Researchers identify cause of ALS disease

Discussion in 'Up to the Minute' started by Kat, Aug 21, 2011.

  1. Kat

    Kat Kind words do not cost much

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    http://health.usnews.com/health-new...theyve-found-common-cause-of-all-types-of-als

    Researchers Say They've Found Common Cause of All Types of ALS

    Might lead one day to new treatments for the condition, also called Lou Gehrig's disease


    Posted: August 21, 2011

    More at link. This is good news. I hope that it gives many families renewed hope.
     
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  3. kgeaux

    kgeaux New Member

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    I hope and pray they find a cure for this terrible disease. A dear friend of mine lost her fiance to this, and it was horrible.
     
  4. MaryLiz

    MaryLiz New Member

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    This is good news. Thanks for posting it, Kat. ALS is the disease I fear getting the most, even over cancer. I have known two people who have died from it and, as kgeaux said, it is horrible!
     
  5. Turtles

    Turtles New Member

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    Thank you for posting this Kat, my Mom lost her dearest friend to this horrible disease. How nice it would be to eradicate such a wretched thing.
     
  6. Opie

    Opie Well-Known Member

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    Horrible disease. I saw some of this while working/volunteering at the hospital here.
     
  7. bessie

    bessie Administrator Staff Member Administrator Moderator

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    Thank you for sharing this with us, Kat. A business acquaintance of mine is entering the last stages of this disease now. I feel so sorry for what has happened to her. This is good news, though.
     
  8. deelytful1

    deelytful1 *~a mere mortal~*

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    Let's hope so! I hope the funding is there to get it all worked out soon! Glad to see science is actually working on cures for things other than hair loss and erectile dysfunction! ugh..
     
  9. BuzzieCat

    BuzzieCat New Member

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    Awful disease. My great uncle lost his first wife and two of his three sons with her to ALS. A cure would be so wonderful.
     
  10. TallCoolOne

    TallCoolOne Registered Lurker

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    This is certainly encouraging. My Dad died from ALS in 1995. His was the sporadic type. It is a cruel, horrid disease. It was most difficult watching a man who was at one time a strong able bodied farmer wither away to nothing. His mind was still sharp as a tack buy his body was rendered useless.

    The worst part was how he actually died. It was a beautiful day in mid-September. They lived on the edge of the golf course. Dad told Mom to go ahead and play a round of golf with some of her lady friends. So, she did.

    Well, they were on the call list for Com Ed in case for any reason they were going to shut down the electric, they were SUPPOSED to call them 24 hours in advance, which would have been fine since Mom and Dad had a portable breathing unit for him. So, when Mom got to the 3rd green (they lived right off the 3rd green,) she popped in to check on him. Well, while she had been away for that fairly short amount of time, Com Ed had shut down a block or so away to do something on the lines, (they had not phoned them as they were supposed to have) and there he was, he had passed because his breathing machine had stopped.

    I can't even begin to tell you what that did to my Mom. I know how it haunted me and she was worse as she blamed herself. Can't tell you how many sleepless nights I had on account of it. Once it would get in my head I just could not get it to go away. Mom still beats herself up about it to this day.

    Okay, gotta stop now, it still makes me bawl when I get thinking about it.
     
  11. BuzzieCat

    BuzzieCat New Member

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    That's awful, TallCoolOne. So sorry that a cruel disease had to be made even worse by the carelessness of the electric company.
     
  12. scorekeeper

    scorekeeper New Member

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    ((((TallCoolOne)))).....thank you so much for sharing your story. Why does this happen when the care giver has taken a few hours to do something they enjoy? Please pass on the hug to your Mom (I just know she has to be a sweetheart.....)
     
  13. Show Me

    Show Me New Member

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    Thank you Kat for this encouraging news!

    My husband's father died of ALS when hubby was just 18.

    My BIL died last year from ALS.

    We still don't know if my hubby's father contracted the disease during his WWII service in Guam or it was heriditery as my BIL came down with the disease a few years ago. The island had an unusually large population with ALS, and many servicemen developed the disease.

    Tallcoolone...I'm so sorry for your mother. I hope she can forgive herself, it was not her fault!

    It will be great when the ALS diagnosis will not be called a 'terminal' disease, but a treatable disease.
     
  14. ScubaTwinn

    ScubaTwinn New Member

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    I'm so sorry Tallcoolone. We lost my mother-in-law to ALS. We were "fortunate" in that within two weeks of starting to have mobility problems, she was gone. She did not suffer from it for years as a friend of ours did.
     
  15. octobermoon

    octobermoon Active Member

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    My husband lost his battle with this monster in 2004. I am sitting here bawling with joy over this news. Will write more when I get myself together.
     
  16. mysterygirl

    mysterygirl A Nancy Drew Wannabe

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    Oh this is certainly positive!

    It is a horrible disease........you are simply a prisoner in your own body.
     
  17. Pandora

    Pandora New Member

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    I've been following this since the first day, but I haven't been able to comment until now. THANK YOU, scientists, doctors, nurses, researchers, patients who have allowed poking and prodding, and anyone else I missed.

    There is an unusual strain of ALS (at least they think that's what it is) that is impacting a large number of men in our area. (My dad is showing signs of it or perhaps PD, he won't go to the dr., so we aren't positive.) Interestingly, all of the men have worked together at one time or another (same location) and all are veterans (most VN). Those have been the research points because there are so many of them. :(

    Until they find a cure, we will be hoping and praying.
     
  18. Show Me

    Show Me New Member

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    My FIL and many of his fellow servicemen came down with the disease, years later, after serving his country on an island that had a unusually high number of the natives getting this awful disease. Both the natives and the servicemen had a far, far higher population getting the disease than was the norm in other populations.

    We wondered if the disease was a virus for many years until my BIL came down the with disease. Both had suppressed immune systems at the time, my FIL from a violent allergy attack that almost killed him and BIL from another disease he was suffering from.

    Hubby and I'd love to see a cure!
     
  19. octobermoon

    octobermoon Active Member

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    Thank you so much for this thread. As others above have shared it truely is a very difficult and pain filled life and death. Not only for those afflicted, but for the family who stands by helplessly.

    My Love started out with a simple twitch in his right eyebrow. Then the right leg, slurred speech, a year's worth of tests. Emotional rollercoaster that ended with ALS.
    He passed at only 47 years old. I am now a year older than him. For some reason that really gets to me. He will always be 47 in my eyes.

    When he was diagnosed, I had to tell his family. The most painful call I have ever made. I pray this news brings treatment and possibly a cure, or prevention. And no one has to call and explain how this disease will kill their child, father, mother, son, daughter, friend.........

    About a month after we knew what he had, the research hospital asked if they could run a DNA/family history for a study into causes of ALS. I called my in-laws and they all agreed to donate not only their blood(dna) but a complete medical (intrusive, all meds, embarrassing stuff) questionaire. They said abosolutely yes. Their personal Drs. ran the tests and the hospital paid the costs. It was a double blind study, but I hope that the information they gave may have helped with this find. Kudos to this family in 3 states that even told when they were potty trained or if they ever had a std!!! Now that is going above and beyond for your second cousin twice removed.

    My husband was a mechanic and there was some talk that mechanics and gulf war vets had a higher rate of ALS. Petroleum, the fires in the war, but I don't know if that is still true. What was weird is that about a year after he died , his boss was diagnosed with it too. But we live very near 2 military bases. Within 2-5 miles either way. And they did want to know if we were ever in Guam. Not trying to start a conspiracy, just odd.

    We did learn to roll with the punches. Redifined normal so many times we got the giggles. He insisted on wearing Carhart overalls. GRRR. I pulled them up too high once and he kept saying "fishy fishy fishy!!!!" LOL I finally realized he meant WEDGIE! OOOPS.

    When he lost all ability to speak we used a wireless doorbell system one by the bed with one ring tone, another by his wheelchair. I had a pager. One meant bathroom the other was anything goes. Until what I labeled bing-bong abuse. He would ring me to run down to watch a replay of a football touch down, a comercial he thought was funny, oh yeah-and Janet Jackson's wardrobe malfunction. Doesn't matter how ill, diabled a man is, a flash of a boobie is something to talk about :) Now I sound a little heartless, but I was also taking care of our infant (premature) grandson at the same time. So I was a little too busy to care about JJ's boob at the time.

    The best/worst/funniest fight we ever had was when he refused to type to me. He could still use one finger on the computer to talk. Well he was giving me the cold shoulder and was I getting mad. He finally rolled over and typed out "Man does your face get red when you are frustrated" LOL he was right. Of course me being me said "well you should type when I want to talk" He had tears streaming down his face he was laughing so hard. It made sense when I blurted that out. :D And his laughter
    made me melt. I miss his laugh.

    One more thing before I ramble on forever.
    ♥♥♥ Our son is our hero. He moved back home to love, support, and care for his father. All the while dealing with breaking up with the mother of his child and the trials of being a single father of a preemie♥♥♥ He now has a healthy 7 year old boy who has not only has grandfather's name but that twinkle in his eye when granny gets red in the face with frustration!

    Thanks for listening.
    P.S. If you see a fireman's boot this labor day, please donate. Just a little can give a family mobility, relief for caregivers, or just hope for a cure.

    some videos about living ALS

    [video=youtube;tPaYHLrT9sQ]http://www.youtube.com/watch?v=tPaYHLrT9sQ&feature=related[/video]

    Imagine Living With ALS - YouTube

    30 Days to Live - Larry's Story - YouTube

    Tom's Dream: A World Without ALS (A Love Story) - YouTube
     
  20. Show Me

    Show Me New Member

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    From Octobermom: My husband was a mechanic and there was some talk that mechanics and gulf war vets had a higher rate of ALS. Petroleum, the fires in the war, but I don't know if that is still true. What was weird is that about a year after he died , his boss was diagnosed with it too. But we live very near 2 military bases. Within 2-5 miles either way. And they did want to know if we were ever in Guam. Not trying to start a conspiracy, just odd.

    Guam ought to be really looked into for the disease, hubbys dad served in WWII in Guam, so this was many years later. Strange his boss was diagnosed also...is it viral? We just don't know.

    So sorry for your lose. I've know 2 friends who were mechanics dying of cancer...some kind of cleaning fluid was suspect.
     

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