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quadbliss

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Diagnosis
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US
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Benicia
Hi bala80,

I am not going to try to convince you to start praying to God, or talk you out of your decision. I would however like to recommend caution in executing your choice too soon.

In my case, I was saddened and frightened by the fact that I would die an unpleasant death very soon. One day I was elated when I realized that ALS was not a death sentence. I realized that if I chose to vent, etc., I could live a lot longer. This could be a miserable existence if my vision stopped there. But I also saw that I was living the same unconscious life that most of us live. I knew there was something more. I set out on a path of personal growth. I am happy to report that 9 years after diagnosis, paralyzed from the neck down and vent dependant, I am living a deeply fulfilling, joy filled life. If I had made the decision to end my life prior to this paradigm shift, I would never have known the full potential of human existence.

I respect your decision, but realize that your perspective could change. Please don't surrender too soon.

Mike
 

Al

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7,960
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The above post was in another thread but I thought it belonged here as well. Mike exudes hope and inspiration to us all.
AL.
 

paula-jane

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Lost a loved one
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Ontario
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I have to share...
I rushed home from spending the entire day looking after my mum (who is end stage ALS) to pick up my husband from work and then rush to my girlfriends to pick up my youngest son. Reaching the home of my girlfriend, we were met at the door and invited in for a drink, which lasted most of the evening. While we support my mum... my friends support myself and my husband and our children (because they have been close friends to our family for 20 years). While at my friend's I'm asked all of the usual questions about my mum and her illness. Tonight, we had the added sadness of losing my brother in law to a massive heart attack. I was asked what would I have preferred for my mum if I could choose... quick or the slow illness? wow... what a choice. With ALS, I love the chance to look after her although she suffers... the other way a heart attack she wouldn't suffer, but, I would. In the end I choose for a quick death and for my mum not to suffer. What is the story of hope here?.... we just never know... live life now.. in the best way one knows how and for the reasons that make sense to that person. Life really is that personal. I'm grateful.. no matter how badly off we think we are.... someone.. somewhere else... has it worse.
 

CindyM

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I'm grateful.. no matter how badly off we think we are.... someone.. somewhere else... has it worse.

This is one of the reasons I love this site. My daughter says I should stay off the internet since she believes I am fine until I read about some condition and then she thinks my anxiety leads me to believe I have that symptom. LOL. (I am not our family’s hypochondriac.)


But what really happens is that my docs tell me I am sick and I wonder what the future holds and come here to see that people manage full and interesting lives and they are a lot further along than I am in this journey. So thank you all. Quadbliss, or was it Zen or Andres, said it best: the odds are 1 or 2 to every 100,000. Somebody has to be that one or two. It is really that simple. Cindy
 
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mamaoftwo

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Mike - when I originally pm'd Al about creating a section like this, you were the example I used. You give so much hope to those diagnosed and awaiting diagnosis. Your positive attitude is a wonderful and very welcome part of this board. If only people could become so enlightened without having to become sick first. You are truly an inspiration to all of us. :)

I would also love to see some of the other 5yr + club PALS posting here. I know there are some out there who read but do not post often. Here is a chance to tell your story. Do you have slow progression? Are you more than 5yrs past diagnosis and still doing ok. Are you vented like Mike but still leading a happy, fulfilled life - tell it here. Many many people (PALS and CALS) want and need to know that this is possible.
 

Icanmanz

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Joined
Jul 14, 2007
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PALS
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Uni
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Texas
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Tomball
Quad, those grandbabies are adorable! They look so healthy! Cuddly babies!

Irma
 

quadbliss

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Messages
392
Reason
PALS
Diagnosis
07/1998
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US
State
California
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Benicia
Thanks Irma. I agree! :-D
 

Marjorie R. Wilcox

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Joined
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660
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10/2007
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US
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New York
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Richmondville
Rick, my husband, was recently diagnosed but he has had symptoms for years. I guess he didn't realize he was different from anybody else in that he thought he just had a cold, or a little imbalance, or a little loss of memory like his dad did, etc. I would say he has "been coming down with" ALS for about 10 years. He has been taking Mucinex in the mornings for years, staggering at times when he walked on grass or uneven ground, not backing up the car well, and also using his arms instead of his legs to pull himself up to a stand. It was only the recent deterioration of the muscles in his calves that led him to tell his physician and the tests began. So, do we consider the length of time he has had ALS this year, or from years past? His mother had something diagnosed as MS, but it is now believed she had ALS. She had a very slow progression of nearly 40 years. Rick has an abnormal CK, an abnormal EMG test etc. ... is now having a small amount of twitching in the evenings (of his legs) and he might cough when he laughs. We are newly married and very happy. You must take the good with the bad. I snuggle up to him with the BIPAP machine on and the fixator on his right leg. Oh, I forgot to mention he was in an explosion accident this summer and has had five surgeries thus far to save that leg! We are happy, and so much in love! We will meet whatever comes, together.... and in each other's arms. Marjorie
 

CindyM

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Hello Marjorie- I love your description of snuggling with the bipap. It brought a smile to my face! can you tell me what is a fixator? This is a term I have not heard...Cindy
 
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