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    • #18363
      Kevin Schaefer
      Keymaster

      Hey everyone, here’s my latest column: https://smanewstoday.com/2019/04/16/marvel-movies-day-trips-adventure/.

      While I believe that those of us with SMA are fully capable of having active work and social lives, I also recognize that there are certain things that are outside our control. As such, I wanted to write about some of the alternative solutions I’ve come up with for things like traveling and transportation. And of course, I have plenty of Star Wars and Marvel references here. I hope you all enjoy!

      Can you relate to this? Do you have any tips of your own?

    • #18398
      Ryan Berhar
      Member

      Yes, I think that because so many things are off limits for us, we tend to cling tightly to the few things we can do, however insignificant they might seem.  Like for you, seeing the movie was a huge deal. For me, watching sports, tv shows, drinking coffee, playing chess, are a few of those things.

    • #18410

      Hi, Kevin!  As I shared with you the other day, I thought this piece was awesome and I enjoyed it very much. I relate to your insight, as well as Ryan’s comment.  🙂  I agree — movies, reading and other forms of entertainment are great outlets for freeing our minds a bit, and they can offer a fantastic sensation of adventure!

      As I mentioned in my introductory column, I’m sort of an adaptive recreation junkie.  And a nature nut.  Big time.  🙂  I love being outdoors, and I’m excited to write about some of these experiences.  Often, others will ask me about accessibility options for outdoor fun.  The thing is… it doesn’t have to be crazy, wild expeditions.  Anyone can have an adventure, no matter how small or large.  I honestly think it’s more about attitude than the location or agenda of the day.  Before I started searching for accessible hiking trails in my state and all around the Great Lakes region, I would hop on the paved bike trails in my area, or walkways along the river.  It wasn’t the Appalachian Trail (which I am determined to do a portion of some day), but it still felt satisfying to be discovering new things.  Then, I found progressively interesting, accessible excursions to embark on.  I like the challenge of figuring out what’s doable…and maybe what’s not.  Either way, new memories are made.  And, I can help others with what I continue to learn.

      My point is: I think it’s a matter of figuring out where your interests sit, and what you feel connected to.  Once you find that, opportunities can unfold. It may take some time, effort and creativity, but everything worthwhile does.  🙂

      • #18498
        Kevin Schaefer
        Keymaster

        Thanks Katie! I’m really enjoying your columns as well.

        And absolutely. I think having the right mindset is key. As people with SMA, we’re pretty adaptable and resourceful. When there’s something we really want to do, we can figure out a way to make it happen.

        I look forward to reading more about your outdoor adventures!

    • #18399
      Tracy Odell
      Participant

      Glad you meet you. I’m new to this forum. My first full-time job was absolutely amazing. I was given a lot of autonomy. At one point, my job involved going all across Canada to help set up literacy programs. I was young enough that I was unaware of all the things that could possibly go wrong – and when things did go wrong – it turned into a positive.

      So, for example, one time I flew from my home base in Toronto to Vancouver, B.C. When I got there I found out something had broken on my chair during the flight which prevented it from being charged. I was going to be there for a week and I knew I could not go that long without a charge. So going to the phone book (yes, this was before the Internet) I found a wheelchair repair place and when I explained what the problem was, they agreed to see me right away. And then because I was a visitor to their fair province, they refused to charge me for the repairs. At the same time, they did a workaround so that even when my chair was plugged in to be charging, I could still drive it a little bit which was very helpful. Normally when you are “plugged in” you are also locked in place.

      I am no longer able to fly. I now find it far too painful to be lifted into the seat and I am too anxious about the possibility of my high-tech electric wheelchair being broken in transit or lost altogether. I have been supporting the work of All Wheels Up – a group that is lobbying for people to be able to fly while remaining in their own wheelchairs in the cabin of the aircraft. In Canada, our transportation regulations are under review and it has given many Canadians an opportunity to write the Prime Minister to change the regulations governing domestic air carriers to make flying a possibility for people like me who cannot be separated from their wheelchairs while travelling.

      Has anybody else had experience flying? Would being able to fly in your own chairs make travelling more possible for you? Are you involved with the work of All Wheels Up?

       

      • #18497
        Kevin Schaefer
        Keymaster

        Thanks for sharing Tracy!

        I have limited experience with flying, but I will fly this summer to go to the SMA conference in California. And actually I interviewed Michele Erwin from All Wheels Up earlier this year: https://m.soundcloud.com/sma-news-today/sma-news-today-podcast-25-interview-with-michele-erwin.

      • #18505
        DeAnn R
        Keymaster

        Tracy, sounds like you’ve had some amazing adventures. I’ve only flown once in my life and we took my manual chair as to not wreck my electric one. Now I just can’t imagine getting transfered to that airplane chair then to the seat on the plane at this point in my life, so I don’t even entertain the idea. If I could stay in my chair it would make the world accessible.

      • #18506
        Patrick Lenihan
        Participant

        I have flown a lot. While I would be more comfortable flying in my own chair it isn’t a deal breaker for me. The most difficult part of flying for me is dehydrating myself before the flight so I won’t have to use the bathroom while in the air. I would love it if the bathroom was at least aisle chair accessible. I did have an airline lose my chair once. They left it in the jet way at Newark when I was on my way to Seattle. They found it and got it back to me the next day but I had to use their crappy loaner that night.

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