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  1. #1
    Junior Member pricklyrose's Avatar
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    Question Is This The Right Place?

    Hi Everyone,

    My name is Stephanie, and I am pleased to meet all of you - well, to be here with the possibility of meeting all of you. I am just not sure I am in the right place. I am a caregiver... my husband has an acquired brain injury due to something that started as a diabetic coma on Thanksgiving and ended with a cardiac arrest. They say he is minimally conscious, but I believe he is conscious just severely mentally disabled and I do mean severely.

    Anyway, I need help, advice, laughter. I am caring for him in the home and have been for about 2 weeks. Working through the VA until Medicaid kicks in, and I must say, I am not fond of the VA (no insult intended).

    I have looked online for a place to go such as a forum, and it is seriously hard to find. Is this the right place for me? If it isn't, I am so sorry!

    Regards,
    Steph

  2. #2
    Welcome. Because this website it primarily for those with spinal cord injury or those who care for them, you may not find all the support you need here, but you are certainly welcome. Many of your issues will be different as brain injury has some different issues, but many are similar.

    Have you been in touch with anyone from the Brain Injury foundation? It is a national organization but there are also some local chapters: http://www.biausa.org/

    While his brain injury was non-traumatic, you will find people with common issues who are caring for survivors of traumatic brain injury (TBI) as well. Here are a few:

    http://www.headinjury.com/linktbisup.htm

    http://www.lapublishing.com/Husbands-Wives.60.0.5.1.htm

    http://www.familyvillage.wisc.edu/lib_brin.htm#Mail

    http://www.brainandspinalcord.org/co...pport-tbi.html

    What state are you in? Resources vary by location. Did your husband go to a VA brain injury rehab program?

    Please complete your profile as it makes it easier for everyone to respond to your posts.

    You can also join our private caregivers forum if you are interested. See the sticky topic at the top of this forum about how to join.

    (KLD)

  3. #3
    Junior Member pricklyrose's Avatar
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    Thank you for replying so quickly.

    We are in the Boise, Idaho region. I do not know if this VA has the brain injury rehab. If it does, it was not offered. I know Elks neuro rehab was going to take him, but the VA did not want to pay. Apparently, Medicaid pays more according to Elks.

    I will complete my profile, and thank you for the links. I will check those out as well. Right now I feel like I have been thrown into an odd new nightmarish world I truly wish I could escape, but I have fought like (you have no idea) just to keep him alive. Now that I have him home, I am not sure what to do other than keep him clean and safe. It feels like I am fighting an uphill battle with a medical system that would rather not see him alive.

    Thank you for your information. I actually found this forum on Google as I was searching on how to relieve the spasticity he has throughout his body. He grimaces all the time as his legs are jumping around. I just feel lost, and a reply gave me a great deal of hope.

    Again, thank you.

    Steph

  4. #4
    Moderator Obieone's Avatar
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    Hi Steph ..... and welcome ... you are absolutely in the right place. I think it would be fair to say most here are coping with spinal chord injury but there are also some dealing with tbi as well (and in some cases both ) .. so yes welcome.

    There is a forum dedciated to tbi research here: http://sci.rutgers.edu/forum/forumdisplay.php?f=57 ... you might find helpful !

    Caregiving is all about figuring out how to cope .... share strategies ... ask questions ... share feelings ... so use and abuse us at will. We're sorry you had to .. but awfully glad you found us!

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  5. #5
    Junior Member pricklyrose's Avatar
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    Hi Obie,

    Thank you for the warm welcome. I put in my request for the private caregiver group as well. You will definitely hear a lot from me... I have a lot of questions!

    Caregiving is rewarding and complicated on so many levels. Never know if I am hurting more than I am helping. I give him love, read to him, try to decipher his own language, and thank Ambien in a weird way... long story.

    Anyway, it is 7:30 here and time for meds, so I will chat with you later!

    Steph

  6. #6
    He is entitled to be evaluated for possible admission to the closest designated VA TBI rehab center. For you this is here:

    Veterans Affairs Palo Alto Healthcare System
    Physical Medicine & Rehabilitation/117
    3801 Miranda Drive
    Palo Alto, CA 94304

    650.849.0526 (fax)
    650.493.5000 (phone)

    If he is accepted, the VA may be responsible for his transportation, but that would depend upon a number of factors. Best to contact them and ask about the process for consideration, as well as any other VA services for which he may be eligible related to his BI.

    (KLD)

  7. #7
    Junior Member pricklyrose's Avatar
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    Thank you so much for the information! Getting the VA to help even get the right medication to the door has been like banging my head against a brick wall. If I ever even have a question, I am told he needs to go into a nursing home by the case manager because I cannot handle the care. So, I just do not ask questions.

    I want him in a rehab facility, and until then, I will do everything possible to keep him home. He questions my motivation; every time he calls, I cringe.

    Anyway, thank you again.

    Steph
    "There ain't no reasons things are this way.. It's how they've always been and they intend to stay... I can't explain why we live this way.. We do it everyday... But love will come set me free" ~Brett Dennen

  8. #8
    Senior Member chiappa's Avatar
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    I am not spinal cord injured, have a condition known as Locked In Syndrome, which is caused by a stroke and left me with no movement other than opening and closing my eyes, I also lost speech. This site is great for asking all types of care questions.
    Have you looked into augmentative complication systems for him?

  9. #9
    Junior Member pricklyrose's Avatar
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    Hi Chiappa,

    Simply amazing. I have researched a lot on pvs, mcs, and locked in syndrome. Honestly, I never imagined I would be fortunate enough to meet anyone with locked in syndrome. The neurologist is inexperienced with this form of injury, and said Mike is either MCS or locked in. Mike has awareness and he can purposefully move his eyes and shoulders enough for me to get consistent yes and no answers (if he is not in severe pain from the spasms). He gets extremely tired fast though when he does respond. Though he can respond much quicker than even a month ago - almost instant.

    I did a Google search for augmentative complication systems, and well, got a lot of things on breast augmentation... I am thinking you may need to point me in the right direction if you do not mind?

    If you do not mind me asking, how are you? How long has it been since your stroke? Have you seen the movie, "The Diving Bell and the Butterfly"?

    Sorry if I am all excited. Very nice to meet you and yours.

    Kindly,
    Steph
    "There ain't no reasons things are this way.. It's how they've always been and they intend to stay... I can't explain why we live this way.. We do it everyday... But love will come set me free" ~Brett Dennen

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