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Hope1935

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Jul 27, 2011
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17
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Loved one DX
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US
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Oklahoma
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Western
Hi all, I have been posting in the "Do I have ALS" portion. Our doctor diagnosed my grandmother yesterday. She has been saying for a few months that she had ALS (it wasn't that she wanted it to be ALS... Just just kept saying you know when something is wrong with your body and that she could tell it was bad.) She has arm and leg weakness, slurred speech, choking when eating, and hurts to hold her head up. She is still working half days... Owns her own business and is not ready to give that up... But does not like to answer the phones due to her speech. She is comeplely exhausted by the afternoon... But is very independent and I do not wish to take any of that away. I am finishing up my last semester of college so am trying to balance everything. My mother passed away suddenly 11 months ago from a heart attack... Just as I'm sure everyone else is I'm not ready to go through everything again. My grandma has lived a very exciting and promising life... But losing the only female role model I have left completely terrifies me. I'm the only granddaughter and have always been extremely close to her. As expected she is down over her ALS diagnosis but also very honest. She does not wish to have a feeding tube ext... She has said she's not scared to die... There are worse things in life... She just doesn't want to lose all dignity.

I know every patient is different and you can't give a timeline on life. My stepdad has a non curable brain cancer and was given a year to live... 4 years ago! I just need to know how long I have with her... And how fast this nasty disease progresses. I'm just terrified of what's ahead. Thanks for listening to my ranting and for any advice you can give. Im in the pity stages of being in my early 20s and having to deal with everything ahead of me. My family is wonderful (this is my dads mom... He's the only child she has.. My ain't passed away 3 years ago) so it's a scary time for everyone not just myself. Thanks for the help and advice... Maybe my pity party will be over soon!
 

brooksea

Legendary member
Joined
Sep 27, 2006
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HM
I'm very sorry about your Grandmother. She sounds like a real trooper! I think attitude is everything, so she might have a very happy life for years to come. But, as you said, every patient is different, so no one can give you a time line.

You sound like a very caring granddaughter. It also sounds like you lost a lot of those close to you. We are here for you. Good luck to your family. And hugs.
 
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