• Richard became a registered member 6 months, 2 weeks ago

    • Hello Richard,

      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 Richard, 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!

      • Hi this is Rich, in Oct 2018, while stopped in traffic, my car was rear-ended and totaled. I sustained a torn rotator cuff in my left shoulder from the seatbelt. After months of physical therapy I decided not to have surgery. I am a marathon inline skater and have always been in excellent physical condition, legs and upper body. Around March 2020 I noticed my left arm was losing strength and since I already knew of the rotator cuff injury I was not too concerned, By August 2020, it was noticeably weaker, I had another MRI then shoulder surgery October 2020. After surgery and PT, I could not raise my left arm above my shoulder. The surgeon sent me to a specialist for potential left shoulder nerve damage. During the examination, the doctor noted weakness in my right arm and both legs. She conducted NCV/EMG tests on both arms, both legs, neck and lower back and the results were all abnormal and consistent with a motor neuron disease. I had a virtual exam with a Neuromuscular Doctor at Columbia University Medical Center/Neurological Institute of NYC in March and extensive blood tests and pulmonary breath tests at the end of March. I started with Riluzole in April. I am 66, single and a suburban NJ home owner. I dont know what the future has for me as the weakness in both arms progresses along with anticipating overall muscle weakness in the rest of my body.. Thank you for the forum invite. Rich

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