Log In or Register to Join The Conversation!

Sponsored Post

How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 23 replies, 7 voices, and was last updated 2 years, 2 months ago by Kevin Schaefer.

  • Author
    Posts
    • #11859
      Kevin Schaefer
      Keymaster

      Given that it takes time for me to get situated in my wheelchair in the morning, I just stay in it until the evening when my caregiver comes back. Between my external catheter, my tray and my robotic arm, it’s too much of a hassle to transfer if I don’t need to. Still, there are times when I’d really like to get out of my chair and either to a couch or my bed during the day. Yet since I know I’m more independent when I’m in my chair, I just resort to staying.

      What about you all? Do any of you try to get out of your chair during the day? If so, who helps you?

    • #11944
      DeAnn R
      Keymaster

      Basically I live in my wheelchair.  The only time I’m out of it is once a day to go to the bathroom and at night to sleep.  By morning I’m usually ready to get back into it.  Even the handful of times I’ve been in the hospital I stay in my chair as long as possible.  When I was younger I was asked if I wanted to sit on the couch or in the recliner.  My answer was always no.  Although it looks comfortable for me it’s just awkward and frankly a hassle.  My chair has a custom molded backrest and tilt, so that’s helped my comfort level quite a bit throughout the day.  I’ve also taught my service dog to pull my feet forward.  Now if it came with built in massage and heated/cooling seats I would be set!

      • #11947
        Kevin Schaefer
        Keymaster

        That would be awesome! Funny story about the massage thing actually. One of my best friends in middle school heard my chair making noises in class when I would adjust my footrest. It made this kind of vibrating noise, and he came up to me one day to ask if I had a built-in massage lol. That marked the beginning of our friendship.

        But yeah I definitely spend the majority of my time in my wheelchair. There are times when I’d like to sit on the couch or a chair while I’m just relaxing, but the transfer process is kind of a hassle. Sometimes I read in bed instead of in my chair, but if I’m writing or doing anything with my phone or iPad I have to be in my chair.

        • #12137
          David Z
          Participant

          I spend much more time stretching out in bed now that I can use a computer easily from there. I’m actually more productive there since I can talk more easily/clearly and thus “type” more quickly via voice recognition, and it’s not difficult to setup a touchpad to serve as a mouse if desired. It’s hard to beat for comfort.

        • #12146
          DeAnn R
          Keymaster

          David, you’ll have to make your bed voice activated next!  Glad you’ve found somewhere you can be comfortable and productive.  Do you use a hospital bed?  I’ve never found bed to be very comfortable.

        • #12164
          David Z
          Participant

          I just use a normal bed: an old sleep number air mattress. I also have an extra soft memory foam mattress topper, however, which makes a big difference.

          https://www.mattresstopper.com/product/gel-swirl-memory-foam-topper/

        • #12187
          DeAnn R
          Keymaster

          Big fan of memory foam toppers! Ever since my spine was fused it’s a must.  Probably dating myself, but I did love my waterbed. Especially because it was heated.

        • #12229
          David Z
          Participant

          Speaking of heated, I just heard of this:

          https://www.chilitechnology.com/

        • #12239
          DeAnn R
          Keymaster

          I love my heated mattress pad!  Don’t know if I’d ever make use of a cooling feature.  There’s always a disclaimer about not using them if you’re disabled, but it’s so nice getting into a warm bed.

        • #12147
          Kevin Schaefer
          Keymaster

          I’ll keep that in mind David. Rarely do I do anything other than read and sleep in bed, but I’ll look into this technology. Thanks for the tip!

    • #12113
      Michael Morale
      Keymaster

      I usually get up around 7 o’clock in the morning and I typically do not go to bed until around 10 o’clock in the evening. Only on rare occasions do I get out of my wheelchair during the day. I guess over the nearly 53 years of my, I’ve learned to change positions in my wheelchair multiple times during the day so that I do not need to get out of my wheelchair. On the rare occasion that I do get out of my wheelchair and lay down, it definitely feels good.

      • #12125
        Kevin Schaefer
        Keymaster

        Yeah often when I’m done working for the day, I like to recline in my chair and listen to music on my Echo Show. This helps me wind down and not stay in the exact same position all day. Occasionally on weekends I ask my Dad to lift me out of my chair during the day and into my bed for a few hours, but rarely. I too have become quite accustomed to getting and staying in my chair throughout the day.

    • #12149
      Ryan Berhar
      Keymaster

      I get out every three hours or so. For one, to pee, but I also get sore if I stay in my chair too long. I have always been encouraged by PTs and whoever else to get out and stretch every two hours. While I’ve  always thought that was sort of overkill, I would recommend getting out to stretch at least occasionally throughout the day if possible.

      • #12150
        Kevin Schaefer
        Keymaster

        Thanks for sharing Ryan. Do you have a set schedule with your parents or aids to get you out? I’m just wondering about the logistics.

        • #12151
          Ryan Berhar
          Keymaster

          There’s no schedule in terms of getting out. Since I still live at home, I can basically get out whenever. If you live on your own, scheduling these things would be much tougher.

        • #12152
          Kevin Schaefer
          Keymaster

          Gotcha. Yeah I still live at home as well, but between working throughout the day and my Mom being busy, it’s much easier to stay in my chair. Wearing a catheter everyday takes care of bathroom issues, and then I try to have a bowel movement in the mornings when my caregiver is with me. Weekends are better for me to get in and out of my chair.

        • #12153
          Ryan Berhar
          Keymaster

          That’s great. When you have SMA, you should do what works for you. I’m glad you’ve found a good solution.

        • #12154
          Kevin Schaefer
          Keymaster

          Definitely. As with any aspect of daily life, it’s important to do what works best for you.

    • #12302
      Adnan Hafizovic
      Participant

      Like most of you I also stay in wheelchair all day.I get up from bed in 8:30 and in 11:00 Im allready in a wheelchair.I have luck that I can like Michael move in wheelchair.About 2   o clock I find position to half liedown and in that position I can sleep 45 minutes,enough to rest my body.I like to go in bed earlier about 8:00.We must always to find time for rest.

      • #12303
        Kevin Schaefer
        Keymaster

        Absolutely Adnan. I think it’s good to have that balance when you know that you’ll be in your chair all day. Taking breaks and leaning back in your chair helps tremendously.

      • #12337
        DeAnn R
        Keymaster

        For whatever reason I can’t easily nap in my chair.  Even though my chair tilts back I’m always afraid if I fall asleep my arm will slip and I’d be stuck.

        • #12341
          Kevin Schaefer
          Keymaster

          I hear you there. I typically have a hard time falling asleep in my chair, but I do like to lean back for a bit if someone else is at the house with me. It’s nice to rest for a bit after a long day and listen to music on my Echo Show. But yeah, I have the same problem with my hands. If I know I’m going to be alone for a while, I have to make sure I’m in a secure position and that my arms are on the armrests.

    • #12351
      Mike Huddleston
      Participant

      Hey Kevin and all –

      I usually stay in my chair once I’m up.  My schedule varies based on whether I’m going to the office (up at 4 a), work from home (up at 7 a), or have the day off (up whenever I wake up).  I do need help getting out of bed, more along the lines of getting my pants and socks and shoes on, and then sitting up.  We are considering buying a sleep # bed, with head incline, and I’m interested to see if that alters my behavior any.  I can transfer with a board.  Once up, I very seldom get back out of the chair until I’m heading back to bed (between 9 p and mid).  I do tilt/recline and other pressure relief measures throughout the day, but nowhere near like I should.   I do get out for aqua (pool) therapy, but that’s only on Fridays.  I also have a NuStep, but haven’t been using that much lately.  I just got a leg stabilizer and am hopeful that will help, and if so, plan to integrate that into my exercise routine a few times a week.  But that is still sitting.

      • #12356
        Kevin Schaefer
        Keymaster

        Hey Mike, I do have a hospital bed which reclines. The foot-end also adjusts. I’ve found it extremely helpful over the years. I still get up a couple times a night to shift, but the comfort level makes a big difference.

Viewing 5 reply threads
  • You must be logged in to reply to this topic.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account

Copyright © 2017-2020 All rights reserved.