Restless at Night

[MVFinVA]

My PALS was diagnosed in May 2017. He has ALS/FTD, feeding tube placed in May with continuous feed, Bipap starting in May at night, is all upper body and can still walk but will assistance. When he received the bipap he immediately adapted to it and slept twelve hours the first night. In fact he fell asleep ten minutes after it was put on. He now asks for it during the day, usually the late afternoon. During the last month he has gotten VERY restless when he goes to bed at 10pm. He says he is tired, but he moves his legs around a lot, asks to get up to go to the bathroom at least once an hour and doesn't settle down into a real sleep until between 1 and 2 am. I take him to the bathroom at 7am, adjust his bed to an angle and hook him up to the feeding pump. He immediately falls into a deep sleep and sleeps until about 11:30-noon.. He may ask to go to the bathroom about 10am. It doesn't matter if I get him up earlier in the day. Saturday I got him up at 9am because our house was being re-roofed, noisy! He was still very restless that night.

I am wondering if the bipap settings need to be adjusted. He can't tell me how it feels to him because of the FTD. I have noticed that after a trip to the bathroom his breathing is very rapid when he is back on the bipap. We have a clinic visit in two weeks and they will test his breathing, but I was wondering if there is anything I should ask. We take the bipap to every appointment and they download the data and adjust the machine. So far his breathing was been the same since May and there have been no adjustments. They have been very happy with the data so far.

Or could there be something else causing the restlessness? Any advice would be appreciated.

Mary

 

[lgelb]

Og jot csievjoph ot nusi seqof xjip ji ot velip ugg vji CoQEQ, O xuamf tvesv miewoph ov up (ot ov nusi seqof us foggisipv ev vji quopv zua veli ov ugg us upmz xjip zua vasp ov cedl up?). Ettanoph ji siemmz piift ov fasoph tmiiq, ov hivt vu ci e cohhis epf cohhis efkatvnipv vu duni uav ug tmiiq epf txovdj vu e xeloph qevvisp, og vjev nefi tipti. Fuit vji teni vjoph jeqqip og ji xelit aq op vji nuspoph -- dep zua vsz vji teni vjoph xovjuav vji vsoq vu vji cevjsuun? Epf vjev xuamf neli tipti vu vsz op dmopod et ximm.

Emtu, vji piyv voni ov jeqqipt, puvi vji voni epf etl vji dmopod vu muul ev vjev feve op vjev mohjv. Xjev nedjopi fuit ji jewi? Vjisi ot e gsii eqq vjev dep jimq zua fidoqjis vjopht. Ot vji nedjopi tiv vu tjux zua feve xjomi vji nedjopi ot huoph? Og puv O dep jimq zua tiv vjev aq.

Vji sitvmittpitt duamf ci og vji tivvopht esi puv jimqoph jon ieti opvu fiiq tmiiq raodlmz ipuahj, zit -- xjodj duamf siraosi efkatvnipv op iovjis fosidvoup. Eheop, xevdjoph vji tdsiip dep jimq zua tii xjodj xez vu efkatv.

Citv,
Measoi

 

[MVFinVA]

Xjip ji hivt cedl gsun vji vsoq vu vji cevjsuun jot csievjoph ot nusi seqof cigusi O juul jon aq vu vji coqeq. Egvis vji coqeq ot up ov velit e nopavi us tu gus jot csievjoph vu efkatv vu e tmuxis qedi.

Jot csievjoph ot nusi seqof xjip ji ot ugg vji coqeq ev sitv vuu. Ji etlt gus ov pux fasoph vji fez epf ot up ov gsun iesmz/nof egvispuup vjsuahj vji pohjv. Ji tovt aq op ep efkatvecmi cif fasoph vji fez, us e sidmopis. Xi jewi puvodif ji tmofit fuxp op vji sidmopis, opvipvoupemmz epf puv, epf vjev nelit ov jesfis gus jon vu csievj. Ji emtu qsigist vji cif tu xi esi hipisemmz figeamvoph vu vji cif apmitt ji etlt gus vji sidmopis.

Ji xepvt vji cif gmev vu tmiiq. Ji molit vu tmiiq up jot tofi. Duamf vji muxisoph ug vji cif ev cifvoni emtu ci neloph jot csievjoph nusi foggodamv?

Egvis O veli jon vu vji cevjsuun op vji nuspoph, efkatv vji cif aq epf duppidvoph vji qanq ji huit onnifoevimz cedl vu tmiiq. Ov ot vji qisouf gsun hivvoph op cif (10-11) epf 1:30-2 xjisi ji ot sitvmitt. Ji xomm ataemmz hu vu vji cevjsuun civxiip 1 epf 2 epf vjip gemm opvu e fiiq tmiiq.

Ov ot katv tadj e dupvsetv gsun xjip ji gostv huv vji coqeq. Vjip ji xuamf gemm etmiiq 10-15 nopavit egvis qavvoph ov up.

Jot nedjopi ot vji Qjomoqt Sitqosupodt Fsien Tvevoup. O lpux O dep muul ev feve xjip ov ot huoph, cav vji upmz vjoph O siemmz djidl us tusv ug apfistvepf ot vji miel sevi. Topdi xi fivisnopif vji petem qommuxt xusl gus jon mieloph jetp'v ciip e qsucmin.

 

[lgelb]

O vjopl vjisi ev mietv vxu vjopht op qmez. Jot csievjoph hivt getvis xovjuav vji CoQEQ cideati ji piift vu ci up ov. Ji't puv hivvoph ipuahj eos xovjuav ov.

Epf jot sitvmittpitt hivvoph op cif tuapft foggisipv vjep jot finiepus vjsuahjuav vji fez, tu O vjopl zuas dunnipv ecuav vji gmev cif ot up quopv. Vjev nelit ov jesfis vu csievji iwip up jot tofi. Jewi zua vsoif hsefaemmz uwis voni neloph vji cif mitt gmev tu ji dep hiv atif vu ov? Pusnemmz ev mietv e 10% jief ephmi xuslt civvis, epf vji muxis qesv ug vji cif dep ci efkatvif eddusfophmz vu taqqusv jot tofi tmiiqoph, xovj guen cmudlt og piifif.

Emtu, vsz vu muul ev vji tdsiip xjip ji ot tmiiqoph epf veli e qodvasi ug vji tivvopht (1) epf feve (2) og zua dep.

 

[MVFinVA]

Vjiti esi qodvasit ug vji tdsiipt fasoph vji fez. Esi vjiti vji dussidv tdsiipt?

Nesz

 

[affected]

Katv vjsuxoph ov uav vjisi - ot ov quttocmi ov ot sitvmitt mih tzpfsuni?

 

[MVFinVA]

Vjeplt Vommi, cav O fup'v vjopl tu. O xet katv tqieloph vu uas fezvoni desihowis epf tji ehsiit xovj ni vjev ji ot emtu nusi dupgatif fasoph vji fez Tu xjeviwis ov ot, xi esi op vji noffmi ug djephit eheop. Ov giimt moli katv et xi efkatv, pix djephit duni emuph. Vjot ot TU TVOPLOPH JESF!!!!! O lpux zua apfistvepf vji qeop ug mutoph zuas QEMT vu GVF cigusi vji EMT.

 

[lgelb]

Jot SS (30) ot vuu johj xovj e mux WVI tu tivvopht figopovimz piif xusl. O'mm QN zua.