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MaxEidswick

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RL Davis‎ALS We are in it together
15 hrs ·
10 Things I Wish I Had Known About ALS
I am not trying to sell something or say that ALS is the same in everyone, I am just trying to help by sharing some things I've learned after the fact. I never knew anyone who had ALS, so I didn't know anything about it except that it would kill you. When the doctor told me I had 2 to 5 years to live and there was no cure, I felt numb and alone. I thank God for the support of my wife and friends.
1) I know now, more than ever, that I get my strength from knowing God and knowing that He has my back. I'm trying to get closer to Him every day.
2) I've learned that I am not in it alone. It effects everyone I know and love.
3) It's very helpful to make notes on how your body reacts to stress and the foods you eat. Our body is God's temple and we should listen to it; our body will let us know when we are eating or thinking the wrong things.
4) Stay hydrated by drinking water, or water with lemon, no sugar or sweeteners at all.
5) Eat all the fresh vegetables you can; if you can't eat, make a juice.
6) Make sure you get all the protein your body needs.
7) Eat as much good fats as you can, like coconut or coconut oil, olive oil, and avocados. All of the oils are good in a veggie drink.
8) Stay as active as you can, but don't overdo it.
9) Be very careful of medicines people will give you to take. I have tried a few and had adverse effects from all of them.
10) Since I've learned that I am intolerant of so many foods, I deserve treats! My treat is dates, garlic, ginger, cinnamon, cayenne, and coconut oil blended together! Not only does it taste good, it fights inflammation.
 
Eating well, managing stress, activity as tolerated being aware of your body of course. I would argue a diet that lets you maintan your weight is paramount , good food is great and high fat is important but do whatever works. Thr implied message against medication is problematic for me. Each of us has to find out for ourselves and there is testimony here that various members have benefited from nuedexta, riluzole, baclofen, antidepressants, anti anxiety medications, pain medications and more. What works for one of us may have bad effects on another. That goes for medication, diet, activity and almost everything else.
Pretty much the only universals truths are things like Max's rules. No one is going to say falls and getting sick are good for us ( or anyone)
 
:arrow:quote: " I know now, more than ever, that I get my strength from knowing God and knowing that He has my back. I'm trying to get closer to Him every day."

wOW! Me, too!
ALS is from and IS the enemy, but my God has unlimited Grace to finish this race!
 
Words to live by......nothing prepares us for the man in the white smock sitting next to you and giving you a death sentence. Although many of us knew we had ALS by the time we get diagnosed......to hear it is devastating.
 
Words to live by......nothing prepares us for the man in the white smock sitting next to you and giving you a death sentence. Although many of us knew we had ALS by the time we get diagnosed......to hear it is devastating.

Couldn't agree more. I had 3 opinions (I was pretty certain before any of them) and I think the last was the most devastating to my wife and me.

Now I cant wait for it to be over. :(
 
Regarding the things you wish you had known about ALS, the first is my favourite. Getting close to God and drawing strength from Him is what helps me bear the tremendous burden of ALS.
Charlene
 
I agree, God is the strength we lean on. He will provide. And there is such peace in knowing something wonderful is waiting when you have finished this race.
I still have a bit of hope that maybe they will find something else when I go to the ALS clinic. I also keep looking for another cause of all the problems that I can bring up at the evaluations. Doesn't seem to be many, as most were weeded out with all the different tests, but, still, does not hurt to look.
 
Faith is important to many folks: In case any new person doesn't know it, we have a subforum dedicated to "Religion + Christians Here for Support."

:)
 
THINGS I Wish I Had Known About ALS:

I wish I had known from the beginning that most doctors and nearly all nurses have absolutely no knowledge of how to deal with paralyzed people. I had to educate--and beware of--every medical person we ever came in contact with.
 
THINGS I Wish I Had Known About ALS:

I wish I had known from the beginning that most doctors and nearly all nurses have absolutely no knowledge of how to deal with paralyzed people. I had to educate--and beware of--every medical person we ever came in contact with.


Why we stay away from the ER at all costs...
 
7 billy hmmmmm :(
 
als was not on my radar,didn't know anyone w/ it or even what ice bucket challenge was. now it's here right on top of me. i ask my higher power for acceptance everyday for the things i can't change and today that works. one day at a time. later chally
 
>I wish I had known from the beginning that most doctors and nearly all nurses have absolutely no knowledge of how to deal with paralyzed people. I had to educate--and beware of--every medical person we ever came in contact with.

Ditto that!
 

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Max, Ever Since I found This site...I quickly came to realize that you are a major pillar among the members. Your always there with sound positive input.....always trying your best to help. Your time in grade alone sets you above us new folks. I just can't help but saying this post has elevated you yet higher for me. I just couldn't imagination how anyone could keep his sanity under this ALS burden without faith in God.

I've believed in God my whole life, but never did anything about it. Never made an effort to spread the word and such. Since learning of my medical condition, and believing that in all things God has a Plan, I have begun a new challenge. I have dedicated myself for the remaining of my days to never pass up a chance to glorify his name. To exemplify courage and happiness to everyone who know me.........and in that way, I pray lead those that would follow toward knowing and accepting him as their savior.

We're warriors. I've always like the idea of good's triumph over evil.

Anyway...............thanks for being here Max.

May God Bless Us All....................Glenn
 
>Anyway...............thanks for being here Max.

:)
 

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