• James became a registered member 9 months, 2 weeks ago

    • Hello James,

      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 Dagmar Because I’m new on this site I’m not sure if I contact you directly this way and if it’s ok to do so. First I would like to mention that I enjoyed your Positive Rituals and My Evolving Morning Routine. I have been meditating on and off since my early 20’s but I have been doing Sanskrit mantras as well in the past 6 or 7 years. I’m chanting many right now to help cover my fear of ALS. But I have a question in regard to riluzole. You said that you have been taking riluzole since you were first diagnosed in 2010. Has that helped you also? I have not been yet prescribed by my Neurologist even though I’ve asked him as my arms have been getting considerably weaker, especially my right arm and hand. (I can no longer play my violin)
        I have another EMG and MRI set up in a few weeks so I may have to wait until after my appointment with my neurologist on the 3rd week of March. In the meantime I will try some of the exercises you had mentioned in your last article. But please let me know about your experience with riluzole if you have a moment. Thank you Jamie

        • Hello James, This is a good way to contact me, although it is via “public” messaging, which is OK. If you want to discuss something not meant for public view, just send a “private message” (this option is found on your profile page).

          Thank you for your comments about my recent column – – and kudos for your mantras and chanting. In my professional life, I taught hatha yoga (for 20 yrs) so, I fully endorse meditation, mindfulness and mantras. 🙂

          As for Riluzole, at the time of my diagnosis, it was the only ALS treatment available. So, I began 10 years ago and continue to this day. I assume it is working (helping to flush out the excess toxins built up by oxidative stress – – the build-up has been linked to cause motor neuron death) – – because… I am still here! 🙂 haha ….along with the other positive lifestyle habits I’m following. I understand Riluzole is most effective when started at the onset of ALS, and here in the US it is a standard prescription for ALS.

          Even though your arms are feeling weaker, try to do gentle range of motion movements with fingers, wrists, elbows and shoulders – – to keep the muscles active. Have a good week!

          • Thank you so much for all your information. And I’m sure I will have more questions in the near future. I will try to continue various exercises. Today I tried to shovel away a portion of our 1 ½ foot snowfall from yesterday and last nigh and got very tired from the shoveling. I guess that was my exercise for today.

    • Hello James, 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!

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