Recent content by lunarruna

Dearest Paty, I have thought of you so many times during the past six months. I am so sorry for your loss. You were amazing in how you hung in there and took care of your Jorge. Now be gentle with yourself and take care in your grief. Sending you peace and love, Beth (former CALS to husband...

Hi Rich--Yes, we hooked the nebulizer up through the Bipap....my husband couldnt be off Bipap for more than a minute or so without big stress, so we found a "t" that hooked into the hose up near his mask....because of the in and out of the bipap he felt he didnt get a complete dose each time, so...

Pam-- For our recliner, we had a 20.25x 20.25 inch ROHO cushion. You will see on the Spinlife link above that there are a wide variety of sizes--you can call and get custom help for all your needs--give them a call and explain your issues and they will suggest best products--veyr helpful. They...

Paty.. Good to hear from you--thanks for the update. You hang in there and let Jorge know we are pulling for him. You take care...Beth

here are a couple of things we learned about laryngeal spasms... --they are most common in PALS who have asthma, or had it in childhood --they WILL pass so try and stay calm (easier said than done, right?!) --for us it was a sign of my husband needing to be on Bipap, they pretty much went...

Oh Anne...My heart goes out to you. Your Mom was so lucky to have you (and you her). I lost my husband in July. Thank you for letting us know. Sending you peace during this tough time.. Beth (former CALS to husband Shannon)

Citlalli... You are doing all the right things and your love for Andres shines through. You two seem as well-prepared as anyone could be for this difficult transition. It seems many people go in their sleep, or quietly stop breathing, others experience stress/anxiety related to the...

ROHO cushion sold RoHo has found a home.... Beth

ALS daughter.. It may seem hard to believe, but the days and months right after diagnosis are some of the hardest times, if not the hardest, with ALS. Your brain runs wild with all the thoughts of what will happen and how will you deal with it. The despair and grief are strong and real. This...

Hi all… I have a large ROHO cushion to offer to a PALS in need for the price of postage. It is the one item that allowed my husband Shannon to live in his recliner chair comfortably as he wanted. We bought it at SpinLife.com and he used it 24 hrs/day for a little more than a year but it is...

Thanks everyone for your support and encouragement...I am doing okay. I wont be making it to the MT conference because I have relatives coming then, but otherwise I would love to meet you guys....don't be afraid to ask for my help, and be sure and let me know if there are future MT meetings...

Caroliney, Yes the Vanguard Plus from Prentke Romich Company is what Shannon had...what we didnt like is that the voice is very synthetic sounding compared with some of the devices that have very real sounding voices. (Our dog understands the ERICA voice but never even knew that the Vanguard...

Hi all-- I have been away from the site--my husband Shannon died on July 28th, 2007, here at home with me and hospice nurses, as he wanted it. I had the chance to post this news on a couple other sites but am just getting back here. I dont know what I would have done without these online...

Thank you so much Phyl and Irma for sharing your stories. It helps take some of the fear out of what to expect... Beth

Hi Heather... See under Events Section about the ALS conference in Missoula, if you are interested...other Montana folks on this site too now! Good Luck with your recent trials....Beth