Note: I have cerebral palsy (mild spastic diplegia) and came to Hanger Clinic for bilateral ExoSyms with knee sections. Not many people have two Exos with two knee sections. Your experiences might vary widely from mine, especially as far as mobility in the first days.
- After my test device trip, I knew I would need trekking poles. I practiced with them months beforehand and brought them with me for training week. They have some there for you to use, but if you need them for training, chances are you will need your own when you leave.
- Be prepared to wait. Use the time for bathroom/water/food even if you think it’s only going to be a minute. The first day, I was there for several hours and didn’t drink anything or have a bathroom break. The room with the cubbies (where my water bottle and snacks were) is at the other end of the gym from the restrooms. And I could hardly walk once I had the Exos on, so I felt a little bit stuck.
- Be prepared for a schedule different than the one they email you beforehand. I was able to come in earlier on several of the days. For me, the test device trip was our sightseeing trip. This one was all work (and rest).
- Tell Ryan as soon as you realize if something doesn’t feel right. He’s booked throughout the day, so he was trying to make adjustments for me as well as see other patients, and the wait-time was long. The earlier he knows, the earlier the chance you have of getting out of there.
- Ryan and Jared have different styles and approaches, and you might hear pointers and ideas that seem to be in opposition. It’s a lot to take in.
- If you have a support person with you, ask them to take notes for you and put a star by the cues that work well. We hear so much information throughout the week, and we’re supposed to synthesize so many actions simultaneously.
- Ask your support person to take a lot of pictures and video. Not only is it great to have documentation of where you started, it will also be helpful if you can record Ryan or Jared as they are explaining how to do a particular movement, especially to share with your physical therapist when you are home.
- Do go back to the clinic to work and practice as much as you can. Two of the days I had good, long sessions alone, and it was really what I needed. Especially as an introvert. It takes time to process and apply all that we’re learning. Plus, most of us don’t have parallel bars and a mirror at home. I really miss practicing with parallel bars.
- Jared has thousands of hours of experience, but he only just met you. He doesn’t know you or your body yet, and there’s really no time to build that relationship. It’s an opportunity for you to try to be more like the person you want to be (for me, braver), but he also won’t know when he’s reaching your limit unless you tell him. He only started figuring out the strategies that worked best for me, both physically and psychologically, on the last day. We finally start to get to know each other and then our time is at an end.
- Jared will ask you if you have any goals before you get started, so if you don’t want to be caught unprepared, think of a few ahead of time.
- Wide Shoes Only is more than a recommendation. I highly urge you to do what you can to go there.
- If you are flying, try to leave lots of room in your luggage or bring an extra suitcase. I would not have wanted to wear my Exos through an airport or on a flight, and two Exos with two knee sections take up a lot of space. There will also be extra knee sleeves and heel lifts, plus the shoes that fit your Exos, and any additional shoes you buy.
- Join the ExoSym Facebook Group if you haven’t already. It’s nice to have a community.
What Happened to Your Legs? 