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  • #16
    Lisakaymd:
    KLD and all others on this thread have given you sound advice. Im a T 5 incomplete injured when I was 15. Im now turning 65. I've completed an undergraduate and then a masters degree, worked as a Vocational Rehab Counselor for 25 years, full time. Been married twice, still married to second husband, given birth twice, have 2 daughters 32 and 34. My family circumstances were far from ideal, and I pretty much had to fight my way out of neglect and hopelessness at a young age. You can do this! Life is worth it! Start small as others have told you. VR can get you a driving eval, and can pay to modify a vehicle to use for work. Going back to work as a hospice nurse or retraining as a counselor or therapist or using your existing skills in another occupation is not only possible, but necessary. Grieving your loss will take time, as you well know from hospice. But at a certain point the tide turns, and living with the SCI becomes a problem solving challenge and not a tragedy. Take care and keep posting!

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    • #17
      Lisa-if you're smaller than me (I'm 5'11" 200llbs), I have a spare chair (a Kurschall 3000GT) that might be a fit.
      You're welcome to it if it would work for you.
      I'm T12 complete. I'm fully independent, and drive myself everywhere. The Kurschall was picked up used 20 years ago and saved as my car chair a long time until I got other chairs. I have house chair, and when I go out, all I have to do is transfer into my car-the "car" chair is on the passengers seat.
      I can't tell you how good it felt to get some hand controls and my freedom again after my rehab and short term "imprisonment" at home! And I love my wife, but autonomy is important.
      And, trust me: it gets better, one day at a time. Just keep doing the next right thing each day and you may be surprised how extraordinary your life becomes.
      Please hear this song:https://www.youtube.com/watch?v=LQlZeWLlhpk

      EDIT: my wife does jazz and cabaret. This song echoes my experience and always brings up sadness (and facilitates the grieving which, even after 22 years is still process and not an event)
      69yo male T12 complete since 1995
      NW NJ

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      • #18
        Originally posted by Lisakaymd View Post
        ...I'm still not comfy with going out. My wheelchair is kind of bulky and haven't received my new smaller one yet. I can get over that at times. My biggest obstacle is my dad. He's the one that gets me into the wheelchair van and drives it. He's 76 and having back problems, hernia and is slowing down. So, I don't want to be a burden since it's hard enough with me living with him. My best friend is allowed (by my dad) to drive it. He trusts her but she's super busy so she's only taken me out once. I don't know if I'll walk again. But if I don't I suppose I'll learn more to become more independent and possibly work on driving. ...
        Set driving as a high priority goal. Once you are in the drivers seat cruising down the road, you will feel great. Once I heard people here taking about cars and converted vans I got *real* curious. You may know all this already, but just in case, here is a youtube of how it's done with a car: https://www.youtube.com/watch?v=6KM5qZUmuKU Vans require more conversion adaptations and $$$, but depending on arm strength for transferring one of those may be necessary. I now have to use a converted van as my malady is degenerative. And to tell you a fact, I wish I'd sprung for the lift and auto door years ago.

        The problem is that paralysis is inconvenient and expensive and time consuming, but most issues have work-arounds. You are fortunate to have your education behind you. You'll do fine.
        I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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        • #19
          You'll learn to tune out the 'inspirational quotes' soon. I tended to rely on sarcasm, but that's not always healthy either.

          All of the obstacles can be so overwhelming .. but choose just one problem and work on solving it. Then the next, etc. It's all about goals. Set small ones and achieve them.

          You said about coding at home .. income is so important so if you can do that, it's a big start!
          Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

          T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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          • #20
            T6... however i'm unsure if it's complete or incomplete. I can't feel anything below the waist.... have neurogenic bowel/bladder. I do have pulses and tingles. and if something is touching me or laying on me I will feel deep tingles in that area being touched.

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            • #21
              LisakayMD your injury sounds alot like mine. i can walk with braces and crutches however it is more for excerise than functional. i too had a spinal stroke at the T6 level. i drive myself and take care of myself you definately need to start doing more on your own! where did you do rehab? any chance on maybe doing another inpatient stint to get your skills better? i have did 3 stints inpatient for about 2-3 weeks at a time as i was getting more function even 2 years after injury. i have been out of therapy for about 5 years now as insurance won't pay for it anymore.
              T6 Incomplete due to a Spinal cord infarction July 2009

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              • #22
                Hey LisakayMD, the first couple of years are definitely the hardest. I remember feeling so hopeless and fearful of this new life. I was a week into my last semester of nursing school when I was injured in January 2012. I broke my neck at c6-c7. I was able to work with the college and go back the next fall and graduate May 2013. While I was happy I went back and finished I was unsure I would be able to find a job as a nurse and Quadriplegic with no work experience. Unable to find work right away as a nurse I got a job at a medical call center. Finally in the spring of 2016 I found a job as a nurse working with clients who have intellectual disabilities and/or mental illness. Just last week I accepted the Director of Nursing position at the company. A position I never dreamed I would be in a few short years ago. My bit of advice is to take things in small steps because this is a huge life changing event. And try not to beat yourself up when things are taking longer to happen then you’d like, i know i did. The biggest thing you can do for yourself right now is to get with vocational rehab to get an accessible vehicle. If they know you are interested in going back to work they will help pay for the accommodations to the vehicle. I’m sorry you are going through this just know you have a community of people here for you at CareCure

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                • #23
                  Don't know if Lisakaymd will post again, but just read these posts and wondering if member is on Medicare. If so, may qualify for a month of therapy consisting of PT and OT to work on goals leading to more independence. Also, what is hang-up on a better fitting wheelchair? It seems that help is needed and perhaps the PT can help with that too.
                  The Medicare home program is short term for persons primarily home-based, except for medical or other emergency needs to travel from the home. Such a program could help someone with therapy that would enable them to become more independent. I am close to completing such a program as I needed strengthening program to improve transfers and manage painful shoulder. The company providing this is excellent.

                  To start this service, I met with my doctor who provided a prescription for HOME PT & OT and I called a home care company that was recommended and they began with a full evaluation of me in my home, followed by visits from PT and OT 4 days a week.

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                  • #24
                    I know exactly how you feel. Today, I have my normal continuous pain encircling me. But also my shoulders ache, my wrists are sore, my neck hurts and I have spasticity strong enough to throw me out of my wheelchair. Thank goodness for anti tippers. But today I wish that this would be over with. I'm so tired of this. If it were only the paralysis, it would be passable. You are not alone.

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                    • #25
                      Originally posted by Lisakaymd View Post
                      I feel kind of lost. I don't know why. I don't know what to do about it.
                      I feel like my life is on a stand still. I don't want to give up and I war with myself between hope vs. fear.

                      Sometimes it can be exhausting to have people always trying to say positive things like "you're inspiring" "you're so strong" "life isn't over" "there are plenty of people that live a full life" yea. I get it but it can still be exhausting
                      No truer words.....

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