can you "fight" ALS/MND?

[MtPockets]

The way to fight ALS

H O P E
If we give up on hope, hope for a cure, hope for a treatment, hope for everything, then what are we? Even doing something small like going outside and smelling the roses can make a day much brighter. The little things we decide to do, bring us hope and happiness, no matter what our physical circumstances may be at the time.

 

[Ronelle]

I got the same line: You have ALS, go home, you have 2 to 5 years. I am definately not giving up altough its is tough to live life this way. Yes, yes, yes! Positive attitude, enough rest, good nutrition, good general health, lots of TLC and most importantly God helps. If I give up now, I know I will not see the end of the year and I am planning to be around for a long time!

 

[viviana]

you have to fight ALS!only those who fight have the chance of getting better!raise awareness and fund for research!if every patient would do this the cure would happen sooner!only through strong minded people we can beat ALS!and only together!positive attitude can do wonders!your mind has miraculeous powers!but you need a very strong belief without any little doubt

 

[Jennifer51]

I was told to go away and be positive, as positive helps..no point in lieing in bed and seizing up. I do try to be positive, but it is often not that easy, as I am sure most of us know only too well. But my question is, if we take all the help modern medicine can provide, for breathing and feeding..just how long can that keep us going ?

 

[joelc]

Hi Jennifer.

In answer to your question about how long can we live? From my experience the quick answer is indefinitely.

Since ALS does not make us unhealthy, it only robs us of muscles, if we are willing to endorse technology then we can keep living until something else gets us like old age or a heart attack, etc.

Yes, it does get to be a challenge getting a house setup to accommodate what we need like powerchairs and lifts, etc. But once these are in place life becomes easy again.
I am at this place and life is good!

 

[BethU]

Jennifer ... I agree with Joel, who said it all: As long as we stay healthy ... i.e., manage the progression, control the symptoms ... there should be no limit except old age and other health issues (heart, flu, cancer, etc). I think many of us can manage the progression with technology, and we certainly have the tools to control many of the symptoms.

Unfortunately, of course, many PALS are not able to stop or slow the progression, but that doesn't mean we shouldn't try everything reasonable that's available. There obviously are different "strains" of ALS, some more virulent than others. And there are many PALS who do not have the desire to fight down to the wire, and that is their choice, which I respect.

I'm sure that old "3 to 5 years, get your affairs in order" goes back to Lou Gehrig's day, when there simply were no treatments available. It's hard to realize sometimes how far medicine has come since then. I believe Gehrig died before penicillin (sp?) was available, so a PALS back then had no defense against pneumonia, which was almost always an automatic death sentence for anybody, ALS or not.

My own guess ... boy is THIS a stab in the dark ... but from reading this and other forums for a year now, I think 10 years is a reasonable goal for younger people (under 65). My impression is that many PALS are reaching that these days with no fanfare, even those with bulbar onset. And I get the impression that not only are more PALS reaching that than doctors acknowledge, but that PALS who do survive longer are doing so with a pretty good quality of life.


Speechless in L.A.

 

[joelc]

The only thing I would like to add to what Beth has said is it really does not matter if progression stops or not. With the available technology progression is irrelevant. It only boils down to a persons attitude and acceptance of devices to help.

 

[Jennifer51]

Thanks Joel and Beth for the encouragement of modern medical technology to prolong life. Have had the peg done and am going for more breathing tests and sleep study next week...also have a visit to mnd/als clinic, and will push neuro for info on the london hospital which is investigating stem cell treatment. We have just collected cord blood from a new grandson, then will enquire of my neuro as to his thoughts on the stem cell treatment in germany...a friend is off for that next week. I am trying to stay positive and embrace anything which might help.

 

[Ronelle]

I wish that I lived in another country with advanced equipment, clinics, resources etc for PALS. In the region where I live in South Africa, there is no support group, clinic, help, information ,no nothing. What I know I learnt from ALSFORUMS or internet. Nobody knows what the disease means and I had to print information for my GP. The closest support group is 300 km away. I am the only PALS in town and in a 250km radius. Positivity is all I have.

 

[BethU]

Ronelle ... that is a tough situation to be in, but even in big cities, the ignorance about ALS ... even among medical personnel ... is amazing. When I was diagnosed, my PCP (who is a resident finishing up her training) said, "I know nothing about ALS." What bothers me is that she is not interested in learning. She a lovely woman, but shrugs off all decisions and opinions to my neuro. This is probably best for me medically, but I keep thinking she is bound to have another ALS patient in her practice some day, so I hope she remembers what happens with me ... what I sound like, what I look like, etc.

Sounds like you are going to be educating everyone you deal with! As far as support groups go, we're your new ALS family, so please share with us whatever you need to, ask questions, etc. It sounds like you are making good choices. The PEG is literally a life-saver.

And with your attitude, you will be around for a long, long time. Hang in there!

 

[Momma]

Brenda,
I loved your post. I haven't been diagnosed yet but I'm having all the symptoms. I have an 8 year old boy also that I very much intend to waltz with also. Here's to never giving up! Those babies are worth every day we have!

 

[BarryG]

Ronelle, welcome to the forum. I with that you did not have to be here but unfortunately we all do so we may as well be useful while we are. Like you, I am 300 km from my ALS clinic and have to make an all day or overnight trip to visit it. My local gp has changed twice since my diagnosed and it about to change again because it's hard to keep doctors in small towns when the big cities call. Even the doctors that Canada imports (some say poach) from South Africa only stay in the small towns for a couple of years before moving to the cities. Also like you, my support group is here on the forum. The ALS society helps but not as much as the people here. While positivity is not everything it is the most important thing!

Barry

 

[Big Mike]

There are things you can do to fight back

I mean, really, what do even the best experts REALLY know about this disease. There is evidence, at least anecdotally, that attitude, nutrition, and even exercise can have a major impact on the disease. Even my ALS specialist agrees with me on those points. There also exists the means of extending your life beyond--and in some cases--far beyond the natural end progressive stage of the disease.

It's disgraceful that more isn't know about ALS at this point but there are ways to fight back, for sure.

 

[Big Mike]

Jennifer ... I agree with Joel, who said it all: As long as we stay healthy ... i.e., manage the progression, control the symptoms ... there should be no limit except old age and other health issues (heart, flu, cancer, etc). I think many of us can manage the progression with technology, and we certainly have the tools to control many of the symptoms.

Unfortunately, of course, many PALS are not able to stop or slow the progression, but that doesn't mean we shouldn't try everything reasonable that's available. There obviously are different "strains" of ALS, some more virulent than others. And there are many PALS who do not have the desire to fight down to the wire, and that is their choice, which I respect.

I'm sure that old "3 to 5 years, get your affairs in order" goes back to Lou Gehrig's day, when there simply were no treatments available. It's hard to realize sometimes how far medicine has come since then. I believe Gehrig died before penicillin (sp?) was available, so a PALS back then had no defense against pneumonia, which was almost always an automatic death sentence for anybody, ALS or not.

My own guess ... boy is THIS a stab in the dark ... but from reading this and other forums for a year now, I think 10 years is a reasonable goal for younger people (under 65). My impression is that many PALS are reaching that these days with no fanfare, even those with bulbar onset. And I get the impression that not only are more PALS reaching that than doctors acknowledge, but that PALS who do survive longer are doing so with a pretty good quality of life.


Speechless in L.A.

I agree wholeheartedly with you Beth. There's no reason why many PALS can't live 10 years or more with the disease in this day and age. But doctors and organizations like the ALS Association need to quit stamping death sentence statistics on PALS and start truly informing us of the respiratory and communication technologies that have and are emerging.

 

[Marjorie R. Wilcox]

I apologize first, but still have to say it. I don't agree that everyone can live a lengthy life as long as you do all the mechanical things. Don't get me wrong, we will do all the mechanical things for Rick, as well. The disease progresses in the muscles.... the heart is a muscle. What more is there to say? You can breathe and eat in other ways, but can you get a heart transplant when it is time?

No one more than I hope for a cure and want positive attitude to keep everyone going with this. I love you all, and Rick is my lifeline. I don't think I can make it without him. I would be the best cheerleader to celebrate the longevity of each one living to at least 90. Just be realistic, please. Some live long with ALS some are gone in a matter of a few months.

I hate to hear religious people say that all we have to do is declare we are healed and we are. I hate to hear that if you do this or buy that and take it, it will cure. Learn all about ALS and what it does. Don't give up on the chance of slow progression, but hope for the best and prepare for the worst.

Life is way too short. We age. We aren't immune to diseases. We take control for a time, but our time will come. Make sure you are ready to meet God is what should be tattooed on us at birth.

Then prepare, do reasonable things, make the most of each and every day. Make a difference, give to others. Appreciate your family and give love. Have an attitude of being a contributor of good things and not a complainer. Make wonderful memories.

"I am going to beat this" is fine if you only could. Take a look at this disease and realize saying that is denial.

Accepting the diagnosed is the beginning of your life living with it. Yes, no one can say we have 2 years or 5 years. They can only make a guess from the statistics with ALS.