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    A little background ...

    Juan and I have been together for 5 years now. We are not married, but our son, Noah, is 16 months already!! The 3 of us are in this for the long haul

    Juan is very active, working full time until recently, teaching percussion courses part-time, and hanging out with Noah and I the rest of the time. He doesn't take any meds for either pain or spasms, though I know he has both. He makes it look so easy sometimes that I forget he's injured. He has been a T7 for 15 years.

    I feel like I came in the middle of all this and I'm always trying to keep up. From this site and from Juan's mom -- I know it has taken him a long time to become self-sufficient and that he went through a lot to get there. I just want to make sure that I am keeping up with everything. What kind of things should we be expecting? Bone density loss? Arthritis? Recently, he has mentioned pain in both elbows. There must be so many other things that are to come as his body ages ... What should I be making sure he is doing? Vitamins? Exercise routine? Annual check-ups? What kind of an exercise routine does he need to be on in case a cure comes along?

    I guess what I need is a manual .. This site is an excellent source but I feel like the info is so scattered and with a 16 mo old running around here I rarely get to spend time on the computer! Any suggestions for a book, journal or a pdf?

    Thank you guys ahead of time ...

  • #2
    Well, first of all, I would assume that Juan is already an expert on his own body and what he needs to be doing to maintain his health. Have you discussed these issues with him? Can you get him on this forum? While it is great that you are together and supportive of him, he needs to be in charge of his health and making decisions about it.

    If you want to increase your knowledge about his SCI and ongoing health management with SCI, there are a number of good books on the market. Here are a few that I recommend:

    Mayo Clinic Guide to Living with a Spinal Cord Injury

    Spinal Cord Injury: A Guide for Patients and Families

    Spinal Cord Injury: A Guide for Living

    A Complete Plain-English Guide to Living with Spinal Cord Injury

    In addition, there is a free book on SCI he can obtain from the Christopher and Dana Reeve Paralysis Foundation.

    The consumer guidelines from the Consortium for Spinal Cord Medicine are invaluable. New ones come out every 1-2 years as well. The PVA "Yes, You Can" book is available on-line and is excellent as well.

    Several websites also have good information. Check out the articles by Dr. Young on this site (linked on the homepage). Craig Hospital has some excellent resources related to aging and long term health management. This site from the University of Alabama also has some good information.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


    • #3
      Lots of info here! Thanks so much!


      • #4
        Welcome Anna, I hope Juan will join us also. The guys here will be able to help a lot.