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.
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.