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  • Do Any of You Get in and out of your Wheelchair During the Day?

    Posted by kevin-schaefer on May 1, 2018 at 12:32 pm

    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?

    kevin-schaefer replied 5 years, 10 months ago 7 Members · 23 Replies
  • 23 Replies
  • deann-r

    Member
    May 6, 2018 at 8:27 pm

    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!

    • kevin-schaefer

      Member
      May 7, 2018 at 6:51 am

      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.

      • david-z

        Member
        May 16, 2018 at 3:41 am

        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.

      • deann-r

        Member
        May 16, 2018 at 10:02 am

        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.

      • david-z

        Member
        May 17, 2018 at 9:05 am

        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/

      • deann-r

        Member
        May 17, 2018 at 3:31 pm

        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.

      • david-z

        Member
        May 20, 2018 at 6:16 am

        Speaking of heated, I just heard of this:

        https://www.chilitechnology.com/

      • deann-r

        Member
        May 20, 2018 at 8:44 pm

        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.

      • kevin-schaefer

        Member
        May 16, 2018 at 10:04 am

        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!

  • michael-morale

    Member
    May 15, 2018 at 1:06 pm

    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.

    • kevin-schaefer

      Member
      May 15, 2018 at 1:24 pm

      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.

  • ryan-berhar-2

    Member
    May 16, 2018 at 1:26 pm

    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.

    • kevin-schaefer

      Member
      May 16, 2018 at 1:49 pm

      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.

      • ryan-berhar-2

        Member
        May 16, 2018 at 2:17 pm

        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.

      • kevin-schaefer

        Member
        May 16, 2018 at 2:27 pm

        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.

      • ryan-berhar-2

        Member
        May 16, 2018 at 2:37 pm

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

      • kevin-schaefer

        Member
        May 16, 2018 at 2:51 pm

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

  • adnan-hafizovic

    Member
    May 23, 2018 at 11:04 am

    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.

    • kevin-schaefer

      Member
      May 23, 2018 at 11:31 am

      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.

    • deann-r

      Member
      May 24, 2018 at 10:51 am

      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.

      • kevin-schaefer

        Member
        May 24, 2018 at 11:04 am

        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.

  • mike-huddleston

    Member
    May 24, 2018 at 6:43 pm

    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.

    • kevin-schaefer

      Member
      May 25, 2018 at 10:47 am

      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.

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