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  1. D

    genetic testing

    Nikki-thank you for the clarification and for a viewpoint that I had not thought of. Kim-so happy to hear about your friend's experience. I was hoping for a similar outcome.
  2. D

    genetic testing

    I was diagnosed with limb onset ALS at the age of 52. My mother was diagnosed with Parkinson in her late 60s. Since there was no known ALS family history, I never had any interest in genetic counseling. Recently I watched the Les Turner webinar on genetic testing where it was recommended for all...
  3. D

    medicare

    Thanks Nikki. The link you provided was super helpful. It looks like his insurance would be primary as they have more than 100 employees. If I just do part a for now, can I add part b and d in the future during medicare's open enrollment.
  4. D

    medicare

    Hello. I had been on fmla during the end of 2023 and then officially retired in January 2024 at the age of 54 at which I started to receive LTD. LTD had me apply for ssdi. I was approved for ssdi and recently received notice that I was approved for Medicare. My husband added me to his Kaiser...
  5. D

    My Sister Has ALS

    I am sorry to read about your sister's diagnosis. I was diagnosed on 11/2021 at the age of 52. My kids were 15 and 17 at the time so as a Mom I feel for your sister. I live in Lake Tapps-right outside of Tacoma. I just started a drug trial at Swedish in Seattle which helps give me some hope...
  6. D

    Diagnosed on November 1, 2021

    @Jeff900-yes deciding on what clinical trial to participate in is very daunting. I'm hoping that the recent ALS bill that passed in the house and the senate and is now waiting for the president's signature will alleviate this stressful decision as the bill will allow early access to promising...
  7. D

    Diagnosed on November 1, 2021

    I was blind sided and was diagnosed on 11/1/21 with ALS. It started in Fall of 2020 with what I thought was carpal tunnel. My symptoms seemed to improve with splints and rest. Then during July 2021, I started to notice right hand weakness, especially in my pincers. I was seen by a neurologist in...
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