What WOÕLD you do if...

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jennibf

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What WOULD you do if...

You found out that you definitely had ALS?
 

jennibf

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I'll answer, too, because honestly, I do think about it. I've been down this road with heart failure and remember being told that dying of congestive heart failure was like a slow drowning. Happy thought, huh?

I think of this just like I think of writing a will, or signing an advanced directive. I think we should all plan for the worst but hope for the very best.

So, anyway, I'm good at distracting myself until late at night. Something about the darkness and quiet. Neither does it help that my uncle died so recently in hospice. Although I would try to keep hope as long as humanly possible. I wonder how close they are to finding a cure or a better treatment?

I guess I would like to think I would be strong for my family. I would want to look for every way to slow the progression (another reason I would like an early diagnosis if it were to be ALS, although it's just PNS). I would ask for every way possible to slow things down.

Then I would hang out with my family as much as possible. I would put together scrap books and when calm enough, write letters, record my voice, etc. for later.

I would try to have as cheerful an attitude as possible, even though, again having been there, I know I would need to go through stages. I would try not to ask why me. Because, after all, why not me. I would try not to blame myself or anything else...and I would try not to have pity parties and if I did, I would go to counseling to help deal with it. I would encourage my family to go to counseling.

Just curious if you all think of this and if so, what would you do?
 

Spacemonkehh

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I'll answer, too, because honestly, I do think about it. I've been down this road with heart failure and remember being told that dying of congestive heart failure was like a slow drowning. Happy thought, huh?

I think of this just like I think of writing a will, or signing an advanced directive. I think we should all plan for the worst but hope for the very best.

So, anyway, I'm good at distracting myself until late at night. Something about the darkness and quiet. Neither does it help that my uncle died so recently in hospice. Although I would try to keep hope as long as humanly possible. I wonder how close they are to finding a cure or a better treatment?

I guess I would like to think I would be strong for my family. I would want to look for every way to slow the progression (another reason I would like an early diagnosis if it were to be ALS, although it's just PNS). I would ask for every way possible to slow things down.

Then I would hang out with my family as much as possible. I would put together scrap books and when calm enough, write letters, record my voice, etc. for later.

I would try to have as cheerful an attitude as possible, even though, again having been there, I know I would need to go through stages. I would try not to ask why me. Because, after all, why not me. I would try not to blame myself or anything else...and I would try not to have pity parties and if I did, I would go to counseling to help deal with it. I would encourage my family to go to counseling.

Just curious if you all think of this and if so, what would you do?


I would write a full detailed story about my life; my views on the common things in this world etc for my family to remind them what kind of person i was. The thoughts of death.. it scares me out. It makes me feel empty because im not religious and i do not believe there is life after death ( although i do believe in the M theory.. that there are multiple worlds or 'dimensions' with different outcomes so things get repeated over and over again)

The undescribeable emptiness causes some mild panic attacks sometimes, which makes me think of an ALS patient.. it must be horrible for them to just lie in the hospital all day where they can just blink with their eyes and wait to get disconnected from the breathing machine.. OK, this sounds heavely unrespectful.. but you know what i mean :roll:
 

ZenArcher

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All I have to say is if a diagnosis of ALS is going to make you change the way you decide to live your life perhaps you should've looked at your priorities long ago. From the day we were born the only absolute inevitability has been that someday we will move on. Everyone knows it whether they accept it or not. Why then should the diagnosis of ALS suddenly make this fact a surprise? Live your life as best you can. Try to be kind, try to inspire and try to do the things you've always dreamt of doing.

This is one of the things that gets to me with everyone coming here and thinking they have ALS. It's one thing to look for stories or symptoms but it's another to then argue with the answers. I have ALS and although there are things that are now more difficult or in some cases impossible ALS does not have me. I have a terminal illness which in the big scheme of things means nothing. I could get in a car accident tomorrow as a matter of fact as a PALS I'm about 8 times as likely to be killed in a car crash as from ALS. Should a diagnosis of ALS change how I feel about my wife and kids? No. Should a diagnosis of ALS change the way I treat people? No. Should a diagnosis of ALS changes my hopes and dreams? No. Why then should it change how I live my life? I believe the following story says it quite well.

A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar he shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.'

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand.

The students laughed.

'Now,' said the professor as the laughter subsided, 'I want you to recognize that this jar represents your life. The golf balls are the important things---your family, your children, your health, your friends and your favorite passions---and if everything else was lost and only they remained, your life would still be full.

The pebbles are the other things that matter like your job, your house and your car.

The sand is everything else---the small stuff. 'If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

'Pay attention to the things that are critical to your happiness. Spend time with your children. Spend time with your parents. Visit with grandparents. Take time to get medical checkups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first---the things that really matter. Set your priorities. The rest is just sand.'

One of the students raised her hand and inquired what the coffee represented. The professor smiled and said, 'I'm glad you asked.'

The coffee just shows you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend.'
 

jennibf

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Jeff,

You have a great point. I didn't mean to offend by asking this question.

I am going to do those things that I mentioned regardless of what my health is like. I am not going to have to change the way I treat people and neither am I going to change my priorities. I already DO spend almost every second with my family (even working from home these days), I am already kind and I already have a faith. You mentioned car wrecks. I have been in a couple. Afterwards I thought about how lucky I was, it was frightening and it brought back home the reality of my mortality.

I apologize if you found my question offensive. I keep re-typing this sentence, trying to justify and explain but basically it was just a question. I view it as this- a POTENTIAL terminal diagnosis of any sort-cancer, congestive heart failure, any progressive disease is like an awakening. I did think I was invincible when I was a teenager :)

And thank you, Jeff, for sharing that. I am going to save it.

Blessings to you.

jennifer
 

ZenArcher

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I'm not in the least bit offended. There is no need to explain yourself. I just wanted to share my point of view and crossed into another what I believe to be pertinent area while I was at it :wink:. Asking questions and sharing points of view is how we learn.
 

BethU

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Hi, Spacemonkehh ...

I would write a full detailed story about my life; my views on the common things in this world etc for my family to remind them what kind of person i was.

Why aren't you doing this now? Why do you need a "dead"line (sorry for the pun) to do these important things ... preserve the memories of yourself and your family to connect with later generations and remind them you were alive and tell them who you are?

ALS patient.. it must be horrible for them to just lie in the hospital all day where they can just blink with their eyes and wait to get disconnected from the breathing machine[/I

I have found some of the most intense "spiritual"? "perceptual" ... don't know how to explain it ... "interior" experiences of my life in the few months since I've been diagnosed. Life is not all about working out and running marathons ... We all have vast interior lives of thought and feelings and emotions, and these go on whether we can move our limbs or not. You don't know how deeply alive other people are inside, despite their limitations. Don't write people off ... don't write being alive off.

Speaking of which ... your thoughts and worries about this subject should be making you savor every second of your life right now. Why are you dwelling on death when you have so much life to live today? There's plenty of time to worry ...
 

caroliney

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Hi Jennibf,

Actually being a Caretaker and traveled this disease first hand, I would plan my steps before the disease progressed.

After educating myself, would take the necessary steps for preparation of my future journey with ALS. This may be the only advantage to this horrible disease, you can prepare your future somewhat before it robs your ability to use your muscles in your body.

Than, I would take each day as if it were my last, enjoy my family and friends to the fullest.

Last but not lest, I would travel to the Whitehouse to inform every known soul there how horrible this theft (ALS) is and try to educate every one possible that a cure needs to be found today! It is ridiculous to allow another human to travel another year with ALS in this day of technology.

God be with each of us to find the strength and wisdom for a cure today!

Hugs & Prayers,
Caroliney
 

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Hi Jennibf,

Actually being a Caretaker and traveled this disease first hand, I would plan my steps before the disease progressed.

After educating myself, would take the necessary steps for preparation of my future journey with ALS. This may be the only advantage to this horrible disease, you can prepare your future somewhat before it robs your ability to use your muscles in your body.

Than, I would take each day as if it were my last, enjoy my family and friends to the fullest.

Last but not lest, I would travel to the Whitehouse to inform every known soul there how horrible this theft (ALS) is and try to educate every one possible that a cure needs to be found today! It is ridiculous to allow another human to travel another year with ALS in this day of technology.

God be with each of us to find the strength and wisdom for a cure today!

Hugs & Prayers,
Caroliney

Here, here.... on your last point, I've long thought and advocated that ALS advocacy needs to become like what AIDS advocacy was in the 80's; that was so successful (mainly because it succeeded in getting hundreds of times the annual federal funding; not to mention much more private funding). I've been watching and even participating at times in ALS advocacy since the mid 80s, and, unlike AIDS advocacy like ACT-UP, it has not been characterized by the urgency the situation calls for, the urgency the AIDS and later breast cancer activists demanded, not asked, for. I realize this is not an advocacy forum, but since you mentioned it.

BTW, I like what others have said in this thread, about how to live with a diagnosed or with uncertainty about a diagnosed, or even if presumably healthy.

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Jeff,

Interesting comment. Having worried about ALS off-and-on over many years, I've thought about these questions many times - how I would live my life if I had ALS, with fast progression, slow progression, etc. I can't say I've come to any good answers though. Consider your comment: "Should a diagnosis of ALS changes my hopes and dreams? No. Why then should it change how I live my life?"

For where I'm at in my life (or where I'm not at) I don't see how ALS would not change my hopes and dreams or how I live my life. I know the parable you posted (Stephen Covey uses this as an example, among others) and think I see your point and perspective; I'm just not sure what it would mean to implement it. It would make more sense to me if one's life is already somewhat satisfying, and the goal becomes to continue to value and appreciate those things, e.g. wife, kids, as the things you mention. In my case, my life is future-oriented more than present-oriented; i.e. my hopes and aspirations for what I want it to be, what I want to accomplish, obtain, create, develop; much more so than what I have now or have had. So I wonder if the perspective you suggest - whether one has ALS or not; whether one is dying or temporarily healty - would apply in this case, and if so, how.

Eric Fromm, in one of my favorite books (To Have or To Be?) wrote that it is not death so much we humans fear; rather the thought of dying without having lived fully. For myself, I feel I've just started taking small steps towards beginning to fulfill those dreams and goals. I feel I still have a lot of unfinished business to do here, if I can, if I will be around. Perhaps this is a warped perspective; an unhealthy discontent with life as it is or something. I think maybe this has something to do with why so many of those who seem to worry about ALS are quite young and statistically the least likely to develop it. There is the fear - the added fear - of dying young; dying without having fully lived, without a chance to pursue love, career, one's dreams or one's contribution. Though not so young anymore, I think I share a lot of this. Does this make any sense?

BTW, for a long time, my ultimate hero has been Stephen Hawking; precisely because he didn't let even ALS get in the way of his dreams, his work, getting married, having a family, creating a life - living fully, and contributing immensely, despite what ALS was doing to him (albeit at a very slow pace).

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BethU

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OK, I can't stay out of this. You say, In my case, my life is future-oriented more than present-oriented; i.e. my hopes and aspirations for what I want it to be, what I want to accomplish, obtain, create, develop; much more so than what I have now or have had.

What is it you want to accomplish, obtain, create, develop? Why can't you do these things now? What is it that is preventing you from living the life you daydream about? Your fear of ALS? After 20 years, is that really still your excuse for not trying to accomplish the things you dream about?

Sorry to psychoanalyze this, but a fear of ALS seems to often be a great cover for deeper fears (fear of failure, fear of commitment?) and anxieties.

You're a bright guy. Here's my unsolicited advice: Pick one of your daydreams ... just one ... and make it happen. Devote the energy to it that you are expending on ALS, and I bet you can accomplish some of your dreams. Maybe all of them!
 

CindyM

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Sorry to psychoanalyze this, but a fear of ALS seems to often be a great cover for deeper fears (fear of failure, fear of commitment?) and anxieties.

Beth- you opened my eyes to something I'd often wondered about. When my doctors first raised the possibility, my first thought was, "oh, shoot! I am not ready."

But then I got used to my symptoms and went back to my life, such as it was. :smile: Thing is, I always trusted my body. I figured people who came to the conclusion they were very sick, all on their own, probably did not trust theirs. I never thought about deeper fears.

But I think some of it is age-related. I always knew (didn't everybody?) that at some point I would lose physical strength as I got older. So to be losing gross motor skills at the age of 60 is not so scary. Maybe it woud be different if I were younger.

Last point- Jeff is right. The question is not "What would you do if you knew you had ALS." The question is: what are you going to do with the rest of your life?

Today is the first day of it, after all.:smile: Cindy
 

Zaphoon

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Well, my 2 cents (not worth a lot):

Your life changes due to loss of mobility. Being no longer ambulatory, or less so, many people leave the work force. This now leaves a huge empty space of unoccupied time.

I think in these scenarios, life changes in how you now fill your time.

You would have time to do those things that perhaps, there was no time for previously.

To me, its more a question of how I would best use the time now open to me.

Kim
 
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awieleba

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Yes I agree,

MY issue of a diagnosed has made me better TODAY, not about what I can be in the future. I have LEARNED to live in the present and be thankful for all my life. I enjoy EVERY minute of evey day. I am better at being there for everyone. I can lay on the floor with my kids and play and kiss and not worry about what I should be doing or what i need to do. I use to be obessed with my tennis and my success or career. It means nothing to me ( I do miss tennis) all that matters is my realtionships and that I ment something to people. NOt because what I did or made at work or if I scored great at a match, but that people knew I loved and cared for them. My faith has helped me in ways that no can believe.

I have made scrap books and started journling, wich is NOT my thing. The only thing that makes me sad is that my 3 young kids need me and I want to be there for them. IT is the only thing that breaks my heart, they are so young. They do not fully know me. Every child wants to know thier mom. Iknow we will all die, NO one is getting out alive. BUT, I want my kids to know me. I do believe that I will be with them after I pass.

I did just get approved for a life insurance policy. I am happy about this! I thought with all my docters and sickness it would not happen but for $450 a year we will get $500,000 if I pass. I know........not nearly enough what I am worth.../LOL

If i ever get this DX, I will grieve but I will also thank God for my life and all that I have been blessed with. MY life has and IS PERFECT! I will be well cared for.

april
 

CindyM

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Hey April you are right- you are wroth much more than that! :smile:
 
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