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    • #15434
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all having a great week so far.

      Check out our last feature for ALS awareness month. Thanks again to everyone who has shared stories for this project!

      This is Denise Hagen’s story:

      “I’m the spouse of a person with ALS. We’ve been married 43 years, and were two weeks away from starting our dream retirement when he was diagnosed in January 2019. We aren’t able to carry out most of our original dreams, but we are working hard to create a life that gives us joy.

      [caption id="attachment_15435" align="alignnone" width="300"] Contributed by Denise Hagen[/caption]

      One of the first things I remember the “ALS experts” telling us was that living with ALS would become our new normal. I couldn’t even imagine that would ever happen. We were still in denial. Well, over a year since his diagnosis, I understand what they were saying. It’s certainly not normal, but we’re not in a breathless panic every waking minute of every day anymore. We’ve entered the coping phase, as his condition progresses. The biggest emotional struggle we have these days is how to appropriately talk with our four grandkids about what’s happening with their beloved Papa. We want to be able to tell them that Papa will be okay, just in a different way. We’ll never quit looking for ways to stop the progression of this disease. We still have a lot of life to live, and laughs to have with family and friends. #WhatALSistome”

    • #15447
      Bill
      Participant

      I was diagnosed Jan 2018. I have different aged grand kids. I’m “lucky” that my progression was slow coming on and slow ongoing. Honesty was best with oldest 16 years old at the time. Fortunately, my description of its going to be slow was honest.  The youngest was 8 and we told him that I have a nerve issue. Because I am slow they have only seen  minor  changes in my interaction with them. It will progress of course but hopefully still slow enough that it be not traumatic to them.
      Denise, my wife and I are very much like you and your husband as I was preparing to retire when I was diagnosed. Definitely changed our retirement expectations. My grandkids will be fine. It’s my wife that will need more support.  My best wishes to you both, may we all live a long time.

    • #15448
      Maria Berger
      Participant

      Hi Denise,

      Thank you for sharing! I am in somewhat of the same situation although not in the coping phase yet. I was diagnosed 1 week ago And I am still thinking: This can’t be true!
      We have been married for 42 years, I retired 5 months ago and now this! We also have grandkids so I know how you feel.

      I just hope and pray that a treatment will be found to at least stop the progress.

      my Neurologist prescribed me Riluzole. Is your husband taking this medication also?

      Thanks again for sharing!

      maria

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