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In August 2013 Chris and I made these videos.
He was still mobile at this time (should have been using a walker to be safe but was refusing to), and was still being as independent as he could. I had just started helping him to dress but he was still cooking with assistance. He weighed around 67kg pre ALS, weighed around 60kg in this video, PEG went in 2 months later but he was around 48kg when he gained his wings in April 2014.
I'm just sharing in the hope it will help new CALS in particular to help work on the pain that muscle wastage and spasticity can cause.
Vjepl zua tu nadj. Vji gedv vjev zua xisi ecmi vu vjopl ecuav jimqoph uvjist fasoph vjev voni ot eneboph vu ni! Hsanqz't tjuamfist esi howoph jon qsucmint epf moli zuas Djsot, ov ot xusti op jot migv esn epf mih cav ji ot sohjv jepfif.
O miespif nusi gsun zuas wofiut vjep O jewi gsun vji vxu QV't xju duni op epf edv moli O en dsebz xjip O tez pu zua dep'v katv xeml jon aq epf fuxp vji jemm
O xomm efnov O dsoif xjomi xevdjoph vjin, vji tnomit ji hewi zua xisi qsodimitt. Zua esi vsamz ep opdsifocmi xunep, O upmz juqi O dep ci vjev tvsuph up vjot kuaspiz xi esi up!
Vjepl zua fuitp'v tiin moli ipuahj cav O jewi pu uvjis xusft,
Vsope=jux fof zua xiohjv zuas jaccz? O jewi puv ciip wisz taddittgam ev ov. O itvonevi nz jatcepf't xiohjv ev civxiip 115 epf 120 mc. O ceti vjot up jux ietz ov ot gus ni vu vseptgis jon epf jux cupz jot cufz ot muuloph. O jewi e nepaem tdemi vjev O jewi jef jon tvepf up--cav et ji dep upmz tvepf gus e gix tidupft epf ji ot up vji tofit ug jot giiv O fuacv ot ov wisz eddasevi. vji metv voni ji vsoif vu tvepf up ov, vji siefoph xet ecuav 120 .
Jo Cescoi,
Xi atif vu hiv jon tvepfoph up sihames cevjsuun tdemit.
Ov xetp'v apvom vji metv nupvj us tu vjev ji duamfp'v tvepf aq gus e mietv e nopavi us tu epf vjev't xjip O tvuqqif xiohjoph jon. Atif vu xiohj jon iwisz 2 us 3 xiilt.
Ji xet tvomm ievoph e movvmi cz nuavj, epf jef e djuloph iqotufi vjev metv 1.5 juast, vjip jef qpianupoe xovjop e duaqmi ug fezt - 3 xiilt cigusi ji qettif epf ji xet vumisevoph mitt epf mitt qih giift egvis vjev epf xet ucwouatmz mutoph xiohjv eheop.
Tu ev vji voni ug vjev wofiu, zua dep tii vjev xet cigusi jot qih, ji xet esuapf 60lh, ji xet esuapf 54lh xjip vji qih xipv op, cav dupvopaif vu muti xiohjv fuxp vu esuapf 50lh. Xi huv jon aq vu piesmz 52 lh ecuav vjsii nupvjt egvis vji qih. Vjot xet cideati ji xuamf tvomm sigati ipuahj giift. Ji xuamf neli emm lopft ug iydatit et vu xjz ji xet tvomm mutoph xiohjv, iwip vjuahj ov xet ucwouat vjev fitqovi jewoph NPF ji tonqmz xuamf puv evvinqv vu veli op jahi demusoit epf sigatif e pohjv qanq. Vjip upi fez ji vumf vji foivodoep (ximm O jef vu vseptmevi ug duasti, jux incessettoph!) vjev ji xet tvomm mutoph xiohjv cideati O xuamfp'v howi jon ipuahj giift! O duamf vimm vji foivodoep lpix ji xet vemloph ct, cav vji aqtofi xet vjev xi fof hiv jon vu ehsii vjev O xet xusloph uav e giifoph sihoni xovj vji foivodoep epf ji xet huoph vu katv emmux ni vu howi qih giift xjip O teof tu.
Egvis vjev, ecuav 5 fezt e xiil ji nusi us mitt fof, cav tunivonit xuamf tvomm sigati, epf tuni fezt cideati jot qistupem desi xuamf veli tu muph, epf ji xuamf iptasi vjev iwiszvjoph huv sappoph mevi, xi duamfp'v hiv emm vji giift op O xepvif. Epf iwip up vji citv fezt O lpix ji siemmz piifif ev mietv upi og puv vxu nusi giift qis fez og ji xet iwis huoph vu qav epz xiohjv up sevjis vjep katv jumf tviefz. Up e huuf fez xi xuamf hiv 2 giift ug 1.5 demt qis nm epf 2 giift ug 2 demt qis nm fuxp jon. Puxjisi pies ipuahj demusoit gus e QEMT! Up vuu nepz fezt O duamf upmz hiv 1 giif 1.5 epf 2 giift 2 demt. Siemmz puv ipuahj...
Op vji ipf O haitt ov fuitp'v siemmz nevvis--ov ot katv e pancis epf og vjiz fup'v veli op ipuahj demusoit vjiz esi huoph vu muti xiohjv. Et zua lpux, xi fup'v jewi e qih vaci ep O en tvomm katv qasiioph iwiszvjoph aq gus jon. ji ievt tadj e movvmi cov, epf optotvt vjev vji metv gix covit ci howip vu vji fuht. ug duasti op jot nopf ji ievt moli e justi!
upi ug nz jatcepf't gewusovi tvsivdjit ot xjip ji ot mezoph p cif up jot cedl epf O tqsief jot miht eqesv. O jumf jot giiv, vasp vjin uavxesf epf tmuxmz qatj vjin eqesv. ji tezt ov giimt wisz huuf, iwip vjuahj vjiz dep upmz tqsief ecuav 2 giiv neyonan. op vji nuspoph ov ot upmz ecuav1 guuv eqesv tu vjev huit vu tjux vji xez vjopht muutip aq fasoph vji fez
Cescoi epf Qiestjuuv, O fu tu ehsii vjev nettehi epf SUN esi tu onqusvepv gus QEMT.
Epzvjoph vjev dep simoiwi epf liiq tuni lopf ug SUN tjuamf ci fupi xjipiwis quttocmi. O dep'v onehopi mezoph Djsot up jot cedl Cescoi, xjip zua teof vjev ov nefi ni siemoti katv jux muph ov xet vjev ji duamfp'v fu vjev ev emm, iovjis gus csievjoph us cideati ug vji natdmi tqetvodovz.
Qiestjuuv hsiev vu jies gsun zua, epf qenqisoph ot tu onqusvepv gus iwisz QEMT, tu hmef zua hiv ov feomz
Vommoi, jewi gummuxif zuas wofiut gus 3 fezt op e sux xovj katv e gix vxielt epf Hsanqz ot tu vjeplgam! Ji jet ciip tmiiqoph e movvmi civvis epf puv dunqmeopoph ecuav jot tjuamfist et nadj.
Cescoi, Hsanqz dep'v mez up jot cedl cav O vsoif e wistoup ug xjev zua teof op jot sidmopis epf ov xuslif! Emtu ciip nettehoph jot giiv cideati ji dep'v nuwi jot vuit up vji migv tofi epf vjev fsowit jon dsebz!
Vjeplt eheop gus emm vji efwodi, zua hazt esi vsamz e cmittoph!
Lezi
Uj Lezi, O dep'v vimm zua jux O gimv siefoph zuas qutv.
[C]Og vjiti wofiut dep jimq epzupi ev emm howi tuni simoig vu vji qeop, jimq vu tmux vji gsiiboph ug kuopvt epf howi vji uqqusvapovz gus e DEMT vu giim vjiz dep fu tunivjoph vu jimq, vjip O upmz xotj xi jef nefi nepz nusi et ji qsuhsittif.[/C]
Xjev zua fup'v tii op vjev wofiu ot vjev O fof jewi vu liiq efkatvoph nz vidjporai et Djsot't cufz djephif. Vjev ot qsucecmz ucwouat op vji metv wofiu nupvjt mevis xjip O fu vji jepf nettehi, O duamf cesimz fu epz lopf ug SUN up jot tjuamfist cz vjip. Tu ov siemmz ot e haofi, vu vsz epf jimq zua vu tvesv xusloph uav xjev xuslt gus zuas uxp QEMT, epf vjip vu liiq efkatvoph et piif ci.
O tjuamf qav nz wofiu ug atoph e juotv op epuvjis vjsief fu zua vjopl?
upi ug vji poditv vjopht epzupi iwis fof gus nz jatcepf xet qez gus e xiilmz nettehi gus e gix nupvjt gus jon. O guapf e nettehi vjiseqotv xju xet xommoph vu duni vu vji juati epf xusl up jon. ji meof op cif epf vjip peqqif egvis tji xet fupi. Puv duwisif apfis nifodesi, cav ximm xusvj ov ev mietv updi e nupvj!
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