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Things u MUST know after a SCI but were never told???

giff806giff806 Member Posts: 6
First Comment
Hi all, I was wanting to know if you had comments on things you should have learned early on after an injury but were never told only to find out years later. I run into this a lot. I find out things now that I wish I had been taught just after my injury. It would have made things a whole lot easier. Tips, tricks, products, self management, healthcare, etc.
Thank you!!!


  • ambercollieambercollie Moderator Posts: 133 Moderator
    100 Comments 25 Likes First Anniversary 5 Awesomes
    Great Question!
    In the beginning I was SO overwhelmed that most of the stuff they taught me (or tried too) I was like a deer in the headlights. I learned more once we went home and were thrown into real life scenarios. With that said I remember thinking later like (6months-year) ok a class now would be great because I’m passed the shock and more open to learning, hearing, accepting etc.
    I didn’t understand the importance of keeping good bone density so exercise and standing frame are very important. Keeping Blatter healthy to cut down on UTI’s Lots of Water and Cranberry Pills. These are Long term things so early on I wasn’t thinking about these or the future issues that could arise. Also, fundraise in the beginning when injury is new even if hard because that’s when you have most of your support. Use the money wisely and save for future needs. Those are the things that come to mind at the moment. 
    I’d be interested in hearing what others say...
  • giff806giff806 Member Posts: 6
    First Comment
    Thanks for the comment Amber! Yah I feel the same about learning things later like bone density. Do you find that cranberry pills help you?I’ve never really tried them...
  • ambercollieambercollie Moderator Posts: 133 Moderator
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    My son has been injury 10 years he has taken cranberry pills most of that time, or on and off...with no UTI’s!
    we know others who get them constantly! I can’t promise the cranberry is the thing that has kept him from them but he hasn’t had one in a decade! 
  • giff806giff806 Member Posts: 6
    First Comment
    Wow that’s great! One less thing to worry about. How much does he take? I do pretty well not getting uti’s but still do once or twice a year. Always looking for something else that might help though!!!
  • FrogletFroglet Member Posts: 4
    First Comment
    Husband is 7 months in with incomplete c2. Currently in a health/ rehab facility ( not medical) he has just restated mobilising after long term bed rest due to sacral ulcer. Suddenly developing swelling in extremities. I’m worried as sister had awful legs for 7 yrs after a stroke. Really want him to be as active as possible. He’s had an awful deal re therapy as the specialist unit threw him out after only a month of therapy- had had his nhs ‘offer’ in bed according to consultant. Covid is an excise for un compassionate and inadequate care in the U.K. the charities are also shielding/ furloughing their staff. 
  • ambercollieambercollie Moderator Posts: 133 Moderator
    100 Comments 25 Likes First Anniversary 5 Awesomes
    @Froglet can you clarify you are asking about physical therapy for your husband?
    Are you doing stretches in bed? Can your husband get out of bed and into a wheelchair?
  • FrogletFroglet Member Posts: 4
    First Comment
    Hes just having some physio since tge last 2 weeks. He is also transferring with aid of a walking aid And care assistants -2
    spends 11:30 to 7:30 / 8pm in his chair
    he really doesn’t want to go back to bed mid afternoon as care home suggest
    waiting for dov to look at photos of swelling as no visits due to covid

  • prc_donnalprc_donnal Member Posts: 15
    10 Comments Name Dropper
    Hi, Froglet,
    I am an Information Specialist at the Foundation's Paralysis Resource Center. We have a list of resources in the U.K. We also have info on physiatrists (rehab doctors)> There's a link to the website where you can get a list of physiatrists in the UK.

    Please email me and I will send this information to you.
    My email address is [email protected]

    I look forward to hearing from you.

    Donna Lowich
    Senior Information Specialist
    Christopher & Dana Reeve Foundation

    Have a question about paralysis and need personalized assistance? Contact our Information Specialists: www.ChristopherReeve.org/Ask
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