The worst thing about paralysis
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- Опубліковано 15 сер 2023
- Another conversation with @EmpoweredPara about the highs and lows of wheel life
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#wheelchair #spinalcordinjury #paraplegic
Do you have a disability? What do you think the worst thing is? Share your views and we can start a discussion ❤ ✌
❤❤❤ Business, restaurants and buildings don't follow the ADA Guidelines. Many venues are not accessible. Limits where I can go.
There are many physical obstacles.
My upper body strength has improved since my strokes back in 2019. I can take care of my personal needs but I still help when I go outside. Thank God people in my church and at the VA Help me. I'm a disabled Army Veteran.
Wheelchair user. ❤❤
Thanks for sharing @@DeBorahPalmerUnicorn
So you think lack of accessibility is the worst thing?
I have to say, it can be very frustrating at times
Hey freddo, I feel that same way about my legs and would love to be able to stretch them without having to get onto a bed or something flat. That feeling in my legs (especially the left one) is horrible.
I'll say not being able to feel my body from point of injury down which for me is chest down. Especially when you have to go to hospital and they ask "what is wrong today" and best thing I can say is I feel off but can't say exactly what's wrong. 😡
Thank you for enlightening others, had no idea about things like discomfort or seconday complications from the paralysis. I think it's important to spread this awareness
Tons of info & opinions here! Lemme throw in a another view. My wife is disabled, unable to drive due to CP. So I’ve been careful for decades not to do “adventurous” things because if I was to get injured & where we live, not being able to use a car would make life a lot more difficult.
An important consideration for sure. There has to be a balance, but becoming content with less is important, realising that happiness doesn’t depend on outside circumstances as much as you might think can be really helpful ❤️
I thought there was a fly on my screen 😂
For me one of the most frustrating things about being disabled (low level para) is not having the blissful ignorance of going anywhere at any time. I miss being able to rock up and not worry about access or having to book a place
Good answer! Its certainly challenging having to scope out venues, or be extra prepared when going places.
I find the first time going somewhere to be the scariest, then going there next time way easier
How long everything everything takes - getting up & dressed in the morning 45mins instead of 15, getting out the car 5mins instead of 0 etc.
Yeah you’re right but I’ve gotten used to that and now plan things accordingly, with more time given to such tasks.
Plus the more you do it, the quicker you get, and the more normal it feels.
Yeah aging with paralysis worries me with my fiancé 😢
This is deep stuff Freddo and Brittney. I admit that since CP & SCI are both disabilities but also are so different, that pre-Feb 2022, I didn’t realize a lot of this. I thought being a paraplegic just meant that you couldn’t move your legs. I had no idea about bowel and bladder, or about higher levels of injury and having no tummy muscles, or that you didn’t have sensation, and, probably most disturbing, that you have almost constant nerve pain and that you don’t feel comfortable. You have taught me so much! And I deeply hope that this knowledge and understanding I’ve gained will propel me to continue to work towards making the world a better place for people with disabilities, starting with Accessibility and Inclusion. In my typical wordiness, I am trying to say that I appreciate that you both have taken the time and effort to teach all of this to me and others!
Thank you James, I appreciate you taking the time to write that and it is our intention to educate and provoke thoughts like this. It makes me very happy that you enjoy this type of content 😊
@@FreddotheWheelchairGuy Do you just read these comments or does Brittney see them also?
they are releasing a podcast in bits and pieces ...its just one long talk and i have loved the content ...when i was young i wwas talked into bungee jumping and my back kinda snapped when i bounced back up
...i was fine but my risk taking behaviour ended that day
I didnt realise so many years down the track u would suffer pain so much ...my patients are in the acute phase so telling me things like that makes me think very carefully what i say to my pts about what to expect in the future ...i learn more from you two than when i was at uni !!
I’m glad you’re learning so much 😊
Brittney is in 2 videos in one single day?? Blimey! I’ll weigh in later as I sorta qualify as my wife is disabled and we’ve been married for 42 years.
Freddo, I don’t want to monopolize the comments here, but this talk between you and Brittney was very thought provoking. The part about the watching other people do the things you want to do, brought up a discussion my wife and I had. There’s numerous activities - riding a bike, skating, etc - she’s never been able to do, and we think, in our opinion, that it is easier to be born with a disability than to be injured later on. But I sometimes think that my wife just pushes the “comparison” aside and doesn’t want to deal with it. Part of this is because her family never talked about her disability, and partly because we are older than you guys - we are in our late 60’s. I’d like to comment about aging as well, but I’ll let some other people comment first before you tell me to go away and to stop “talking”.
There’s room for everyone in the comments 😊
You make a great point, and I think it has a lot to do with being content with less. I think it’s a superpower. So many people think that things will make them happy, but the truth is, if you can’t be happy with the small things, you won’t be happy with the big things.
@@FreddotheWheelchairGuy Thank you Freddo! I like your content and I’ll try to remember to watch and read yours regularly; maybe every time I watch Brittney’s.
The pain, 10 times to think how to do something, lots of not wheelchair friendly accommodations, people talk to your partner or some ignore you, toilet, that guy in the chair, people push me without asking, falling, al the bureaucracy in Holland, very very expensive … the best in the wheelchair to be mobile, make fun again, sport, dog rolling (walking) 😉, learn to think quick (point 2 not funny), and to know you can do a lot in a wheelchair, intimate with my wife.. WHEELIES!!!
It’s wonderful that you ended with the positive things. Thanks 😊✌️
Worst things about paralysis is paralysis
Care to elaborate?
I think the risk-taking concept is "What the Hell? I'm already paralyzed, so why should I care?"
you don't mind if your paralysis becomes worse and u end up on a respirator
I think the risk of further injury would outweigh the “I’m already paralysed” part for many people. Being disabled is hard when you’re not in pain, let alone further injuries causing many other secondary complications.
SCI c4/5 here: without doubt the bowel routine stuff, its just long & boring. Other than that; being patronised/talked down to by ableds, wider societal crap access/equality, playing cricket & lil things like lying in the grass in the park in the summer. Just found your channel :) x
Glad you found it, I hope there is other stuff you can relate to too!
Welcome 😊
what advice was the best you were given when u first got injured ???
Great question. I was thinking of this recently and it was quite personal for me. I was thinking of making a video about it- “if I could go back and give myself one piece of advice it would be…”
Stay tuned to find out! 😉
thanks for keeping me hanging !!!!!