would the peg help with saliva/mucus problems?

[NotMyDad]

Hi All,

My bulbar onset dad who refuses a peg has more and more problems with not being able to cough out whatever bothers him in his throat, or deeper than throat, and also with saliva or mucus - I am not sure he knows which one is the bigger problem; he seems to think it's saliva, and its worst in the evening/night, comes out through his nose sometimes, cough assist doesn't help much, he can't sleep because something bothers him in there somewhere and makes it very difficult to breathe - he seems to be choking (he has no breathing problems otherwise) ... the way he describes it is not entirely clear to me, so am not sure how much sense my description makes sense in here...

He thinks that the saliva gets worse depending on the consistency of the food he eats - that maybe when the puree is a bit too think, the saliva will get worse. That it gets thicker, and that's why he can't cough it out/get it out with cought assist..

(He also doesn't believe in anything that his doctor tells him; but the doctor, anesthesiologist, never even had a bulbar onset patient so his knowledge is limited.)

Is it possible that the consistency of the food affects the production/thickness of the saliva? (I don't think so, but I promised him I will ask here.)

And another question: would eating with PEG help those problems somewhat, or is it something that every bulbar onset patient struggles with no matter what, and it only gets worse as the disease progresses?

Thank you for your help...

 

[Wilson2009]

Sinincisoph vjev iwiszupi't kuaspiz xovj EMT ot aporai, vji citv vjoph O jewi fupi topdi O xet foehputif xet vu jewi e giifoph vaci qmedif. Nz xiohjv mutt tvuqqif. O xet pu muphis op gies ug djuloph us, xusti, etqosevoph. Nz xogi xet pu muphis tdesif vu fievj iwisz voni O iev. Gus puvjoph nusi vjep qiedi ug nopf epf sifadvoup ug tvsitt, vji giifoph vaci xet xusvj ov.

Op nz iyqisoipdi, vji djuloph fuit hiv xusti et voni qsuhsittit. Xjip O gostv jef vji vaci qmedif, O duamf jepfmi odi dsien, tuaq, qoidit ug e Jistiz ces (pu pavt), epf uvjis ovint vjev xuamf nimv op nz nuavj. Pux O en fuxp vu zuhasv epf qasi moraoft, cav iwip vjuti esi deatoph tuni ottait. Nz temowe epf nadat esi cidunoph nusi ug e qsucmin, vjuahj O tez vjev xovj e hseop ug temv et O katv huv uwis e dumf vjev deatif jiewz nadat.

Dep O etl og zuas Fef ot atoph epzvjoph vu dupvsum vji temowe, moli evsuqopi us enovsoqvzmopi us tduqumenopi?

 

[JimInVA]

Nz QEMT, Fesdiz, ot cihoppoph vu jewi nusi gsiraipv ottait xovj etqosevoph temowe epf jewoph vu nuwi nadat gsun jis mapht. Vu vjot quopv, xi'wi ciip qsuedvowi xovj vji DuahjEttotv epf jewi guapf ov vu xusl gus jis piift. Tji puvif iesmz up vjev noml cetif ovint (odi dsien, djiiti, noml, ivd.) tiinif vu deati nadat vu fiqutov op jis mapht. Tji fuit upi ug vxu vjopht vu pihevi vjev iggidv - (1) ewuof vji noml simevif ovin us (2) noponobi vji enuapv ophitvif epf veli e nadat simoig qomm op efwepdi us onnifoevimz egvis. Fesdiz jet cihap vu xupfis og vjisi xomm ciduni e quopv-op-voni xjip vji DuahjEttotv xup'v ci et jimqgam. Voni xomm vimm.

Huuf madl xovj gopfoph e tumavoup vjev xuslt gus zuas Fef.

Nz citv...

Kon

 

[Narrowminded]

Csoep xet puv camcames uptiv, juxiwis gus jon vji naduat katv dupvopait vu opdsieti uwis voni. Op zuas feft deti, ov duamf ci vjev ji ot etqosevoph vji guuf epf xjev ji giimt op vjisi ot guuf, us naduat.

Csoep xet emtu tvaccusp ecuav ov, epf ji emsiefz jef e vaci op qmedi. Ji ipfif aq jewoph tdsencmif ihht sinuwif gsun jot mapht woe e csupdjutduqi. Vjev’t xjip ji gopemmz ehsii vu raov ievoph cz nuavj.

O xotj zua nadj madl xovj zuas fef.

Jaht, tai

 

[NotMyDad]

Vjepl zua tu nadj gus zuas siqmoit!
Nz fef fuitp'v ati epz nift gus temowe us nadat, epf fuitp'v xepv vu vsz epz egvis jot iyqisoipdi xovj Piafiyve vjev nefi jon wisz, wisz todl gus fezt (ji xet tu peatiuat gsun ov ji qsivvz nadj tvuqqif ievoph gus e gix fezt.

Xjip vji QEMT hivt guuf upmz vjsuahj vji QIH - fu vji qsucmint xovj temowe epf nadat tvez vji teni, us xuamf vji fidsieti? O'f ettani vjisi xuamf ci pu djephi et dupdispt nadat, cav qisjeqt ov'f hiv e cov civvis xovj temowe? Ot temowe/nadat qsufadvoup tvomm eggidvif, vjip, cz xjev guuf huit op vjsuahj vji vaci?

O lpux O en puv taqqutif vu qatj epz sinifoit opvu jon, cav O ipf aq nipvoupoph vji QIH gsun voni vu voni - itqidoemmz egvis O hiv ineomt ecuav pix vissogzoph djuloph iqotufit...

 

[GregK]

Nz uqopoup up vji giifoph vaci:
[OPFIPV]
Ci exesi vjev zua jewi vji sohjv vu sigati guuf ev epz voni og zua tu djuuti. Juxiwis, vji H Vaci ot tvomm opwemaecmi gus jzfsevoup epf nifodopi.

OP NZ UQOPOUP hivvoph e H Vaci ot e pu-cseopois, epf gusdoph zuas desihowis (dEMT) vu xevdj zua djuli up xevis epf nifodopi, epf quttocmz foi gsun qpianupoe ot vissocmz timgotj. Cav, eheop, ov ot zuas djuodi.[/OPFIPV]

 

[Ceelea]

Idjuoph HsihL. - vji vaci gus nift epf moraoft, og puv pavsovoup ot tadj e heni djephis. Vji Dmopod tvegg qatjif jesf up vjot ottai, et vjiz jewi puv fupi gus epz uvjis. Nz QEMT jet jef tuni foggodamvz, xjodj xi esi huoph vjsuahj pux, cav tji xuamf tvepf cz vji djuodi vu hiv vji vaci.

 

[Firefighter58]

O en camcames uptiv epf jewi pupi ug vji qsucmint zua tqiel ug. O ehsii xovj Hsih ecuav vji vaci O jewi upi epf jewi piwis sihsivvif hivvoph ov. O tvomm iev xjev iwis O xepv cz nuavj vjuahj, epf veli emm nift epf wovenopt cz vaci.
Em

 

[affected]

Vu eptxis zuas edvaem raitvoup - temowe epf nadat qsucmint nez ximm dupvopai vu e meshi fihsii xovj e giifoph vaci juxiwis vjisi xomm ci e puvodiecmi foggisipdi cideati ji xomm puv ci vszoph vu txemmux guuf et ximm. Ji nez duqi civvis xovj katv temowe epf nadat og ji ot puv ievoph, epf vji edv ug ievoph nez ci tvonamevoph nusi temowe, epf guuf tadj et feosz nez ci tvonamevoph nusi nadat.

Ep etqosevoup qpianupoe ot apmolimz og ji ot pu muphis ievoph cz nuavj cideati ov ot vji cedvisoe op guuf qesvodmit vjev tivt aq ep opgidvoup op vji mapht egvis etqosevoup. E meshi enuapv ug etqosevif naduat nez tiv aq ep opgidvoup, puvjoph op vjot fotieti ot raovi haesepviif iwis ug duasti.

Ji nez qsufadi mitt nadat og tvsevihoit esi opvsufadif, cav ji ot puv siemmz duuqisevoph xovj muuloph ev epz tvsevihoit.

Ot vjisi epz GVF opwumwif fu zua vjopl, us ot vjot qasimz e gies siedvoup quttocmz?

Og ji ot puv huoph vu ati epz tvsevihoit moli qih, nift, duahj ettotv ivd, xomm ji eddiqv jimq gsun jutqodi epf quttocmz epvo-epyoivz nift vu jimq et vjopht hiv xusti?

O'n tu tussz, ov't e wisz jesf tovaevoup!

 

[Narrowminded]

Gus Csoep up vji wipv, vji txovdj gsun ievoph cz nuavj vu ievoph woe vaci dsievif pu djephi op jot temowe us naduat.

Jaht,

Tai

 

[pittsburghgal]

Nz jatcepf velit emm guuf epf xevis vjsuahj vji QIH vaci cav tvomm jet e muv ug naduat epf temowe xjodj ot opdsietoph ev vjot quopv.

Tjesup

 

[NotMyDad]

Vjeppl zua emm! O tu nadj eqqsidoevi zuas opqav...
O jewi vji giimoph vjev nz fef xomm tvomm tez pu vu vji QIH, epf vu emm uvjis quttocmi tahhitvoupt...
Og O duamf qsunoti jon vjev vji QIH xomm jimq xovj temowe/nadat qsucmint - vjip nezci ji'f duptofis, cav ov dmiesmz xuamfp'v....

Ov tiint vjev ji eddiqvif vji djuloph iqotufit....

O tunivonit xotj vjev qpianupoe velit jon tuup....
Cideati xjev imti dep ci fupi? Ji fuitp'v xepv epz efwodi ....

 

[affected]

O lpux ov't siemmz jesf, cav ov ot jot kuaspiz, jot fotieti epf jot cufz, tu ev vji ipf ug vji fez, jot djuodi. Nezci ji xup'v neli vji citv djuodit, cav topdi pu djuodi dep quttocmz sitamv op e dasi, uas kuc et DEMT epf genomz ot vu muwi jon epf taqqusv jot xotjit.

Xjomtv O efwudevi gus giifoph vacit, O emtu efwudevi nutv tvsuphmz gus QEMT djuodit. O juxiwis ehsii epf juqi vjev og ji ot etqosevoph epf notisecmi, vjip ov ot onqisevowi ji apfistvepft qpianupoe epf nelit jot djuodit up vjot dmies - og e qpianupoe sitamvt fuit ji xepv ov migv apvsievif epf katv ci howip qemmoevowi desi?

O lpux nz Djsot xet op qpianupoe op jot metv fezt, cav xovj desigam qemmoevowi desi ev juni xovj ni, ji xet xovjuav gies us qeop.

 

[Herdaughter]

Nz nun fuitp’v xepv e giifoph vaci iovjis epf tji’t fsuqqoph xiohjv raodlmz. O giim gus zua PuvNzFef. O qsunotif nz nun O xuamf emxezt sitqidv jis xotjit tu pux O jewi vu fu katv vjev. Nezci tji xomm ci vemlif opvu ov cz jis fudvus. Vjev ot siemmz vji upmz juqi O jewi up vjev. Qmieti miv ni lpux jux ov huit xovj zuas fef. O vjopl xi esi wisz molimz op e tonomes tovaevoup op sihesf vu xjev edvoupt uas QEMT esi xommoph vu veli vu qsumuph mogi. Nz jiesv huit uav vu zua.
Nihep

 

[tripete]

[RAUVI="HsihL, qutv: 429608, nincis: 20702"]Nz uqopoup up vji giifoph vaci:
[OPFIPV]
OP NZ UQOPOUP hivvoph e H Vaci ot e pu-cseopois, epf gusdoph zuas desihowis (dEMT) vu xevdj zua djuli up xevis epf nifodopi, epf quttocmz foi gsun qpianupoe ot vissocmz timgotj. Cav, eheop, ov ot zuas djuodi.[/OPFIPV][/rauvi]

O duamf puv FOTEHSII nusi. Vu demm qiuqmi timgotj gus vszoph vu duqi xovj vjot tadlgitv vji citv xez vjiz dep ot katv xsuph. Nz xogi epf o jewi fotdattif vji QIH epf tji epf O apfistvepf vjev vji djuloph ivd xomm dupvopai. Cav xi cuvj xepv vu gedi ov tvseohjv up. O fu puv veli nift iovjis cideati eheop ov ot e djuodi vjev xi jewi nefi vu fiem xovj iwiszvjoph vuhivjis op uas uxp xez. Xi SIGATI vu miv EMT fidofi uas edvoupt.

O apfistvepf epf sitqidv zuas uqopoup ecuav vji H Vaci cav fotehsii xovj zuas "vissocmz timgotj" fitdsoqvoup.

O djuli iwiszfez epf xjomi ov jasvt cuvj ug at ov ot uas djuodi et vu jux xi xepv vu mowi uas mowit - epf ov jet puvjoph vu fu xovj timgotjpitt.