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  • Dagmar posted a new activity comment 17 hours, 13 minutes ago

    Hello Tonya,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

  • Dagmar posted a new activity comment 21 hours, 43 minutes ago

    Hello Priscilla,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]

  • Those are excellent suggestions Venu – – we can learn much from the breathwork techniques taught in Yoga.

  • You are correct Walter – – maybe the word I’m looking for is somewhere between Hospice and Palliative….leaning more towards a hospice mindset.

  • Dagmar posted a new activity comment 1 day, 20 hours ago

    Hello Susan, I don’t use a suction device… but have some of the same issues. I have trouble speaking (very slow tongue) and I cannot swallow liquids (throat muscles too slow).

    Some of the saliva/mucus accumulation is from not swallowing as often as we used to. It collects and collects. During the day, I remind myself to swallow more. I also…[Read more]

  • I have been going to my ALS Clinics ever since first diagnosed in 2010. I began with every 3 months and am now at 6 months apart (I’ve had no changes in the past few years).

    Initially, I was surprised by the “palliative care” model the team was following: lots of empathy and suggestions for ways to make my life “easier.” Which I felt was leading…[Read more]

  • Dagmar posted a new activity comment 1 day, 21 hours ago

    Hello Gayle,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

    • thank you so much for replying. this has been extremely emotional over the past several months. Never in a million years would i have saw this happening. Trying to remain positive but definitely challenging. Again, thank you for responding and for sharing these stories.

  • Dagmar posted a new activity comment 1 day, 21 hours ago

    Hello Tarq,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

  • Dagmar posted a new activity comment 1 day, 21 hours ago

    Hello Rabbi,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

  • Dagmar posted a new activity comment 1 day, 21 hours ago

    Hello German,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]

  • Dagmar posted a new activity comment 2 days, 20 hours ago

    Hello Kea,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

  • Dagmar posted a new activity comment 2 days, 20 hours ago

    Hello Aditya,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]

  • Dagmar posted a new activity comment 2 days, 20 hours ago

    Hello Simone,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]

  • Dagmar posted a new activity comment 2 days, 20 hours ago

    Hello Ahmed,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

  • Dagmar replied to the topic muscle training in the forum Living With ALS 3 days, 20 hours ago

    Martin, your doctor is correct that exercise will not have an effect on your ALS, although – – it has been shown in some recent studies, to help slow down the progression of ALS symptoms. Plus, exercise is needed for your unaffected muscle. The affected muscles will benefit from gentle, range of motion exercise. In addition, attention needs to be…[Read more]

  • Dagmar posted a new activity comment 3 days, 21 hours ago

    Hello Cate,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

  • Dagmar posted a new activity comment 3 days, 21 hours ago

    Hello Christiane,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]

  • Dagmar posted a new activity comment 3 days, 21 hours ago

    Hello McKenna,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]

  • Dagmar posted a new activity comment 3 days, 21 hours ago

    Hello Kimmy,

    Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

    If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]

  • I would be cautious with the information from the Healing ALS group. They are promoting “protocols” or lists of things to do to “reverse” your ALS….which is another way of saying “cure ALS.” Unfortunately, these are unproven, untested treatments, and based on anecdotal evidence.

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