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    • #21383
      Amanda
      Keymaster

      It is always a little difficult for me to watch a movie or documentary about ALS. Not because I don’t enjoy the movie or learning something new; but because after losing so many family members and knowing that it is highly probable that I will have ALS; I just have to be in the right mindset.

      So, I recently watched the movie, You’re Not You with Hillary Swank. Although the main character had ALS, I found that I really got into the storyline outside of the ALS part too.

      Although they skipped over much of the character’s early progression, which I suppose they needed to for time sake, they did show how she declined and the frustration and obstacles she encountered.

      Have you seen this movie? What did you think about how ALS was depicted? Did you enjoy the movie or do you avoid movies with ALS?

      Amanda

    • #21390
      Carolyn Barry
      Participant

      I have not seen this movie, and I purposely avoid any movie which is about someone who has ALS.  I find it too difficult as it would give me a greater worry about my future, and what I might be like, as the disease progresses.

    • #21404
      Kathleen B (Katie)
      Participant

      I, too, am not ready to see movies about someone who has ALS…but I am just 8 months into being a pALS.   I am making a list as I see items mentioned…and I would like to watch these with my husband caregiver at some point…but not yet.   My 1st choice of ‘to come’ learning is having made the decision to re-read “Tuesdays with Morrie” (written by Mitch Albom).   I read it last some 35 years ago when I was going to college and it was assigned reading for a class.  ‘Morrie’ was a favorite college instructor of Mitch’s college days, a guy he admired and kept up with for years beyond college…and he writes about his visits with this friend upon learning of his ALS diagnosis and thru the journey.  I think ‘in print’ form I can handle things better at this point, and find it easier to share with those I love dearly, rather than seeing the visual reality.  (it’s the same reason I have not joined in any Zoom pALS meetings yet as well).    Best wishes to you Carolyn; & thanks Amanda for starting a new thread.

       

    • #21426
      Len Jax
      Participant

      Amanda,

      I did not watch “You’re Not You,” but I usually do like movies or documentaries about ALS.  Strangely, they often provide comfort to me.

      I recently watched the PBS point of view (POV) special “Not Going Quietly.” It is the story of Ady Barkan’s life, a political activist.  His life was turned upside down when he was diagnosed with ALS shortly after marriage.  He, by a chance encounter, spearheaded a cross country-movement for universal health care and women’s rights.

      I watched it with my wife/caregiver, and we each had a pile of tissues on the end table when it was over.  My pile was much larger, but there was not a dry eye in the house. It is an endearing story of his quest to make a difference for the greater good after his diagnosis of ALS.  My regret is that I did not hear of him until now.  I would have joined him in my wheelchair on his cross-country mission!

      I find that if I grieve for the character in the movie, and shed tears for their loss, I have great sense of release that allows me to move on.  I did watch it again two days later and only used one tissue toward the end to wipe away a single tear.  I was then able to understand the true meaning of his journey.

      Len

       

       

       

      • #21429
        Amanda
        Keymaster

        Len,

        That sounds like a very moving documentary. I am going to have to watch that too. I think it helps me in many ways also.

        Amanda

    • #21439
      Dagmar Munn
      Keymaster

      I watched this movie when it first came out in 2014 – – and din’t like it at all. I wrote a review about the movie here: https://alsnewstoday.com/forums/forums/topic/youre-not-you-starring-hilary-swank/

      Basically, it’s a lesson in “what not to do” when you have ALS. It made me angry that non-ALS viewers would get the wrong impression about a lack of support for ALS patients. Luckily, we have ALS Clinics, this forum, and helpful caregivers.

      • #21465
        Amanda
        Keymaster

        Dagmar,

        You are right!! I would imagine that many people with ALS, and other illness fall into a similar pattern of guilt and family and friends not understanding or supporting. In many ways I’ve seen many of my own relatives do the same thing!

        This movie does highlight the need for things like Rare Disease Day and ALS Awareness Month!! We definitely need to get the information out there to let caregivers and friends of pALS know what to do, and what not to do!! I think our forum members and ALS News Today are part of that solution.

        It is wonderful to get different perspectives and thoughts on things, including movies!! Sharing ideas and information will always help us to move forward and improve. Thank you Dagmar.  If anyone has not yet read her review, I would encourage you to do so.

        Amanda

      • #21466
        Amanda
        Keymaster

        Dagmar,

        You are right!! I would imagine that many people with ALS, and other illness fall into a similar pattern of guilt and family and friends not understanding or supporting. In many ways I’ve seen many of my own relatives do the same thing!

        This movie does highlight the need for things like Rare Disease Day and ALS Awareness Month!! We definitely need to get the information out there to let caregivers and friends of pALS know what to do, and what not to do!! I think our forum members and ALS News Today are part of that solution.

        It is wonderful to get different perspectives and thoughts on things, including movies!! Sharing ideas and information will always help us to move forward and improve. Thank you Dagmar.  If anyone has not yet read her review, I would encourage you to do so.

        Amanda

    • #21469
      Dustin Kassman
      Participant

      I have not watched “You’re Not You”, but I have put it on my list. One ALS-featured movie that resonated with me was “Blackbird” with Susan Sarandon.

    • #21477
      Meri
      Participant

      I saw this movie a couple of weeks ago and I loved it! I have ALS and it doesn’t bother me to watch movies about it. In fact, it normalizes my experience a little bit. I wasn’t bothered by the lack of resources shown in the film; it wasn’t part of the story line and it didn’t need to be there for the story to be effective.
      (I attend an ALS clinic and get heaps of support from ALS Association).

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