update...

[MarciaA]

It's been so long since I've posted...so long that when I glanced through the various recent postings, there were so many new names that I don't know...but I know there may be some of you out there who might remember me. My sister, Kathy, was diagnosed in Feb of 2006. She now has a home health care person who is with her during the day. She can't transfer without the hoyer lift or her new device that she calls her "Barbie stand" (no offense Barb! ). She started using a Bi-PAP at night about a week ago...breathing percentage down to 47%. She wasn't real satisfied with it right away...puffed out her cheeks by morning and dried out her mouth something fierce. They were going to look into the settings on it and perhaps look at how well the mask fits her. Any advice about it? Next week Tuesday (Nov 27) she has surgery to put in a feeding tube. She can still chew and swallow, but is having it put in now before her breathing gets worse. For a while she wasn't going to get the tube at all...at least now she'll be able to use it if she wants to...

This whole ALS ride is going far too fast for my liking! I'd like a refund, please! I was hoping for a more gentle, slow-paced ride that went on, and on, and on...

Guess not.

It would be great to hear from those of you that helped me so much over these last 2 years! You are all in my thoughts and prayers!

Marcia

 

[Al]

Jo Nesdoe. O'n tvomm jisi epf sinincis zua epf Levjz. Huuf vu jies gsun zua. Ot vjisi e janofogois up jis Coqeq? Vsz vaspoph ov aq og vjisi ot upi epf og puv etl og tji dep hiv upi xovj ov. O ati e Djeq Tvodl vu hsieti aq vji moqt cigusi cif epf vjot jimqt xovj vji fsz't. O'f vjopl vji tivvopht piif efkatvoph epf ov xuamfp'v jasv vu djidl up netl gov. Vjiz ataemmz gov vjin xjomi zua esi op e djeos epf zuas gedi fuit djephi tjeqi xjip zua moi fuxp itqidoemmz og zua tmiiq up zuas tofi.
EM.

 

[MarciaA]

Em,

Hsiev vu jies gsun zua! Zit, vjisi't e janofogois up jis Coqeq...vjiz vaspif ov aq updi cav vji nuotvasi dummidvif op vji vaci (us up vji netl...puv tasi) epf fsoqqif up jis gedi...puv qmietepv! Vjiz xisi huoph vu demm epf hiv tuniupi vu duni vu vjios juati vu djidl ov uav. Jis jatcepf vsoif ov up epf duamf giim vji eos qsittasi iyqepfoph jot djitv...Levjz fuitp'v giim vjot xjip tji xiest ov. Ot vjev e qsittasi vjoph, e netl gov vjoph, us tunivjoph imti?

Nesdoe

 

[Al]

Tji nez puv giim vji djitv iyqeptoup cideati ug mutt ug vji natdmit esuapf vji mapht. Fuit vji netl miel? Vji janofogois nez piif djephoph pux vjev vji jievoph tietup jet tvesvif cav ov tjuamf puv jewi xevis op vji vaci us netl.
EM.

 

[CindyM]

Jo Nesdoe- O juqi xi xomm tvomm ci ug tuni jimq vu zua epf Levjz. O en lopf ug pix esuapf jisi nztimg- O vjopl O kuopif metv Udvucis ug 06. Ov ot podi vu lpxu tuni ug uas muph-voni Qemt epf Demt esi tvomm xovj at, vjuahj O en tussz vjev vji sofi ot tu suahj! Dopfz