Recent content by MVFinVA

Glad to hear from you Katie, but sorry we all have this journey in common! It is so good to have a place to "talk" where we all understand all the background and emotion. I have very loving and empathetic friends, but NOBODY understands like another CALS! My PALS, Dave, was definitely a keeper...

My PALS was a vet and was seen at the VA. We never received a letter from the VA Biorepository Brain Bank prior to me contacting them. I found them when looking for programs to donate a PALS brain too. Dave had ALS/FTD and I wanted to be able to help in the research in this area. I know Dave...

I'm at ten months here. I can relate to so much of what you have written Lenore and Sue. I'm coming out the other way though, I'm not selling. We were on the ALS fast track, 20 months from diagnosis. We had been in the house for 12 years before the nightmare and have a lot of good memories here...

Debbi, This sounds so much like my husband, Dave, who also had ALS/FTD. The ALS seemed to move from the head down. It moved from his head, to his arms and breathing, then swallowing, and hands. He could walk a little even at the end, but lost the ability to understand language at all. His...

Lenore, I so hope that whole "second year is worse" thing isn't true for us CALS! I think life with ALS was so bad, and we were mourning loses all along the path, that it is hard to dream it could be worse. I know that for Dave, because of the FTD, I had lost "him" before there was an official...

We were given a king size Flex-a-Bed from a former CALS, who had received it from a former CALS. It had a height adjustment on my PALS side. It worked well for us, but my PALS was able to walk a little until the end. It did allow us to stay in the same bed until a few months before the end. I...

An idea for flooring - When our lower level was made handicap accessible we put down a newer product that is called WPC (wood plastic composite). It's easy to clean, looks nice, has padding built into it, and is waterproof. We had carpet in our family room and laminate in the bed rooms. We made...

Oh I have a garage full of "stuff" too:) There was a lot of it, if not most of it, that Dave just couldn't let go. After almost 30 years of marriage I convinced him to let his college and grad school books go, except for the Calculus book. Why he needed to keep that one I don't know. We had a...

I would be interested. The chance to meet IRL some of the people that helped me through would be such a blessing!

Oh Sue, I'm just a little bit behind you on this new "post-ALS" journey and it stinks. You were on the ALS journey so much longer than so many of us CALS and all of your posts inspired and encouraged me. I come back here now to read your new thread and also be encouraged. Thanks for posting...

We did that with my PALS. We went into the SSA office while he was still on sick leave. ALS is on a list of items that automatically qualifies for SSDI. Make an appointment before you go and ask what paperwork they need. My PALS claim was decided in less than a month. Have you looked into...

Dave passed away this evening at 5:30. I am surprised at how shocked I was, while expecting it all day?! I will post in the memoriam thread when I can compose my thoughts. Right now they are flying all over the place. Thank you all here for your support and encouragement. I can't tell you how...

Dave is still resting peacefully. He had a fever during the night, but Tylenol brought it down to normal. The LPNs say he has a strong heart. Over 25 years of running 3 miles a day, 5-6 days a week, gave him a strong heart. We are just quietly waiting. Will probably be kicked off the hospice 24...

Removed the BiPAP 32 hours ago. Dave is resting peacefully due to morphine and ativan. He has very, very shallow breathing, but not fast. His O2 dropped to 60s at one point, but seems to hover in low 80s. He is asleep/unconscious, but did crack an eye for the first time when I spoke with him an...

My brother-in-law arrives today and daughter with twins is coming in today also. She is staying at a friend's house to help keep the twins at a relaxed place. Other brother-in-law has some health issues and can't fly right now. Younger daughter is staying in Texas, as this is the first week of...