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gilly

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hi everyone...

i sort of disappeared from the forum for a while. was trying to keep my mind on other things. but the time has come where my aunt needs a feeding tube and a ventilator. i just can't suppress the overwhelming sorrow i feel for her. she can't speak and now can't eat or drink anything. not even a drop of water. nothing. i hate this disease so much. it's cruel and unfair. no one should ever have to experience something like ALS. i am furious that there are no significant advances to help the people with ALS so they can be stronger physically and enjoy the little pleasures in life. sorry for the outburst. i am just so torn between sadness and anger. i wish i could do something more than just volunteering and raising money. it's not enough.

does anyone with ALS know of creative little things that might help my aunt enjoy her life more? either easier ways to communicate or anything that might feel good or be entertaining. i want her to be happy.

ok, i needed to get that out!
nicole
 

CindyM

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Hi Nicole- you are a wonderful niece for wanting your Aunt to be happy. I am sure folks will have a lot of suggestions, but I can promise you that your presence alone makes a big difference in her life! We always feel we are not doing enough, but in reality you are doing all you can! Glad you are back on the forum, BTW! Cindy
 

MtPockets

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Cindy is so right Nicole. The thing that gives me a lot of comfort and pleasure is visits from friends and loved ones.

I know people have their own lives, but please take the time to visit. :-D:-D:-D

God Bless
Capt AL
 

cukita99

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nicole, just visit her, we get so lonley. i have als n cant speak but i can still drink n eat. i have a board with me 2 communicate. i have a lot of nieces n nephews but they dont visit or do anthing 4 me. wish u were my niece. a vvisit is all we need. :(
 

Icanmanz

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Hi nicole. Thanks for sharing with us. Yes dear, you bet, this disease is horrible. I am going to answer like Cindy. Your presence, dear. That'll make her happy. Spending a lot of time with her, that would mean a lot to her. Even though they cannot speak, you just do your part. Express your love, soothe her, pray for, and with her. Does she have a voice machine yet? I am so sorry for you, and your aunt. I get flashbacks whenever I read posts like these, but don't worry, I will be okay. I am here to share, and help (if I can). May God bless you and your family. You and your aunt are in my prayers.

Irma
 

gilly

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thank you

ugh... i really love this forum. you're all so amazing. thank you so very much for the encouragement. i will be sure to take it with me and pass it on to my aunt - who needs it the most. i wish i could visit all of you since everyone seems to agree that visiting is the best medicine someone can offer. i have planned a trip to see my aunt. she lives far away from me. but i text with her over the phone everyday. it's the only way she can communicate lately. so fearful of that ever becoming an obstacle for her as well. anyway, it's so nice to see so many familiar "faces" on the forum after being MIA for so long. happy to be back with such a wonderful group.

love to everyone.
nicole
 

paula-jane

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Visiting with your aunt is probably the best thing you can do for her right now. ALS can be very isolating once the ability to clearly communicate becomes difficult. Holding her hand and watching a movie... giving a pedicure and manicure... reading to her... little things like that could bring some joy to you both.
I've learned to ramble on with the latest gossip until I get the evil eye from my mum. She can only move her eyeballs and each movement means something... from "I love you" to "shut up.. I've had enough already!"
 
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