Uncle with ALS

[Pam]

Hi

My uncle has been diagnosed with ALS and I would like to let him know that I'm there for him.  Can anyone suggest anything that I might do for him to make his life a little easier?  He is deteriorating rather quickly and has great difficulty getting around - yet he is stubborn and wants to do everything for himself. I'd love to go over and cook him a meal at least once a week, but I don't want him to be upset.  Any suggestions will be greatly appreciated!

PAM

[AintMisbehavin]

Sorry to hear your news. My husband was just diagnosed this month. ALS is the most insideous disease, a death sentence. Just be there. Support his efforts to do things, offer help when he cant. Be there when he wants to talk. Even when you cant come up with a response, just listen. You dont have to have all the answers, cause trust me honey, with this somethings just have no answer.  I remind my husband frequently that he was given a year to live, not a year to die. Keeping his spirits up is the most beneficial thing you can do. (Anti-deppressents are wonderful things, though) Take care of his repiratory system, and make sure he eats well to keep the muscles nourished as long as possible.
Lots of love, Your in my prayers.
Mis Behavin

[Mericley]

Hi, I am sorry your uncle. I also have the same problem. My mother was diagnosed last year with ALS. It was devastating to know that she would live only 3 years, maybe more maybe less.I am here in USA and I can't be there for her. I go to my country couple times in the year, but this is not enough. I wish I could be there for her. This disease cause a lot of anxiety e to have a family member with them, I think this is a great help. It decreases the anxiety e give them the sense that they are not alone. Unfortunatelly, I can't be there all the time. I have to work here and send money for her treatment. She has the bulbar form of the disease. She has trouble speaking and with deglutition. Thank God, many of our relatives member are giving her lot support.  She realy needs that support because she gets very anxious when she chokes on food or when she any other thing like a cold symptoms. In her mind I think she is expecting she is going to die right at the moment when she starts to cough. The feeling is terrible for them and for us ( family). I feel like to tell you, be there for him.

[Wife of Als Patient]

My husband has ALS, and he is also a very stubborn man. He cannot do anything on his own now. But when he was having trouble doing things, but did not want help, I just stayed back and waited for him to ask. It was hard to watch him struggle but atleast he was trying and not giving up. You are very strong to want to help out your uncle. The only person in my husbands family that helps out is his mother and I. Everyone else is just not around much.
Helping your uncle out by doing lawn work and odd chores, shopping and cooking would be helpfull. Also, maybe just bringing a movie and Ice cream over to hang out could cheer him up. Just don't give up, give your uncle his space, but don't give up.
Sarah

[mlb1234]

I think cooking him dinner would be very nice.  Also grocery shopping, helping with housework, etc.  My grandma died of ALS in 1989.  Eventually she needed live-in help.   It was a very sad time.  ALS is a horrible disease.  I guess though if your uncle wants to do things for himself for awhile it would not be bad to let him just because some day he may not be able to.  I am so sorry you have to go through this.  Just being there for your uncle will mean a lot to both you and him.