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Thread: Hope lost?

  1. #61
    Dave broke C4/5 and is complete, but had injury to C3 area of cord. He can shrug his shoulders and has good neck control. He has no feeling from the nipple line down. He said weaning from the vent was the scariest thing he has ever done. He drives his chair with a sip and puff. What we have learned is never to take breathing, eating and speaking for granted. We try to focus on what he does have and not on what he does not have. This easier some days than others.
    We have survived this with humor, and pretty sick humor a times. I know nothing seems very funny right now harberrat. It is pretty overwhelming.
    I hesitated quite a while to post this as I am not an expert and no one can predict how your brother will do.

  2. #62
    Quote Originally Posted by LindaT View Post
    Dave broke C4/5 and is complete, but had injury to C3 area of cord. He can shrug his shoulders and has good neck control. He has no feeling from the nipple line down. He said weaning from the vent was the scariest thing he has ever done. He drives his chair with a sip and puff. What we have learned is never to take breathing, eating and speaking for granted. We try to focus on what he does have and not on what he does not have. This easier some days than others.
    We have survived this with humor, and pretty sick humor a times. I know nothing seems very funny right now harberrat. It is pretty overwhelming.
    I hesitated quite a while to post this as I am not an expert and no one can predict how your brother will do.
    LindaT,
    Thankyou for your post. It is kind of overwhelming. What really gets to me is the thought that if it is this overwhelming for me I cannot imagine how it must be for him. That thought is what really gets to me. Still at the point where it is sometimes hard to talk about but posting helps me to help him. Sounds like Dave and my Brothers injuries are similar. I appreciate your sensitivity in your hesitation to post but you really shouldn't worry. I am realizing that there is no such thing as bad information. I appreciate that you are able to share your thoughts and I try to take something positive from everything I hear or read. Trust me after our doctor meetings I don't believe there is much that will phase me! Really beginning to hate the word "never". I think that it is great that Dave has you to help. I feel guilty and terrible saying this but I cannot take care of my brother once he leaves the rehab. I don't believe anyone in my family will be able to either and that really hurts. He never married and has no serious girlfriend. His options are limited once he is released from the rehab.

  3. #63
    Don't listen to what the doctors say. Nobody fully understands the spinal cord and what it can and can't do. They told us the same exact thing when Brian got in his accident. Actually, he wasn't supposed to be moving anything from the neck down. He fractured c5 & 7 and crushed c6. The only way they can tell you he has no hope is if they were to cut his spinal cord in half and look at the damage. Which is impossible because if they did that he deffinately would never walk again.

    Brian woke up and could barely move his arms. 1 year down the road and hes walking independently on a walker and we are working towards walking on crutches. My best advice is to not ever let your brother give up hope. Make him work his ass off at therapy and yes progress will be slow and there will be times that he may want to just give up, but in the end you WILL see recovery. I can't tell you how much or if he will get enough back to walk again, but there are people out there that are walking after a spinal cord injury. To me, this is more than enough inspiration to not give up hope. If you want to here more about Brian's recovery just message me and I'll be glad to fill you in!


    Darra
    You never know how strong you are until being strong is the only choice you have.

  4. #64
    Harberett, this is so much to handle all at once. If he does very well, and able to use a wheelchair independently, then you may be surprised on how much he can do with some assistance... but we don't know that yet. I have a few friends I want to hook you up with in a private PM to talk to...I have done a search and found the nursing facilities in NJ are poor (sorry.. just found this to be true) and many hospitals and medical facilities will have a hard time with the care of someone with tetraplegia (quadraplegia) with many care issues. So it is going to take a lot of work to find the right living situation for him.. and starting to ask around now may be a good thing so can prepare.
    Making sure he has good insurance as well. Lots of great collective knowledge you are tapping into ... and from those of us with personal experience.

  5. #65
    Please try not to feel guilty. Med100 is right, it is amazing what people can do with some assistance. Just keep being a brother.

  6. #66
    Harberrat--Med100 asked me to contact you. I found this site in December, dealing with the medicaid system in NJ while finding caregivers for my brother as he recovered from pressure sores. The good news is that he's back in his chair daily and headed to Magee for rehab back to his former condition.

    Here's his story--he's a C5C6, so has arm movement, but no sensation below the shoulders. Like your brother, he was on a respirator for six weeks post injury and was in Magee for a year learning how to be a quad. It was scary--I was in Alaska at the time--but he's come to embrace life in a chair. He went back to school, got married (though later divorced), played and coached quad rugby. In short, except for needing help getting into and out of bed, he's made life normal for himself for the past 25 years.

    So, be supportive, be hopeful, remember that the human will and spirit are strong. Your brother is lucky to have you and you are fortunate to have found this site.

    Feel free to PM me if you want to.

    Also, many thanks to Med100 for help and support!

  7. #67
    Hey my buddy MattieSam... Thanks so much for coming on to support my new friends Harberret and his brother!! How is the weather in Alaska? So glad your brother is headed back to Magee! You have a very cool brother! I think your Alaska snow made it to NJ last week... :-) almost 20 inches...

    Harberret, see, MattieSam's brother lives independently and created a life for himself.. and your brother will also create his life...not sure what it looks like right now.. but it will happen. Please contact MS...

    I feel the pain of what is going on for you...just want you to know I very much care about you and give you the hope and wings to know life moves on.. and it will for you, and for your brother, and for the rest of your family. You don't need to be walking to have a very cool life.. I think those who post here will tell you that... (those of us in the quad group/caregivers.. join in )

    There is no turning back on the accident.. It happened.. I think if any of us could take a magic wand (my 7 year old niece will gladly share her glittery pink one).. and shake it... and all would make your brothers injury go away and back to being "able bodied" again.. we would. Magic wands are beautiful things.. and we all have to have our hidden magic wands.. in our dreams if not in our sense of humor and life...

    Linda, MrsBrian, and others here have shared with you about life moving on.. hope... I have a few other people I would like for you to meet as well. Some in person possibly...One is a c4 quad who is director of disability services in a NJ county... very cool guy..Independent, drives with a lot of adaptation, and a super advocate. Heartbreaks stories in his life, but he has made mountains of inroads and access for those who need a little help along the way.

    Javier Robles Deputy Director for the Disability Services in NJ may also be able to help your brother with resources. http://www.state.nj.us/humanservices...ome/index.html
    Here is a story about Mr. Robles success: http://www.thisabled.com/blogs/about/

    Kessler has a wheelchair sitting clinic, and can work with PT and other rehab to help move on. http://www.kessler-rehab.com/program...-injury-rehab/


    Typically, rehab is only 6 weeks... Most of the recovery comes AFTER he leaves rehab...We cannot say now if your brother will be using a sip and puff, or able to use a hand to push a powerchair, or another type of adaptive chair. My friend went to Harvard with her mom as her aid and drove a wheelchair by accessing the controls (by her tongue) implanted on the top of her pallet. She also wrote a book and is in the Christopher Reeves book. If you don't have the REEVES resource materials, need to get that to you ASAP. http://www.christopherreeve.org/site...WKwG&b=4451921

    We don't know if your brother will be able to join in quad rugby, be online and join us with adaptive software (Dragon Dictate, amongst others) or use eye gaze software, be an advocate in NJ.... Since he has use of his shoulders, this is a VERY good sign.. Please remember to take care of yourself too. You have my PM address :-) Please use it. Hugs to you and your brother...
    Last edited by med100; 02-13-2010 at 08:41 AM. Reason: just a few more thoughts

  8. #68
    Hey guys, Thanks for all of the encouragement, Med100,LindaT,Mattiesam and MrsBrianGore. My brother is supposed to go to Kessler on Monday. I am looking foward to him going and know it will be great for him, though he is a bit nervous and understandably so. I am keeping my hopes up but at the same time doing what I can to prepare for the future. I guess patience was never my strong point but I am learning. Very difficult to accept small steps in a world where instant gratification is so easy to come by. Very used to getting things done asap. Anyway, I wish you all of the best on this Valentines Day, I never knew there were so many caring and helpful people that got together in one place. I have always told my wife that I do things for people because I want to and not because I expect anything in return. Just the way I have looked at life. Glad to see that I am not the only one! Thanks again.

  9. #69
    Quote Originally Posted by harberrat View Post
    Hey guys, Thanks for all of the encouragement, Med100,LindaT,Mattiesam and MrsBrianGore. My brother is supposed to go to Kessler on Monday. I am looking foward to him going and know it will be great for him, though he is a bit nervous and understandably so. I am keeping my hopes up but at the same time doing what I can to prepare for the future. I guess patience was never my strong point but I am learning. Very difficult to accept small steps in a world where instant gratification is so easy to come by. Very used to getting things done asap. Anyway, I wish you all of the best on this Valentines Day, I never knew there were so many caring and helpful people that got together in one place. I have always told my wife that I do things for people because I want to and not because I expect anything in return. Just the way I have looked at life. Glad to see that I am not the only one! Thanks again.
    I am so glad your brother is being moved to a rehab center!! I completely know what you mean by patience not being your strong suit. Mine isn't either and this injury has really been a challenge on that part of my personality. Best of luck to you and to your brother as you all go through this journey!!

    Becky
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

  10. #70
    I don't blame him for being nervous. When Dave first went to Craig hospital it was a lot to absorb. He was there for over 3 months. The people who work in rehab (in my opinion) are a different breed. We will never forget them.
    My hope for your brother is that he meets as many wonderful caring people as we did.
    I won't lie and say it all was perfect or that there is a easy road ahead. Please wish him well from some friends in MN.

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