There's any REAL hope for us?

[wchagas]

I am being in the last road of my ALS diagnosis and all I heard about it increnses the will of suicide. The researches are slow and there's no real treatment for ALS actualy. Stem Cells are promissing but it gonna take a large time to be used in the main public and it is more a reason to give up...

I want to hear from you guys: is there a real hope or after the ALS diagnosis the only thing that rest is the sure about a horrible death?

 

[Atsugi]

Welcome to the forum, wchagas.
I'll get straight to my points.
1) Plenty of People with ALS (PALS) have had peaceful deaths. There is hope where there is preparation.
2) Also, there is more to life than simply living and dying. There is hope for leaving a good legacy, and hope for leaving your family in good shape.

By the way, if you're about to be diagnosed, may I suggest getting increased life insurance before you are diagnosed.

On this forum you'll find quite a lot of support, both practical and emotional, for people with ALS. Welcome.

 

[GregK]

> I suggest getting increased life insurance

and if possible, long term care insurance.

and, fwiw, I have no current plans to die.

 

[Barbie]

I think until you are actually diagnosed you do not need to think about this any more. and look around you here on this forum, it is filled with people who have been diagnosed living life and enjoying life. suicide is not the choice of most people with als.

 

[Atsugi]

Barbie is very right. Greg gives good advice, as always.

I've noticed that most PALS have adopted a different way of thinking about life. Most PALS truly live life from day to day and hour by hour, enjoying every moment. You adapt to the difficulties, but focus on things that bring you joy. Frankly, I wish I had that attitude.

 

[skipper66]

My father has ALS and his biggest fear about it is how he will go at the end. That was also my mom's fear several years ago with her cancer. But, after reading several posts on here about PALS during their last hours it looks like several have went fairly peacefully which gives me comfort. Several appear to use morphine during the final moments and seems to help. So, there are drugs and things that will help.
My dad is not going to run any marathons. But, he is still getting joy out of his life even with this horrendous disease. Focus on what you can do and not what you can't. Take it one day at a time. I know this is easier said then done. Also, feel free to vent and also occasionaly laugh with those of us on here. We are hear to listen and lend support. Kim

 

[JimInVA]

My wife has ALS. She has gone from "I'm going to die one day" to "I'm going to die sooner"... assuming, of course, that she doesn't die from any number of other maladies that could take her life before ALS. Do we like that prognosis? Absolutely not. But is has been and continues to be an enlightening process for both of us. We start every day... not once in a while, but EVERY day... looking for things to smile and laugh about and to be grateful for. We make every day the very best it can be... because we know they are numbered (even if we don't know exactly what that number is). I have to honestly say, that I've come to value each morning that we arise together with greater worth than I could ever have before imagined. Because of ALS, we've learned to appreciate life and each other in ways we did not know prior to all of this. If ALS is the price one has to pay to become so wise and enlightened... then I'm glad that we're able to squeeze every bit of good out of it that we can. It Is What It Is...

Jim

 

[skipper66]

Very good post Jim. Thank you.

 

[Jeff Long]

I think until you are actually diagnosed you do not need to think about this any more. and look around you here on this forum, it is filled with people who have been diagnosed living life and enjoying life. suicide is not the choice of most people with als.

wchagas,
I quote Barbie's post because she nails it... you don't need to think about this right now!
Her third point that suicide isn't most PALS' choice is also right on the money. Hell, most of us are too busy living to contemplate dying by our own hand!

As to the PALS who are diagnosed and living/enjoying life, here's a list of some of the things I have done (I'm too dumb to remember them all!) since my diagnosis:
Walked one daughter down the aisle at her wedding
Learned I am going to be a grandfather for the first time
Planning to party like a frat boy at my son's upcoming wedding
Celebrated 3 more anniversaries with my bride of 32 years
Celebrated high school and college graduations with my four children
Ridden my bike to motorcycle rallies in Daytona Beach, FL, Sturgis, SD and other areas
Celebrated life by traveling in and outside the country with family and friends
Took the family on a week-long cruise (and ate like a rescued hostage the whole time!)
Restored relationships I had too-long neglected with family & friends
Become friends with PALS, CALS & ALS professionals around the world
Been given the opportunity & time to ensure I leave an appropriate legacy for my kids

I could go on for pages, but I hope you get the idea that an ALS diagnosis is not an immediate end to all things worthwhile. God willing, you get a different diagnosis; however, know for sure that you can live with ALS while you are dying from it.

 

[tinyandme]

My husband died less then 2 weeks ago. He died peacefully and we enjoyed every single second of life up until his final moments!

 

[MaxEidswick]

by now you will have figured that each of us 'live' differently.

For me that changed weekly/daily during the first months after diagnosed.

If you want to make a decision to kill yourself before diagnosis, I have all kinds of well thought out ways if you need help.

Are you looking for pain to stretch out those last few moments or painless (boring)?


-----
Max - Thursday, August 14, 2014 4:41:37 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[MaxEidswick]

by now you will have figured that each of us 'live' differently.

For me that changed weekly/daily during the first months after diagnosed.

If you want to make a decision to kill yourself before diagnosis, I have all kinds of well thought out ways if you need help.

Are you looking for pain to stretch out those last few moments or painless (boring)?


-----
Max - Thursday, August 14, 2014 4:41:37 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[MaxEidswick]

double posted thanks to Com****YouCast ...

 

[cheerleader]

Dear wchagas,
Never give up hope! If indeed you have ALS, you may have many years ahead! With the most recent fundraising for research, a cure could be discovered in the near future! Enjoy today and stop worrying about tomorrow!

 

[Bad Balance]

No real hope for a cure but there is comfort in day by day living and strengthening the love you leave behind