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    • #19400
      Dagmar Munn
      Keymaster

      This is a commentary on Amazon’s “Solos” – – you can read the full column here: ALS Recognition Is Growing in Hollywood.

      Outside of the ALS community, ALS is not that well-known. It’s hardly ever mentioned in the mainstream news unless a celebrity happens to die from it. And the lack of public awareness of ALS is a topic of constant debate among patients.

      That’s why I was jolted into attention the other night when I realized ALS was a plot point in the TV show I was watching called “Solos.“ It happened in the first episode, titled “Leah,” of the newly released series streaming on Amazon Prime Video.

      In this episode, Anne Hathaway plays the role of a scientist in the year 2024 who is attempting time travel. Her mother has ALS, and Hathaway’s character wants to jump forward in time to bring back a cure. But she knows that time travel has its own consequences, which is a risk she’s willing to take. I won’t spoil the ending for you, but I encourage you to watch it and the other thought-provoking episodes in this series.

      To me, having ALS serve as a plot point is a welcome sign of recognition — something I wrote about in my column “Let’s Go to the Movies.”

      It tells me that perhaps the writers and directors had family or friends affected by ALS. They know there’s no cure, and for most patients, the prognosis is short. They may have heard of Stephen Hillenburg, creator of SpongeBob SquarePants, who lived only one year with ALS and died in 2018. Or, Nanci Ryder, a celebrity publicist, and Mari Winsor, known as the Pilates guru and trainer to stars, both died of ALS last year.

      Have you watched “Solos” and what did you think of it? Do you feel how ALS was represented will help or hurt awareness advocacy? Are Hollywood and other media groups doing well to include ALS and other rare diseases in their productions? Can they do more?

    • #21671
      Mark
      Participant

      I watched the Solos story with Anna Hathaway and it left me with nightmares.  There was nothing positive about it.  Yes, she loved her mother who was stricken with ALS, so very much that she didn’t have much time to spend with her mom because she was so absorbed trying to go into the future to find a cure. I also won’t give the ending away, but I was devastated with the story. I chose not to watch any more of the Solos episodes.  Depression is not my idea of enjoyable TV watching, since TV watching is mostly all I have nowadays.

      • #21674
        Fran Finney
        Participant

        Although this episode might help raise awareness that ALS is not easy on people with ALS or their loved ones, and also help raise awareness that ALS is a fatal, not curable disease, like Mark, I found the episode to be disturbing. The ending might be considered “happy” (if you can accept the consequences), but I did not leave feeling happy at all.

      • #21675
        Fran Finney
        Participant

        I accidentally submitted this second reply and can’t figure out how to delete it! But I will clarify that I think raising awareness is important, and that Hollywood is trying to do that. But often their portrayals can be painful to watch.

        • This reply was modified 8 months, 2 weeks ago by Fran Finney.
        • This reply was modified 8 months, 2 weeks ago by Fran Finney.
    • #21679
      Jan: CA, pals
      Participant

      In my opinion, you watch a movie or series to be entertained and folks do have a variety
      of definitions for entertainment. For me, when a movie or series is over, I want to have that feel-good feeling, be hopeful to recommend it to friends and know it wasn’t a waste of my (precious) time. In other words, 5 out of 5 stars!!!

      If two out of two people rate Solos: not worth watching, gave them nightmares, depressive, painful to watch/not easy to watch, disturbing, negative/nothing positive… than for me, it would be a big waste of my (again) precious… time! Zero stars.

      Ohhhhh YES, awareness is indeed important: I totally agree with that. When I was first diagnosed with ALS, I really knew nothing about it and spent everyday for the next two weeks reading everything that I could find online: everyday sinking further into a deep depression.

      Fortunately, I buried myself behind the shield of the Covid quarantine and did not see or tell anyone close to me about my diagnosis for well over a year.

      Depression really set in and it took me that entire year before I started a slow spiral upwards. Now, without your being judgmental of how I shared my new label: “I have ALS”… I had to feel comfortable with it before I had the courage to say it out loud and tell others. Alone is a real painful place to be. Sad. But I had to deal with it the only way I knew how.

      So when it comes to any depressing movie, thought, news, wars, even people… I want to live in LA-La Land. I don’t need zero stars in my life! Maybe that is not a realistic attitude but that is how I am surviving for right now. My center is 5 stars!

      Thank you for letting us know about Solos and to Mark and Fran for your honest review.

    • #21682
      Amanda
      Keymaster

      I think it is interesting to hear different people’s approaches to life, including what they choose to watch and how they choose to spend their time. Yes, their Precious time! There is no right or wrong answer. As Dagmar always advocates, we must take care of our own mental health. We know ourselves best, and what serves our minds and bodies best. It isn’t self-fish, right or wrong to do what is in our best interest.

      I haven’t watched Solos yet. Like I’ve mentioned before, I really need to make sure I am in the right place mentally to watch anything about ALS.  I tend to get more absorbed into the story line where others notice things like how accurately pALS are portrayed.  I do notice those details more and more as time passes.

      When I do watch Solos, and I will, I’ll add a post. I enjoy reading other members comments and reflections.  Your input is great food for thought and helps to put things into to perspective.

      Amanda

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