Life Span

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AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
538
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
After some reflection I came to a conclusion that I am sure to which others have already come.

Life is terminal. Diseases are not. They are just accelerants.

A disease is like taking 12 courses at college each semester and cramming for the exams.

Graduation day comes earlier for some of than for others.
 
I believe life is what you make of it. It is not about quantity but quality. Yes, life ends for all of us. Living while you are alive and not looking at the clock is what I am doing.

My belief is that I will do what I want, while I can and what I didn't get done today, I will strive for tomorrow. I will go over it, under it, around it or through it to accomplish my dreams and goals. I live in love, peace and truth and share with those around me. I strive to leave the world better than I found it.
 
EXACTLY :)

What my analogy was trying to say is that we have to live more life in less time, so live it!
 
That is a good analogy.
 
Afraid&Alone you have written the thoughts I have been having since our diagnosis perfectly, thank you for putting it into words so eloquently!

Here's to living as much life today as possible!
 
Tillie, I don't think I've ever been called eloquent.

Check that off the list!
 
So very well put. My Tim says that everyday is a gift, and that this disease has made all his senses greater. Everything that he experiences is enhanced, and he is grateful for that. So many die suddenly after taking things for granted and wasting so much time. He is such a gift to me, as I get to experience these observations through him.
 
I have learned over the last 8 months since my husband was diagnosed not to wonder what will come next. This disease is very untelling and unforgiving. He was diagnosed Jan 31 and in <8 months he can no longer move any part of his body. We are blessed that he can still speak and eat, but sadly his respiratory status is deteriorating. Hospice began this weekend and so another chapter. I think if there is any good thing one can say about this disease, it's the people you meet along the way and now hopefully one day I can pay forward all of the kind acts that have been given to us.

Life is not about tomorrow, but what you do with today.
 
Being given ALS is being given a death sentence that is carried out a little at a time until " due date"

Just when my wife and I doubted the death sentence, another part of her ability to function would be taken from her.

We are not " gloom and doom", but ever since the diagnose of ALS we are believers that a death sentence was given.

The happiest day was early on when my wife squeezed my hand and said.............." I am not afraid to die"

That probably was the last words she ever spoke that I could understand.
 
the only moment any of us are promised is the one in which we are in, and the only thing that matters is how we are treating the person currently next to us.
we are living with ALS
 
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This is something I really struggle with. Yes I do understand that life is terminal (well put!) & while I admire the wisdom & strength of all those who say variations of "I am grateful for being given the chance to let those I love know how much they mean to me.. or ALS makes me live appreciating today" I just cannot manage to bring myself to that place of acceptance. I think I will always be angry at this disease, at the endless chipping away at the person at the centre, the time stolen from all of us. I think this is the worst disease that could be unfortunate enough to be diagnosed with and I can't ever see myself being able to say anything remotely like the above statements. Is this just my personality that I have a glass half empty view of life? I feel I am a million miles away from where a lot of folks are.
 
Don't misunderstand, I am NOT happy or accepting. I'm pissed, but I'm a short-timer now, so I have to adjust.
 
My sister was diagnosed last August 2012. At first it seemed to be a slow deterioration, but these past couple of months things have started to change rapidly. Right now she is at a skilled nursing facility having spent weeks in the ICU. She has a DNR in place (she is just 72) and does not want to be intubated or have a feeding tube or ventilator. She's been through a lot of complications from this: bleeding ulcers, a TIA, a spike in BP, a bowel blockage and now she is on a bipap machine for most of the day. I do not know what to expect, she really seems to want to go home but does not want Hospice as she is very afraid. I feel so bad for her as her husband is also in a wheelchair (MS) and cannot really help her but wants her home too. Any and all advice would be very welcome.
 
No reason to be afraid of Hospice.
My wife has been on Hospice since February 2012.

I don't know where we would be w/o them.
 
Mushy, If I'm not being to rude or insensitive I would start your own thread because your hijacking A&A thread and I still want to reply to that line of thought as well as yours. See the button at the top right.
 
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