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Cyndi Zach

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@cyndienter

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    Cyndi Zach replied to the topic Radicava? – – What advice, comments or tips do you have? in the forum Living With ALS 2 years, 3 months ago

    I will be starting Radicava in oral form this month as part of an efficacy and tolerance study through my ALS clinic.  The drug will be new for me.  Same schedule as the iv form.  I’ll keep you updated.

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    Cyndi Zach replied to the topic Finding the funny – – even in ALS?? in the forum Living With ALS 2 years, 4 months ago

    I laugh at myself every morning when putting a bra on; I can really work my way into some pretty funny positions.

    I also had a good laugh with myself one day trying to pull a hooded sweatshirt on.  It was like being in a straight jacket!  I really thought for a few minutes I was going to have to call 911 to rescue me.  My arms were caught ha…[Read more]

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    Cyndi Zach replied to the topic Are you a pALS who still works? in the forum Living With ALS 2 years, 4 months ago

    I have had ALS for 1+ years; have 95% disability in my non-dominant arm, and am now experiencing weakness in other arm and one leg.  I can still walk and no vocal, breathing loss yet.  I work full time and have a 100+ mile commute round trip; also work 12 hr days w/commute, 4 days/week.  I plan to retire next month due to concerns regarding dr…[Read more]

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    Cyndi Zach replied to the topic Calling all pALS 1+ years with ALS: Let’s help our newly diagnosed members in the forum Living With ALS 2 years, 6 months ago

    Thank you all, especially Wendy for your words of wisdom.  As many have experienced, after many not-helpful MD assessments, I was diagnosed in 08/19; onset 02/19, limb onset.  After reading Dagmar’s story and column contributions, I am convinced attitude has the biggest impact on longevity.  And I as every other PALs truly struggle with that.  I t…[Read more]

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    Cyndi Zach's profile was updated 2 years, 6 months ago

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    Cyndi Zach replied to the topic Are you getting a flu shot this year? in the forum Living With ALS 2 years, 6 months ago

    Bob, while you are not in the recommended age group for the pneumonia vaccine, you do qualify with an underlying medical condition.  Walgreens would not be able to make this determination; however your primary care provider or your local health department can.

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    Cyndi Zach replied to the topic Acupuncture: Have You Tried It? in the forum Living With ALS 2 years, 6 months ago

    I was diagnosed in August of this year, and immediately started acupuncture,  most often twice a week.  Being newly diagnosed i can’t say whether or not disease progression has slowed, but i do notice less frequent and less intense muscle twitching.   Unfortunately insurance does not cover the cost.

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    Cyndi Zach became a registered member 2 years, 6 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 6 months ago

      Hello Cyndi,
      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]

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      Amanda replied 2 years, 6 months ago

      Hello Cyndi, 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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