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New to site w/ 27 y/o son that recently shattered C4

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  • #16
    ekephart,

    I just wanted to add that high level complete injuries can benefit from continuing therapy it's just that insurance doesn't always cover it. In other words those that need all the help they can get are forgotten at model centers. I think that philosophy is the downfall of the big centers. Just my opinion.

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    • #17
      I feel blessed that in the days I was injured, the rehabs did what was best for the person injured and not the insurance companies greed. TImes have changed.

      Back then they kept you in house til you were strong and independent enough to leave. Now they would rather put a person in a power chair and send them on their way rather than keeping them lomger til they were strong enough for a manual or maximized their potential.

      I agree with NRF, on continuing working to maximize his potential. Once the rehab is over, it's time to get a personal trainer who is willing to think outside the box to work your brother in the gym. And especially get into wheelchair sports. He'll learn more from the other guys and girls than any therapist can teach him.

      He's only been injured a year, he can still gain a lot. It's a matter of working the muscles that are too weak to respond yet rather than just concentrating on those that work fine. I use various strength rubber cords and can do an entire workout by placing them at different heigths and angles. A person doesn't need thousands of dollars worth of equipment get strong. I do mine at a cost of under 20.00 for the cords. I do other things of course.

      This is a time for him to really work on maxing his potential. He's blessed to have support like you.

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      • #18
        I am not saying that anyone should stop working. Ryan does not have access to wheelchair sports as there is no such thing in our area. Also, personal trainers in our area are afraid of his injuries. Fortunately, he has finally found a therapist that is not only not afraid, but is also willing to do research about SCI and try different things. His therapist interned at John's Hopkins and saw SCI patients as well as everyone else. He took Ryan's home exercise plan from Shepherd and expanded on it as Ryan has gotten stronger. He has also communicated with Ryan's last therapist at Shepherd to get ideas and recommendations. Ryan has definite goals to reach before returning for gait training. Part of the problem has been that in addition to his SCI at C-2, Ryan also has a traumatic brain injury where the tip of C-2 went into his brain stem. This results in severe co-ordination limitations as well as judgment and decision making. Ryan has to get stronger then teach his brain how to make the movement happen. This is not something that his therapist has experienced before. They are learning together. The reality is that there are not very many dual injury programs available.

        I think that the most important thing to remember is that each SCI is different and to a large extent you have to find your own way. Fortunately, Ryan has a family that has been willing to do whatever it takes to ensure that he gets what he needs. We have not relied on insurance (which is not prepared for long term rehab-they want you to either die or get better in a timely manner). If my husband could get a job in his field in a large metropolitan area, where Ryan would have better access to experienced professionals, we would move in a heartbeat. My husband's firm supports the military (all disciplines) and we are currently in an area with about ten military bases within a fifty mile radius. Unfortunately for Ryan but fortunately for the community, there is not a significant local population living with SCI. It has taken us two years to find a therapist that is willing to do more than go through the motions and collect the insurance money. His therapist even went with him to the gym to show him what equipment to use and how to do the exercises as the trainers there wanted us to go somewhere else, they were afraid. This therapist is not the norm. He is young (not too young as VA requires a PHD for a PT license), wants to learn and most importantly, wants to do what is best for his patient.

        While Ryan still uses his power chair 90% of the time and always when going anywhere that he will have to propel more than a little bit, he is using a manual chair around the house and for short excursions. His shoulders may never be strong enough to propel a manual chair, but he has the potential to walk again and that is our focus at this time. In addition to training his therapist, he has trained the community. He goes with me every week to the grocery store where he used to have a part time job while in high school and to restaurants, the movies and anywhere else he wants to go. He has trained his doctors, the dentist, waitstaff at restaurants and countless others who cross his path on a daily basis. I still get a kick out of ever first visit with a doctor. They see on paper that he is a C-2 and have very limited expectations. He even had a doctor who thought his leg movements were spasms and wanted to put him on a baclofen pump immediately. We would have fired the doctor immediately but the other physiatrists in this area say he is the best, what a terrifying thought. I guess he has seen a SCI person before and they are afraid.

        I think everyone needs to make decisions regarding their rehab based on their goals and the expertise of the facility they are considering. --eak
        Elizabeth A. Kephart, PHR
        mom/caregiver to Ryan-age 21
        Incomplete C-2 with TBI since 3/09

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        • #19
          hi,
          I had an injury to the back of my brain from it smacking my scull.
          one thing that help with memory was going through old photo albums, or even certain smells, and songs from my forgotten years have opened locked doors over the years.

          I know all injuries are different, but just wanted to say that certain things would trigger some things that were gone for me.
          my kids would say remember when.... and i would say no, but if a photo was there, it often solidified it and I would remember all or part of a block of my life.

          I wish he could get into a pool and do dog paddle or crawling motions. it was very helpful in healing some coordination. Im still very clumsy but the pool exercises really were good for me, though I have a lot more of my body to work with, it seems some things would just make relearning go faster.

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          • #20
            Wow, thank you for the sharing of your knowledge and experience. He does have a 24 fr catheter. What size do most people have for a SP catheter.

            Millard, I am also concerned about the bottled water, and the lack of testing on the water. We don't need exposure to the petroleum in the water from the plastic bottles either, and we have no idea how the water bottles are maintained between bottling and shipping.

            Does anyone know why he is prone to the ingrown toe nails now? Any suggestion for preventing further ingrown toe nails. He has only had to see a doctor for this reason since he's been home (November 17th). They become infected and needed to have the nail trimmed once healed and then he has "killed" the nail by injecting the base of the nail with a drug that tells it to stop growing.

            I really appreciate the replies to my questions.

            With sincere gratitude and thanks!
            Last edited by Sam4Eric; 04-11-2011, 12:11 AM.

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            • #21
              I have shared some links from the forum and hoping he will find the interest in joining on his own. He has lost so much control, that I have chosen to see if he will do this without my suggestion. Encouragement and choice!

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              • #22
                He is an Asia B...now I wonder if I typed my entry wrong??

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                • #23
                  Jim had many ingrown toenails the first few years, due to edema. He hasn't had any in the last 7-8 years. Knee high support hose in the winter (wears shorts in summer), tilting to get his feet up a little more often twice/hour and large enough shoes made a big difference, which also protect the feet with regards to doors, etc. He had both large toenails removed so that made a large difference and who needs 'em anyway! His edema is pretty nonexistent now, I raised the foot of his bed and it helped out with his circulation. My brother is type 1 diabetic so foot concerns were paramount, I strongly recommend using podiatrists for foot/nail problems since they have more experience.
                  He started out with a #16 S/P tube for about 8 years and after having some sediment problems went to a #22. Sometimes crystals can indicate stone production so that might need to be checked out. Another simple thing to try (told to us by a Urologist) was to take in lemon juice everyday--so he drinks a full 12 ounces of Chrystal Light/Lemonade everyday before he gets up. The volume of fluid helps keep the blood pressure up and dizziness down and hopefully keeps stone production down, course he says it just plain tastes better!
                  Have you guys considered RIC in Chicago, they are also a highly rated rehab. And closer to go check out. Sheperd is loved by some and some not so much. They would put my brother down on the matt and just let him sleep most of the day I got the impression that since he was older, and had several complications they didn't try very hard (he had a brain injury and broken arm/shoulder and bed sore from acute hospital stay also. AND there was no one of comparable injury to relate to, be competitive with during his stay. It becomes huge that HE want the recovery and/or independence. Make him do all that you can himself, make him take responsibility for his care. Everyone has differing rates of acceptance, injuries and support. Sorry, starting to sound preachy so will just wish you the best. Deb

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                  • #24
                    My husband had his big toenails removed a few months ago. He has constant ingrown toenails that got infected.
                    The podiatrist said because he is not walking and putting weight on the toes to flatter them out. Not sure if that is all the reason, but there are many here that had them removed.
                    He uses the 24FR.

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                    • #25
                      Good post EKE, you've been thru it. May he continue to prosper. It only takes one person, to make a difference. I'm sure the therapist has grown himself in many ways.

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