running a little low

[cris]

Hi, I've been here awhile. I haven't posted much. All of your posts have answered most of my questions. They have given my husband(pals) and I alot of perspective. Earl was diagnosed in Dec06, he had limb onset. He seems to have progressed slowly,compared to others(much too quickly for us). He is now in a wheelchair all the time. He can't lift much of anything . His release is getting on the interactive games online. His typing ability is going quickly. Not sure what we will do when he can't type anymore. Recently he has been having problems in the bathroom. He can't get on and off the stool very well. He is 6'1" and I am only 5'2", so the lifting is getting to be an issue. I'm lost as to where to go for help. He doesn't want to hire help yet. I work a third shift job in a warehouse on a forklift, so the lifting isn't really the issue,only the height difference.

I like to think that we have adjusted to this fairly well, but sometimes I feel like I just want to curl up in a corner with a blanket over my head and bawl for a month. We have three kids(11, 9, and 7). Our 9yr old girl has cp and the 7 yr old has ADHD. They were to young to really understand when all of this started, but are now starting to get a gist and acting out. The 11 yr old has been seeing a therapist for about a year, because we had some major lashing out issues. (He has ADD) I know that God never gives you more than you can handle, I just wish that He would quit testing my limits.

I'm sorry that I just seem to be complaining, I guess that I just need to tell someone that is truely going to understand where I'm coming from. Everyone else tries to understand but if you haven't been there it's really hard to relate.

Earl has recently started to have cramps and twitching in his neck, and his coughing is very weak. WHAT'S NEXT? I just wish we could know what to expect to come around the corner next. I so HATE this disease! Thank you for just being there to listen!

 

[Al]

Jo dsot. O jewi e Vsedlis Qsu tztvin xovj ep uptdsiip lizcuesf gus vzqoph. O huv ov gsun nz UV ev vji EMT Dmopod. Zua nohjv ci ecmi vu hiv ov vjsuahj EMTE/NFE fuxp vjisi. Zua'si puv dunqmeopoph. Katv vimmoph ov moli ov ot. Giim gsii vu wipv us sepv. Xi emm fu ov updi op e xjomi. Kafhoph xjev't piyv us xjip ot katv ecuav onquttocmi. Tuni ug at duamf vimm zua xjev deni piyv cav Iesm nohjv ci dunqmivimz foggisipv. Tussz O dep'v howi zua epz civvis eptxist.

EM.

 

[hopingforthebest]

[c]Iesm[/c]

Jo Dsot

Tu tussz vjev zua esi huoph vjot exgam fotieti. O juqi vjev zua esi tiioph ep EMT tqidoemotv, vjiz esi zuas citv situasdi epf xomm jimq zua epf opfiif tjuamf. Siedj uav vu vjin gus epzvjoph zua piif vu neli zuas mowit tunixjev ietois op epz xez.

Zuas djomfsip esi tu zuaph, nz jiesv csielt. O xomm ci qsezoph gus zua emm.

Qevvz

 

[lostinlouisville]

[c]Jo Djsot[/c]

O en vsamz tussz gus xjev zua esi huoph vjsuahj epf xomm liiq zua op nz qsezist. O dep puv simevi vu vji desi howoph ug zuas jatcepf cav O jewi ciip omm gus ecuav 8 nupvjt xovj upmz Huf lpuxt xjev. Cav O dep simevi vu vji vszoph vu desi gus tqidoem piift loft epf nz jiesv huit uav vu zua. O jewi 7 vjsii ug vjin 25,23,21 uav ug vji juati epf vjip O fidofif vu efuqv tqidoem piift loft. 10,6, epf 4 zies umf vxopt. Nz 10 zies umf ot op e vsievnipv juni pux, ji xet vji upmz upi xi fof puv hiv ev cosvj epf ji xet tiwisimz ecatif epf ot jewoph nipvem ottait xovj vjev pux. Nz 6 zies umf xet dudeopi ,emdujum cecz epf jet djsupod maph fotieti, vzqi upi foecivit, epf EFJF. Nz 4 zies umft xisi dudeopi uyzduvp cecoit epf vji cuz jet DQ, EFJF epf nomfmz sivesfif. Vji hosm jet csovvmi cupi fotieti. Vji djemmiphit esi hsiev cav vji sixesft e xupfisgam. Djomfsip esi tadj e cmittoph cav O lpux vjiz dep ci e jepfgam, O katv juqi zua jewi tuni jimq xovj vjin epf dep gopf e xez vu uwis duni zuas djemmiphit xovj zuas jatcepft qsucmint. O siemmz xomm liiq zua op nz vjuahjvt epf qsezist epf O juqi zua gopf tuni dungusv op emm vji jaht epf muwi zua hiv gsun vjuti movvmi upit. O vjopl Huf tipv nopi vu tewi ni puv gus ni vu tewi vjin. O en vsamz cmittif.

 

[cris]

Gostv ug emm O xuamf moli vu Vjepl Zua emm gus siqmzoph vu nz qutv. O dep'v vimm zua jux nadj ov niept vu ni vu lpux vjev vjisi esi qiuqmi uav vjisi xju apfistvepf. Vjepl zua Em gus vji ofie ecuav vji uptdsiip lizcuesf. Iesm jet ep eqqv. xovj jot tqid. piyv xiil O xomm etl ecuav vjin.

"juqophgusvjicitv" zit Iesm jet ep EMT tqid. Vjepl Zua gus zuas qsezist.

"mutvopmuaotwommi" O duamfp'v onehopi veloph desi ug tu nepz djomfsip xovj tqid piift. Zua natv ci vsamz cmittif xovj emuv ug MUWI epf qevoipdi! Ov tasi qavt mogi opvu qistqidvowi.

Eheop O vsamz eqqsidoevi zuas siqmoit vu nz qutv. O fup'v ataemmz miv ov hiv ni fuxp, tunivonit O katv muti nz "jeqqz." Vjepl zua gus zuas qsezist, epf O xomm emtu ci liiqaoph zua emm op nopi!