Alison,I admire you and am proud to know you as well..
Gary does not get out of bed either has not for years..not because he is depressed... but because it hurts him physically too much it puts to much stress on his elbows and back...he no longer can hold himself up without being propped and strapped in the chair.....plus he feels it is much harder work on us to try to continually get him in and out of bed..he had several issues with bedsores as well that he longer has since staying on his airmattress..he does get up for showers however..
Now our livingroom is pretty much my bedroom..he and I sleep in the same bed..as I combined his hospital bed with mine by taking down one of the rails and attaching them together..my bed is adjustable so they are both at the same height as well...the kids take over my bed in the afternoon..to talk to him about there day and watch tv etc...
As far as ALS goes..he just doesn't like thinking about the disease itself too much..but does take a huge part in determining his cares..he watches everything , that everyone does..and if something goes wrong often he himself will tell us what it is..just because he prefers being comfortable in his bed..doesn't mean he does not take an active role in our lives...he just does what he feels is easier for him and us..Lisa

Lisa,
Maybe the reasons for Chris not getting out of bed are the same as Gary's....and I could understand that. But all he does is watch TV. He doesn't seem to have any interest in getting on the internet, he doesn't listen to books on tape. I know he misses his independence but I know there are things he can do to get a little of it back....he just chooses not to.
Alison

Alison.. does Chris seem depresed at all? I mean does he cry alot or do you feel he is withdrawn as far as talking to you goes? If not it may just be the difference of his personality..
Does he use a speech computer frequently ? If so, maybe talking to him about your concerns will help..what makes him happy may be different than what makes Dave or for that matter Gary happy.as far as outside interests go...There may be no problem at all..Or it maybe a problem with frustration or depression.. but only he will know the answers..everyone with ALS has a different personality no two people adapt the same way...
But, I find talking about things openly helps..and hopefuly he will be willing to do so with you..
Gary rarely cried and was almost always in an upbeat mood... I pushed him alot for awhile to get out and be more active..but I found out it caused him pain..and especially after I saw the damage to his skin..we began to discuss it..we tried all kinds of modifications to his chair ..but nothing was more comfortable than his rotating airmattress..so then we had to come up with ideas to try to make our bedroom into our livingroom or "gathering " room...
Gary was a computer scientist..so he loves his computer..but some people may not enjoy computers as much..even though it takes him 5 minutes to type a sentence..he still enjoys surfing the net especially in regards to things he liked before ALS.
Alison..you re a very special person and I know you are doing the best you can for Chris..I'm sure he knows it as well..
I agree with you as well ...Dave is quite an inspiration for PALS ...Lisa

Lisa...he really isn't depressed. He doesn't cry at all. He uses his speech computer all the time. He just seems content to just lay there while I know there is a whole world for him to be involved in. He is quite computer savvy as he was an electrical engineer. I have mentioned this to him several times that he should get on the internet....with no response. He had purchased the ERICA system in the spring....got frustrated with it and so it was returned. But the bottom line of it all is: whatever makes him happy..right??? I just want the most for him under these circumstances.
Alison

ALison..I know you just want the most for him..but maybe he feels he has that already..you and the rest of his family..Lisa

Thank you, Lisa!!!