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  • thank you for your post...i think she is scared of dying...losing the ability to speak..overall unability to use her body. She is completely reliant on her husband to do everything...She does have the tobi machine but has had difficulty using it and has given up on it...hopefully she will keep trying. unfortunately i live 3000 miles away so hard not to be here to help her...
    (second part, read other first) My mom had peace because she knew she was going to Heaven when she died because she had asked Jesus into her heart as personal Lord and Savior. She leaned on Him to help her through. She did not like to talk about it to us, so I did not get the chance to encourage her. I would find out exactly what your sister is scared of and go from there. It may be a lack of knowledge of the future which you can easliy help her with. There are plenty of knowledgeable people on the Forum to answer any questions you may have. I know you will do a great job of helping her! I hope this may have helped you:) ~ Judy
    Hi SDgirl, I just wanted to say hey and welcome to the Forum:) I am sorry your sister has ALS. My mom passed away from ALS in 2004. I guess it would help to know what exactly your sister is terrified from. Is it because she knows she is going to die or the disease itself scares her? If it is her inability to talk soon, then there are devices to help her. There are so many things to be scared from with this disease. But, there are so many people living a normal life with ALS. The one ALS man's blog I follow is Jeff Lester. His blog is a Raging Bear's Living With ALS. You can google it. He has lived on a trach for 14(ish) years and said, "I am too busy having a FANTASTIC life." Another gal is Sarah Ezekiel on twitter she said, "Loving life despite MND/ALS. I raise awareness, fundraise, write, Tobii eyegaze artist." She even does public speaking on the Tobi eyegaze system. Her blog is called Saraville (on blogspot).
    Good Morning...my youngest sister who is 48 was diagnosed with ALS in March 2011...i have come out to visit her as i live 3000 miles away...she is in a wheelchair, no use of hands, legs, can barely talk and has a feeding tube...she is Terrified....is there anything that i can say to help her with this fear.
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