Long term ALS survivors

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mamaoftwo

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I just wanted to say that in the past 48hrs I have had 2 emails - or rather one email and one pm from PALs who have lived for 14yrs and 16yrs respectively with ALS. One of them isnt even on a vent. I dont want to post names for privacy reasons. If they wanted to come here and tell everyone how well they have done (relatively speaking of course) despite ALS, then they can. But for those of you who are convinced that the 2-5yr prognosis stands true for everyone, well it just doesn't. So chins up people - some of you will live much longer than you think. :)
 

caroliney

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ALS is like a snowflake.

Yes you are correct, no one really knows life expectancy for ALS. This dreadful disease is like a snowflake, different forms.

Even the doctors do not understand what, when, or where, this disease may go for whomever. It is a clinical diagnosis.

ALS was first identified in 1869 by the noted French neurologist Jean-Martin Charcot, as a motor neuron disease. Lou Gehig first brought national and international attention to the disease back in 1939, when he abruptly retired from baseball after being diagnosed with ALS.

It is so sad after all these years, still we do not know the cause of ALS.

http://capwiz.com/alsa/home

Click on the above and lets do something for all ALS patients today and stop this thief. Insert your zip code and let your Senators know how you feel about the progress of ALS. It is time to have more understanding than a clinical diagnosis of a disease that is destroying so many lives daily. We can make this change by being heard today.

God Bless and Many Prayers for All,
CALS,
Caroliney
 

Mike27

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Hi all,

I was dixed in '93 at age 30. The docs gave me the standard "2-5 years" scenario. I don't need to tell you folks how that feels!

After going through bouts of depression and anger I finally reached a point of acceptance. (My wife deserves a medal for sticking with me through some of my tantrums!)
I have accepted that ALS is a part of my life now, not the whole life, just an annoying part that is as significant as I allow it to be.
The war is over, now I can be at peace.

That doesn't mean I'm in denial. I've just adapted to that which has come into my life and improvised means around it.

We all come to that fork in the road-we can sit on the couch with the TV remote and wait for the end or accept, adapt, improvise and overcome. (I actually got that last part from Clint Eastwood in 'Heartbreak Ridge'...see? You can learn a thing or two from the movies!:wink:)

For a long time people would say to me that things happen for a reason. So I would respond "Then what possible reason would this disease happen to me?"
I thought long and hard about that...and it came to me, through my kids. I have been showing, by example, how to deal with adversity in a positive manner. I got my mind off of how 'I'(ego) was affected by ALS and turned it around as an on-going lesson for my kids that although the body is weak, the spirit can never be broken!

Positive mind. That is my theory in getting through this journey.
We have ALS. There is no getting around it and we don't have a choice about that. The choice we do have, however, is how spend the time we have left-laughing 'til our sides split or in a pit of despair and depression? I've been to the pit, I ain't going back! I'll take the split sides thank you!

Cheers!
 
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mamaoftwo

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Thank you, thank you, thank you!

That is what we need around here!:-D
 

kelly

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spirit

Mike...I love your spirit...keep fighting! I want my hubby to read your post. He can learn from you.
 

caroliney

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A Toast to you!

Mike,

You have the right frame of mind, so continue to live each day with that spirit. Love to hear this type of atitude.

You are a great encourgement, example, and a fighter.

God Bless,
Caroliney :-D
 

esrich

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Yes, some people can live a very long time with ALS. On another forum I belong to there is one guy who has had it for 23 years and another woman who is 82 and was diagnosed in 1959. Yes, 1959. There is hope. Keep a positive attitude and enjoy each day. Laugh a lot. Live a lot. Enjoy the time we have whether it is one year or 50 years.
 

patricia1

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Mimic ALS

How do we know they really have the right DX I think there is alot of mimic ALS out there and hopefully alot of us have that one I have als 8 1/2 years.there is alot science doesnt know about MND. people living 25 yearswith so called als is proof So enjoy the days you have and never give up hope. Pat
 

Lorie

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ALS Advocate

I am an ALS Advocate and the Sister of Brother with ALS. I am signed up on everything there is to support ALS. And I am involved with sevral ALS Associations. I will continue as long as I have breath in this body.

I know someone in my community that has had ALS for 25 years!

Lorie:-D
 

Mike27

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I am an ALS Advocate and the Sister of Brother with ALS. I am signed up on everything there is to support ALS. And I am involved with sevral ALS Associations. I will continue as long as I have breath in this body.

I know someone in my community that has had ALS for 25 years!

Lorie:-D
I'm glad mamaoftwo started this thread. I find these examples very uplifting!:-D
 

JenniLee

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thank you

How do we know they really have the right DX I think there is alot of mimic ALS out there and hopefully alot of us have that one I have als 8 1/2 years.there is alot science doesnt know about MND. people living 25 yearswith so called als is proof So enjoy the days you have and never give up hope. Pat

i have wondered the same thing; thank you for your hope. if you dont mind, how have you lived with it so long? every change sends me into a depression downward fearing its all over. what r ur physical restrictions?

love,
jen
 

patricia1

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hi Jennielee I did very well for 7years with only slurred speech and little arm weakness last year. Now I am getting worse, I have no use of my arms and some weakness in fingers and hand. My walking is getting slow and I am very cautious on the steps.
I do get depressed ,but I always say it could be worse. I am still here My breathing and swallowing is still good. And as long as my eyes are still open to enjoy my grandchildren and family I am blessed. Pat
 

Omar

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Hey guys,
What a nice optimistic thread..
Thank you Mamaoftwo and very well said Mike
 

CindyM

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I agree, Omar. BTW, nice to hear from you again. Hope all is well. Cindy
 

Omar

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Thanks Cindy,
I missed you too ;) I've been traveling for a while and still
hope u r also doing ok
 
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