losing it all at once

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clark evenchik

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Jan 27, 2007
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Reason
PALS
Country
IL
State
gush etzion
City
nokdim
I seemed to have over one week lost my speech and most of the hand function I have left.
How do I find the strength to carry on with this evil thing?
I have five kids and I can't stand them watching me wast away
I was diagnosed in May 2006
 
wasting away

Believe me when i say i understand where you are coming from. altho i am not the one with als and it is my husband that has had it for over a year, i have to watch him virtually waste away in front of me, and it is devastating...

it seems as though in a matter of a few days, some ability is gone. we have no kids at home, all are grown and gone, but i know that when they come to visit the next time and see their dad for the first time since he was diagnosed with this, it will break their hearts, just as it does mine.

but we just have to turn this over to the Lord and let it go and let Him handle it. easier said than done, i know. i give it to him every day, and take it right back the next day. that's why i stay so stressed out and upset - because i'm trying to handle it instead of allowing God to handle it for me.

God bless all of us - the caregivers and the ones who have this monster disease.

jackie
 
Hi Clark,

I'm so sorry this is happening and happening to the speech and hands, the two things that we know how to communicate best with.

The best advice I know is to get proactive with what you will need in the future. Doing something helps. I suggest, start now looking and deciding what kind of communication device you want. Maybe go to a speech therapist or have one come to you at your home. They can help you make decisions. Read all the forums you can about how others communicate. I think once you get your communication some what back in your control, you will be able to cope better. Getting the equipment you want/need can take a while. It is usually best to know what you want before you need it and start the process as early as possible.

I'm sure it hurts not to be able to carry out your dreams with your children. You can still show them your love and teach them so much. Show them your strength to fight the enemy. Show them your courage. Show them how to live life to the fullest with what you have. Only you can show them how to laugh and love when life is at it's toughest. They will never forget how you handle your struggle.

Seek God's face. There is a lot of strength there for you.

Everyone here is pulling for you.
 
Hello Clark

My name is Michael, and I also have ALS, it sure isn't an easy thing to deal with and I don't believe there's any thing anybody could say or do that will set your mind at ease. I can honestly tell you this though: I have never been happier in my life.
[And you can have this too] This wasn't always the case for me. Early on in my diagnosis I didn't know where to turn and didn't want my family to watch my demise. I am not a suicidal person but I did think of just about every which way possible to end my life. I am a Christian, but this battle within me was raging, I was in turmoil. I knew God was in control of everything, that is everything but this. I was not relying on what I already knew to be true. I called out to my Lord Jesus Christ and asked him to help me, I asked him to take this pain from my heart. And He did, I can't explain it in any other way. But I can tell you this is true and He is true and faithful. He will do this for you as well, He will bring you peace even though what you're going through may seem unbearable or hopeless. None of us have the ability to change anything, but our lives here do have meaning. Please ask God to help you, and turn your life over to him, all things are possible through him. Life itself is terminal Clark, and none of us will make it out alive, you and I have been given a great gift, there are many people out there who think tomorrow will come in have no concept of mortality, life is short, please make yours count. You and your family are in our prayers. Michael
Here are a couple of links and I would love to help you in any way I can.

(2 links removed because of promotion/sales)

http://www.desiringgod.org/ResourceLibrary/EssentialPiper/1593_Dont_Waste_Your_Life/
 
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