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  1. #11

    mda and kendalls aunt

    I am so sorry that you have a reason to be here but it is a great place to be when you find yourself in this situation. I am married to a C6-7 quad. He is three years post next week. The beginning was so extremely difficult but things do get a lot better. I felt so overwhelmed that I wasn't sure that I had the strength to do everything that had to be done. It was hard but somewhere deep down inside, we find the strength to get things done. My husband can now do almost everything by himself. He has become extremely independant with all of his care, and now I find myself crashing. Like now I need to find my time and do things for myself.

    The way we always tried to deal with things was to keep the communication open. I have always felt that communication was the most important thing to have in a good solid relationship. Especially when you are dealing with an injury like this. Just always remember that things WILL get better. As time goes on the UTI's get less, the bowel accidents get less and the independance of your spouse becomes more that you do not have as much to do for them. Your life returns to a somewhat "normal" life. Sure there isn't a day that goes by that I don't think that our lives would be better without this stupid SCI thing, but I do not dwell on it.

    I agree that mixing the roles of spouse/caregiver should be done as least as possible. You really need to be able to spend time with your kids and on yourself. If you don't, things will start to really overwhelm you and one day you will crack. Please feel free to email me anytime if you have any questions or just want to talk.

    btw kendalls aunt, my husband (fiance at the time) was injured on 5-6-99.

  2. #12
    Senior Member TD's Avatar
    Join Date
    Aug 2001
    Phoenix, AZ, USA

    Greetings, New member!!

    Hi, MDA, and welcome!!

    My wife is my caregiver and I have learned that she really needs time to herself. It took us three years before we felt comfortable in her leaving me for more than a few hours. I now realize that it should not have taken that long so my advice is to start now, stealing an hour or so every so often for yourself. As your husband gains more confidence in his ability to take care of himself you will find more time to be the mom you want to be.

    My daughter (a T11) had two young children (2 and 5) when her accident happened. She found it necessary to bring in a caregiver and so should you. As your kids grow up you should involve them in helping daddy. Even a 5 year-old can fetch supplies and you will find the more comfortable she becomes with daddy's condition the more she will want to help. My grandkids (now 9 and 12) worry more about their mother than she does.

    At the risk of infuriating my fellow members here I would like to suggest another excellent site for you and your husband to learn about his care and how much of it he should be able to do. I am sure WhiteRabbit will agree that the most comprehensive printable literature available for SCI is at the Paralyzed Veterans of America website ( ). They have a complete library that addresses everything from AD (autonomic dysreflexia) to Urological answers. You do not have to be a veteran to access this info and it will be good reading for both of you.

    This site is the best interpersonal SCI site I have found (and believe me, I have searched!!!) and will answer questions that even the VA has not addressed. You will find a helpful, loving, and (sometimes) combative family whose only objective is to provide support for everyone affected by SCI. You will even find children of SCIs posting here occasionally. I know because my granddaughter views and posts here.

    Also, there is our push for the "Cure". There are several doctors, especially Dr. Young, who keep us all up to date on the latest research and technology. Whether it be foreign or domestic, there are currently trials of all kinds that are in search of the cure for what ails us. It can be frustrating at times but the medical field is working to get us out of our chairs and back on our feet.

    Again, welcome to our family and never be afraid to ask questions because the only stupid question is the one that is not asked.

    "And so it begins."

  3. #13
    Hey, TD - We love the PVA here! They do have one of the most comprehensive, easy to read literature; their pamphlets on Autonomic Dysreflexia are clearcut, and they have versions for health professionals that explain symptoms and treatment.

    Tough times don't last - tough people do.

  4. #14
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    you must be an amazing person

    Good grief, girl! Six months post, a pregnancy, birth, newborn, AND a 5-year-old. How on earth we do this thing really is beyond me. I was really glad to hear that your husband got out on his own . . . my husband (also c6 incomplete) goes everywhere at 13 months post, including taking our two daughters to Snowbird, Utah by car about 3 weeks ago.

    When he was just home from the hospital, he slept about 16 hours a day and dozed for the other 8. He had uti's, bowel accidents, respiratory infections--it sucked in some ways worse than the hospital, because I could at least sleep when he wasn't next to me having those wrenching spasms or trying to cough up some nasty pond scum. This shit went on for, oh, about 3 months, so if your case is anything like ours, you could be at the end of the worst.

    I'll pray that you get to sleep. I'll pray that you get to enjoy your baby.

    Take care, for five minutes a day, of you, and keep us posted on how it goes. We do care--it isn't just a word.


  5. #15
    Senior Member
    Join Date
    Feb 2002
    middle of nowhere

    new member mda

    Before this thread gets too old I'd just like to add that TD is right about the PVA. At first, I wanted to dissasociate myself fromanything to do with being an SCI person. It's called denial. The PVA (I'm A member) publishes the Paraplegia News. I'mnot near one now and I'm on thick carpet, but I don't think you have to be a member of the PVA to subscribe. The PVA will tell you everything you wanted to know and a lot you don't want to know about SCI.I suggest looking into it mda. best of luck to both of you-once you and your husband get the hang of it you'll see that we're really not too fragile.John

  6. #16
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    An unfortunant welcome MDA. I'm sure you'll learn a lot here. I also had a ton of UTI and spasm problems but they lasted a year after I got home. If I knew then what I know now...LOL You don't need to see a SCI urologist each time. But you should schedule an appointment with one to work out tests that need to be taken, if there is a better bladder management technique for his particular injury and your family obligations, etc. Have the specialist hook up with your home town uro or primary care doc for follow ups. Ditropan should really only be used for bladder spasms in quadriplegics (paras can take it for sweats after a check up. Like Whiterabbit said, you need to find the cause of the sweats and spasms.

    BTW, if you or anyone else needs pain meds like darvocet or percoset have a discussion with your rehab doctor or neurologist, and again, have them copy your PCP. I ask my PCP for 20 darvocet a year for when my shoulders give me trouble. And we do need pain control or we get AD for broken bones, that boil problem (had that too WR), sprained ankles!, etc. It's a matter of taking control of your own care. The website will help your husband start on his own care. Make sure you print off what you feel a PCP needs to know in case of emergency like what autonomic dysreflexia is. Another thing that helped me was finding out that, for me, I had a UTI worth treating even when the colonies were below 100,000 or whatever the normal cut off is. If I start spazing (legs) and my back hurts it is time to drop a specimen off for a UA AND culture. Save time and ask for several sterile cups whenever you're near the lab. And if he continues to have loose stools or diahrrea from antibiotics, let his doc know. That can be treated but not on his own using over the counter meds without his doc's OK.

    You'll make it. But definitely ask friends for help with the spouse or to take the kids for 2 hours so you can go to a movie or whatever.

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