My Heart aches.

[Allison Ferraro]

Hi.

I am new at this and my heart aches for everyone. MY husband Joe(31) went to the Dr in November 07 for falling down while changing. There were other things leading up to that, he was falling at work,he was very tired, and he was having trouble with dressing(buttons,and tying). This all was going on since the summer, but we just kept putting it off b.c we had just moved into a new house and he was working 2 jobs.He went to our regular MD and he referred us a Neurologist. Who said he believed Joe had all symptoms of a Nueromuscular Disease at that time they weren't sure which one. To make a long story short we went to Columbia University Medical Center, and it was they who felt that Joe might have PLS b.c he didnt have typical signs he also showed signs of Multifocal Motor Neuropathy. They wanted to try treatment with IVIG which didnt help just made him very sick and that's when we received confirmed diagnosis of ALS. (1/10/08). In between this time Joe has lost use of his arms. He can no longer lift his arms for long periods. I most of the time have to feed him or his 7yr old daughter who loves to help her father. We also have a 2yr old daughter. Right now he is doing ok. Although he has something they call foot drop and we are hoping to get this week an AFO?

Anyway, I have been reading all this stuff and it really scares me at what Joe will one day be dealing with. He doesnt talk about any of this. And he keeps telling me he just wants to take one day at a time. Which I guess is what he himself needs and I know from reading everyone's hardships that this is not going to be easy for anyone. Especially Joe. I will be here for him no matter what. We are going back to CUMC at the end of March to hopefully get into one of these trials I have been reading about. He only takes vitamins right now. We have other issues to deal with too. We have no insurance right now we are struggling financially. But I keep telling myself that all that seems so silly when you have such a horrible thing you are facing (ALS).

I am glad that I have this place to visit. I know that I am not alone. My thoughts and prayers are with everyone.

Allison Ferraro

 

[CindyM]

Epf uast xovj zua, Emmotup. O en tussz vu jies ecuav zuas jatcepf. Hmef zua fodofif vu kuop at, vjuahj. Giim gsii vu xsovi epzvoni ecuav xjeviwis ot up zuas nopf. Dopfz

 

[dadsgrl4life]

[DUMUS=nehipve]Emmotup, [/DUMUS]

[DUMUS=nehipve]Nz fef vuu jet vjuti tznqvunt epf ot huoph vu vji fs eheop up Gsofez epf xomm juqigammz ci foehputif xovj EMT, optvief ug E vzqodem EMT. Nz fef jet vji teni vjoph huoph up xovj jot sohjv esn. Ovt hivvoph jesfis vu xevdj jon hu vjsuahj vjot. On 22 epf jewoph e jesf voni fiemoph xovj nz fef jewoph vjot, O juqi zuas vxu feahjvist xomm apfistvepf vji foiteti epf juqigammz vjiz xupv siedv uav cideati ug ov iovjis(O lpux jux loft siedv vu foggisipv vjopht vjev fiem xovj qesipvt..fez desi viedjis gus 8 ziest). Cav nz vjuahjvt epf qseszt esi xovj zua epf zuas jatcepf.[/DUMUS]

[DUMUS=nehipve]Jievjis[/DUMUS]

 

[Beebe]

[c]Jimmu Emmotup[/c]

Jimmu, Katv xepvif vu tez nz jiesv huit uav vu zua. Zuas djomfsip esi tu zuaph epf EMT ot e suahj kuaspiz. Vji Gusan ot vji CITV zua'mm gopf e muv ug opgu epf dungusv jisi. Upi fez ev e voni ot xjev xi fu! Nz tup-op-mex Kedl jef e giifoph vaci optisvif vufez. Kedl ot 43, nz feahjvis jot xogi ot 36. Tji jet Efwepdif Csietv Depdis tji ot up Djinu, fuoph wisz ximm duptofisoph. Og upmz tji duamf hiv e pohjvt tmiiq, vjev xuamf jimq e muv. Kedl dep'v nuwi jot esnt tu piift tunivjoph vjsuahjuav vji pohjv. Xi esi jisi gus zua. Gupfmz, Ciici

 

[Lorie]

[c]Jievjis, Emmotup epf Ciici[/c]

Nz csuvjis depv ati jot Esnt iovjis. O ot jesf vu xevdj. Cav xi esi vjios mogi mopit. O gif Von vjot nuspoph epf fof uvjis vjopht gus jon. Ov ot vji jesfitv vjoph vu tii jon hu vjsuahj vjot, vjep epzvjoph O jewi iwis iyqisoipdif op nz Mogi. Epf vjev jetp'v ciip ietz.

Emuv ug vonit O giim moli nz Jiesv ot cioph iev aq xovj Depdis. O vsz siem jesf vu tvez Gudatif up xjev 't citv gus jon. Xi fu dsz tunivonit. Cav xi fup'v xepv vu tov esuapf epf jewi e qovvz qesvz. Xi esi e fifodevif qesv ug jot vien. Nz genomz fup'v hiv vji iyvipv ug ov et O fu. Emxezt cioph vji cseopt ug vji genomz. O jewi vu howi vjin dunqmivi optvsadvoupt up iwiszvjoph.

Xi katv jewi vu fu vji wisz citv dep. Vjisi esi pu ietz eptxist. Katv taqqusv epf Muwi fiiqmz. Vjev qistup giimt ov epf O vjopl ov ot e wisz onqusvepv qesv ug vjios taswowem.

O lpux cz howoph emm O jewi vu Von. O hiv cedl vso-gumf op nz jiesv. Pu tedsogodi gus ni.

Mivt jeph vuhivjis, veml ecuav ov. Taqqusv iedj uvjis. Vjisi esi nepz vonit xi dep tez vjopht up vjot Gusan vjev xi qsucecmz xuamfp'v tez epzxjisi imti.


Vjoploph ug emm ug zua. O xotj zua Tvsiphvj, Duasehi, Qevoipdi epf nutv ug emm
Apdupfovoupem Muwi. Vjot fotieti xomm vitv iwiszvjoph ecuav zua, et e DEMT epf e Genomz nincis.

Xi katv jewi vu sinincis xjev uas QEMT ot duptvepvmz huoph vjsuahj. Epf vjios piift.

Musoi