Very important points you brought to this discussion wavewolf and you are so right. My crutches are my most important piece of equipment.
The post is also considering the complete Spinal Cord Injury perspective on being able to walk as it must be very different to us 'walkers'. Hopefully DJ is ok with me referring to him at this point but i know that he has mentioned to me and here on the forum that given the choice he would have his bladder, bowel and hand function back before his ability to walk.
I can see how these functions are fundamentally more important....There is a pre-occupation with upright mobility and i can understand how the esko-skeleton may be hailed as a miracle opportunity for those with permanent paralysis...But is it?
I think most of us would agree with DJ that recovering B&B is more critical to quality of life than recovering partial or even total mobility. But upright time is so important to our health--I forgot earlier to mention circulation benefit--whether it comes in the form of walking (with or without assistive devices) or standing (in frame or freestyle). This is true for complete or incomplete SCI. It must be the hardest for those whose blood pressure/equilibrium is compromised when upright.
Post by kilg0retr0ut on Jun 16, 2014 3:51:21 GMT -8
I'd wear it in a second. If it took this or any other mechanical devise to keep me upright, so be it. I don't know what it's like being in a chair, but I'm going to do everything in my power to stay out of one.
I'd wear it in a second. If it took this or any other mechanical devise to keep me upright, so be it. I don't know what it's like being in a chair, but I'm going to do everything in my power to stay out of one.
I'd wear it in a second. If it took this or any other mechanical devise to keep me upright, so be it. I don't know what it's like being in a chair, but I'm going to do everything in my power to stay out of one.
I honestly don't even care about walking (anymore), I'd honestly just like to get off the vent. Being realistic here.
I think thats a very realistic hope piinksugar....
It's incredibly realistic! I had a 10 year old client who upped her time off her vent to a few hours from being completely reliant.. It takes time and constant practice and I know you can do it!
I think thats a very realistic hope piinksugar....
It's incredibly realistic! I had a 10 year old client who upped her time off her vent to a few hours from being completely reliant.. It takes time and constant practice and I know you can do it!
ha I'm trying to get there. I've gone to an inpatient facility a couple of times to try to get off of it and unfortunately I was told I wasn't ready which was a huge blow as I was so excited to get rid of the thing just have no clue. Though it's not like I'm breathless when the vent is turned off my problem is more of a stamina issue. I am trying to keep working at it so in the future perhaps I'll be entirely vent free. If not... then I at least hope to only have to use it at night. I read a story about a woman that was able to get to the point where she didn't have to use her vent during the day (still had the trach and collar though) and was only put on it at night.
It's incredibly realistic! I had a 10 year old client who upped her time off her vent to a few hours from being completely reliant.. It takes time and constant practice and I know you can do it!
ha I'm trying to get there. I've gone to an inpatient facility a couple of times to try to get off of it and unfortunately I was told I wasn't ready which was a huge blow as I was so excited to get rid of the thing just have no clue. Though it's not like I'm breathless when the vent is turned off my problem is more of a stamina issue. I am trying to keep working at it so in the future perhaps I'll be entirely vent free. If not... then I at least hope to only have to use it at night. I read a story about a woman that was able to get to the point where she didn't have to use her vent during the day (still had the trach and collar though) and was only put on it at night.
Sorry to hear, but try not to get discouraged. From what little experience I have with these I think the key is small increments at a time. My client was working on it with her caretaker for a few years before she could go through majority of her session without it. You can do it!
I didn't mean to bum you out Hobbit I'm always sticking a foot in my mouth.
Didn't bother me, I'm with you, hate being in a chair, so use it only when I Really have to . . . sometimes I have to admit defeat & wheel around
I use AFOs all the time, as they make standing transfers much more stable. I cannot afford a fall! I try to walk with forearm canes when I can. But to me using the chair is not a defeat--I use whatever tools I have to to get done what I want to! At home, I move around with just my service dog for balance and support a lot of the time, but am not stable or strong enough to do this elsewhere.
Me too Wavewolf. The chair actually gives me much more mobility so its a good thing to me, not any type of defeat. But when I first started using forearm crutches it took me a really long time and I should have started using them years sooner. But eventually I just had it, and went out and bought a cane from walgreens. The fair has always been special to me and I'd spend every day there as a 4-H kid, and when I couldn't spend 90 minutes there with multiple breaks to rest... The cane ended up returned the following day because it was a complete disaster attempting to use it, but then I ordered my first pair of forearm crutches. The difference in what I could do was amazing to me and I was so excited.
When the Dr first brought up using a wheelchair, I resisted and said no. It did take me 6 months to say "ok give me the script" but I kept remembering when I first got the forearm crutches. And the difference with the chair was 100x more amazing. I still use a combination of mobility aids, I have joint bracing (I love my AFOs!), forearm crutches, manual wheelchair, power wheelchair, and am getting a smart drive power assist for my manual. They're all tools to get me more out of life.
My ortho focuses on walking as if thats my only problem, and with my knee surgery he wants to focus on getting me walking more... Thats not my top priority. Walking isn't the be all end all, and even if there was a surgical fix for my joints, I still have a heart condition and orthostatic intolerance that makes being upright exhausting for me. I'd much rather get rid of the fatigue, pain, my b&b issues, etc before suddenly being able to walk perfectly fine.
It's incredibly realistic! I had a 10 year old client who upped her time off her vent to a few hours from being completely reliant.. It takes time and constant practice and I know you can do it!
ha I'm trying to get there. I've gone to an inpatient facility a couple of times to try to get off of it and unfortunately I was told I wasn't ready which was a huge blow as I was so excited to get rid of the thing just have no clue. Though it's not like I'm breathless when the vent is turned off my problem is more of a stamina issue. I am trying to keep working at it so in the future perhaps I'll be entirely vent free. If not... then I at least hope to only have to use it at night. I read a story about a woman that was able to get to the point where she didn't have to use her vent during the day (still had the trach and collar though) and was only put on it at night.
Don't let them dictate what you do. If you feel you are ready, do it. Doctors have opinions.