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  • The many difficulties of having ALS

    Posted by kathy-stitz on November 18, 2020 at 1:49 pm

    There are many things that are difficult about having ALS.  It is a rare condition that has no cure.  Many people don’t even know anything about ALS.  Before I was diagnosed, I didn’t know anything about ALS.  There are even doctors who know little about it.  When I asked my primary care doctor, “How much do you know about ALS?”, she said “Not very much” and said that I am her only patient who has ALS.  Sometimes it takes a year or longer to even be diagnosed because you have to go to many different doctors and have a lot of tests done.  It is very shocking and upsetting to get the diagnosis.  Then you have to deal with all of the issues that it causes, both physically and psychologically like difficulties with eating, speaking, breathing, and walking.  Life as you knew it will never be the same and it is hard to cope with and adjust to this new life.  There are so many feelings and emotions involved and it takes a lot of courage and strength  to be able to deal with all of them.  Getting support from others and trying to have a positive attitude are things that are important.   We can all support each other and learn from each other and that is helpful in coping with all of these difficulties and trying to still live well despite having ALS.

    kathy-stitz replied 3 years, 2 months ago 1 Member · 1 Reply
  • 1 Reply
  • kathy-stitz

    Member
    January 10, 2021 at 7:55 pm

    Any other comments?

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