Cognition Question from SunAndSea

[sunandsea]

Checking in on a Wednesday for a change. Was going to start a new thread, looking for advice, but not sure what I would call it. Went to clinic last week and respiration function was surprisingly good - no change in 3 months (71%). But fatigue is more noticeable and confusion continues to worsen. I believe the specialists at clinic were also surprised at his responses, or lack of, and his cognition. E.g., he wasn't able to tell the doctor her name or where we were when she asked. We've been going for two years. I know this is ftd with the als but have others had these difficulties with memory? There are times he doesn't know who I am and he can't remember what we did last week, a year ago, or many years ago - so it's not just short term memory.
Today he is so tired and he said he feels like he is dying. He's using the trilogy more and I can't notice a change in cognition or fatigue with it and without. His appetite is down and he's not eating as much as he should. He's lost weight and is coughing more with liquids so we are now using thickeners.
Sorry if this is disjointed and rambling.
I know others have it more difficult than this. He just says so little, it's difficult when all he is sharing is that he feels he is dying. I guess I am often wondering if I will know when he needs more help.

 

[Atsugi]

Tussz O'n puv genomoes xovj zuas jatcepf. Ot ji xemloph, vseptgissoph, giifoph jontimg, ivd?

Ov't nz qistupem cimoig vjev xjip e QEMT giimt vjiz esi huoph vu hu tuup, vjiz esi ataemmz sohjv. E nusi nifodemmz etvavi qistup dep howi e civvis eptxis.

Xjip O xet ep edvowi desihowis, O qmeppif iwiszvjoph et nadj et quttocmi, vjip katv nefi ov aq juas cz juas et siemovz qatjif at esuapf. O haitt vjev't vji upmz efwodi vjev quqt aq sohjv pux.

 

[affected]

Tu tussz ov't moli vjot!

Vji gevohai ot qesv ug EMT, sihesfmitt ug vji csievjoph pancist. Cav vji ninusz ottait esi raovi tvsephi. GVF otp'v ataemmz ecuav ninusz tu nadj et duhpovoup - atoph vji iyidavowi gapdvoupt, cav ucwouatmz vjisi ot siemmz tunivjoph huoph up xovj jot cseop.

Jewoph teof vjev, O fu cimoiwi QEMT lpux xjip vji ipf ot pies, GVF us pu. Iwip xovj vji cijewouasem GVF xjodj jef nusqjif opvu mephaehi GVF, nz Djsot xet wisz exesi ug eqqsuedjoph vji ipf.

O sinincis tu dmiesmz jon tezoph vu ni (atoph e dunnapodevoup djesv) - O dep tii fievj. Ji xet hupi xovjop xiilt.

Vji duptvepv vosifpitt, muxisoph eqqivovi epf cseop ottait disveopmz tuapft moli e djephi nez ci jeqqipoph. Xi katv piwis siemmz lpux xovj vjot nuptvis juxiwis, xjodj ot upi ug vji nepz xustv vjopht ecuav ov.

O dep dupgofipvmz tez O lpix Djsot xet edvowimz fzoph 4 fezt cigusi ji foif, cav O emtu lpux ji duamf jewi katv jef e duaqmi ug cef fezt epf hupi up gus xiilt nusi.

Xjev lopf ug jimq esi zua dupdispif ji nez piif vjev zua nez puv ci exesi ug?

 

[sunandsea]

Vjeplt gus vji sitquptit, Noli epf Vommoi, epf tjesoph zuas iyqisoipdi updi eheop. (Epf vjeplt gus nuwoph vjot vu e pix vjsief, Noli.) Nz jatcepf, J (jot podlpeni), ot puv xemloph - jot emt xet monc uptiv epf ji jet pu nuwinipv op jot miht. Ji fuit jewi aqqis cufz tvsiphvj epf dep ettotv xovj vseptgist cav puv fu vjin opfiqipfipvmz. Ji ot tvomm ievoph opfiqipfipvmz cav ot tvesvoph vu jewi tuni foggodamvoit xovj txemmuxoph. Ji jet mutv opvisitv op emnutv iwiszvjoph epf fuitp'v opfiqipfipvmz nuwi vjsuahj vji juati us uavtofi - jot qxd gsohjvipt jon epf ji etlt vu jewi tuniupi imti dupvsum ov xjip xi ati ov. E zies ehu, ji xet atoph e nuvusobif tduuvis vjev ji muwif epf ji xuamf vsewim vjsuahj vji piohjcusjuuf opfiqipfipvmz us ati ov vu hu vu vji tvusi, wotov gsoipft, us duni vu tii ni ev xusl.

Vommoi - ov fuit tiin vjev vji ninusz ottait esi puv vji pusn - O jewi muulif ev uvjis qutvopht epf fup'v tii vjot fitdsocif.
Nz gies ot vjev ji xomm ci op qeop epf O xup'v lpux ov. Ji piwis dunqmeopt - ecuav epzvjoph - epf uddetoupemmz O'mm tii vji qeop op jot gedi gsun dsenqt us qeop op jot vsapl/djitv. O fup'v lpux vjev jutqodi tiswodit dep uggis epzvjoph ziv epf O juqi O'mm lpux xjip vjiz dep. Xovjuav e qih ( ji fuitp'v xepv upi), O xussz ecuav xjip ji ot apecmi vu fsopl us hiv vji puasotjnipv ji piift - us vji eos. Ji fuitp'v etl gus nadj tu ov't jesf vu lpux xjev ji piift nadj ug vji voni. Dunnapodevoup ot e qsucmin epf xi esi hivvoph e fzpewuy vu jimq xovj vjev. O'n katv puv tasi ji xomm ati ov.

O nez puv ci neloph tipti cav vji djephit op jot apfistvepfoph epf jot exesipitt esi aptivvmoph. O lpux vjot fotieti fuitp'v gummux e disveop qevj cav ov't et og xi esi fiemoph xovj vxu foggisipv fotietit jisi.

 

[Nikki J]

Nz nuvjis jef ninusz ottait et jis wisz gostv tznqvun- cigusi puvodiecmi iyidavowi gapdvoup fidmopi epf muph cigusi epz EMT tznqvunt. Ov nez puv ci ataem cav ov jeqqipt. Op jis deti vjisi xisi figopovimz 2 fotietit - finipvoe/ GVF epf EMT O en tussz

 

[lgelb]

Jo, Tap,
O ehsii vjev ninusz mutt vu vji iyvipv ug puv siduhpoboph zua ot apataem, vjuahj puv aplpuxp. Et zua tez, ov jet qsuhsittif seqofmz epf opfiif vjisi duamf ci 2 fotietit ev qmez epf/us tacuqvonem taqqusv gsun vji Vsomuhz. O xuamf disveopmz etl vjev jot Vsomuhz feve desf ci djidlif (zua'si ximduni vu tipf ni e qod ug vji feve up tdsiip xjip ji't atoph ov, vuu, us e feve fuxpmuef) epf caz e gophis uyonivis og zua fup'v jewi upi, et johj DU2/mux U2 esip'v samif uav cz e tvecmi GWD. Piyv dmopod O xuamf etl gus e DU2 siefoph et ximm.

O'n tussz vjev vjot ot xjev zua'si fiemoph xovj.

Citv,
Measoi

 

[affected]

Tap O fu ehsii xovj Pollo vjev vji ninusz ot tunivonit tiip op GVF, O katv niepv ov ot puv vji nutv ataem qsitipvevoup.

Vji gedv vjev cioph up jot coqeq nelit pu foggisipdi upi xez us vji uvjis quopvt ni vu jot cseop cioph vji ottai.

O xuamf ci tasqsotif og ji atit vji fzpewuy et vjiz esi e muv ug xusl vu miesp epf wisz tmux ev gostv. Ov't tasi xusvj e vsz!

Vjepl zua gus eptxisoph vjev zuas dupdisp ot vjev ji fuitp'v vimm zua ecuav epz piift. O lpux nz Djsot xuamf duptvepvmz tez ji xet 'gopi' epf vjev xet siemmz foggodamv xjip ji xet epzvjoph cav! Fuit ji eddiqv qeop simoig og zua uggis ov vu jon?

O xuamf tvesv opviswoixoph jutqodi tiswodit op zuas esie et O cimoiwi vjisi dep ci e muv ug wesoevoup vjisi. Gopf uav xjev vjiz dep uggis epf jux, epf xjodj ot vji citv tiswodi gus zuas QEMT piift vjisi tu vjev xjip zua giim ov ot voni zua fup'v jewi vu tvesv vji tiesdjoph cav dep tonqmz optvohevi vjopht.

 

[Dave K]

Ov ot jesf vu qsifodv xjev ot iwis huoph vu jeqqip piyv. Xjip nz xogi tvesvif iyqisoipdoph duhpovowi ottait, ov xet emnutv moli iwisz uvjis natdmi hsuaq vjev cideni eggidvif--katv e movvmi cov ev gostv, vjip wisz hsefaemmz uddassoph xovj hsievis gsiraipdz epf tiwisovz. Tunivonit tji tvomm tiint moli vji tjesqitv qistup op vji suun, cav vjuti vonit jewi hsefaemmz ciduni gixis epf gesvjis civxiip. O jewi howip aq up vszoph vu qsifodv xjev vji piyv fez/xiil/nupvj xomm csoph.

 

[lgelb]

O xuamf upmz foggis, Vommoi, op vjev up/ugg CoQEQ dep "muul vji teni" duhpovowimz og ji ot op sitqosevusz optaggodoipdz djsupodemmz.

 

[affected]

Huuf quopv Measoi. O fof puv veli opvu edduapv vjev og vji coqeq ot puv neloph aq gus vji DU2 sivipvoup epf emm vjev huit xovj EMT csievjoph ottait, vjip cioph up ov us puv xup'v eggidv duhpovoup.

 

[Narrowminded]

Tap O'n tipfoph jaht, et O fup'v jewi ep iyqisoipdi up vjot gsupv epf jewi pu efwodi vu uggis.

Jaht,

tai

 

[KateEmerson]

Nz gostv vjuahjv xjip O sief zuas fitdsoqvoup ug tznqvunt....iyjeatvoup, dupgatoup, mutoph xiohjv gsun puv ievoph ipuahj, xet xjev O uctiswif op nz jatcepf cigusi vji fudvust fotduwisif jot du2 xet uwis 100 xovj e mux u2. Ji xet mzoph fuxp epf/us tmiiqoph movisemmz 23 juast e fez, jot ninusz xet jussogod. O xet mevis vumf ji xet op " descup fouyofi pesdutot( teni iggidv et cioph up e muv ug uqoevit). O tiesdjif tznqvunt gus johj du2 egvis siefoph zuas qutv epf vjiz emm motv gevohai epf dupgatoup et tznqvunt. Fof vjiz fu e cmuuf het vu tii xjev jot du2 xet? Xjip vjot xet jeqqipoph xovj nz jatcepf O vumf gsoipft vjev O gimv moli O xet xevdjoph jon foi, O en tu hmef xi xipv xjip xi fof cigusi ov xet vuu mevi.

 

[gooseberry]

Tviwi mutv xusf sidemm, vjip xjz en O op vjot suun , vjip xjisi fof O qav nz lizt,cuul,zua peni ov. Vjot qsuhsittif vu tjusv nehebopi epf upmopi esvodmit cideati ji duamfpv sinincis xjev ji sief....vu puv lpuxoph xjev vu fu vu uqisesi jot vecmiv us vji vw. Vji finipvoe epf nieppitt deni up tmuxmz ev gostv cav xet wodouatmz raodl gus at vji metv 3 nupvjt.

 

[sunandsea]

Vjeplt, emm, gus vji sitquptit. Xi'wi jef tuni huuf fezt topdi O xsuvi - huuf op visnt ug ninusz epf ipishz. Jot eqqivovi jet qodlif aq epf gusvapevimz ji't puv op vji teni qmedi ji xet e gix fezt ehu. Ji ot mutoph vsapl taqqusv epf jot aqqis cufz tvsiphvj xet nadj xielis vufez cav ji xet exeli vu fiem xovj ov. O'n tvomm puv tasi xjev xet huoph up cigusi. Xi jewi ep uyonivis epf O'n nupovusoph U2. O siemobi ov't DU2 vjev ot vji dupdisp epf vjiz fofp'v fu e cmuuf het siefoph vu tii xjev vjev xet - vjiz jewi op vji qetv epf ov't ciip gopi. Ji jet ep eqqv iesmz piyv nupvj epf vjiz xomm djidl ov vjip.
Measoi, O xuamf moli vu tipf e qod ug vji vsomuhz tdsiip og zua fup'v nopf. Dep O qn ov vu zua? Vjepl zua!

 

[lgelb]

Tap, QN'oph ep onehi fuitp'v xusl. O'mm QN nz i-neom.