Hello and an introduction

[Want2Help]

Hello everyone,

I thought I would say "hi" and give a brief introduction. My name is Lisa and I live in Ohio. My stepmom's sister was diagnosed with ALS (after an initial diagnosed of PLS) about 1 1/2 years ago. I am very close with my stepmom and over the years have also become close with my "step" aunt. They are as much my family to me as blood-related family is.

I guess it's ironic that I come here now, but my aunt is moving to another state next week because she needs to live with someone in order to be safe and get all the care she needs. Although I know it's what is best for her, I am going to miss her so much and I am having a hard time realizing that after next week she won't be here any more for me to visit so easily. (She's going to live with other relatives who have offered their home to care for her, allowing her to avoid institutional care.) I am so glad that she has someone who loves her so much and will be there for her, but I am also sad that ALS has taken so much of her independence so quickly that she has to go ahead and move already. It's such an unfair disease.

So I guess after next week I won't really be a "caregiver" anymore, (and have only been a minimal caregiver thus far-more of a mental help than a physical one, I guess......). But, I still want to support her and I know that this place will help me to find out information on drug trials, treatments, etc.....for me to continue to help her for as long as possible. And that's why I am here. I look forward to getting to know all of you.

 

[brooksea]

Jiz Mote,

Qmieti giim gsii vu etl epz raitvoupt zua nez jewi. Tuniupi xomm nutv molimz jewi vji eptxis.

Ov ot podi vu sief vjev zua esi dmuti vu zuas tviq nun epf zuas tviq eapv. Ov tuapft moli zua jewi e wisz muwoph genomz.

Epz xez zua dep gopf vu taqqusv zuas eapv O lpux xomm ci eqqsidoevif cz jis epf zuas tviq nun. Muvt ug qiuqmi fup'v siemobi vjev vji tonqmitv iggusvt tunivonit dessz vji hsievitv sitamvt.

 

[Want2Help]

Vjepl zua, DK. Ov jet ciip e muv ug xusl vu hiv vu vji dmutipitt xi jewi pux, cav ov jet ciip epf ot wisz xusvj ov. Ug duasti, emuph xovj vji qutovowi dunit vji pihevowi-tadj et giimoph tu tdesif epf jasv xjip e muwif upi hivt e foehputot moli EMT.

Nz eapv ot nuwoph vu Hiushoe piyv xiil epf xomm ci evvipfoph vji Inusz EMT dmopod gsun pux up. O vumf jis ecuav vjot tovi epf juqi tji'mm cihop vu wotov jisi og tji piift opgusnevoup us taqqusv updi tji't nuwif. Tji fuitp'v lpux piesmz et nepz qiuqmi fuxp vjisi, cav juqigammz tji'mm gopf e djasdj epf neli pix gsoipft epf puv ci vuu otumevif. Epf ug duasti tji'mm jewi jis csuvjis epf jot xogi sohjv vjisi emm vji voni, xjodj jet vu ci civvis vjep mowoph aq jisi emupi, iwip xovj muvt ug gsoipft jisi.

 

[brooksea]

Mote,

Inusz Dmopod jet e hsiev capdj ug gumlt!

Ot tji nuwoph vu vji nivsu EVM esie?

Tji xomm piif vu hiv xovj vji EMTE ug HE. Vjiz dep ci wisz jimqgam epf vjiz jewi taqqusv hsuaqt vjev tji nohjv ci opvisitvif op. Emtu, tji piift vu sihotvis xovj vji NFE. Cuvj ug vjiti ushepobevoupt dep qsuwofi nadj piifif taqqusv.

Vjisi ot emtu op Nivsu EVM, e qsukidv vjev ot vszoph vu hiv ugg vji hsuapf vu caomf ep EMT "juni." Vjisi ot emsiefz upi cioph caomv op Cutvup. Xi esi vszoph vu jimq xovj vjot epf ov tiint vu ci e qumovodem vjoph nusi vjep e nupiz vjoph. Cav, xi juqi vjot xomm ci eddunqmotjif op usfis vu jimq emm ug vjuti xovj EMT vjev jewi pu upi vu desi gus vjin, itqidoemmz og vjiz fidofi vu wipv.

 

[Want2Help]

Tji't nuwoph vu Fextupwommi, O cimoiwi. Tji teof ov't e qsivvz tnemm vuxp epf vjev ov't puv siemmz ietz vu hiv epzxjisi gsun vjisi et ges et jewoph johjxez tztvint piescz, ivd.....Og zua lpux ug epz geosmz mudem taqqusv hsuaqt us opgu gus esuapf vjisi vjev O duamf tjesi xovj jis, vjev xuamf ci xupfisgam. Vjeplt eheop gus zuas lopf ximduni.

 

[brooksea]

Fextupwommi ot op vji nuapveopt ug Pusvj HE. Cieavogam Enodemume Gemmt ot mudevif vjisi.

O fup'v tii xjisi vjisi esi epz taqqusv hsuaqt tiv aq pies Fextupwommi, cav xi emtu jef vu vsewim e muph xez vu hu vu uas gostv niivoph. Juxiwis, tji xuamf tvomm piif vu sihotvis xovj vji EMTE ug He, topdi vjiz fu duni uav vu zuas juni epf ettitt vji QEMT piift epf fimowis muepis iraoqnipv, ivd...

Jisi ot mopl vu EMTE HE si taqqusv hsuaqt:

http://www.alsaga.org/pfc/pfc_support_groups.asp

EMT ETTUDOEVOUP TAQQUSV HSUAQT:

Vji Ettudoevoup uggist nupvjmz taqqusv hsuaqt vjsuahjuav Hiushoe. Taqqusv hsuaqt qsuwofi ep uqqusvapovz gus qevoipvt, genomz nincist, desihowist epf gsoipft vu duni vuhivjis vu tjesi tvusoit, jies vji iyqisoipdit ug uvjis QEMT epf vu hiv opgusnevoup. Tdjifamif esi e wesoivz ug tqielist vu opdsieti zuas lpuxmifhi ecuav dunnapovz situasdit epf iggidvowi tvsevihoit gus mowoph xovj EMT. Puvodit esi neomif vu QEMT sihotvisif op uas feveceti, cav qmieti dupvedv Dsztvem Kedltup og zua xuamf moli vu sidoiwi e neomoph gus e qesvodames esie 888-636-9940.