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    Adjustable Bed Advice?

    Hello: I hope that everyone is hanging in there. My husband and I have decided we need an adjustable bed. Hopefully one where he and I have separate control. It is important that it moves up and down as he is having more and more trouble getting up out of bed. Any advice or success stories...
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    Radicava Dosing Question

    Hi -- My husband is on Radicava right now. He thinks it is helping him. Are there any resources you know of where people with ALS are on Radicava all the time and not just the 10 day (per 14-day) dosing cycle approved for stroke patients? If the drug helps those with ALS, why can't people be...
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    How to stop people from sending articles...

    Hi. This is a small thing but I have a dear friend who keeps sending me articles about research and treatments. And, it’s driving me a little nuts. Not 1 single time have any of the articles been helpful or led to something we didn’t either 1)already know or 2) eliminate as an option. And, I...
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    Webinar by Merit Cudkowicz on Healey ALS Platform Trial initiative (link to register)

    Merit Cudkowicz, MD, the Director, Sean M. Healey and AMG Center for ALS at Mass General on Friday, August 9, 2019 12:00 - 1:00 PM EDT An update on targets and treatments in development will be shared. In addition, Dr. Cudkowicz will share information on the Healey ALS Platform Trial - the...
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    I AM ALS - Check it out!

    I AM ALS is a a patient-led, patient centric community that reshapes public understanding of this disease, provides key resources to the community, and creates opportunities for patients to lead the fight against ALS and search for a cure.They are building a movement to cure ALS. Check out the...
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    Pity Party - Please pull up a chair

    So, I'm having a pity party today -- I just feel bad for myself and sad. I know it will pass and I know it's normal but geesh, I just feel so bad for our sadness. I have a major project for work due in a few weeks and I need to just do it but I'm so overwhelmed and feeling sorry for myself...
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    How to best help my pALS in early stages?

    Good evening -- I'm asking all of you to share with me some ideas, tools, methods, anything that I can do to help my pALS with regular living tasks. He works just so hard to so such simple things -- getting dressed, undressed, etc - I know you guys know. He is in the early stages -- leg...
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    How to Swim in Ocean

    Hi - I'm a cALS to my husband who has limb onset. His fav. thiing to so is swim in the ocean -- anything you all know about that can help him? Thank you!
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    Sleeping all the time...early stages

    Hello: My husband was diagnosed this past Dec. He has limb (legs and arms) onset. He is still working and driving. But...he sleeps a lot. Like almost all the time when he is not at work. I'm just trying to be patient with it and I know extreme fatigue is part of this awful disease. I...
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    Ques. on Brainstorm (NurOwn Trial)

    Hello: I am a cALS for my husband. I have questions about the Brainstorm Cell Therapeutics (Trial of NurOwn for ALS): 1) What are the pros and cons of this trial? 2) It seems to have promising anecdotal info. -- why aren't more people doing it? 3) When will results be published? 4) When could...
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