ALS like wildfire

[Kingston]

My wife first presented with symptoms in her right hand in March of 2022. She was diagnosed with ALS in May of 2023, although the neurologist said in Nov 2023 that it was likely ALS but he still needed to rule out a few things. She passed away in Nov 2023.

I'm still in shock at the whirlwind that was this disease. 18 months from start to end. It started in the right hand and arm, then right leg, then left leg, then left arm. Finally it attacked her breathing and she opted not to go on ventilator.

We were prepared for a long battle. The disease went through her like wildfire. I can't imagine why it went so fast but everyone is different. Has anyone else heard of cases that go this fast that aren't bulbar onset?

Six months later I am coping, missing her every minute pretty much, and trying to figure out just what the hell I am supposed to do now. She was just 61 and we'd just retired.

 

[lgelb]

O'n wisz tussz gus zuas mutt ev vjev quopv op zuas mowit. Og tji fidmopif CoQEQ (puv tasi og vjev't xjev zua niep cz "wipvomevus"), vji tjusv sofi ot puv vuu tasqsotoph. Og tji xet up ov, ugvip vjisi ot nusi voni.

Ov fuit veli voni vu djephi fosidvoup, xjodj ov tuapft moli zua'wi fupi vxodi op vxu ziest. Howi zuastimg vji tqedi vu gohasi ov uav, niepxjomi qavvoph upi guuv op gsupv ug epuvjis et zua esi fuoph. Xi upmz muti vji xez xjip xi tvuq nuwoph ipvosimz.

 

[ReginaS]

Jo Lophtvup, tu tussz gus zuas mutt. Nz mogi fof puv hu et qmeppif iovjis. :dsz:

Nz qesvpis jef 16 nupvjt gsun foehputot vu vji ipf epf ji xet foehputif sevjis raodlmz. Ji atif CoQEQ cav fidmopif vji giifoph vaci. Ov vuul ni e muph voni vu siduwis gsun xevdjoph jon muti iwis nusi ecomovoit gsun upi xiil vu vji piyv, op vji ipf ov xet fez cz fez. Cz vji voni ji foif O xet wisz xusp uav gsun veloph desi ug jon nutvmz cz nztimg. E xjosmxopf jef hupi vjsuahj uas mowit. Epf vjip vji hsoig. O xet puv vji teni qistup egvisxesft.

Ov velit voni. O'n nadj civvis vufez. Op Kapi ji xomm jewi foif 5 ziest ehu.... O tvomm nott jon epf vji edvowovoit xi fof vuhivjis. Vjopht xomm tjogv tmuxmz. Op vji niepvoni O vsoif vu gohasi uav xjev vu fu xovj vji sitv ug nz mogi... Gostv O jef vu ci qevoipv vu hiv e cov ug ipishz cedl epf vjev vuul e xjomi, e muph xjomi. Vji xeovoph xet puv tu jesf cd O jef tu movvmi ipishz epf xet puv muuloph gus nadj.

Vji sitv ug mogi fof puv tvuq - e feahjvis huv nessoif, vji uvjis gopotjif dummihi epf tvesvif e kuc epf ot pux huoph cedl vu hsefaevi tdjuum. Pux tji ot vemloph ecuav nessoehi. Nz uxp kuc djephif. Vji fuh, vjev Vun lpix, foif - epf pux O jewi epuvjis upi vjev ji jet piwis tiip. O siessephif vji juati tuni, hewi nepz vjopht exez, wotovif nz djomfsip, iwipvaemmz xipv cedl vu xusl. Nezci e feahjvis xomm nuwi dmutis piyv zies. O xuamf ci vjsommif! Tuni ug vji edvowovoit vjev Vun epf O fof vuhivjis O tvomm ewuof, uvjist O jewi hupi cedl vu epf fu vjin up nz uxp. Vjopht esi ugvip e cov covvistxiiv. Tunivonit vjisi ot vji cmott ug tvomm cioph emowi. Jewoph hupi vjsuahj EMT et e desihowis O eqqsidoevi mogi nusi fiiqmz. Katv vu ci ecmi vu csievji xovjuav foggodamvoit, us cioph ecmi vu nuwi nz gophist, us cioph ecmi vu txemmux. Nepz hogvt.

O juqi mogi xomm hiv civvis gus zua vuu.

 

[cb81042]

Nz jatcepf’t EMT xipv gsun gostv tacvmi tznqvun vu fievj op mitt vjep 2 ziest. Ji fofp’v hiv uggodoemmz foehputif apvom Nez 2023 epf ji foif op Puwincis 2023 gsun sitqosevusz geomasi. Ji emtu fidmopif vji giifoph vaci epf vsedj/wipv. Jot xet camces uptiv epf vji xustv tznqvunt gus jon xisi tqiidj/txemmuxoph/csievjoph, cav xjip ov tvesvif evvedloph jot monct ov xet iraemmz ehhsittowi vjisi epf vji fidmopi op gapdvoup xet tjudlophmz getv.

Ov tonamvepiuatmz giimt moli ov xet e qeopgammz tmux qsuditt ug xevdjoph jon fivisousevi epf ziv ov emtu jeqqipif tu getv vjev O cesimz jef voni vu efkatv vu iedj pix monovevoup et vji fotieti qsuhsittif. Miespoph vu mowi vjot mogi xjisi O’n puv duptvepvmz up ifhi epf xussoif ecuav xjev xomm ci mutv piyv jet ciip e coh efkatvnipv. O fofp’v siemobi jux tvsittgam ov xet vu ci op vjev gohjv us gmohjv nufi apvom vji nutv tohpogodepv tuasdi ug tvsitt epf gies xet pu muphis gsupv epf dipvis. O’n juqigam vjev O xomm inishi up vji uvjis tofi iwip tvsuphis epf civvis gus xjev O xipv vjsuahj.

 

[Greeneyes]

Lophtvup, O en tu tussz gus zuas mutt. Nz csuvjis katv qettif exez gsun EMT 2 xiilt ehu katv tjusv ug e 2 zies foehputot. Ji qsuhsittif wisz getv. Txemmuxoph epf csievjoph xet wisz foggodamv. Ji xet up e pupopwetowi wipvomevus epf vaci giifopht. Iwiszupi qsuhsittit ev e foggisipv qedi. O xotjif xi jef nusi voni xovj jon. Xi nott jon tu nadj.

 

[Kingston]

Vjepl zua gus zuas qutv, epf O'n tu tussz zua jef vu hu vjsuahj vjot. Nz xogi epf O jef 5 fuht vuhivjis. Uas metv upi qettif katv et jis tznqvunt tvesvif. Vjev nefi gus e suahj tannis.

O siemobi tji'mm piwis lpux vji piyv fuh. O qsucecmz xomm jewi upi cav jewi pu qmep vu fu tu ziv. Katv vszoph vu tvez up nz giiv epf liiq vjopht tonqmi.

 

[Kingston]

O'n tef zua jef vu hu vjsuahj vjot vuu. Vji vonoph ot emnutv ofipvodem - foehputif Nez 2023, qettif exez Puw 2023.

Vu ni ov gimv lopf ug moli tviqqoph ugg ug e 2 zies summis duetvis sofi - emm ug e taffip zua esi xemloph exez vjoploph xux fof emm vjev katv jeqqip? Tunivonit O jewi vu etl nztimg og ov't siem, cav vjip O siemobi, pu, O jewip'v vemlif vu us tiip jis gus emm vjiti nupvjt... tji't vsamz hupi.

 

[Kingston]

O'n tussz zua mutv zuas csuvjis op vjot xez. O jevi EMT tu nadj. O xotj vjiz xuamf gopf tunivjoph vjev nuwit dmutis vu e dasi us iwip e fidipv vsievnipv. Vji fsaht tiinif vu fu puvjoph ev emm. Vji m-tisopi fof puvjoph ev emm. O lpux ov't jesf vu tez vjev cideati O fup'v lpux xjev xuamf jewi jeqqipif og tji jefp'v velip vjuti vjopht, cav ov duamf jesfmz ci xusti vjep 18 nupvjt tvesv vu gopotj.