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Cindy

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@citaliano

I am frustrated. Where is The right to try for all? View
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  • Profile picture of Amanda

    Amanda replied to the topic Organ donation and ALS in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 hours, 1 minute ago

    @Alan,
    That’s what I’ve been telling the research team at Miami, “You can have my brain and body as soon as I’m done with them.” Great minds 🙂

    Amanda

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic How do you handle variations in caregiver skills in regard to your ALS? in the forum Living With ALS 10 hours, 49 minutes ago

    In James Clingman’s recent column, he talks about some of the difficulties he’s had to experience while spending a month in a healthcare facility. He chose to check in to the facility to give his wife (and caregiver family) a respite from their duties. But he’s found a wide range of responsiveness from the facility’s staff – – especia…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 23 hours, 49 minutes ago

    Maryann, Theracumin studies show it is helpful in reducing joint inflammation, increasing memory in older adults, and aides the gut with digestion – – but it had no direct effect on ALS symptoms.

    In deciding to take a popular supplement, it is always good to know exactly what it can and cannot do. Regarding ALS and supplements a good resource to…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic Does fungus cause ALS! in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 days, 2 hours ago

    I completely understand looking for a cure, or even a miracle. I really do! I’m the 15th person in my family to have ALS, and I’ve watch many family members succumb to the beast. Perhaps because ALS has been in my family, and life for decades, I’ve researched the daylights out of miracle cures and alternatives to the traditional treatments or…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Does fungus cause ALS! in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 days ago

    Rich, I believe your statement would be more on point if written this way: a lot of people have this bacteria which can lead to Lyme disease and they have been misdiagnosed as having ALS.

  • Profile picture of Amanda

    Amanda replied to the topic Does fungus cause ALS! in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 days, 3 hours ago

    This article appears to be more of a literature review with various hypothesis. Most of these have been researched and continue to be investigated from what I’ve read in other articles. It is important to look at peer reviewed medical/scientific journal articles when researching and make sure the article is not someone’s ideas. Also, until they…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Coping with ALS in the forum Living With ALS 6 days, 16 hours ago

    Excellent! Excellent article – – and thank you Amanda for your contribution of facts, resources, and helpful tips.

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Does fungus cause ALS! in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 days, 19 hours ago

    Rich, brellie bacteria causes Lyme disease.

  • Profile picture of Amanda

    Amanda started the topic Coping with ALS in the forum Living With ALS 1 week ago

    Here is an article just published about coping with an ALS diagnosis.

    ALS and mental health

  • Profile picture of Amanda

    Amanda started the topic ALS TRIVIA – – "The Les Turner Foundation" – – Did you know? in the forum ALS Awareness Month 1 week, 1 day ago

    The Les Turner Foundation was established in 1977 after Les was diagnosed at age 36 with ALS.  At that time there was very little research about ALS. The Les Turner Foundation set out to raise funds to provide vital research and resources to people living with ALS and their families. The Les Turner Foundation is known for supporting pALS in the…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic ALS Community Spotlight: "To families affected by ALS, Hope Loves Company offers hope, support” in the forum ALS Awareness Month 1 week, 6 days ago

    In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ALSSpotlight, or read the full series here…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic The next Step in the forum Living With ALS 1 week, 6 days ago

    Congratulations on jumping through all the hoops to be able to take Tofersen! And, your recent interview was fabulous!

    Cape Coral woman with genetic ALS to test newly approved drug

    I’ve been taking Riluzole for 13 yrs now and here are my thoughts: taking it during or immediately following a meal gives me…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic QALSody in the forum ALS In The Media 1 week, 6 days ago

    That was a great interview Amanda! Thank you for helping to raise awareness of ALS. I’m so happy for you that you are approved for the new treatment.

    (your tattoo looked pretty nifty too!!)

  • Profile picture of Amanda

    Amanda started the topic QALSody in the forum ALS In The Media 2 weeks ago

    The local News did a story on SOD1 ALS and QALSody!

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 2 weeks, 1 day ago

    Hello Forum Members – – – these are all great tips! But I’m sure you all have more to share. Let’s fill this discussion topic with all your advice for other pALS and cALS. Here’s a recap of the request:

    What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something y…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 2 weeks, 1 day ago

    My tip: When at ALS Clinic appointments always listen, bring along an open mind and a positive attitude. Don’t be afraid to ask lots of questions such as, “What do you suggest I do to maintain where I am right now?” and write down everything so you can follow up at home.

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 2 weeks, 1 day ago

    Svarog, that is an impressive collection of charts! Are you the sole creator, or is this a collaboration?

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 2 weeks, 1 day ago

    Maryann, I’m curious… did you encounter any difficulty in having your health insurance pay for you to take all 3 Rs? ( riluzole, radicava and relyvrio)

  • Profile picture of Amanda

    Amanda replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 2 weeks, 1 day ago

    Maryann, I’m sorry. I miss read the “who” part.

  • Profile picture of Amanda

    Amanda started the topic The next Step in the forum Living With ALS 2 weeks, 1 day ago

    Thursday afternoon I received a text from the U of Miami team asking if I could be there on Friday. I responded, “Absolutely” and went home and packed an overnight bag. A little of the back story .. I have been participating in the Pre-fALS study since 2010ish. On December 2nd, they confirmed I had SOD1 ALS. At that time they expected QALSody…[Read more]

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