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Tomoko Zemman

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@tzemman

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    Tomoko Zemman replied to the topic ALSValor in the forum Research Topics 2 years, 10 months ago

    I applied for phase 3 trial at Emory university and Mayo Jacksonville, but could not get in either of them after phone interviews.  Neither of them were looking for people with slower progression type.   Applying is very easy and efficient.  Initially you apply online, then you will receive a confirmation by email.  Within a few days, a cli…[Read more]

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    Tomoko Zemman replied to the topic ALS and Traveling; Sharing Your Tips, Questions & Resources in the forum Living With ALS 2 years, 11 months ago

    I have been traveling with my manual chair by air, train, ships and cars without too many problems.  I even traveled alone from Texas to Canada a day after I received my chair!
    I went to one of John Morris’ travel seminars at an abilities expo right before I got my chair.  He uses a very heavy electric chair and he travels all over the world by…[Read more]

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      Amanda replied 2 years, 11 months ago

      Tomoko,
      Thank you for sharing! The more information and tips the better!
      Amanda

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    Tomoko Zemman replied to the topic Handicapped accessible – – or, not? in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 years ago

    I usually get a wheelchair accessible hotel room, but started bringing my own portable shower stool which collapses to a six-inch-diameter x two-inch-high disc in case they are not equipped with a shower bench. The grab bar sounds like a great addition. I will check in to it.

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    Tomoko Zemman replied to the topic can someone give advice? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 1 month ago

    Hello Mikael,
    I live in Austin Texas.
    When my genetic test for SOD1 came out positive, I felt like I hit a jackpot as I had been craving for an answer; however, I was told that some patterns of mutations in this gene can be benign by a specialist. I went back for more testing.
    I came across several reports which helped me understanding my…[Read more]

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    Tomoko Zemman replied to the topic can someone give advice? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 1 month ago

    Hello Mikael,
    Mine started with atrophy in both legs at least ten years ago. At that time I did not have other symptoms and I did not relate with NMD. Then I started having balance issues and hand tremor. When I realised I could not run 6 years ago, I kept ignoring the condition and blamed on ageing (although I was only in mid forties).
    Here…[Read more]

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    Tomoko Zemman replied to the topic can someone give advice? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 1 month ago

    Hello Mikael,
    I understand your frustration as I went though a similar experience. My case looked easier as my mother also had the condition, but diagnosed with spinocerebellar ataxia due to lack of genetic testing at the time. My diagnosis went from hypocondriac to ALS to ataxia and back to ALS over four years. I even got a doctor review my MRI…[Read more]

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    Tomoko Zemman became a registered member 3 years, 1 month ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 3 years, 1 month ago

      Hello Tomoko,
      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 3 years, 1 month ago

      Hello Tomoko, 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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