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tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
These two terms, Fighting and Not Giving Up, are thrown around a lot with this disease and because of another post I have been giving it considerable thought. For me the progression in my limbs and head have been less pronounced than my breathing. Apparently have breathing onset make me "unique" but causes me to have to use a chair and keep my activities at a minimum much as though my limbs had been the first to go, as I cannot breath from even doing the smallest activity. In the last three or four months I have noticed a rapid decline in my limbs and head though as well. And my wife is noticing signs of FTD that I noticed months ago, but that she now sees too.

I have mad the decisions not to use a feeding tube or to vent, the only thing I use is the BiPap. This of course opens me up to the accusations of Not Fighting and Giving Up. I have fought all 49 years of my life. I came from a very poor welfare home, left home due to an abusive step father at 14, worked very hard at 2 and 3 jobs, became a sponsored runner and triathlete, bought and sold multiple homes and a business, and became the best in the work I did, known across the country as the best in my field. None of it was easy - I fought every step of the way and all of it hurt and required sacrifice.

Now this disease. When people suggest that I am not fighting, or have given up, a couple of questions come to mind. First is there a cure in the near future that would make me want to drag this out? Second, if there is a cure will it reverse my symptoms and make be the man I once was? From everything I have read and been told the answer is no.

So as I am a functional vegetable, why would I want to continue this way, knowing that it is only going to get worse? Don't miss understand, I am not suicidal (although I suppose I would be a fool to say that at times I do not wish it would just be over). As I progress I will only cause more hardship to those I love and more grief. I have always been and all or nothing kind of person and at this stage it seems like nothing is the better choice as I will never have it all again.

For my family it seems it would be better that they start the healing of me being gone -the sooner the better. I know many CALS do not like these conversation and I apologize, however the reality of living with an ALS patient is damn near impossible. I long for them to have a normal life again, even if it is without me.

So these are the choices I make; no vent, no feeding tube. I also choose not to take any medications, I want the pain, I want the torment, and I want the fight. If I cant out live this b1tch at least I can let her give me all that she has and stand up to it taking square on the chin. I will not win this time, and I hate loosing, so I will feel everything that is thrown at me to its fullest. This is how I fight, this how I do not give up. For some it is not enough, for me it is all I can see.

I use to go to the beach when the waves where coming in to shore with all their fury and I would stand there, legs spread wide -chest puffed out -muscles clenched, and try and stand fast against the beating that they would give me straight on. Of course I would get knocked over and pushed down, but then I would get up and let them beat me some more. I would do this for hours. I suppose had I stayed there long enough they would have drowned me and washed my body out to sea.
 
Peter. Is it wrong to say I enjoyed reading that? To get to know YOU...have one of those conversations we generally only have with people who understand...and maybe I don't understand (I'm not terminal) but I am holding your hand and hearing, not just listening, to what you are saying.

I agree with the fact this disease is individual, and only you can make the choices best for you and your family. That's one thing I pray this disease doesn't take from you, your ability to make decisions.

As for those waves taking you. But if they had taken you, you never would have met me. That makes me sad to think about being here and not knowing you.

You, as always, are in my prayers.

Janelle xx
 
Dear Pete, you expressed your thoughts beautifully- and I won't argue with your rationale because I agree it is NOT giving up. Do disagree with "I will not win this time". Actually, by making your own choices you remain in charge, a winner again. Your attitude is one of courage and has stood you well over the years.
Will life return to normal for your loved ones? Never. There will always be a hole in their hearts but that is what loving is all about if you lose the one you love. So if you will forgive some advice from someone with that hole in her heart, leave messages for your family for them to find when you are gone. I would have so treasured finding a last " love note" among his things. Or prepay for flowers to be sent for a few years on your anniversary if you are able. Anything to remind her of your love. I am sure you are the love of her life, because from reading your posts, you are easy to love with your indomitable spirit. Hugs always. Donna
 
hey pete, i always like your post and can relate to how you were brought up and gone through life to this point. i too am going without meds and have a similar end of it request. the only thing i can add is "just when i think i know the answer, they change the question!" later chally
 
>Dear Pete, you expressed your thoughts beautifully-

Ditto that! 4 me 2!
 
>so as I am a functional vegetable, why would I want to continue this way, knowing that it is only going to get worse? Don't miss understand, I am not suicidal (although I suppose I would be a fool to say that at times I do not wish it would just be over). As I progress I will only cause more hardship to those I love and more grief. I have always been and all or nothing kind of person and at this stage it seems like nothing is the better choice as I will never have it all again.

For my family it seems it would be better that they start the healing of me being gone -the sooner the better. I know many CALS do not like these conversation and I apologize, however the reality of living with an ALS patient is damn near impossible. I long for them to have a normal life again, even if it is without me.

This is how I feel as well, Pete. My fight is to make today the best it can be for me and my family. No promises after that. Thanks for sharing. This is all so hard.
 
I am new to this board, but I get it. I live in Oregon, and already am making plans to deal with end of life issues. I don't know where my line is, but lying in bed being that "functional vegetable" isn't on my agenda. As I've told a few people, I am a fighter too. I'd fight this stupid disease if I had a chance of winning. I don't see that with ALS...my trajectory has been fast, it's scary, and I don't want to do it.

I think being pragmatic and practical are every bit as smart as being 'brave". I don't want to do that to my kids (who are early 20's), I don't want to bankrupt myself knowing it's not getting better....you certainly have my support and agreement because I'm going the same way. good luck, this disease sucks
 
Pete........man your story really hit home with me. I am 10 years older than you, but our lives are similar in so many ways. You are not unique in many aspects. There are so many phases of our progression, and so many of us are right where you are right now.
You are not alone in this physical and emotional war.....
Just curious about what signs of dementia you are showing?
Not a day goes by that I don't fear giving up. So far I have to many people to take care of, and those that hate me keep me fighting...I don't want to make their day.
 
The major FTD symptom that shows is I stutter over words. They will often be in my mind but I start to use different words and I cant seem to get my mouth to get out the one in my head. I also hesitate with things constantly like when I type. I have to stop and consider what I am trying to type before it gets out. The more stressed I am the worse all these things are. On top of that I am just foggy. None of this is normal for me and I have to reread and rewrite things until they are close to right.
 
Pete, I was very touched by your story and I appreciate how informative it was. Thanks. It was an important post.
 
The major FTD symptom that shows is I stutter over words. They will often be in my mind but I start to use different words and I cant seem to get my mouth to get out the one in my head. I also hesitate with things constantly like when I type. I have to stop and consider what I am trying to type before it gets out. The more stressed I am the worse all these things are. On top of that I am just foggy. None of this is normal for me and I have to reread and rewrite things until they are close to right.

Dammm...I must have it to, you just described me to a T. If it wasn't for spellcheck you guys would think I was Davbo's big brother!
 
Well, Mark, at least your sense of humor is still intact!
 
tell them brother :)
 
Pete, this is such an important thread.

The way I see it, fighting and giving up are 2 extremes. I have never believed in either as being an approach that would work for me.

Acceptance is the middle ground IMHO.
IIWII.

I know that I would draw definite limits on what constitutes my own QOL. The line may be very different for each individual, and that is why it is so hard to discuss. If my line is in a different place to yours, we are both right for ourselves.

I don't believe fighting at all costs is always healthy. We have had CALS here that gave themselves 24/7 to PALS that were in living hell. I believe that a PALS and CALS need to be able to talk openly about what constitutes QOL for them both, and make informed decisions. It's incredibly hard, I know I've been there. But I also know that I've always had peace as a past CALS about decisions on how far interventions were to go, and how I cared for Chris.

I talk to a LOT of past CALS and this is not always the case.

Your honesty here is invaluable Pete. It is not aimed at anyone else, it is opening up your own inner battle with the monster and I thank you so much for doing that.
 
I feel like u took the words straight from my mouth,except for the pain I take pain meds.I feel i have enough to deal with als without all the pain.
 
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