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AliCat

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Hello to all,

I posted recently in the Newly Diagnosed forum about my mother. Since she was diagnosed in early August, she seems to be progressing quicker than I expected. In 8 weeks she has gone from slight slurring of words and a small limp, to basically unintelligible speech and the need for a walker and wheelchair. I'm shocked at how quickly she has declined, and then I feel guilty for hoping it keeps progressing quickly to put us all out of this pain and suffering.

I am not her primary caregiver, my stepfather is, so I don't really know about her medications or the opinions of her doctors. I also feel guilty that I'm not more involved, but I work full time and to be honest, I'm scared to see her. I have an appointment with a therapist next month which I'm hoping will help sort out the feelings I have.

Alison
 

Nikki J

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Very sorry Ali

Everyone progresses differently and there are no rules unfortunately.

I am glad you are geting a therapist to support you. Please try to spend time with her. I know this is terrifying but she isn’t going to improve and you will regret it if you don’t Can you have someone with you at first? Maybe have an activity planned. Watch a video do her nails... i am truly not trying to guilt you. I am FALS. I have lost 5 relatives to this in my lifetime including my mother and sister. You will wish for more time. I did. So sorry you are going through this
 
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MarieLaure

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May 16, 2018
Messages
242
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Loved one DX
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10/2015
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FR
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Ile de France
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mortcerf
Agree with Nikki

Good idea to get help from a counselor and spend time with her somehow so as to have no regrets. Yes it is scary. Yet even with als she is still hers Yan de you can enjoy some activity or another.
Hugs
 

MarieLaure

Forum Supporter
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Joined
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Messages
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mortcerf
I meant she is still herself
 

KateEmerson

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Joined
Apr 23, 2016
Messages
508
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Lost a loved one
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09/2013
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Hi Allison,

This a horrify disease for the person who has it and for those who love them. I found that if I focused on " looking" at the person " inside" that failing body the person I knew and loved was 100% there. The Mom you love is still there.

Wishing you strength , Kate
 

AliCat

New member
Joined
Sep 3, 2018
Messages
8
Reason
Loved one DX
Diagnosis
08/2018
Country
US
State
MA
City
Boston
Thank you all for the supportive messages. I visited her and my stepfather yesterday and watched some football. You all were right. I just focused on the fact that she’s still my mom and it made it easier. I just have to remember not to focus on what she might be like in the future and just live in the present. Not always easy!

Alison
 
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