I just posted this one my web site.

This is a subject that disturbs me greatly. I find there are too many people who focus on the fact they are going to die. They are convinced they are dying and will die within a few months or years.

While there is that possibility, everyone has to die sometime, I still believe that ALS does not have to be fatal! This is also supported by medical professionals who I have come to respect. If we are willing to make use of the current technology available to us we can live indefinitely. The most common reason for PALS to die is from respiratory failure, so if you are willing to get a trache and vent death can be avoided.

I have discussed the subject of getting a trache, or not getting a trache, in another page so I am not going to expand on that here.

Lately I have corresponded with far too many people who have given up and are focused on their ultimate demise. (their belief)

They are devastated that they will not live to see their children grow, graduate, get married and see their grandchildren.
This does not have to be the way things turn out!

As I have stated above, if you are willing to get a trache and vent, a PEG (feeding tube) and use devices like a power wheelchair then life can still be fruitful and fulfilling. Life does not automatically have to be over!

Don’t let anyone tell you differently! It is entirely up to you. This is a choice you have to make and then never look back! The choice is simply, do you want to live or die?

I am reading more and more devastating articles written by caregivers and family members than people who actually have ALS. They are destroyed by the ALS diagnosis their loved one has received and can’t quit crying. They are angry and extremely bitter. If you are a caregiver who is guilty of this then please stop and change the way you look at ALS. You have a great responsibility to be strong for the one who has ALS, focus on the positive and get on with helping them enjoy each day as best as possible.

There will always be “down” days and that is to be expected whether you have ALS or not, but don’t make this the norm.

I would also like to slap some PALS across the side of their heads for always being angry and not being able to rise above their depression. There is medication to help with this if it is a result of Emotional Lability.

Don’t believe anyone who tells you that you have to die because of ALS.

You don’t unless you decide you don’t want to continue living. That is another topic I have discussed on a different page.

Get on with Living and Enjoying each day to the Fullest. There is still a lot of Living to be done!
God Bless Each and Everyone of Us!

My sisters father in law was 59 years old. He was very healthy. never smoked. he had peg tube, and a vent . he fought to live to the very end. He only had ALS for 18 months.I think it's wrong to tell people that if they die it,s because they didn't fight hard enough.

Thanks Joel, all of what you have said and the example that you set is a good reminder for all of us that we sometimes need to look beyond what we are told by the doctors and the statistics.

Never give up, never surrender.

I thank you joel for your comments. we just found out on sept 3 2009 that my husband has ALS. we are being very proactive on his care, he is only 44, and has probably had this for a couple of years. we just didnt know what was wrong, and he lost his job last dec, and was trying to find a new job so he would have insurance. In just 5 weeks we have been approved for SSDI and VA benefits, Next week we will be getting Bipap and Peg set up, and already have his power chair. There is help out there everyone, if you are dealing with professionals that do not help you, FIRE THEM!!!! and get someone who will help you. My husands greatest fear is that he wont see his daughter graduate from high school. She is a freshman, and I will fight to make sure he does. Hugs, Lori

I'm still not ready to go casket shopping. I could, however use a nice set of bionic legs.

My sisters father in law was 59 years old. He was very healthy. never smoked. he had peg tube, and a vent . he fought to live to the very end. He only had ALS for 18 months.I think it's wrong to tell people that if they die it,s because they didn't fight hard enough.

I am sorry you took it that way. I don't think that was what I said and it certainly is not what I meant. The exhortation was to not focus on dying and an ALS diagnosis is not an automatic death sentence.

Thanks Joel,
I understand what you wrote
(my signature reflects the same feelings)

Now Zaphoon i want a set too, dont care what size, or shape as long as they work:lol:

cheers
Peter

I know this is hard to believe for alot of people but some people that have ALS does not accept the trache because they think they are an inconvenience to their family. I know this is true because this is what happen to my mother. I have to admit that I still have anger in my heart because my mother wouldn't accept the trache . I wanted her to except it so bad. My step father was a respiratory therapist at a large hospital and he was hardly ever home. Mother told me that she thought he was tired of her being around, and I believe that is why she didnt except it. There was alot of personal reason's she thought this. I would have took care of her for the rest of my life because I loved her. So please don't feel this way if you have ALS go ahead and accept it because this is the way your going to keep breathing, the doctor told me that when your body says it is time to get the trache and if you get it you even feel better because your body doesn't have to work as hard to breath and you can think better, feel better and have more energy. Make the right decision for not only you but your whole family . You DO have family that loves you very much and want you around as long as possible.

Whilst the sentment is very good and I agreed with it during my first year of living with MND, as has been said before, everybody is different. I mean that, as far as symptoms is concerned. I had a positive attitude for my first year, then suddenly things went downhill. Now my days and nights are full of pain, despite medication. I am totally frustrated, as I guess most of us are. One persons mnd is not the same as anyone elses. My husband and family do a great job of looking after me, my doctor and carers are very good, but I dont want to live like this any more. My right hand and arm are just useable, I dread to think what life will be like when they go.

Can't help but think about it at times. I am recently diagnosed, my wife is a renal failure patient on dialysis. They won't give her a kidney transplant because I am in this shape and couldn't be an effective caregiver. My next sister younger than me is an RN, and is trying to get things set up for me for a move to NE. Sister is convinced that wife won't be able to give me 24/7 care needed for trache/vent. Very few nursing homes are certified to be able to take care of ventilator patients.

So, while I would exist on a trache/vent, it probably won't happen.

What I am reading from all of these insightful posts is that we are all different and that a solution that works for some may not work for all. Because each of us has a different progression of the disease, different life circumstances and different resources we need to keep in mind that we each have to decide what will work for us.
I agree with all who have commented and would like to say that what I take away from Joel's original post is that we need to try to keep an open mind about what we can do. Whether a trache and vent works for you is for you to decide, just don't rule it out because someone else says so. And don't just give up because someone else says you should.

Thanks Barry. I have said many times before that I realize this does not work for everyone and I respect that. We each have our unique situations that will dictate and influence what we do. I did not post that to upset everyone. I have read too many posts where newly diagnosed people are devastated because they were told they were going to die really soon. That is not necessarily true and I was trying to offer some hope that life does not automatically have to be over. I quite plan on dying of old age. I understand that life on a vent is not for everyone but for those who can adjust to it life can continue and be very enjoyable.
But, I still feel, regardless of your decision, that we should not focus on dying. That robs you of the joy you could be experiencing today.

Hello Joel,

I looked at the homepage for this site. It describes ALS as a "progressive and fatal nueromuscular disease". A newly diagnosed peerson, being told they have a fatal illness, is going to take that to heart. It is the truth, eventually, depending on the course of ALS, they probably will learn to live with it but not to forget that they are indeed dying from it. I think one of the great purposes of this forum is to support us on our journey and we all know where that will end.

Marianne
p.s. I hope you do indeed live to a ripe old age

Thank you Joel! I was down about not being around my family and watching them grow in every way. You helped me to realize that my love for my family will only grow stronger and will help them grow stronger too. I will be able to show them to have courage to take on anything life has to offer. With all the technology now I could maybe even go fishing still, uh !

Before , during and after each hurricane we have family and friends and neighbors all come together and help each other. This is true with most situations. When the time comes I will have to educate them on what is ALS. ASk for help not their pity.

I am afraid of asking and being rejected, but I have to believe now a true loved one or friend would not reject if they could help. Not to put anyone down but some people are just plain afraid of seeing someone else sick. They do not mean any one harm it just scares the life out of them.

Sorry , back to what I was thanking you about. You brought me back to reality and thank you again.



Sandra

"progressive and fatal nueromuscular disease".

That is old school thinking and there is a lot of talk about changing it.
One of the reasons they are hesitant to change the wording is because of insurance and disability payments. With it being classified as a terminal illness there is no contesting benefits.

Also, technology has advanced since that definition was created. A lot of things are possible today that were not available a few years ago.

I know I am in the minority as there are only about 5% that do what I have done. So I have always experienced a lot of objection. But times have changed and I would like to see that statistic change. There are a lot more than 5% of us that are in a position to trache and vent.

Living with a trache and vent is not what the average doctor will tell you, it is quite easy and enjoyable!

I am not ignorant of the challenges surrounding what I have done. We had to move 450 miles to a major center. That is a whole other story but don't fool yourself into thinking I have had it easy. I had to fight hard for what we are enjoying today. If I could do it so can many others.

Don't give up without a fight. God Bless you all!

joelc- you are completely right ...i am looking at it as a death sentence...didn't not realise the trachea could keep you around a long time,i was thinking of it as a temporary help as i think of Christopher reeves had one and , he died but , now that i think of it i do not know why he died...i just assumed...thank you joelc you have giving me a good wake up call because i just thought of him dying and i also understand your saying als does not have to be fatal.. nor did i know most people refuse this help witch brings up the old school part growing up i always heard i don't want to live that way and i say me either now i am thinking twice... and my son will get the trachea if i have to put it in myself some how lol..you just took a lot of sadness and gloom out of me ....like you i may not like what is to come but, he will be here with us

I have had to fight and be strong all my life and moved 3000 miles to enjoy a better life ,I don't give in without a fight but realize that pain ,not being able to move(not just walk) would not be a life for me and would never ask my family to sacrifice there freedom and oppotunities in life because of me.
Joel I think it is great that you are enjoying life and that is as it should be and you have a wonderful support system. I have a wonderful support system also but I have had a wonderful life and intend to live what I have left to the fullest.When I first read your post I was in tears thinking I was not being strong enough and giving in to easily. I have since realized( thanks to other posts like barry's)that you are trying to let those who don't know that there are options.Live long and health Joel Happy thanksgiving.
Beverley
Beverley

I remember the first thing I said when I got my ALS diagnosis. Earlier the doctor had said he would be wanting to do more tests, but after the EMG he said it wouldn't be necessary. "These readings indicate that you do have ALS." He started to say something else, but I interrupted him. I said, "Wait, you're saying I have ALS?" and he repeated, "That's what these tests indicate." So I said, as though I was pointing out a flaw in his logic, "But that's a fatal disease."

He went on to explain that there is ongoing research, there are promising studies, etc, medicine is working on this problem and we shouldn't lose hope. But that had been my first reaction. ALS is a fatal disease. That was what filled my thoughts.

It took me quite a while to get an understanding of exactly how ALS leads to death. There is so much to learn at first, plus it was all so hard to accept and take in. My wife knows more about medicine than I do, and she said that she understood that eventually the breathing fails. But I couldn't understand how that would kill you. Couldn't you use an iron lung or something? That's what I actually thought of, an iron lung. I was born before the polio vaccine and that was a common image back in those days, paralyzed polio victims in iron lungs. My wife could only say that she didn't think that was an option for ALS.

Even as I learned more and got active on the forum, I still didn't understand how Joel and some other people could say that they didn't see ALS as a fatal disease. I thought it was just positive thinking. But when I read Joel's web pages and some other material, it felt like getting my life back. ALS really does not have to be fatal. I felt for the first time that there was real hope. I had bulbar onset and you often hear that life expectancy is worse with that, but now I could imagine a possible future.

I understand that this solution may not work for everyone, and certainly there are no guarantees in life even if you do make use of all that medical technology has to offer. Survival on a trach is sometimes said to be "indefinite" but that doesn't mean infinite. Everyone's time will come, but at least you don't have that feeling of a countdown ticking away your remaining days. And of course there are major quality of life issues, but for me the mere fact of immobility isn't as horrifying as it might be for others.

My wife is totally supportive of this idea. She has seized on it even more than I have. We still have to work out the practicalities but we have some ideas and hopefully as we learn more we will be able to make a plan.

I do want to thank Joel again. Ever since I learned the (literal) "facts of life" about ALS, it has given me a new perspective on the disease. I would be the last person to tell other people what they should do, but for me and my wife, if it is at all possible, we are going to do all we can to extend my life.

Joel, I love your positive outlook. I think everyone wants to be as optomistic as you are.
My husband (FTD/MND) and I are very positive people. We laugh more then we ever have in our 38 years of marriage. But... I do think your post was more like a football coach berating a losing team then a cheerleader leading his/her team. I realize I am not the one with the disease. I can't pretend to imagine how difficult it is however I am a caregiver and understand fully the tremendous responsibilities we as caregivers have. This is especially difficult when you have someone who also has dementia and trusts you to try to make the right decisions for them. Don't close the door on those who need to talk things through, whether that discussion is about life OR death - that would really defeat the purpose of this forum.

I have given this a lot of thought. And I have come to a conclusion for myself that I will see what things bring. I can say that before Joel and a few others showed me that options were really available not just in writing, but really a option. I think I want to be around as long as I can with my loved ones, and knowing that I might have a choice sure does help. I can understand how some people do not want any heroics or any sustaining measures.
I love that we can make choices, and I do know that some of us do not have choices, and that can be for a ton of reasons. We are all in int together, and we all can learn from others, and and maybe we will take a little bit from each other, and we will take something from all of the stories. I have learned one thing, people will for the most part look at the way we handle things, and they will take are lead. Oh and I do intend to see my son graduate.. You bet I do.

Hi Joel
I want to thank you for this post and some of the other ones regarding this issue. You were the first person who even said that it was possible to live a full life with a trach and vent. Every where we went we were told (by doctors) to get something in place because you don't want to end up in a hospital bed with a trach and just stay there waiting to die. Our whole family was determined not to let this happen to our dad. Reading some of your posts has helped me to see that a trach is not such a bad thing and that it is possible to live a good life with a trach. Not sure what my dad will do but at least he will be able to make a more informed decision. Thanks

I LOVE this FORUM! I love that there is sincere, from the heart and soul dialogue about the reality of being a PALS and CALS. It is our life in all it's glory and sorrow. H4C, your signature tag is so inspiring! My DH use to say, "this is tooooo die for" when he really loved something that I had baked or prepared. He doesn't say it anymore, nor do I and yet, what a fabulous inspirational thought!
Joel, Tussen Takk [Norwegian for Thank You] for being our Head Coach in the horrible game for our lives! Here ia another twist to the tangled tale. Our ALS Neurologist does NOT support PALS getting Peg's or invasive ventilation! So you see, you can want it but then not get it or the only insurance that you have is Medicare and will they cover the costs? The truth of the matter is that the more proactive we all become and the longer PALS live the more power we will have!! There is such power in numbers. Those of us that have a VOICE need to use it to make people aware of this horrific disease! The real truth is that all of us are one breath away from death every moment. Our choice as a Family is to LIVE every joyful moment. :]

... I do think your post was more like a football coach berating a losing team then a cheerleader leading his/her team. I realize i am not the one with the disease. I can't pretend to imagine how difficult it is however i am a caregiver and understand fully the tremendous responsibilities we as caregivers have. This is especially difficult when you have someone who also has dementia and trusts you to try to make the right decisions for them. Don't close the door on those who need to talk things through, whether that discussion is about life or death - that would really defeat the purpose of this forum.

thank you!:!::!:

Another point of view. To consider your options dispassionatly is not to "focus on dying," as if considering your own death were somehow a moral failing. You've done a tremendous public service, Joel, in presenting the positive side of living with a trache, and showing the possibilities for extending PALS' lives with technology.

Few others are out there banging the drum for this, and you deserve a lot of thanks for blazing the trail and giving others hope.

Here comes the "but." As you yourself have observed, we all know we're going to kick the bucket someday. It is not morbid, or anti-life, or the sign of a depression requiring happy pills, to contemplate one's mortality. And to do so in a serious way. I think one of the few good things about ALS is that it gives us plenty of time to come to terms with this. Accepting death, and even anticipating it with a little buzz of fear and excitement (OMG, it's really going to happen ... to me of all people!!), makes life all that much sweeter. I don't see death as some sort of dark horror at the end of life ... but now we're getting into personal belief systems, so I won't go any further with that.

To my mind, avoiding the topic of death, or refusing to deal with the reality of it, or refusing to consider the practical implications for oneself and one's survivors, does not enhance life. On the contrary, it diminishes its richness.

Living on a trache has a ton of stuff pro and con to consider. Most of them are practical. But one of them is always the trade-off: What am I willing to endure to stave off the inevitable? At what point does one release one's grip on this stage of existance and embrace the next stage?

After all, death is a once-in-a-lifetime experience! :lol:

As some people have apparently misinterpreted what I was trying to get across, it is my turn to possibly misinterpret what you are saying Beth,and others. This is not directed at Beth or anyone specifically.

No one is trying to avoid the topic of death and yes, we are all going to die one day. But to be totally consumed by it is fruitless. If a persons situation does not allow, or the person does not want, to live taking advantage of technology then accept that and enjoy what time is left.
For those that want to carry on I was trying to say that it is possible to enjoy life while utilizing technology. Do they not deserve to hear that?

I have never once said there should be no talk about death, but I have been told I should not talk about living. I find that a little hypocritical.

I am not in denial and avoiding the subject of death, I just don't dwell on it and let it consume my every thought. I am not afraid to die, on the contrary I welcome it when it is my time. As a Christian there is no fear. That is another topic as Beth has already stated.

A lot of people are not ready to die and have been told they have no choice. I am saying there is a choice for a lot of people. Should they not hear that?

I don't want to see people consumed by the thought of death and waste their last days on earth. If that is wrong I apologize to everyone, all I ask in return is for someone to explain to me why it is wrong.

Joel, you can't please all the people all the time, so why bother trying. I'd just let it drop.

AL.

I agree with Joel. ALS is not necessarily fatal. With today's respiratory and communication technology, people have the potential to live many years beyond the respiratory "failure" stage of the disease. But I would strongly encourage anyone who is considering the trache and vent route to find a serious hobby or project involving the computer that they find fulfilling, in addition to friends and family, in order to cope with being in a paralyzed state. Also, i would have advanced directives indicating when enough is enough (i.e. lose ability to move the eyes, too much pain or uncomfortableness, dementia, another disease, coma, etc..) so you retain control over your own life's decisions.

It should also be mentioned that some of you will be slow progressors, that there will new effective treatments in the future, and a few of you will even plateau with your disease and stay there. Who knows, someday there may be a way to stop ALS and even correct some of the damage.

Lastly, I would encourage PALS to really take the time to research the disease and look at relatively inexpensive treatments, such as supplements, that have scientific rational behind them and could be beneficial in the NOW, just as long as you make sure you check with your doctor first before trying them.

Mike

Joel, I love your positive outlook. I think everyone wants to be as optomistic as you are.
My husband (FTD/MND) and I are very positive people. We laugh more then we ever have in our 38 years of marriage. But... I do think your post was more like a football coach berating a losing team then a cheerleader leading his/her team. I realize I am not the one with the disease. I can't pretend to imagine how difficult it is however I am a caregiver and understand fully the tremendous responsibilities we as caregivers have. This is especially difficult when you have someone who also has dementia and trusts you to try to make the right decisions for them. Don't close the door on those who need to talk things through, whether that discussion is about life OR death - that would really defeat the purpose of this forum.

It's certainly understanding why anyone would choose not to extend their lives with als, especially with dementia. I am sorry for youir situation, sjpowers. However, the problem with als in the context of this thread is that most PALS are not properly informed by the medical community of their options for extending their lives. That's what Joel is talking about here--give people truly the full-range of options (and not just that "you're going to die, nothing we can do" canned speech) that are available and let them decide for themselves.

Thank you Joel for your insite. We are all giving a death sentence the minute we are born. Everyone is going to die. It is what you do in the middle that counts. you are born --- you die. I believe take each day and live it as if it is your last. Enjoy your family and friends. Smell the flowers watch the birds and squirrels play. Make happy memories for each other. Catch a frog with a grandchild, lay on the ground and count the stars. Do something silly and just laugh. Teach them to sew , to fish, to laugh and to live.

Joel is that what you are trying to say?

Sandra

Joel ... I'll butt out on this subject in the future. You already know my practical considerations, and your optimism has caused me (and many others) to investigate the subject further.

I think you are doing a great public service by providing a counter argument to the doom and gloom view of doctors. Keep on carrying the message of living life to the fullest ... to the very last drop.

Joel ... I'll butt out on this subject in the future. You already know my practical considerations, and your optimism has caused me (and many others) to investigate the subject further.

I think you are doing a great public service by providing a counter argument to the doom and gloom view of doctors. Keep on carrying the message of living life to the fullest ... to the very last drop.

Thanks Beth, but please do not butt out!

All this interaction and different views are important as they really help to clarify what each of us are trying to say. And that is good. :smile::lol:;-)

I'm sorry Joel, for what I wrote above, it's nothing on you or what you wrote, just my own personal situation. I'm a long way from needing a trache, and things may change by that time. They won't give my wife a kidney because I can't handle caregiving for her, and right now they say they won't give me a trache, because she is unable to be an effective caregiver. No. I'm definatly not ready to die, and would do anything possible to extend my time here that I can. I'm 54 years old, and think I have a lot of time left for the normal span of a man's life. It's so hard to focus on anything else, when all those around you act like you are under a death sentence. I hope the statistic changes, because of those of you that extend your lives with mechanical ventilation. I hope I can be a part of that statistic when the time comes, but those people around me are pretty pessimistic.

Perry