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ssmjboy

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CALS
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Hi everyone
I wanted to start trying to find out any and all info I can on ALS. My mom was diagnosed in Feb.this year 07 and is having a real hard time excepting this diagnosed. she started with ALS in her right leg with the drop foot and no muscle tone. Now its traveling to her left foot and leg. Her mental state of mind is going down hill FAST! I try to encourage as best I can,but I am not sure how or if I can bring her mental mind up to cope with this diagnosed. Can anyone help with this matter? Our first support group is not till July.
worried and upset daughter
 

Al

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Hi and welcome. Sorry about your mom. Is there anyway you can get her to read some of the stuff here? We all know things are bad but most of us have come to realise that we can either be living with ALS or dying of it. Most of us have learned to live with it. Also denial is one of the stages of coping with it. Have you contacted ALSA to register and get their Manual for Living With ALS? It offers coping strategies for patients and Caregivers. Hope this helps. Ask anything you need to know or use the search feature above.
AL.
 

Mike27

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280
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Hi there,
Welcome to the forum though I'm sorry you need to be here.

Your Mom is probably experiencing the 5 stages of grief-that is denial, anger, bargaining, depression and acceptance.

The important thing for you is to identify which stage she is in and accept it for what it is. She may lash out at you for no good reason (I did that with my family more than once) but just know she can't help it.

The important thing for your mom is to move through all the stages and not get 'hung up' on one. It does happen.

Let your mom know that ALS is not a death sentence. It does shorten your life, but many of us on here have had it for +5 years! The death sentence comes as a result of not living the remaining years as best as possible.

It all depends on where she wishes to focus. Before ALS I could do, maybe 10,000 different things. (for the sake of argument) Now I can do maybe, 7,000. Do I focus on the things I can still do or the 3,000 things I can no longer do?

I hope this helps somewhat.
 

Frizzel

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Mar 15, 2007
Messages
177
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DX UMND/PLS
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03/2007
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WA
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Vancouver
Good Word Mike

My thoughts exactly Mike. I may not be able to work as long and hard. I CAN still work. I used to complain about having the business in our home....now I'm so grateful we do....I rode the riding lawn mower (blade not cutting) around the yard yesterday to get out and cut lilacs that I used to be able to run out and cut any time. For me, it's about making adjustments.

Yesterday, I was perched under our old apple tree weeding. I was stuck there until my husband saw that I was laying on the ground like a fallen baby bird from it's nest. My breathing was labored by the time I got to the porch from trying to work my way out from under the tree. He had to carry me back to the house.

Later that day, I was outside again only this time I asked him to check on me if I didn't come back. We've even gotten to the point where he puts me in the deep wheel barrow so I can go with him.

FOr today, we find the strength to go on and the willingness to accept the things we can not change. If your mom would ever like to write me, she's welcome. Mike's right though. We've got to choose to not get hung up on one of those grieving stages AND only we with these diseases can choose to either move on or ask for the help TO move on. We're cheering her on.

Frizzel
 

ssmjboy

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CALS
Country
US
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pa
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reading
I need to hook mo up with this site. She is afrriad to learn that she might be dying tomorrow. Mom is a person who if she reads about an illness she has it. I have to be careful with her . she wants to know nothing about als till it happens to her.
 

ssmjboy

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Reason
CALS
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pa
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reading
frizzel you made me giggle as to your situation under the tree. I am planning on helping mom to get onto this site so she can meet wonderful helpful people like yourself. Thanks for the support
 

ssmjboy

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Joined
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Messages
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CALS
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US
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pa
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reading
mike I will take all you kind words and apply them to mom. I want to get her on this site asap. I think it will help her. Nice to meet you
 

ssmjboy

New member
Joined
Apr 28, 2007
Messages
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Reason
CALS
Country
US
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pa
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reading
Hey al
yes we have the literature. Mom started reading it and got depressed. she is stubborn to a fault. :) gotta love her
HOpefully I can get her online and into this site to start talking to you guys so she can feel the love and support here.
thanks
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
We'll do what we can to help.
AL.
 
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