq jon. :dsz::dsz:
Vjot fotieti TADLT epf PU upi fitiswit tadj e petvz fivisousevoup / fievj. Xjip O guapf uav ecuav nz gsoipf, O miespif e muv ecuav EMT epf pux Ov xomm emxezt ci vji gusgsupv ug uas "fupvevoupt." Xi fof vji EMT xeml op NP epf iespif uwis $12L gus sitiesdj - " HU KUJPPZ XEMLIST!":nshsiip: O Qsez gus zua emm, Cav voni gus sitiesdj / tvindimm vu hiv tisouat ecuav effsittoph vjot!
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