Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

Hi Joel,

I want to thank you. You were the first person who even said that it was possible to live a full life with a trache and vent. Everywhere 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 trache 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 trache is not such a bad thing and that it is possible to live a good life with a trache. Not sure what my dad will do but at least he will be able to make a more informed decision. Thanks

D.R.

AB, CAN

Oct. 13, 2009

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.

__________________

Hal

HAL

CA, USA

Oct. 12, 2009

Joel- you are completely right ...I was looking at it as a death sentence ... didn't realize 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 Joel 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.

R.N.

MA, USA

Oct 12, 2009

Joel, Tussen Takk [Norwegian for Thank You] for being our Head Coach in the horrible game for our lives! Here is 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. :]

K.B.

SD, USA

Oct 13, 2009

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