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Thread: Visiting a quad, need advice...

  1. #1
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    Visiting a quad, need advice...

    I have started going by a residential care facility near my work on my way home every once in a while. This place is geared toward younger people with severe disabilities that need full time care. Most of them are high level quads or have other disabilities that require them to be on a ventilator. However, there are a few people that are mid-low level quads that just can't afford to live on their own and pay for a caregiver.

    As a mid level para, I'm not as familiar with everything a quad has to deal with as well as what all they can and can't do physically. I met a guy that is a quad (not sure the level) with some arm function and no hand function. He uses a power chair and is able to use his fingers enough to use his iphone. He is in his twenties with no family in this area. So he has no one to get him out and go anywhere. It's an incredibly sad situation and my heart breaks for him.

    I would like to know from you guys, especially other quads with similar injury levels, what are some things that I could bring and/or do with him when I visit? We usually just sit and talk, but he sits there all day with nothing to do, so I thought maybe he would like something to break up the monotony. I didn't know with no hand/finger function what kind of games, cards, etc. he would be able to use? If you were in his situation, what would you like for someone to do for/with you?

    Also, it's difficult for me to talk to him about the struggles I have living with a spinal cord injury, because I want him to know I can relate to some of the things he goes through. But there is such a huge gap between our injury levels/abilities that I don't want it to come across the wrong way either, if that makes sense. Like an able bodied person trying to explain to me how they used a wheelchair for a week after a surgery they had. So any advice on that front would be appreciated as well.
    Last edited by Brad09; 09-17-2019 at 10:11 PM.

  2. #2
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    Maybe just ask him what he likes? Movies? Sports? Maybe video games? Beer? Naked ladies? Could be any of those.
    I'm not sure why you'd feel guilty about talking about your life, and/or challenges? You're who you are, he's who he is, and at the end of the day that's all that matters.
    Rollin' since '89. Complete C8

  3. #3
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    really sweet of you just ask him I am a quad 6 7 I think he will tell u and the worst you can do is not ask

  4. #4
    Does he have a computer?

  5. #5
    If he likes to read but struggles with holding a book, you could help with setting up with some sort of ebook, like a Kindle. That is so much more relaxing to me than struggling holding a paperback. If even holding Kindle is a challenge, he could be set up with a holder for it. I rigged up one that's mounted on my headboard for reading in bed.

    https://smile.amazon.com/gp/product/...?ie=UTF8&psc=1

  6. #6
    Senior Member Tim C.'s Avatar
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    FIRST, (DON'T )even try to relate to anything he's going thru, you cannot. it's one of the biggest mistakes the non-/or under paralyzed can make; your shitty little life does not compare to what he faces daily. Do not speak of your struggles, no gratuitous bs....don't say ''anything I can do, just ask'' because you know it ain't true.
    SECOND, just listen; his body is paralyzed but not his mind. His mind keeps going, though his life stood still from the day of his paralysis.
    THIRD; if the meet goes well just don't make communication a one-off.

    I guess I should proof read especially after Ambien
    Last edited by Tim C.; 09-20-2019 at 05:56 PM.

  7. #7
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    Knowing how long he's been injured is important. I assume he's an incomplete SCI based on some things you wrote. ASIA b, c or d? Ask him as this can effect recovery/adaptive topics.
    At his age, he can recover more than an older SCI if he is <5 years post injury.

    Physical recovery gains are most important in the first year. Goals can be set in yearly intervals. Improvements (functions gained) can be achieved for up to 5 years post injury.
    After that it's all about how to do things with what you have. Accepting this is tough on the mind. This is when sharing of ideas, products available, techniques, improvised tools, etc. comes to surface as a topic. The smallest things I did without thinking pre injury, now requires effort and thought. I'm always in a learning curve about over coming a tough task, this can be a positive topic. I have a way of doing tasks but am willing to listen to ideas. Just something to consider when visiting him.

    When I'm asked, "how you doing", it kinda bugs me. I want to say, "I'm fucked" but I keep quite. I'd rather hear, "how you feeling today". Hearing/knowing how he's feeling can help direct the conversation. Listen and reply to this topic for a short time but move on to something else if it's bad. Brooding on the bad stuff can be depressing. However, just having someone to hear and >believe< what it's like (SCI/quad) reduces the loneliness.

    Loss of hand/arm function is the worst part of being a quad in, my case. Many topics of recovery/adaptation on this. I have trouble with all types of paper so books or magazines only cause frustration. As Endo_aftermath suggested, a Kindle or laptop is best for reading. My bowel/bladder function was bad too. Took 5 years for me to get it manageable. If he has a bag, you might want to avoid this topic unless he brings it up. Most SCI's don't mind sharing issues with their fellow "gimlets", even the gross issues.

    Find something you have in common. Favorite sports team, movie, movie star? Stroll/roll around the area and look for something to learn about or share knowledge of (cars, birds, plants, season change).
    Get him to join this forum. I envy the para's in this forum, however it has showed me that I'm fortunate in many ways.

    Tim C is 100% correct. His mind is now is biggest asset and possible enemy. No one can fully know what his life is like now. Unless he asks, avoid your struggles, they will seem trivial compared to his.

    Kudo's to you for thinking of someone in need. Just throwing out some ideas and my experiences.

  8. #8
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    Quote Originally Posted by endo_aftermath View Post
    If he likes to read but struggles with holding a book, you could help with setting up with some sort of ebook, like a Kindle. That is so much more relaxing to me than struggling holding a paperback. If even holding Kindle is a challenge, he could be set up with a holder for it. I rigged up one that's mounted on my headboard for reading in bed.

    https://smile.amazon.com/gp/product/...?ie=UTF8&psc=1
    I love reading fyi I use my pc and log into library and down load use a mouse to turn pg its an idea

  9. #9
    Brad09, you are very kind to be concerned for the welfare of the young man. I am a complete para, so can only empathise with what your friend goes through on a daily basis.

    By regularly visiting him and chatting about life in general, you will get to know him and what he would enjoy doing. Just having a friend such as yourself to talk to will be good for him, and over time he is sure to open up about himself.

    Good luck and well done for caring.

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