Madonna

Thank you, sorry to take so long in getting back to you. I hope that you had a nice Christmas and New Years, our was quiet. Sorry that your brother is not doing so well but it is good that his spirits are good. I do get depressed from time to time but that's not how I want to be remembered so I try to keep smiling. Take care and please let me know how you are both doing.
Barry

The nurse notices a pattern, he would sleep days and then stay awake a couple of days before sleeping days again. She told me the oxygen machine will make him feel better and less sleeping. I use her words to get my husband to use it. He does not like it much. It appeared to help a bit yesterday. He was awake yesterday evening and two hours this morning. Right now he is sleeping again. The nurses does not appear to be too concerned about it but then they are nurses from hospice. I am sorry your brother has mnd. It is so painful a disease to watch. And no, I do not mind you contacting me this way.

Thanks so much Barry - Johnny's legs aren't too bed (getting weaker) it his arms that are the trouble. He is still walking - so is not using a wheelchair at the moment. He has had a peg since early this year and doesn't eat or drink. He doesn't speak - that's not to say he doesn't still give everyone a piece of his mind using his little talking machine. I have told him about you as your times of diagnosis and progression are very similar. Like you, although he is getting weaker - in our eyes he has never been so strong. Thinking of you always and thanks for your info - Madonna

I hope I answered your questions, does your brother have a power wheelchair? I am now getting help getting up, washed and dressed in the morning and that really is helping me conserve energy for the rest of my day. How are his bulbar symptoms? I know that I could deal with the mobility issues if I didn't have to deal with choking on goo.
Anyway say hi to him for me and if I can help more just let me know.
Barry

Well thank you for all of the kind words, I am just doing what I can to make this as pleasant as I can. And have some fun cause we all need fun! You know I used to love to read the paper but have pretty much given it up because of the difficulty of holding it. I could read and turn the pages if it was laid out on the table but even getting to the table and laying the paper out is work so I don't read the paper much anymore. There are page turners for books but I don't know about newspapers, sorry. I know reading the paper online is not the same but maybe that would work? I don't have really bad neck issues yet so don't have a neck brace but when I use my walker my head does hang down. Such fun this is and will have to do something soon. I do have some trouble getting up but my biggest problem is getting up from bed. A good thing I like being in bed! I have a recliner that will raise me up and that helps, my arms a still pretty good, my legs not so much.