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  • My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
    DISGUSTED
    I'M TRYING TO HELP MY BROTHER WHO HAS BULBAR ALS. HIS BREATHING HAS GONE DOWN TO 43.HIS NEURO SUGGESTED A FEEDING TUBE. HE NEEDS TO MAKE THIS DECISION. ALSO , WE NEED TO LOOK INTO THE DIAPHRMATIC PACER.HE NEEDS TO BE TESTED TO SEE IF HE IS A CANIDATEFOR IT. IS IT FDA APPROVED FOR ALS ONE OF HIS NEUROS SAID IT WASN'T.IS IT SAFE? THE PROBLEM IS HE'S ANXIOUS ABOUT EVERYTHING ,BUT WE DON'T HAVE TIME TO WAIT, HE NEEDS TO MAKE A DECISION NOW.HOW CAN I GET HIM TO MAKE THIS DECISION. HE'S LISTENING TO TOO MANY PEOPLE.HIS ACCUPUNCTURIST TOLD HIM KNOW TUBES,HE CAN SLOW THE PROGRESSION BY 80%.MY BROTHER HAS BEEN BOING FOR 3 MONTHS-NO IMPROVEMENT. THEN HE GOES TO A SPEECH PATHOLOGIST WHO'S DEAD SET AGAINST FEEDING TUBES. THE SPEECH PATHOLOGIST BELIEVES IN HOLISTIC MEDICINE. SHE DOES SOME KIND OF MASSAGES WITH HIM, SHE THINKS HE'S GOING TO IMPROVE WITH THIS THERAPY.I HOPE IT DOES HELP ,BUT THERE IS NO EVIDENCE THAT HOLISTIC MEDICINE CaN SLOW DOWN THE PROGRESSION OF ALS.
    Hi everyone,
    my brother has bulbar als. He ,s been going to an accupuncture dr. For about 3 months
    this dr. Claims he can slow the progression. My brother was dx. In oct. 2012.his symptoms include trouble swallowing ,slurred speech,breathing levels have gotten lower.he has him on some herbs plus he takes other medication for oter medical issues. Co uld the herbs have an adverse affect? He goes 4x,s a week .neither one of us sees an improvement. Maybe he needs more time, the dr, checks hhis breathing everyday the eastern wat. Those levels have gone down. Thidr. Keeps saying no tubes.we're going to the neuro on friday to check on everything. Does anyone else have problems with accupuncture. I'm frantic over this disease.
    Penney21
    Penny if your brother is choking you might suggest he get a peg tube...I have one and helps alot because I can use formula to keep weight up, and I soak my supplements in water til they disolve and put down the tube.

    Penny I misplaced your email so could you send it to me in a private message?

    ((hugs))
    sharon/sequoia
    Hi everyone.
    My brother has bulbar/als. I'm frantic about his choking.it's so scarey.this morning he stated to cew his chewable citrus vitamin b. The pill didn't go down he started to choke on the sweet acid taste from the pill.i suggested that he not take this pill anymore.can you do the chin tuck when you swallow pills?what else is good to avoi choking on pills and liquids?
    Hi Penny, did I ever send you the draft letter to ALSA? I cant keep track of what I sent to whom, so just checking in on you. If you send me your email, I'll get on it!
    love
    sharon
    breathing levels
    hi everyone
    the more i get to know about this disease the more ihate itit seems like every time you go to the neuro
    it's never good news. i went with my brother today. he was just dx in oct 2012. he has bubar on set, trouble swallowing and his speech is slurred. i was very upset because his breathing levelwent down to65 from 80. he needs to have feeding tube inserted while his breathing is still okay. he's very depresses and always crying. he has no limb involvement .limbs are strong. this is so scarey,because you don't know what t oexpect next. does the breathng change all the time. can it stablize for a while? when ddo you need a bipap.do people live many years using the bipap?this is my younger brother and i;m scared.please help. you are all warriors. penney21
    Penny I had a thought....if my email address is in blue on the private message I sent you then if you hold your mouse over it and push the control button and then click ....it should pull up an email to me.
    Hi Penny, if you post some more, about 15, I can send you the draft in a Private Message....Otherwise try sending an email to [email protected]

    Please address it to me, and then ed will send it to me...request for a draft letter to biogen. I do not know why you are having trouble with my email!

    Other wise, just give me your email in a visitors message
    it is exactly like below....all lower case, and middle intial is L, only lower case...or you give me your email and I will contact you. Or you can email Ed, at [email protected] tell him you want to listen and support on the conference call....it you have a question for the FDA doc, send that to him too
    hi sequoia
    please go to the alstdi sight. ther is talk about a new drug trailcoming soon. the drus has shown success
    for ms patients. drug name-Fingolimd(brand name) generic-Gilenya(already on the market) a dr. from mass. gen will do a webinar about it on march12th. the trial will start in phase 11.
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