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lilblueheron

New member
Joined
Mar 9, 2013
Messages
4
Reason
Loved one DX
Diagnosis
05/2012
Country
US
State
IL
City
Naperville
I am new to this site and am very grateful to have found it.
My 53 year old brother was diagnosed with ALS in May of 2012. We were close as children, but not so much as adults. His diagnosis has brought us closer again. In the past two months, he's lost most of his strength in his arms and upper body. Fortunately he can walk and talk, though he is starting to feel impaired in both ways. He is dealing with it as best he can, and has a lot of support from his physicians, the Les Turner foundation, and of course family and friends.
This is not about me, but this past week has forced me to encounter something I dreaded. He spoke to me about the decline in his upper body, and frustration at his loss of independence. I did not know what to say but "I'm sorry". I feel like there must be more to say, more I could do, but I feel horrible that words failed me. I wonder if others have gone through this. I'd appreciate any thoughts. Thank you.
 
I am so sorry to hear about your brother, and I'm sorry this is the reason y'all have gotten close again. See there? Sometimes "I'm sorry" is the best you've got. I think as long as you are there for him, listening to him, just being there, it helps. It is sincere and not a half listening or disengaged "yeah, sorry to hear that." With my mom, I tend to say "I am so sorry you are going through this" and validate her feelings- "I can only imagine how awful that is." Then I try to offer concrete help- "did you talk to your doctor about ____?" or "I heard about ____ on this message board I'm on, do you think that might make things easier for you?" Just making sure he knows you're there for him and you care. That's most important.
 
know its difficult for both of you. try something different. ask him to prepare a list of twelve things he would like to do over a weekend during the next year. then you and family try your best to see that it happens, one a month. i think this would help take his mind off progession and something to look forward to. my progression is slow but steady. i have witnessed those who continually worry and speak about their progression and it definately makes it worse. build new memories together
 
Welcome to the forum Lilblue, and I'm sorry to hear about your brother.

I think we've probably all felt the same way - a feeling of our absolute inadequacy. The only thing I could think of to say to my wife when she was diagnosed was "We'll get through this together." There's a lot of uncertainty about the exact course the disease will take and it's duration in any individual. So it's necessary to be flexible and agile in dealing with the progression as it develops. I think perhaps the most helpful thing you could say is that you'll be there for him, and then do what you can as the needs arise.

I pray wisdom and strength for you.
 
Just let him know how much you love him and do it often. Cry with him and laugh with him. God bless you and yours. Ask any questions here. Have you contacted your closest ALS Association yet? They can be a tremendous wealth of information, equipment that they can loan you, and support.
 
Exactly what others have said. I can completely relate to what Phil and MsPie said. Take care. Yasmin.
 
The others said it all--the only thing I'll add is that there are things to help him -- there are computer systems that work with the eyes if necessary. Those might make him feel more independent. Otherwise, all you can do is let him vent. Let him know you're there for him.

If he's showing signs of progressing depression--you might suggest he talk to someone if he needs/wants to.(depression to some degree is normal with any debilitating condition)

Wish there was a magic answer--there just isn't. The others have given awesome suggestions.
 
There are feet trackballs, too, if he keeps his legs longer than his speech.

But to your original question, what I wanted most to hear from my sister was that she would stick through it with me, and that she was committed to helping me as much as she could, whatever that took. That gave me the freedom to ask her for things I wouldn't necessarily have felt free to before. Obviously that has to be honest, and if you put it out there you have to be willing to back it up with action.
 
So sorry about your brother, but at least you are getting closer which is a backwards blessing. My ALS started in my hands and it took me a while to recognize what was really bothering me. Independence is a grand concept, but I was worried about my personal hygiene, my ability to dress myself, so after diagnosis I went to a counselor. The personal hygiene thing turned out to be the biggest issue so I bought a bidet seat which takes care of all of that. I find the best question is: what can I do for you today? The hardest thing for me in losing my hands was losing my ability to cook my great love and passion since I have been 12. I'm sure your brothers facing the same things. Your own mortality is not an easy issue. We are all here to help both of you.
Hollister
 
I think that it is great that your brother has shared with you. I am sure you will many more of these types of conversations. It is good to simply listen and maybe reassure him that he is still in control*of his needs and his*care even thought he losing his*independence. I think actions are stronger than words...be there for him and look out for his best interests. It will be much appreciated. Good luck!
 
Yes, saying I am sorry does not seem enough--but it is when it is heart felt. Listening to him, allowing him to open up and understanding is all he wants. He doesn't expect you to have the answers. He knows you can't do anything about it so I am sure It helps just being able to open up.
 
Thank you all so much for your words! Especially thanks to Tokahfang, for stating "what I wanted most to hear from my sister was that she would stick through it with me, and that she was committed to helping me as much as she could, whatever that took." I'm scared of what is ahead for him, and for our family, but I know that I want to be there and help him. You all have helped! I am so glad I found this forum!
 
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