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    • #21698
      Amanda
      Keymaster

      When I first learned just how prevalent ALS was in my family, I read everything I could about ALS. At that time, in the early 2000s, there really wasn’t that much information available.  I went through phases where I needed to stop and not think about ALS, or the possibility of having ALS in the future. With a familial history like mine, that seems unlikely. So, I often ask myself, is there such a thing as having too much information?  Do we prepare ourselves by being informed of the possibilities and changes to expect; or do we overwhelm ourselves and bring on symptoms (or anxiety-related illness).

      What do you think?  How do you balance information intake? Do you think there is such a thing as information overload when it comes to ALS or do you believe it is better to be more knowledgeable and prepared?

      • This topic was modified 6 months ago by Amanda.
      • This topic was modified 5 months, 4 weeks ago by Kevin Schaefer.
    • #21719
      Kris
      Participant

      <p style=”text-align: left;”>My husband and I need information to plan for the future and make decisions. I’m not sure there can be too much information for us. We have been very frustrated when the answer to our questions about what changes in my abilities we should be prepared for has been “everyone is different” which although true is not at all helpful. We understand timing may vary but based on the experience of our medical professionals with many pALS there are some changes that are likely.

      </p>

    • #21727
      Duane
      Participant

      Kris, here is information that may help you. Although sometimes people progress slowly, sometimes very slowly. There really is no way of knowing how it will effect you until it does.

      Stages of ALS

      The The ALS Association is a reliable source of information. 

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