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Thread: New SCI patient - have lots of questions

  1. #1

    New SCI patient - have lots of questions

    Hello Everyone --

    I stumbled across this message board and breathed a sigh of relief. I know that anyone who reads this will most likely respond.

    I am 38, married, with two children (12) and (8). My life (including my husband and my children's lives) have changed dramatically, and I can not imagine (and don't wont to think about) SCI patients who do not have a family like mine to help.

    My 78 year old father fell off his bed four (4) months ago and incurred C5-6 incomplete injury - quadraplegic (he has wrist--it sounds so silly but oh, --we are so greatful for wrist). He under went C4-5-6-7 bone fusion surgery and was in hospital/rehab for three months.

    He has been home for one month. During the last four months, I have learned more about SCI than I ever dreamed I would know.

    Each day I visit my father and try to do what ever it is that I can do to "help"; whether it is clipping toe nails, shaving, setting up for teeth brushing, stretching legs, helping with his "bridging" exercises and PT, folding laundry, taking my Mother shopping, trying to get help with medical bills, meeting with ramp contractors, cooking a meal, etc., etc., etc.

    The most difficult thing that I have to deal with is the "why" questions that my father delivers each day..........

    Why.....does it hurt so much?
    Why.....do my legs feel like they are in water?
    Why.....do my legs feel like they are freezing?
    Why.....do my hands and feet swell?
    Why.....do my wrists ache?
    Why.....does my bladder feel so spasmatic?
    Why.....don't I feel like eating?
    How.....long will it hurt?
    Will....I ever walk again?

    ........all of these questions are presented to the many doctors that we see, and none are ever answered.

    I know that I am a rookie --- and that is okay, because someday, I will be able to relay all this newly found information onto someone like me, who needs it.

    Any information that anyone can relay onto me would be soooooo very much appreciated!!

    I am reaching out to those who I know will help me, because you have experienced all of these things first hand. I know that this message is vague--I am not really looking for any "specific" thing -- I will appreciate any info that anyone responds with.

    Thank you --
    A daughter who loves her father very much,

    LeeAnn

  2. #2
    This is one of life's toughest challenges and I think it is even more difficult because of your fathers' age. You sound like a wonderful daughter/mother and you may need more medical help along with support from other organizations in your community. You did find the right Internet site to help you handle this distress.

    Best Wishes,

    PN

  3. #3
    Hi LeeAnn,

    I am not the greatest wealth of information, but I just wanted to let you know that this board is where I have received so much support. The people here are really knowledgeable, and have been thru it all (unfortunately).

    I will not pretend to know what you and your family are going thru, but know that I am praying for you.

    Scarlett

  4. #4
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    Location
    bellevue, wa, usa
    Posts
    10,992
    Welcome, LeeAnn!

    I'm so sorry about your dad. What a cruelty this stupid injury is, and what a hard break at his age. He's obviously lucky to have you close by.

    Have you told him and your mother about these forums? There are always people around who have experienced all the sensations/questions in your list, plus nurses who can describe the physical reasons for what's going on. It's also extremely reassuring just to know that you're not alone.

    Here's the best advice I got when my husband's injury was new: Never do for him what he could do for himself. Every day, look for some new thing, however small, that he can take on.

    The process of getting the hang of living inside a body so radically altered is long--it happens in tiny little increments. Look for those changes, and celebrate them. And keep us posted!

  5. #5
    Member
    Join Date
    May 2004
    Location
    Columbus, Georgia, USA
    Posts
    45
    Hi Leann, I am kindof new to this myself. My wonderful son, Guthrie was injured on a 3 wheeler 2 years ago. He was 9 yrs old. He had a C-2,C-3 injury like Christopher Reeves, except the drs say Guthrie has an incomplete injury because he is moving below his level of injury. guthrie in a Quad right now. I do everything for him. My family is wonderful, except they live 1 1/2 hrs from me. Me, my ex, and step-dad do everything for him. The Doctors were giving us no hope that he would ever be off the ventilator, but he was after 3 weeks. I have to realize that God has a purpose for us in life and I pray God, if you can remove this suffering, please do so, but if it is fulfilling your purpose, I want that too. Guthrie deals with, but will never except being in a wheelchair the rest of his life. He is so full of life and is an inspiration to other boys and girls his age. What I am trying to tell you is that God will remove the suffering in time. Doctors can't tell you why SCI patients are progressing the way they do because they don't know. The higher power does. I would love to hear from you and share more with you. You sound like a wonderful daughter and mother. Please take some time for yourself though, or else you will wear down. Good luck.

  6. #6
    Senior Member zillazangel's Avatar
    Join Date
    May 2004
    Location
    North Carolina, USA
    Posts
    3,399
    I'm really glad you're here, but sorry for the reason you're here. I am the AB fiance of a 16 year post SCInjured man - we are both 35 years old, so different situations, but many similarities all the same. I don't have many answers for you, but wanted to welcome you here.


    Zillazangel, I am an able bodied significant other of a C4/5 quadriplegic man

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