Hello,
Not sure how this works, would just like to talk to others that know what is going on. He was diagnosed 1/07, but probably had ALS for a while b4 that, and was in denial. His father and Aunt had it too. All that was b4 I knew him. Getting pretty weak now and has some problems with everyday things like being able to get dressed alone. We are married 20 years in March.
Just feel a little overwhelmed sometimes. I am working full time so we have insurance for meds and doctor visits, and yes we are getting medicare coverage too. My brother checks on him throughout the day and I call whenever I get a minute at work, about 3-4 times a day just to check in. We are traveling to Mayo clinic for the only ALS approved site in our area.
Its hard to watch what is happening to him, I try to keep a for him, but when I am alone I cry alot. Our house is going to ____, b/c I just can't keep up. We are in the process of trying to get a handicap van and a chair, which will have to be XL b/c he is 6'10" tall. Not sure if this is what this site is for, but here goes........39woody (Woody was our favorite dog who died due to a coral snake)

Hi 39Woody and welcome to NeuroTalk. I'm so sorry for your husbands dx. And yes, you've come to the right forum to talk about it.

This has not been a real active forum...not sure why. BobbyB has posted much information that you'll find helpful. Please know that you are alone in this journey.

Hi 39 Woody. I usually stay on the MS forum for the most part but occasionally venture out to other areas.

I work with a man who was dx with ALS last year. He is the same age as me - 47. He is my only source of information about ALS as I knew no one with it before him.

He's doing pretty good - mornings are his "good" time and that's the time of day he will call to talk, etc. because as the day progresses his voice gets softer and more slurred.

He keeps up with all the new advances made for ALS and is participating in some sort of trial right now. I'll have to ask him what it's for as I can't remember even though he's told me several times!

He still has a great sense of humor and teases me about my memory problems and I tease him about his tremors (all in good fun). He jokes that when we go out to lunch or something it's a wonder that we ever get to eat - what with me getting lost and him taking so long to get seated! He doesn't mean any disrespect with it - and I'm happy he can see the humor in our situatons. However small it may be.

I hope you get some help with your house - I can only imagine how hard it is having to work full time and then having to care for the house, too. There is a classified forum where people advertise items they have to sell or swap - you might look there for the van and chair.

I'll keep you and your husband in my prayers.