kfrancis

It's been a while since I have been to this forum. Life is so busy and my husband is getting weaker. We have been on hospice for 6 months now and he is in bed most of the time, out of bed just to sit in chair or shower, his legs are still pretty strong, but is now having a hard time feeding self. He is also on his bipap machine 90% of the time, on good days he can have it off an hour or so throughout the day. I keep hoping he will hang on for a lot longer because I always think of our little guy who is 2 and 1/2 years old now. I don't really know what to look for at the end of life with ALS and am worried all of the time when he sleeps longer even though I know he had a sleepless night before. I hear people can live for 3-5 years and we are now going on year 3 so I am hoping we have a lot more time. It's also funny how you learn who is there for you and who is not. Its sad too. would be there for you

I am sorry, I don't know have to navigate around here very well and I just now saw your friend request. How are you doing?

No unfortunately there is no cure for it but it is supposed to clear up on its on eventually. I could wake up one day completely normal or I could progress until I am much like an ALS patient or somewhere in between. Which is kinda strange bc you don't know what is coming next. Presently I only have problems with my speech and my right arm. I used to have problems with my right leg but that has gotten better.

Hi Kelly, I am sorry to here about your husband. I wanted to clear up the fact that I do not have ALS. I reiterate it many times just bc I had a very dirty EMG back in April but was diagnosed with mononeuritis multiplex secondary to Lyme's disease with ALS and CIDP in my differentials. I hang around the forum just to keep up with the PALS that I love and to relieve stress bc I have no other forum bc my disease is even rarer than ALS it usually starts due to vasculitis but I got it from a back tertiary lyme infection that I ignored for two years in an active state. If you ever need anything feel free to message me. I usually check in once a day to avoid homework and reconnect with people that understand what I am going through on a daily basis bc no one in my life does. I am always here to help.

Hi Kelly, I do not know anything about the CO2 stuff but wanted you to know you are all in my thoughts and prayers. We can PM each other with more personal info. God bless and tell your other half hello from me. Rox

kfrancis - welcome to the forum. This has been a very helpful place for me and my wife as I was dx 8/12/10 with Bulbar/limb onset. My kids are older...feel for you two with your kid so young! Praying for many people to come along side you guys. Ask and accept help. I know it's hard. It has been humbling for me too to take help when I'm used to giving.