Mom diagnosed with ALS

[Lisa]

Hi! Hope I'm doing this right, it's my first time.
My mom, 67 years old, was diagnosed with ALS in Dec. of 2002.
Her legs are very weak and she falls alot but so far is still walking.
I have noticed her words being heavy and slowed. And her hands are losing strength-dropping things and not being able to grip.
I understand this disease progresses differently with each person but I was wandering if from these symptoms, anyone could suggest to me what to expect next and how fast to expect it?
I'm 37, the youngest child of 4. And my mom is my very best friend! I've been hoping for a misdiagnosis but it's been over a year now and they haven't changed there minds yet.
If anyone has any advice for me or can tell me what to expect next, please let me know.
Before her diagnosis, I didnt even know what this disease was.
Thanks for listening![/b]

 

[Jane]

Hello Lisa,

Welcome to this site. Your Mom's symptoms sound very much like my sister, and as you said each person progresses at a different speed.
I was speaking with a man diagnosed in /86. My sister is losing her voice faster than her legs. She first lost use of one hand and like your Mom started out dropping things.

You don't say what type of medical tests your Mom has had, there several tests that can rule out other diseases that mimic ALS. Perhaps these will help you accept diagnosis ( better yet rule it out )

You should be able to get help and support from you local ALS chapter, and Mom's Dr might be able to give you an idea of the road ahead.

Keep in touch, other people on the site are much more informed than I, Carol is wonderful. Thinking of you Jane

 

[Marci]

Hi Lisa,

I'm new to this website too. I had to reply to your e-mail as it was all too familiar. My mom was 66 when she was diagnosed last April/03. She is my best friend as well. My dad is her primary caregiver and he is wonderful with her so I am very lucky. I try to help out when I can.

Her symptoms started with her legs too. She used to fall a lot, but she uses a walker now. She wants to walk with it as long as humanly possible even though it is quite hard for her by now. Her speech was fine until December/January of this year. It is starting to really fade now. She has become short of breath at the simplest tasks.

I try to see her as often as I can ...but as Carol said, you have to take care of yourself and your family as they are still part of your life, and you can't feel guilty about doing that. You have to take care of your health to be strong for your mom. It is really hard at first because you don't know what is going to happen....it never really gets easy. And as Carol said, it's like Wham, another change comes that you are not prepared for. But you just have to have faith that you will be able to handle the changes however they happen….and you will.

Hopefully you have friends that you can talk to about it. I've been blessed with friends that don't really know about ALS but they are learning through me on this journey with my mom. You will find some friends that don't want to talk about it and that's okay. Do whatever it takes to find a strong support system around you.

I'm always willing to listen and it looks like there are a lot of people here who really care...