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Where Are the Cures?

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BethU

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There is an eye-opening column in the November 10 issue of Newsweek titled "Where Are the Cures?"

The article mentions ALS specifically, among other diseases. It documents what happens between discoveries made in labs and their eventual appearances as treatments, and why it takes years and years for breakthrough discoveries to reach patients.

Very disturbing. Also enraging. (But then, I enrage easily when it comes to ALS.)

http://www.newsweek.com/id/166856
 

kevinw

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Gee...it kind of takes the wind of your sails when you see it in black and white print in Newsweek. All the hope for some kind of breakthru and to read that it could be sitting in a journal somewhere with no way to move forward.
 

crystalkk

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Beth,

I agree it is very distubing, thanks for sharing the article.
 

linray

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Thanks for sharing. That was a hard read...
Lin
 

brendapals

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Beth,
Thanks for the article, it was very educating, to say the least!

I personally am going to continue to "bank" on that positive mental attitude stuff, it's working pretty good right now, and you know the old saying, if it aint broke, don't fix it!

Seriously, we need to try our best to remain upbeat with all this stuff. Someone, somewhere, someday, is going to know how to cure ALS. We must pray that it happens soon,

Never give up,
Never let up,
Never lose faith,
brenda
 

BethU

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Brenda ... I am pretty upbeat myself as far as my personal situation goes, although less upbeat about my husband at the moment ... but if we want to achieve a goal, say finding a cure for ALS, we need to know exactly where the hitch in our gitalong is located.

I believe the writer of that article: the system for transforming discoveries in the lab into treatments for patients IS broken and needs fixing. When scientists themselves call the lull between breakthroughs and treatment "the valley of death," that's a big clue that we're not being paranoid. The system is broke, it does need fixing, and saving lives should be the priority of the NIH. This isn't downbeat ... just factual.

IMHO :)
 
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brendapals

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hey Beth,
Finally got a chance to read it again, and , yes, that process does indeed need fixin!
"the valley of death"? Keep spreading the word girl, I'm trying to every day, some days are better than others, and some days people understand.
take good care,
talk soon,
hugs,
brenda
 

BethU

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News about Gulf War vets' illnesses

This article is on the MSNBC website ...

http://news.mywebpal.com/partners/680/public/news936004.html

It is totally scary what our troops were exposed to. Article also says that in addition to increased risk of ALS, many vets are also at greatly increased risk for MS, and there may be genetic damage passed on to children.
 

Debbie53

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Beth,

You are an inspiration to me. How do you keep your sense of humor and courage? You are realistic about the "valley of death," and yet you never sound bitter. I wish I could say the same for me, but I've run up against so much apathy and ignorance that I have to say it's tainted my outlook.

What is going on with your husband?

Debbie
 

BethU

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Hi, Debbie ... thanks for those kind words. I needed a cup o' kindness this morning.

Thanks for asking about my husband, too. As I guess I've mentioned (a few tiimes :)) he has been diagnosed with parkinson's plus dementia. The Parkinson's meds are great. His walking is much steadier, and no falls for a couple months (knock wood). I was told that it will take a while for the dementia meds (Aricept) to show a difference, but I have the sense that they are finally working. It's impossible to describe ... just that he is more "present." He is taking information in now, he's becoming aware of what's going on around him. and responding appropriately. It's very subtle, but I think it's happening.

The biggie is that he is still nauseated and can't eat. And I can't blame this on my cooking! He can't eat more than a few bites even of his favorite foods, and is losing weight.

Three weeks ago, one of his host of doctors said he feared stomach cancer, which Paul's brother died from. And a close family member who had it is a risk factor. And of course, I started Googling like mad, and his symptoms sure sound like it. So the tests were set up for yesterday in the hospital, and it turns out his stomach is fine ... no cancer, no nothing that shouldn't be there.

That was a scary day at the hospital, however, as they told me the test would take 20 minutes, and an hour and a half later, I was still in the waiting room, sure he had died in the operating room, etc. I kept trying to figure out what I'd do if the surgeon came and said, "Your husband is dead." I could not imagine it. And I knew my response would be, "No he isn't. I want a second opinion!" But all is well on that front ... Big WHEW!

As for my hanging in there ... it is still denial, I think. For two years, I said, OK, my speech is bad/worse/gone, but at least I can still ________. Fill in the blank: "Walk, use my hands and arms, get around, drive, etc." And I figure it's never going to progress beyond where it's at, because I'm so special. :)

Alas, it is spreading and I'm losing function in both hands, but still at a fairly slow steady pace. And I can still ___________. Whatever ...

Sorry this was so long ... but you hit me exactly when I needed to vent.

Thanks so much for your concern!
 
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Debbie53

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Beth,

Your postscript cracked me up because I'm a substitute teacher and occasionally have to teach "English as a second language".

I'm sorry you're having so many troubles. When people talk about those "happy golden years", I think they must be refering to our thirties or forties! Maybe we just start falling apart sooner now, but in more insidious ways, so we end up living longer, but not healthfully. I don't know. I've had fibromyalgia since before I was 30, (at least 23 years), so probably my perspective is skewered.

Anyway, it sounds like you have an extremely full plate with your own health problems, let alone your husband's! I hope you have somebody to help you.? Glad that at least you can cross stomach cancer off your list of worries, but now you have to keep looking. Not knowing was the worst part with my dad, and of course I had to Google every possibility too. In his case it happened so fast that there was really nothing to be done, but that's another story.

I haven't read the article you posted yet, but I will. Our whole healthcare system is SO messed up. I have hopes that Obama will start turning it around, but it's like the Titanic-so big and moving so fast in the wrong direction that it's going to take an enormous effort to avoid catastrophe. Scary.

I hope things move as slowly as possible for both of you...

In admiration, Debbie
 

patricia1

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BETH I THINK MY DENIAL GOT ME 9 YEARS ALREADY
THE MORE YOU THINK ABOUT IT AND WORRY WHAT WILL HAPPEN AND WHEN
YOUR DISEASE WILL GET AHOLD OF YOU

I AM ALWAYS AMAZED HOW OUT OF CONTROL THE PEOPLE ON THIS FORUM ARE THAT DONT HAVE ALS.:roll:

PAT
 
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