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  • Recently diagnosed

    Posted by Fran91 on February 7, 2024 at 9:15 am

    Hello, I am from Madrid and I am 32 years old, I have been diagnosed with sporadic ALS and I have joined you again, I have found this forum thanks to Dagmar Munn, I have read quite a few titles and I think that having been diagnosed for 3 months I am over-informed about everything.
    I don’t know how quickly this disease will affect me and the only thing I try is to have the most positive mind possible and think about the day to day, without thinking about what I am going to do tomorrow, focusing on today’s moment.
    I think that this forum can provide me with a lot of information and company by seeing brave people who fight with this and are capable of LIVE, since I have been locked in a dark and dark world for two months; Just as I believe that I can contribute a lot to the forum, since, as I said, I have read a lot about this disease (before I was diagnosed with it, I understand that like most, with the large number of symptoms that you are having and that each Maybe they bring you closer to the precipice…), and I think I will be able to contribute positive ideas and thoughts to all the members. When I have negative thoughts I will write them on a piece of paper and tear it up.
    I understand that like most when starting out with this disease, they have read a lot about supplements or reversals due to them, my thought is that the greatest supplement that exists is the acceptance of the disease, since, I believe that a positive mind focused on The present and not in the future is the greatest supplement of the earth.
    With all this I have said, I simply take supplements to be as calm as possible and to sleep as well as possible, these are:
    cbd oil
    Melatonin

    I hope to be in this forum for a long time with BRAVE members like you.
    All the best

    john-watson replied 6 days, 22 hours ago 4 Members · 4 Replies
  • 4 Replies
  • Dagmar

    Member
    February 12, 2024 at 11:38 am

    Hello Fran, I am pleased to know that one of my postings brought you to our forum. You have a positive attitude – – which you’ll certainly need (!!!) to live with ALS. Yes, most of us are over-informed (“Dr. Google” haha) by the time we are diagnosed. I hope you’ll find our discussions helpful. Again, welcome!

  • sherri-morehouse

    Member
    February 13, 2024 at 2:42 pm

    Hi Fran91,

    Welcome. You are so right that a positive attitude is so important to your wellness. I do agree on your point to accept the diagnosis, but I would challenge you to NOT accept the prognosis. Neurologists steered my husband (who is a pALS) away from searching for the cause of the ALS, but I couldn’t accept that we do nothing but take the few approved drugs the get a few extra months. After more networking on forums like this and additional testing, my husband was found to be positive with Lyme disease, Bartonella, and mycotoxins. We are actively treating these issues now and he is thankfully stable.

    I hope you are able to find a way to at least stabilize your progression, but for sure your best tool is your own mind and body. I’d encourage you to watch the movie “HEAL” if you can find it. It has amazing stories of people tapping into their own power to heal from trauma and disease.

  • john-watson

    Member
    February 13, 2024 at 7:00 pm

    Hi Fran91,

    Like others said a positive outlook is very beneficial for a pALS. In addition, you might find the recent and very informative EverythingALS presentation by Dr. Eduardo Locatelli on February 7 titled “How to Slow ALS Progression” applicable to your situation, especially since your diagnosis is recent. It is available at: https://www.everythingals.org/pastevents.

  • john-watson

    Member
    February 13, 2024 at 7:07 pm

    Hi Fran91,

    My apologies, I posted an inactive link to Dr. Locatelli’s presentation. The presentation is available at https://www.youtube.com/watch?v=rj9SRJlvKps

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