Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

I am not sure if the title of this is the right one, so this will have to do. LOL.

 

The following is only our way of dealing with, or accepting, ALS and what has served us well so far.

 

The best advice I can offer is not to fight this disease. All the anger, bitterness or denial in the world will not change what is happening. As a matter of fact it will only make things worse and speed up the progression. Making everyone’s life miserable.

 

One thing I have noticed over the years is that the long term survivors all have one thing in common - a positive attitude. They have accepted their diagnosis and got on with their lives. The people who are constantly angry, and mad at what has happened, don’t seem to last long.

 

Being a very pragmatic person I don’t lose sleep over the things I cannot change. I have learned that all the anger and bitterness in the world does not add one day to your life, as a matter of fact it shortens it. So I choose to accept and move on.

 

Do I like what is happening? No.

Would I choose to not have it? YES.

Can I change what has happened? No.

So I don’t worry about it.

 

We have to be careful we do not make the lives of our loved ones, who are caring for us, unbearable. It is not their fault we have ALS. So let’s not take it out on them. We don’t want them to wish we would hurry up and die! I want to make the lives of my loved ones as enjoyable as possible. I want them to “want” me around. I want them to have good memories of me, not bad ones.

 

Another thing I have always tried to do is anticipate what will be needed, in the future, and prepare for it before time. I have tried not to push the bounds of safety.

 

Example:

- I quit driving before it got dangerous.

- I started using a walker, then a wheelchair before I fell and broke something.

- Our bathroom was made accessible before it was needed.

- Installed lifts. Etc.

 

These were all done well before they became necessary.

 

This way no stress was put on my wife and she did not have to worry. I have tried to stay ahead of the progression and make life as easy as possible.

 

Neither one of us likes what is happening but we have accepted it and enjoy each day. One day at a time!

 

We don’t dwell on the things I can’t do anymore, we focus on what I can do and remain thankful for them.

 

I try to maintain a positive outlook at all times and not think about the future.

So far this has served us well.

 

We also have a strong faith in God and He has graciously comforted our hearts and given us peace.

 

John 14:27 Peace I leave with you; My peace I give to you; not as the world gives do I give to you. Do not let your heart be troubled, nor let it be fearful.