How bad does it need to be before you would consider ending it?

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landofsmiles

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Joined
Aug 16, 2010
Messages
90
Reason
PALS
Diagnosis
09/2010
Country
TH
State
Phuket
City
Patong
I am only recently diagnosed but doc says I am probably 2 years into this horrible disease already. I've been thinking a lot about my future and think once I lose the use of both my legs and arms that quality of life will be so poor I won't want to carry on being stuck in a chair or bed 24/7 and unable to eat or speak and be breathing through a ventilator. I just can't see that as living. So already I am thinking of ending it under my terms when I feel it is right to me and it is so easy to do painlessly with a strong sedative and a couple of bottles of N embutal. You just go to sleep and never wake up.
 
im very sorry you are feeling this way. I do, however, understand where you are coming from. Im pretty sure i wouldnt want to live that way either. But let me give you something to think about- Maybe i am wrong, but...
I would think that he hardest part of this disease is the process of becomming locked in. Having to watch yourself loose the ability to move around and getting weaker must be excruciating. But what i am thinking, is maybe once you are to the point where youre not going to get any worse, then and only then do you have the chance to get used to your new life. its difficult to do when you are still in the process, because everything is still changing and changing pretty quickly. You dont have the chance to really get used to it before another ability is lost. maybe once youre more "stable", it would be different. Just a thought. Hang in there.
 
Having had to face the question of this possible diagnosis (right now it's PLS) several times I understand on a level as well. I thought about this A LOT and my decision was that as long as I felt I had a purpose here on this earth I would be here and that if it were to the point where I felt I couldn't go on, I would know it hopefully and have a plan, as you do. Having also been with two people while dying (my nephew had SMA and my uncle had cancer) and being there at the end, I also know how slow it can be as well as how quickly it can happen. I think most of us would prefer the "quickly".


That said, I'm quite certain you still have a lot to offer in life. Have you written about your experience? I would love to read a book like that, especially one where the person in the book deals with real life issues like this. I did read one not terribly long ago and it was so inspirational. My husband has it at his office so when I figure it out I'll post it.

Stick with us. Your story could impact many others. We are here for you! PM me or make me a friend if you are interested!
 
dear landofsmiles,

I am sorry that you are feeling this way. Believe me I understand that is a very scary prospect and why I do not believe that having a trach is right for me. That being said life is precious and a gift and certainly God will call all of us home one day but no need to expedite the process. Keep in mind that more people then you will be impacted. I could be wrong but I believe you said that you have a Mom in the UK? My point is that it is important to think about how others would be impacted. Far be it from me to tell you what to do or right from wrong, my suggestion would be to find the positives in your life and all the reasons you are happy to be alive and focus on them.

Please stay strong and keep the faith, you will be in my prayers.
 
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Several people on this website sent me hate mail for being distraught over my lack of financial resources and social/family support. Bullies love a vulnerable target.

"I knew I would hate you."
"Get a grip!"
"Life is what you make it."
"Stop being such a downer!"

Personal hygiene problems. Can't prepare food. Eating is very difficult. No transportation. Insurance issues...

I pray for the strength to end it all before things get too much worse.
 
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They can send me hate mail also... I believe we have a right to die when we are at "that" place, particularly physically. Everyone's place is different. One person might feel they can't live with Alzheimer's or Dementia... another person might feel they cannot go on with constant, horrible pain.. as another poster said... a trach might be the limit for them... for me I'm thinking bedridden with no control over certain functions....and, like you, the idea of not being able to use my arms and/or legs is a big deal.

We are HERE to support... not just to quote Pollyanna or sing ZipADeeDoDA......It's a support forum for goodness' sake.. so they are in the wrong. I'm on my way to my counselor now but befriend me if you would (or I will befriend you when I return).. I have a fairly strong shoulder still :) We can support each other... HELL, THAT is why we are here! HUGS!
 
Roadkill,

I am sorry that you are suffering and feel as though people bullied you. There is no reason or excuse for that. I am glad that you felt comfortable enough to express yourself and seek support and comfort. I can not imagine what it would be like to go through this alone. Have you tried reaching out to the local ALS or MDA support groups? Please know that if youneed to vent you can always reach out to me.

Do no allow your mind and fears to run away from you. I know it is difficult but please find the reasons in your life that make life worth living and focus on those.
Stay strong and kee the faith, I will pray for you - Ted
 
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The ALSA social worker yelled at me: "What do you want me to do? You shoulda bought long term care insurance!"

Even if my employer had offered it when I was hired, I would not have qualified due to "pre-existing" conditions.

MDA never returned calls or replied to emails.

Bottom line: everyone w ALS needs an advocate. I have none. I have a small pension and SSDI. I have insurance (life, medical)... but I am overwhelmed w paperwork, I am hungry, and I smell. I even put a listing on craigslist asking for help but just got replies from perverts and scammers.
 
Your frustration is understandable, I am so sorry that you have been treated this way and our in this position. I wish I had an answer for you, my advice would be to be persistent with bith the MDA or ask to speak with someone else at the ALSA. Perhaps even a social worker that your Dr or clinic can put you in touch with. I do not know if you go to Church but perhaps some people there would be willing to help if even if in a small way. Again I understand that it is easy for me to say these things from a distance but no life is worth abandoning. Please do not give up hope. God has a plan for all of us, it is not always the plan we were hoping for but it exists none the less. You will be in my prayers.
 
My heart goes out to you. No one has the right to judge you until they have walked a mile in your shoes.
 
landofsmile, I am hoping and praying for you today that you find a purpose for life and find joy in someone or something. hang in there with us.

roadkill, my heart goes out to you. Is it possible to go to a nursing facility to get fed and get help with hygiene and to have people to be around you and help you? Your SSDI should cover this or your other coverage. May God give you someone to help you today. Blessings,
 
The only person that can make those decisions is you. If others don't respect your decisions then remove them from the process or in the case of messages ignore them. Tomorrow may be the day they find the cure but you are the only one who knows if you can wait.
 
landofsmiles, people can try to encourage you to find a "purpose" for living, but I think it's so their decision to see ALS through to the bitter end is justified. The more people who submit to feeding tubes, bipaps, vents, etc. the better. Their decision is ratified. Well, I'm in the minority around here. I live alone. There isn't a reason in the world for me to live if I don't want to. I've soldiered on to this perilous position where I can barely support my weight, I can't walk, can't drive, my arms are getting weak, my face is twitching and hospice estimates I won't be able to swallow in 2 months. Ain't that a picture? Other people can say they're living and having a great time when they're all tubed up and paralyzed. I don't want to do it and I have a little stash of pills that says I don't have to. Nobody can force you to live that way.

Good luck,
Carol
 
Getting back to the original question, I think the only thing that would make me want to end it would be pain. If I am in a lot of pain, and the only way to deal with it is to drug me so badly I can't stay awake, then that would be about the same as death and I might as well go.

Loss of function by itself doesn't seem that bad. You'd have to be quite a gourmand to kill yourself just because you couldn't eat, and I don't talk all that much. I already can't walk and that's working out ok. Switching from typing to eye gaze or muscle twitch systems will be slower but I've seen a couple of people with them and they do pretty well.

I could still watch tv, listen to music, browse the web, do email, facebook, and forums like this one, and even write software. That's most of what I do today.

Getting locked in is more of a worry. It doesn't always happen though. Some people retain eye blinks or other muscle movements for many years. And there are technologies to read brain waves which may work even when all muscles are gone. Worst case, when it's imminent I'll give my wife a list of several years' worth of books on tape. And I'll ask her to see if she can stick me in an fMRI machine (which can read thoughts to some extent) every year or so and ask me if I want to go on.
 
Carol,

Well put.

My "friends" have been too busy to help for over a year. The stress of doing this alone is incredible.

All the smug, supposedly good people with their opinions and suggestions... useless at best.

No one can do this alone for long.

:cry:
final exit network dot o r g
 
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