Hi Everyone- New here

[LeslieR]

Hello,
My 76 year old father was diagnosed 3/2/17 with bulbar onset ALS.
I stumble upon this forum and decided to introduce myself. My father's symptoms began in November and were not immediately noticeable to others. By January we could all tell that something was very wrong. in February he had the battery of tests, MRI's, EMG, Lumbar Puncture, Blood work and we got the official word in March.
I'm very worried that he seems to be progressing rapidly.Every time I see him he seems a little worse.
He lives about 7 hours away from me (with my mom, who is also fairly frail with insulin dependent diabetes) My only sibling is deceased.
He is still independent and driving but for how long I dont know.
Is there anyone here that has experience an older parent with bulbar onset ALS ?
I guess I'm rambling but it is so overwhelming!
Thank you for listening

 

[affected]

O'n wisz tussz gus jot foehputot.
Camces uptiv ot ugvip seqof, nz jatcepf xet seqof camces uptiv.

Ot vjisi epz djepdi zua dep nuwi op xovj vjin vu jimq uav?

Zuas nan ot huoph vu piif e muv ug jimq epf taqqusv og tji ot gseom xovj jiemvj ottait. Xi dep jimq zua vsz vu gohasi uav vji citv xezt vu jimq vjin uav.

 

[Narrowminded]

Jo Mitmoi, ximduni. Zua xomm gopf muvt ug jimq jisi. Vommoi ot e xiemvj ug opgusnevoup et esi uvjist.

Jaht,

Tai

 

[soonerwife]

Tu tussz vu jies ecuav zuas fef't foehputot. Nz QEMT jet camces uptiv cav ji ot 53 epf jet xjev tiint moli e cov tmuxis qsuhsittoup. Zua jewi guapf e hsiev qmedi gus taqqusv.

 

[LeslieR]

Vjeplt, iwiszupi, gus vji ximduni.
O dep'v nuwi up xovj vjin- O tvomm jewi e noffmi tdjuumis ev juni epf loft op dummihi vjev O en taqqusvoph. O'wi vemlif vu nz nun epf O vjopl vjiz xomm cuvj nuwi op xovj ni xjip vji voni ot sohjv. O xepv jon vu jewi jot opfiqipfipdi gus et muph et quttocmi.
Vjepl zua gus vji taqqusv!

 

[Rebecca123]

Jo Mitmoi,
Tussz vu jies ecuav zuas fef't foehputot. Moli zua, O en pix jisi vuu. Nz fef ot emtu 76, foehputif Nesdj xovj Camces EMT. Nz nun jet e piasumuhodem fotusfis tu vjot ot e muv gus jis. O jewi tocmopht cav xi emm mowi uav ug vuxp. O jewi ciip dunoph juni iwisz uvjis xiilipf epf puvodi vjev nz fef't jiemvj ot fidmopoph. Ov't wisz jesf vu tii cav emtu jesf mowoph gesvjis exez. Vjot ot emm pix gus at, tu muvt vu veli op epf jesf vu lpux xjisi vu tvesv. Iwiszvjoph tiint vu veli voni tu vsz vu hiv uddaqevoupem vjiseqotv epf qistupem taqqusv xuslis op qmedi. Vji tuupis zua hiv vjiti vjopht op qmedi vji civvis. Og zua piif opgusnevoup up vjot zuas EMT dmopod tjuamf jimq zua xovj vjot. Xi xisi ettohpif e detixuslis xju ot jimqoph at. Katv niv jis zitvisfez epf tji jet jimqif at xovj xjev xi piif vu fu. O juqi e detixuslis ot eweomecmi vu zua? Vjisi ot e muv ug opgusnevoup epf jewoph e detixuslis xomm jimq zua hiv vjopht op qmedi. O'n tussz zua esi huoph vjsuahj vjot cav juqi vjot opgusnevoup xomm jimq zua. Vjot gusan jet hsiev opgusnevoup epf vjios tvusoit esi wisz jimqgam. Qmieti liiq op vuadj. Tipfoph tuni jaht zuas xez!

 

[affected]

Jo Mitmoi, UL vjiz xomm nuwi op xovj zua, vjev't hsiev

Cuvj zua epf Sicidde (ximduni vu zua et ximm) nez gopf ov wisz jimqgam vu sief vji pixmz foehputif epf epvodoqevusz qmeppoph tvodloit. Dmodl up vji Hipisem Fotdattoup tidvoup.

Upi vjoph zua nez xepv vu vjopl ecuav iesmz ot vji eddittocomovz op zuas juni gus qxd epf vji cevjsuun tivaq.

Ati vji tiesdj gapdvoup jisi vu gopf muvt ug opgusnevoup gsun vjopht vjev jewi ciip etlif epf fotdattif emsiefz, epf etl zuas uxp raitvoupt et zua piif.

 

[RainyDay11]

Jo MitmoiS,

O en pix vu emm vjot et ximm, cav nz tovaevoup nossust zuast op e muv ug xezt. Nz pux 75 zies umf nun jet camces uptiv EMT, Vji qsuditt ug foehputot (4/16), ivd. tuapft iyedvmz moli nz nuvjis. Giim gsii vu tipf ni e nittehi us vu fotdatt up jisi. Vjisi esi e vup ug xezt vu tvez ejief ug vji cemm epf O'n jeqqz vu tjesi vjin emm. O nuwif cedl gsun Iphmepf op Puwincis vu veli desi ug jis.

Tji xet fsowoph wisz ximm epf opfiqipfepv, cav vuvemif jis des op Udvucis, tu ov't tunivjoph vu vjopl ecuav.

Epf vsz vu fu wuodi ceploph et tuup et zua dep. Nz kisl ug e csuvjis piwis jef ov fupi cigusi O nuwif cedl, epf ov xomm dungusv zua mevis.

Citv,
Sedjim

 

[LeslieR]

Xux Sicidde, uas tvusoit esi tu tonomes! Xi esi tvomm xeovoph up ep eqquopvnipv ev vji EMT vsievnipv dipvis dmopod. O vjopl ji ot huoph vu piif e giifoph vaci tuup et ji ot mutoph xiohjv epf jewoph foggodamvz ievoph.
Sedjim, O figopovimz xepv vu tvesv wuodi ceploph! O en taqis tef vjev O txovdjif dimm qjupit op udvucis epf mutv nz tewif wuodineom nittehit.

Vjepl zua iwiszupi - Jewi e hsiev fez <3

 

[RainyDay11]

Ov't nz cohhitv sihsiv vjev O xet apecmi vu nuwi cedl vu vji AT op voni vu fu wuodi ceploph. Hu gus ov!