• thomas hubbard became a registered member 1 year, 2 months ago

    • Hello Thomas, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
      Amanda

    • Hello Thomas,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is 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. You can also search for past topics or discussions by typing a keyword in the forum’s search bar. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with me) know, and we will do our best to help you.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

      • Hello to Amanda and Dagmar, and thanks for the welcome.

        My first of three diagnoses by separate neurologists was in 2015, but I noticed symptoms five years before that and began searching for a doctor who could explain why I was suddenly having trouble playing guitar. Now, at age 82 I am still able to walk a short distance. I’ve lost almost all use of my left arm and hand, and the right is down to about 30%. My shoulder and upper back muscles, as well as deltoids and biceps have disappeared. My ALS is a very slow variant of the disease. But it is just as deadly. It will take me down eventually.

        I have used marijuana almost daily ever since I graduated high school in 1956. And I am very careful with my diet, which has included shiitake mushrooms for almost 13 years now. I currently self-medicate with various supplements and heavy doses of full spectrum CBD oil. These facts may have some connection to the slowness of my own ALS but I’ve never found a medical practitioner who would agree. However, I have found many medical practitioners who have no understanding of ALS nor of the sub-cellular chemistry at the causal root of this disease.

        Consequently I have very little faith in the medical profession aside from technology for curing simple diseases and performing surgery. However, medical researchers in the last several years seem to be unraveling the secrets of cellular chemistry and developing some possible effective treatments for ALS. I’ve sought to be included in some of these studies but with no success, probably because of my age, or possibly for lack of an advocate.

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