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  • iamdadmaniamdadman Posts: 160Moderator Moderator
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    @waianaesara
    Hi Sara and welcome to the club that no one wants to be a member...lol.  Where do you live?  Is it possible to change doctors in order to get the referrals you need?  As I am sure you know, the damn insurance companies and government conspire to prevent people with serious injuries from getting the help we need and deserve.  I have heard it too many times that the person with the disability knows their own body and therefore knows when something is wrong and are not listened to.  It sucks.  
    It sounds like you have worked your ass off and as a result have made amazing gains.  Going from a quad to a para is just a miracle.  I live in Washington state just north of Seattle and I have a great team of doctors that include an SCI doctor, urologist, endocrinologist, PCP and neuro-optometrist.  Aside from my endocrinologist, who I see for my type 1 diabetes, all of my other doctors I see are for my paralysis.  It gets me so pissed off when I hear someone who just wants some help to live the best life they can live and are denied due to apathy or ignorance.

    Joe
  • Melody_LacyMelody_Lacy Posts: 13Member
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    Hey Sara,
    I get a little relief from swelling and edema by eating cherries and asparagus.  I even use the woody dry tips of asparagus to make tea when I feel really bad.  Keep those foods in your freezer as well so you have some between shopping trips.  We have to be tougher than the average bears.  I am so glad you reached out.  Hope you get a diagnosis soon.  Even if you have to travel, try a university teaching hospital.  They are more likely to be curious than in too much of a hurry to try to figure out your diagnosis.  Keep a symptom diary or create a symptom check box list.  Dates are important.
  • JgtrevJgtrev Posts: 1Member
    First Comment Photogenic
    Hello, I’m Jay Trevorrow. I’ve been a paraplegic for a year now after a spinal stroke.  I’ve appreciated christopherreeve.org, especially early on, after my stroke when everything seemed so chaotic to me. The experiences of others were not only reassuring, but motivating, as I’ve adopted an approach of taking charge of my responses to what initially seemed insurmountable. After a year, I’m looking for more involvement with this community both as a questioner (for certain) and contributor (as I am able).
  • ZcollieZcollie Posts: 138Moderator Moderator
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    @Jgtrev Welcome Jay! Happy you are here!
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • garrisonreddgarrisonredd Posts: 102Moderator Moderator
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    hi @Jgtrev feel free to contact me if you ever have any questions
     
  • HuskerBK81HuskerBK81 Posts: 13Member
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    Ook so i should have joined this site along time ago. I'm 38 I'm a C1&2 Quad on a vent (same injury level as Mr. Reeve) but i was injured 42 days after my 2nd birthday. Yes you read it right i was 2. 
  • iamdadmaniamdadman Posts: 160Moderator Moderator
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    @HuskerBK81
    Hey Husker,
    Glad you are here and a part of our group!  That is incredible being injured at such a young age.  Was it a car accident?  And now, you are 38 so you have come a long, long way.  We are all in this together.  Even though our level of injury, length or how long we have been injured, where we live, what we do, our gender, our age may all be different.  We all know first hand what it is like to be paralyzed.  I hope you enjoy and are able to take comfort by being a part of our group...

  • HuskerBK81HuskerBK81 Posts: 13Member
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    yes car accident drunk driver
  • iamdadmaniamdadman Posts: 160Moderator Moderator
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    @Jgtrev
    Hello Jay and welcome to our group.  I am glad that you have found your way to us.  I am sure you have must to contribute.  I don't care if you have been injured for a year of 50 years we all have something to offer.  We are all here to assist each other and help all of us navigate our way through life.  I have so enjoyed being a part of this group and have learned much and gained strength from the encouragement of others.  I am happy to try to answer any of your questions you might have...

    Joe
  • iamdadmaniamdadman Posts: 160Moderator Moderator
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    @HuskerBK81
    I had a cousin who was killed in a head on collision due to a drunk driver.  I am sorry that person was behind the wheel...

    Joe
  • garrisonreddgarrisonredd Posts: 102Moderator Moderator
    25 Awesomes 25 Likes 10 Comments First Answer
    Welcome @HuskerBK81
    you are definitely an inspiration to me. To see how you persevered after being injured at such a young age.
  • HuskerBK81HuskerBK81 Posts: 13Member
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    Yw Garrisonredd
  • Melody_LacyMelody_Lacy Posts: 13Member
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    Hey @HuskerBK81
    Glad to e-meet you.  What kind of adaptive keyboard do you use to type?  My husband uses the Intelikeys but they stopped making them and I can't update his computer anymore until we find another kind of adaptive keyboard.  My husband, Marty, was injured at birth causing severe cerebral palsy.  He needs an over-sized keyboard with a keyguard over it to prevent unintended keystrokes.  With Intelikeys he was able to attain an advanced degree in Therapeutic Recreation.  Now he is beginning to write his book and the old Windows 7 keeps stalling when he's trying to work.  
    Any suggestions would be appreciated.

  • HuskerBK81HuskerBK81 Posts: 13Member
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    I use a old old headmaster plus which basically is a head set mouse. and i use a onscreen keyboard i found free online. i'd recommend either Jouse II or another mouse like device that way Win 10, 11 or whatever comes next you won't have software/hardware issues. let me know what works, cuz i'm looking to switch within a year or soo

  • Melody_LacyMelody_Lacy Posts: 13Member
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    @HuskerBK81 ;
    Thanks so much for your advice.  Comfy mouse that Marty would like and an on screen keyboard.  Simple and elegant.
  • Melody_LacyMelody_Lacy Posts: 13Member
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    I talked to Marty when he got off work.  He said using a mouse to type would really slow down his writing.  He really loves his Intelikeys.  He actually uses both hands to type on it.  A mouse- based system would never beat that.  
  • wheelchairwarlockwheelchairwarlock Posts: 13Member
    10 Comments Name Dropper Photogenic
    Hello to anyone reading this,

    My name is Sean, I'm 28, a film fanatic, a music lover, an appreciator of art in any form and for the past 4 years and 8 months I've been a C-4/C-5 quadriplegic, Asia A. My spinal cord injury happened as the result of a car wreck, when I struck two animals on a moonless night in the country. I was driving and fortunately my friend sitting in the passenger seat was unharmed and able to call 911. I spent about a month in the ICU and seven months inpatient rehab at Craig Hospital. I had a lot of surgical setbacks, ended up needing two spinal fusions after the first one became contaminated and also had to have a hole in my esophagus repaired, among other things.

    Since leaving the hospital and moving back in with my parents and sister, things haven't progressed quite like I had hoped. I'm still struggling to get approved for long-term care through Medicaid, and so far we've only received a couple months of CNA help, so for the rest of these four years that I've been home my parents have had to manage all my care. I strive for independence where I can but I struggled with depression pretty intensely for a long time. I feel as though I'm just finally coming out of that. Of course it hasn't been all doom and gloom, I still experience profound freedom from the things I love to do, listening to music, looking at art online or at museums, watching countless movies, and through the help of an extraordinary product called the QuadStick (some of you may know it already), I've been able to enjoy video games with about the same skill level I had before my accident. 

    I owe my survival up to this point to my family. I've had some wonderful friends support me along the way too, but would really like to make friends with some folks also suffering from a spinal cord injury to swap stories and ideas with. Anyway that's about all I can think to mention about me, if you have any additional questions about me, the QuadStick, or anything else for that matter, feel free to send me a message.
    As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 
  • iamdadmaniamdadman Posts: 160Moderator Moderator
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    @wheelchairwarlock
    Hey Sean,
    Glad that you are hear buddy.  I love your appreciation of the arts.  Of course, I am a bit biased due to being a musician myself.  I am a T2 para since October of 2010.  I too was very depressed for 20 months after my injury.  I was 59 when injured so it was a major transition for me.  
    I live in Washington state with my wife.  I have three kids all grown and married.  They are all pretty close so we get to spend a lot of time together.  Family is what pulled me through this traumatic injury.  My wife, we'll be married for 44 years  this month, is a retired nurse so I lucked out there.  Two of my kids live in Washington as well and my middle child just moved to Hillsboro, OR.  
    I still try to play though it is pretty difficult because every time I put my hands out to play, I fall forward.  I am working with a PT to come up with some type of solution.
    Anyway, I am glad you are still amongst the living and part of our group...

    Joe
  • wheelchairwarlockwheelchairwarlock Posts: 13Member
    10 Comments Name Dropper Photogenic
    @iamdadman
    Thanks for the kind words and for having me. Yes something I definitely struggle with is my inability to play the guitar anymore. I was an avid guitarist for more than 10 years and losing the ability to use my hands was very difficult to cope with at first because I lost that connection to music, the connection of performing it. Still I hope someday to be able to use my hands and play the guitar once again.
    As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 
  • WAGSofSCIWAGSofSCI Posts: 212Moderator Moderator
    100 Likes 100 Comments 25 Awesomes First Answer
    @wheelchairwarlock
    welcome to our community!! Thank you for introducing yourself - and we would love to know what the QuadStick is!!!!! - Brooke and Elena 
    Your WAGS of SCI
    (Elena and Brooke)
  • HuskerBK81HuskerBK81 Posts: 13Member
    10 Comments 5 Awesomes Photogenic Name Dropper
    Quad stick is a video game controler you can use on any system or pc
  • wheelchairwarlockwheelchairwarlock Posts: 13Member
    10 Comments Name Dropper Photogenic
    @WAGSofSCI
    @HuskerBK81 ;is right on the money, the QuadStick is a device primarily intended for the use of playing video games, but also serves as a very capable mouse controller for PC or Mac. Basically it's a joystick and on the end of it is a mouthpiece with three sip and puff inputs and a lip button. So yes it is operated with the mouth/lips/face and could honestly be used by anyone, but I think the target demographic is primarily anyone with fine motor impairment in the hands, or anyone who finds a typical videogame controller to be inaccessible to them in some way. That's really only the tip of the iceberg with it though, it can do so much more. There's also a less complicated version that's intended for simple computer mouse use. If anyone's curious, I don't have any personal stake in this company nor do I receive any money from them to talk about the product, but it really saved my life when I was at my lowest point, and I can't say enough good things about it and the developer behind it, Fred Davison.

    If you'd like to learn more, there's a very active community for the QuadStick that can be found here: https://groups.google.com/forum/#!forum/quadstick
    As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 
  • wheelchairwarlockwheelchairwarlock Posts: 13Member
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    @HuskerBK81
    After reading your previous posts, it's pretty respectable how long you've endured your personal set of circumstances. I hope that I can do the same in my own life.
    As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 
  • AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
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    Just a thought, have you tried the musical program apps? Some play instruments, some create music. The stick controller works great for many. Not quite the same as strumming but still satisfying for you musicians. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • wheelchairwarlockwheelchairwarlock Posts: 13Member
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    @AskNurseLinda ;It's a solid suggestion and I can't say that I have actually given any music apps an honest try, I think I'm just hesitant to start over at square one with a new "instrument" after how much time I spent practicing  guitar. You're right though, I probably should at least try and see what's out there, thanks for the suggestion.
    As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 
  • iamdadmaniamdadman Posts: 160Moderator Moderator
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    @wheelchairwarlock
    As a musician myself, getting back to playing after my injury was extremely difficult.  I was of the mind that if I couldn't do it as good as I did before my injury, why bother?  With a great deal of perseverance and the help of many healthcare professionals, I am back to playing.  Is it the same?  No.  Is it more difficult?  Yes.  Does that stop me?  Hell no!
    If you love music as much as I do, slow and steady wins the race.  It will take time, practice, problem solving, creativity, overcoming frustration and a never give up attitude.  The decision is yours but if I can do it, I bet you that you can too.

    Joe
  • Felicia_jayne1Felicia_jayne1 Posts: 1Member
    First Comment Photogenic
    I was paralyzed on November 9, 2017 while in prison.  I fell off a second tier railing.  I spent 6 weeks in the hospital and was then returned to the prison where I was taken care of by other inmates.  When it was happening I was so angry and confused. I never had rehab of any kind and I had a group of nurses that had never dealt with sci, let alone a fresh spinal at T6!  So I had two choices, I could either lay there and wither away to nothing or figure it out on my own.  I chose to live, so I had my sister mail me in a book about sci and I did the work, I got my first slide board refurbished from a maintenance supervisor that had a girlfriend with the same sci, he became my biggest support system.  When I had a question that wasn't answered by my book i was able to ask him and he really made my life a little brighter.  i figured out how to use the board, i figured out how to turn in bed, i mastered dressing and showering and all of that without ot/pt.  i am now home with my sister and as hard as that all was i am thankful because my life is so much easier now and i am loving life, something i thought would never be possible again.  i am about to get my first custom chair and i am super excited
  • wheelchairwarlockwheelchairwarlock Posts: 13Member
    10 Comments Name Dropper Photogenic
    @Felicia_jayne1 ;
    Wow that is an amazing story of resilience. It's pretty horrible that you weren't given the option of proper rehab while you were in prison. No OT or PT after an SCI sounds awful to be honest. I had wondered before what happens to people who are injured in prison, there should be programs in place for that. Anyway, thank you for sharing.
    As one judge said to another: "Be just and if you can’t be just, be arbitrary.” - William S. Burroughs 
  • AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
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    @Felicia_jayne1, Hi, your story really points out the different entries into spinal cord injury. Not everyone gets a full rehabilitation stay. Many people with private insurance are allotted two weeks and that is it. You have done wonders in getting things pulled together.
    Most insurances and medicaid payors allow two weeks of rehabilitation 'tune up' every year. Check it out. Since you have the basics down, you would start off with fine tuning. You may find a lot of support and helpful information that will let you soar even further. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

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