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Hi Sheila, I'm right there with you. I lost my husband of 44 years on June 8,2017 so you see I know exactly how you're feeling. My husband, JC had bulbar onset and lived 13 months after diagnosis. Looking back, I know it had started way before diagnosis but, we had no idea that what he was...

Never used. Has all the bells and whistles. Located on the coast of NC/SC. Retails for $37,000. Asking $4000.

My PALS has bulbar onset also and is doing very poorly. He's too weak to cough and we use a cough assist to try and clear what we can. We've also stopped the Neudexta to see if that helps. Louise

You should go to the ALS clinic and they can help. I've found the social workers to be of great help to me in dealing with this disease and what it does to the PALS. Is he a veteran? Louise

You do get to know who your true friends are. We have friends who do their best to help us in lots of ways and yet, my PALS has family who drives right by and never stops to see him. Then they send and occasional cards that says sorry we can't do anything to help. They've never even tried...

I'm joining all of you. I need to get out and yet I can't enjoy it. My PALS uses all his energy just to breath with the help of a Trilogy. I don't need to list all the things, both large and small, that this nasty disease has taken away from all of us. Life has been very good to us and I...

Soonerwife, I've been checking the rescues but, I thought I was out of my mind taking on more responsibility. I see I have company in that department. With construction starting soon and all. What kind did you get? Louise

Thanks for moving my post. Louise

Re: PALS roll call Wednesdays (or whenever) Found out last week that there's an ALS clinic at the Charleston SC VA. We have an appointment mid June. Still trying to get some dependable in home respite hours. Hopefully this will be Has anyone used the website lotsahelpinghands.com? Louise

Thank you all for your input. I don't expect this to be easy but I know moving would have been a lot worse for us. With bulbar onset ALS my PALS doesn't like any changes in his routine and that's about to change drastically. I'll do my best to accommodate him. I'll still take any...