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  • ALS Awareness Month 2021 Spotlight: Kathy Stitz

    Posted by Dagmar on May 3, 2021 at 11:40 am

    Hello Everyone! We’re kicking off ALS Awareness Month 2021 here in the forums with our first member spotlight about Kathy Stitz. We thank Kathy and everyone who’s submitted stories for our ALS awareness month project. These will be featured every Monday in May. Look for future announcements of our other member events that will also be happening this month.

    “My ALS Story” by Kathy Stitz

    I started having symptoms of ALS in September 2019. I had lost a lot of weight and was beginning to have trouble speaking. Over the course of the next 9 months, I went to several doctors and had a lot of tests done to try to determine what was wrong with me. I was diagnosed with bulbar-onset ALS in June 2020. I was 43 years old.

    When I was diagnosed, I didn’t know anything about ALS. Most people don’t know anything about it until they are diagnosed with it or a family member is diagnosed with it. ALS is very rare and we need to make more people aware of this condition and the devastating impact it has on those who suffer from it. There is currently no cure for ALS and we really need a cure!

    It has been very difficult for me to cope with this diagnosis. I have experienced depression, sadness, frustration, anger, and denial. I have wasted too much time being depressed and being angry that this has happened to me. Time is precious when you have ALS. You have to make the most of each day and appreciate and enjoy things whenever possible.

    It has now been almost a year since I was diagnosed with ALS. I can still walk but I have a lot of difficulty with speaking and eating. Not being able to communicate effectively has been embarrassing for me. I am in the process of deciding whether or not to get a PEG tube. I deal with emotional and physical pain every day.

    I live with my mother and I am so grateful to have her. I’m grateful for my family and friends and for the medical professionals who have helped me. Thank you to ALS News Today for giving me the opportunity to share with others who understand what this experience is like. This is a journey that none of us have chosen but all we can do is try to take care of ourselves mentally and physically, get support when we need it, and try to help others as well.

    #ALSAwarenessMonth #StrengthInCommunity

    Kathy stitz replied 3 years, 2 months ago 5 Members · 5 Replies
  • 5 Replies
  • Dagmar

    May 3, 2021 at 11:45 am

    Thank you Kathy for sharing your ALS story with us!

  • Cindy

    May 4, 2021 at 5:04 pm

    Kathy brava for sharing your story. No matter the type of onset or the duration of the disease your feelings and emotions are normal and justified. May your journey bring you close to God.

  • Amanda

    May 5, 2021 at 11:31 am


    Thank you so much for sharing and for all the support you offer our community members.  I learn more from you than you will ever know. I’m sure writing about your experience cannot be easy, but you did a wonderful job. You are such a beautiful person inside and out. Please continue to keep us posted on how you are feeling. Again, thank you for helping raise awareness and for supporting others.

  • Marianne Opilla

    May 5, 2021 at 4:51 pm

    Thank You Kathy for your story.  We are all in this same boat together and your feelings are appreciated.  Like the floating raft picture. Looks like a good day.

  • Kathy stitz

    May 5, 2021 at 5:22 pm

    Thank you everyone for your kind comments.   I’m grateful to Amanda and Dagmar for allowing me to share my ALS story.  This has definitely been a life-changing diagnosis for me.  I hope we can all continue to help and support each other and continue to raise awareness about ALS and how it affects pALS.

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