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Lowell Stewart

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@bigship22

In reading the article about delayed diagnosis I’m prompted to tell my story. I had a bulbar onset that was so minimal that when I had my annual physical in April 2018 I forgot to mention it to my PCP. In October 2018 when I had continuing problems with speech, and fasciculations in my thighs, I contacted the ALS Center and saw a neurologist […] View
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  • Profile picture of Dagmar Munn

    Dagmar Munn and Profile picture of Lowell StewartLowell Stewart are now friends 1 year, 10 months ago

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    Lowell Stewart replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 10 months ago

    I see from the discussion that the stage of speech impairment is critical to this decision. In August 2019 I was still able tor read phrases more or less naturally and I’m glad I did. it’s nice to have my own voice on my SGD. Although I’m still able to talk with varying degrees of intelligibility.

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    Lowell Stewart replied to the topic CHAMPION ALS Trial in the forum Research Topics 2 years ago

    I too face two competing trials. One in Gainesville will test Metformin which is has been shown to slow progression in mice with the C9orf72 mutation. The other is the Healy platform trial which will take place in the New Orleans area. The Healy trial hasn’t started screening while the Gainesville trial has. I consulted with my neurologist and…[Read more]

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    Lowell Stewart replied to the topic ALS Clinics — Why Do You or Why Don't You Participate? in the forum Living With ALS 2 years ago

    I was diagnosed in June 2019 and attended my first ALS clinic in July 2019. I then went to the same clinic in October and January and switched clinics in March 2020. I was surprised when the new clinic offered me Nuedexta because it had not been offered to me before. I’m still able to talk and swallow solids and liquids which I attribute to the…[Read more]

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    Lowell Stewart posted an update 2 years, 1 month ago

    In reading the article about delayed diagnosis I’m prompted to tell my story. I had a bulbar onset that was so minimal that when I had my annual physical in April 2018 I forgot to mention it to my PCP. In October 2018 when I had continuing problems with speech, and fasciculations in my thighs, I contacted the ALS Center and saw a neurologist who…[Read more]

  • Profile picture of Amanda

    Amanda and Profile picture of Lowell StewartLowell Stewart are now friends 2 years, 2 months ago

  • Profile picture of Kathryn F. Kennedy

    Kathryn F. Kennedy and Profile picture of Lowell StewartLowell Stewart are now friends 2 years, 2 months ago

  • Profile picture of Lowell Stewart

    Lowell Stewart replied to the topic Genetic Testing in the forum Living With ALS 2 years, 3 months ago

    My cousin died of ALS in 2013. I first had symptoms in early 2018 and was diagnosed with ALS on June 6, 2019. Through genetic testing I found out I have the C9orf72 mutation. When I spoke to the genetic counselor she thought i was unlikely to fall into the category of familial ALS. After the test results she consider me as fitting into the…[Read more]

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    Lowell Stewart became a registered member 2 years, 7 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 7 months ago

      Hello Lowell,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also 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. If you have any questions, concerns or even…[Read more]

    • Profile picture of Amanda
      Amanda replied 2 years, 7 months ago

      Hello Lowell, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]

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