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    Celebrating “Inchstones” in SMA

    A mother’s perspective: How our family measures progress since treatment

    You couldn’t picture a happier or more beautiful little boy than the one who came into our lives on January 4, 2019. Little did we know, this bundle of joy we named Slade was just starting a journey that was going to change our family’s life.

    About 2 weeks after Slade was born we started to notice that he appeared to be a bit floppy. Our pediatrician chalked it up to him being a calm baby and told us he’d eventually grow out of it. With my husband being a chiropractor and my background in early childhood development, we knew something was wrong–we could just feel it.

  • This topic has 16 replies, 6 voices, and was last updated 1 year, 9 months ago by David Z.

    • Author
      • #11937
        Kevin Schaefer

        In DeAnn’s recent vlog, she talked about a few of her hobbies, and how they help her relax and deal with SMA-related stress.

        I’m curious to hear from you all about some of your hobbies and creative outlets. For me I enjoy reading, watching movies, podcasting and creative writing. I’m also looking to get back into theater, which I did growing up.

        What are some of your favorite things to do in your spare time?

      • #11965
        Adnan Hafizovic

        Like you and most people with SMA ,my hobbies are watching movies,tv series,reading books and comics,sometimes i play video games.And I also translate books from English to Bosnian language.That way I practice my English.Well my hobbie can be also, I like meet more people with SMA on Facebook all over the world.

        • #11969
          Kevin Schaefer

          That’s great Adnan! Yeah it’s amazing the things technology allows us to do these days, and how we can connect with people all around the world.

          What kind of books/movies/tv shows do you like?

        • #11971
          DeAnn R

          If you have any favorites please share Adnan!  I’m always looking for good movie/reading recommendations.

      • #12005
        Adnan Hafizovic

        here is my recomendations:No man s land – is bosnian movie and he won Oscar for best foreign movie 2001.Theme is about war in Bosnia.

        <i><b>In the Land of Blood and Honey</b></i> 2011-this movie directed Angelina Jolie,In the 1990s, in the wreckage of Sarajevo during the wrath of the Bosnian War, Danijel is a soldier fighting for the Bosnian Serbs. In a prisoner camp led by his strict father, the ruthless Yugoslav People’s Army (JNA) general Nebojša, he finds Ajla, his former love, who is a Bosniak (a Bosnian Muslim) and therefore a prisoner. The Bosnian Serb policy against Bosniaks, and the secrecy of their relationship before the war, may endanger the lives of the former lovers.

        <i><b>The Nice Guys</b></i> 2016 starring:Russel Crowe,Ryan Gosling,genre:action comedy.

        <i><b>Gold</b></i> is a 2016 American crime drama,starring Matthew McConaughey.

        Now I watched all movie from director Christopher Nolan.He had good SF movies like:<i><b>Interstellar</b></i>,<i>The Prestige</i> , <i>Inception</i>,

        TV series:my favourite is Netflix”Narcos”,now I watch “Lost” is old series it is good,probably you re watched.

        And DeAnn now I read book from Diana Gabaldon-Outlander and has eight books.This book is genre adventure and love.

        • #12006
          Kevin Schaefer

          Thanks for the recommendations! I’m also a big Christopher Nolan fan. I love Inception and Interstellar. I watch all kinds of movies, from big blockbusters to indies. I go to the movies at least once a week, sometimes two.

          As far as what I enjoy reading, I read mostly comics and memoirs/autobiographies. I really enjoy people’s life stories, whether they’re celebrities, public figures or people with disabilities. And as far as comics, I read everything from mainstream superhero titles like Batman and Daredevil and blockbuster titles by Robert Kirkman, and also obscure indie titles.

          Some of my favorite tv shows are Stranger Things, The Office, Parks and Rec, Daredevil, The Flash, Breaking Bad, Sons of Anarchy and How I Met Your Mother. I’m always down to talk pop-culture!

      • #12007
        Adnan Hafizovic

        And Kevin Im also a big fan of Star Wars franchise.I also wached all super heroes movies my favourite is Batmans movies and first three Spiderman movies.

      • #12024
        Ryan Berhar

        I watch a lot of sports and Netflix. Video games were my main hobby at one point, but I’ve lost so much of my hand function that it’s not even much fun for me anymore. I’ve loved playing chess for most of my life. Chess is fantastic for people like us because it is 100% skill. No physical ability is required!

        • #12352
          David Z

          Have you tried PC games with a touchpad as a mouse? Many only need that, and the sensitivity can usually be set very high.

          Plus, you can use speech recognition software to do keys. I’ve set it up so I just yell “alpha” to tap A, et cetera.

          Lastly, I’ve written some software so when I hum, it simulates holding a key as long as I sustain the humming. That way, you can “steer” with a touchpad and move forward by humming.

      • #12030
        Adnan Hafizovic

        Ryan I like also watch sports ,like most European I like soccer.And also play sometimes video games now I only play racing games.In past I played often chess ,specialy when was war in Bosnia.We haven t electricity and we can t go out because was bombing,and in shelter me and my friends play alot chess and cards.But in last few years I start to play again chess.That is really old and game for smart people,and of course like you said you don´t need physical ability to play.You just need a good brain.

      • #12031
        Adnan Hafizovic

        And Kevin do you have some recomendation for comics,In wich main charachter isn´t superhero who has supernatural ability?

        • #12036
          Kevin Schaefer

          Oh yes, I have several.

          -“American Vampire” by Scott Snyder and Rafael Albuquerque

          -“Curse Words” by Charles Soule and Ryan Browne

          -“Monstress” by Marjorie Liu and Sana Takeda

          -“God Country” by Donny Cates and Geoff Shaw

          -“Saga” by Brian K. Vaughan and Fiona Staples


          I can recommend creator-owned and mainstream comics all day long haha.

      • #12040
        Michael Morale

        For nearly 2 years, I have had my YouTube channels that have kept me occupied. One of the things that I want to learn was how to create videos and then edit them. I’ve learned how to edit my videos and I think I’ve done a pretty good job on both of my channels. While my primary focus is on my YouTube channel for my SMA journey, my other hobbies have also been watching movies on either Netflix or my Amazon prime account, and recently, I started subscribing to audible.com so that I could listen to books. Physically holding a book for me is very difficult, but listening to a book requires nothing more than a click of the mouse. With the number of books that are out there that have been converted to audio files, this should keep me entertained for many years. The subscription is about $15 per month, but you get one free book per month and you are able to carry over if you do not purchase a book for three months. One of my biggest hobbies used to be fishing, but since I lost much of the strength in my left arm, I haven’t been able to fish for nearly 15 years. Maybe my treatments and my physical therapy will allow me to regain enough strength so that I can continue my love of fishing.

      • #12053
        Adnan Hafizovic

        Michael when I was a kid I used to fo on fishing with my cousin.I really enjoy in fishing,but like you losing my strenght I loose really nice hobby.At least I can and I love to eat fish specially a trout.And I like to watch on documentary channels emission about fishing.

        • #12056
          DeAnn R

          Adnan, I haven’t been fishing for years, but when I did I would always hope to catch small ones so they wouldn’t take the pole with them.  Still like going out to the lake even if I don’t fish.

          Kevin, Sorry to say not much into comics, but I’m a fan of the Walking Dead.  Are those comics any good?

          Michael, what editing software do you use?

          Ryan, a little jealous you can play chess.  I’ve played but not very good at it.  Kind of miss the days of ATARI where the controller was one button and a joystick.

          • #12058
            Kevin Schaefer

            DeAnn I gave up on The Walking Dead show a while ago, but the comics are much better. The artist came to my local comicon a few years ago.

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