Everyday is a step closer to a cure

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brendapals

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Yes, pretty exciting, proof that none of us can give up!:)
 

Jennifer51

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Thanks for the link....these links seem to be getting more prolific, keep it up, we want the hope of a cure ever more closer. Just hurry up.....
 
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Positive News Sure Gets the day off to a good start

It is amazing how one positive news release can make the day so much more manageable...sure is nice to have something to grasp to! Thanks for posting.
 

Jennifer51

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constructionduck....how true....Then today . I just by chance got an email from the UK mnd association...They are now compiling a list of their members who would be interested in participating in any upcoming research. No obligation and you can change your mind...no guarantee that you will get picked ......BUT it is my thinking that they would not be doing this if they did not have any ideas in the pipeline. Hope keeps me going.
 

dsiple

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I am glad to know that all of this gives hope. That is why I post so much research related material, that and I am kind of a science/research dork. I know how very easy it is to get frustrated with this stupid disease, and when I come across something new being done, I want to pass the excitement that I feel, on to everyone else that I possibly can. If you really want to understand the magnitude of what is being done out there, Google ALS, and sort by date. You have to weed out some junk articles, but there is some pretty interesting reading out there. Thanks for listening to me ramble on.;)
 

glenn gavanaugh

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THis is awesome stuff, indeed. But what really makes me anxious & depressed is the reality that even though they're on the right track, treatments let alone a cure seem to point toward the distant future. There's probably not enough funding, not enough attention being put toward it (though an increase of attention is definitely noticeable).
They're just skimming the potential - it's sad to know all the people who are going to succumb to the disease int he meantime with no treatments... I know that's reality, as hard as it is, but it's still so depressing and makes me cry.
I hope to God a cure is on the horizon...
but don't so many people oppose Stem Cells? I hope the treatments that are found are released to the public, regardless of what a certain faction of people feel/oppose...

and the treatments the are found to slow the progression, well they can't reverse anything in somebody who's in the last stages of the diseaese.

and it makes me wonder: I'm sure that scientists are putting more efforts into more common diseases like cancer + aids. even ms and parkinsons seem to get more attention. It's sad, because this disease needs more attention! and it's getting it, but only bit by bit... this forum is an awesome way to bring it, though, that's for sure.

I am quite ignorant to this stuff, so these are just thoughts - I could be way off, and treatments are right around the corner, and will be released to much fanfare (crosses fingers as tightly as possible)...
who knows...

I do want treatments to be developed so badly~!
-the search continues-
 
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First of all

Glenn - Keep your head up...I think the odds that you have ALS are still pretty slim if I have followed your posts correctly. This would be a good thing because you can help raise money to increase the funding! I think that the stem cell research is really going to open up now that you have a democrat in office. In fact the FDA just approved their first stem cell human trial...and other ALS targeted stem cell project is in the process of approval (Neuralstem).

Please take a walk outside Glenn and breathe in lots of clean air...relax my man...you are going to be fine...
 

Jennifer51

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Glen...we all know the reality of how long it takes to get drugs and treatments thru to fruition, but we MUST all HOPE. Obama has approved stem cell and in the UK stem cell research is approved, and there must be a lot going on covertly. ONE day it will happen for us...lets hope above hope that it is sooner than later
 

glenn gavanaugh

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Thanks, constructionduck. I'm in the middle of a really bad gag-reflex problem, so I'm trying to breath slow and keep 'er easy.

and Jennifer51, I will also keep the hope alive! Even if I feel skeptical at times, it's just my depression kickin' in. We need to keep hope. it's all we've got.
 

Jennifer51

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Thanks, constructionduck. I'm in the middle of a really bad gag-reflex problem, so I'm trying to breath slow and keep 'er easy.

and Jennifer51, I will also keep the hope alive! Even if I feel skeptical at times, it's just my depression kickin' in. We need to keep hope. it's all we've got.

Glen, I may portray myself as being strong and very hopeful, but I often have days when I just want to crawl away in a corner and die now, I dont want to go thru all that this dreadful disease has to throw at us. But I MUST be hopeful for my own sanity and for my kids..I have to BELIEVE that something good will happen soon.
We can all pull together..we have to.
 

dsiple

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Jennifer51--very well said. I am pretty much totally dependent on everyone else for even the most basic of things, but I can't let it get me down. As I have said before, this disease may have taken my strength, but it will not take my spirit. There are days, not very often, where I would prefer not to even wake up, but I refuse to give up give to this disease because that is the cowards way out and no one with ALS is a coward.

Glen--whatever your diagnosis may be, you have a very powerful network of friends here. If you have a rough day, that is what we all are for. Keep your head up and be positive, it will help more than you think.;)
 

Big Mike

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Think Living Long-Term with ALS

It will take time to formulate this reearch into actual treatments, this is true. But there are many ways to extend your life with ALS when the time comes that exist RIGHT NOW that may allow you (me included) to live long enough to reap at least some of the benefits of future treatments:

(1) Diaphagm Pacing Stimulator. This device seems to be on the fast-track for acquiring final FDA approval and should be available to all PALS in the next couple of years. It has already been demonstrated to prolong breathing capacities in ALS patients for up to 2 additional years, with more improvements being made to the device to further prolong the strength of diaphragm muscles. This will delay the need for NIPPV (Non-Invasive Positive Pressure Ventilation) and TPPV (Tracheostomy Positive Pressure Ventilation) machines.

(2) NIPPV and TPPV. Yes, living on full-time NIPPV and eventually getting a trache/vent is a highly personal choice but one that can prolong your life for several additional years, maybe even a decade or more! Additionally, more improvements to these respiratory devices are sure to come.

(3) Communication technology. Voice Synthesizers, on-screeen keyboards, switches, eye-gaze technolgy--all of these devices can allow to stay communicated with family, friiends, and the outside world. And to come in a few years are thought-transferrence devices that can allow you to talk and even operate a mechanical arm just by using your thoughts, via electrodes attached to your head from a computer!

(4) Investigative treatments undergoing trials right now or soon to be. Some of these, whether it be stem cells, new drugs, and/or gene thereapy treatments could be shown to improve survival in just the next few years. Even if they only provided modest benefits, they could prove to help prolong survival long enough for newer and better treatments to come along and, in turn, further improve survival. Who knows--a cure may come along that could stop and even reverse some of the symptoms!

So keep up the hope and think living long-term with ALS. :D
 

Big Mike

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Not unrealistic at all

Dear Muffinigen,

Nothing I declared in my post is unrealistic or simply wishful thinking at all. I think more PALS would choose life-extending measures if they were more fully informed. Many still wouldn't, but again, as I have stated in other posts, unless the disease is progressing too quickly, the choice is theirs to make.

Advances in medical technology towards ALS are literally accelerating now. Yes, a cure is probably a ways off but treatments too slow down the disease are probably coming down the pipeline in the near future. That's the whole point I was trying to make regarding life-extending measures for those that are respiratory compromised--future treatments could still be beneficial for those even in the later stages of the disease.

Without hope there is nothing. Everyone will die of something. But PALS can live longer than the current stats suggest and have a satifsying life as well thanks to modern technology.

Respectfully,
Big Mike
 

Muffinigen

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I completely understand, Big Mike. You're exactly right. There is so much available now to PALS, it's encouraging (every single article you read says the same daunting thing: "80% die in 2-5 years" - and then you look around this site and there are so many people who are living past that statistic...how true is the statistic? really? It'd give me more hope to know that it's hogwash...). Hopefully treatments to slow the progression of this disease are available in the next couple years. Hence your advocacy of technology and prolonging life to the stage where treatments can be administered.
But what about for people who're progressing at a really fast pace? Can they use some of this technology to extend their lives? I hope so. I might fit into that category (undiagnosed as of yet... but my condition is worsening at a pretty progressive pace - at least to me).
and I hope eventually my account is deleted. I was trying to get my post count up so I could edit the 2 original posts myself. I thought it was after 3. Bah. I wasn't trying to be disrespectful (I definitely was disrespectful though!). I feel like a jerk. Like I hijacked this thread. Ugh...
Anyway, your enthusiasm is awesome. And if I do have ALS, I'm opting for all of that technology that you mentioned. Only thing is, I'm young, and my parents are on a below average income. We all struggle as it is. I'm hoping I'm provided with some of this stuff! Because in the long run, I can be there when treatments are available...(hopefully...)


- M.
 
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