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

  1. #11
    Welcome Sam, sorry to hear about your son. Today's technology is so much better in the last few years. Tursfully, your son will continue to gain and flourish.


    I have a good friend (C5/6) who went to Shepherds and came out pretty strong. Also many who went to Craig. I think all the ones above is pretty top notch.

    Stay strong, we are here when you need us.

  2. #12
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    We also live in Wi, Madison to be exact! My brother is C5 complete also and I took him to Sheperd in Atlanta after a dismal rehab in Madison. His accident was 10 years ago and I am his caregiver. My only advise is to go where there are the most peers, since that seems to help the most . Attitude makes the biggest difference in my opinion, w/c sports help many to progress both mentally and physically. My brother had the best rehab experience in a smaller rehab in Knoxville, he was more ready to progress due to other injuries and less medication for one but, importantly the patience and caring of his physio team there. Jim also has an S/P tube and does well, I went ahead and put in an all-house filter so he can drink all the water they need to keep things running smoothly. I don't know were in Wi you are but if you need anything please PM. Madison has a pretty good sports swim/bike program I believe that is connected with the University. And when you go to Craig try to look up Chris Chappelle he is also C5, I think, lives independently, counsils and has a very good positive attitude. Best to you, Deb

  3. #13
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    I have to disagree with nrf. Ryan did his rehab at Shepherd in 2009 for three months and has since gone back one for day program (could not do day program immediately due to orthopedic issues). He not only received medical support (went straight to ICU after being in trauma hospital for 10 weeks) but also received intensive PT, OT, and speech. He got there as a mess in more ways than just the physical. One of the things they work on there is maximizing what you have and learning new ways to do things. They want all patients to leave there as independent as possible. Ryan is an incomplete C-2, ASIA D so his experience was a little different. I will never forget one teenager that was only there for a few weeks and Ryan asking why she got to go home already. We had to have the conversation that her injury was very different from his (high level complete) and that there really was not anything else they could do for her. They focus on teaching the patient and the family how to make sure that physical needs are met, getting the home ready and as accessible as possible therapies that will benefit the patient no matter their current ability level.

    Rehab at Shepherd is a full time gig. Therapy both for inpatient and day program are from 8 am to 4 pm with a one hour lunch break. Ryan did not take a lunch break while inpatient as he was not allowed to eat and usually spent that hour doing e-stim on his throat and a breathing treatment (summer in Atlanta is brutal for someone with asthma). They also work on developing recreational interests in a modified manner.

    We were lucky in that insurance covered (after some fighting-they wanted to sent him somewhere cheaper but not a model center) Ryan's inpatient and his day program stays. WE have since changed our primary insurance (hubby changed jobs) and they do not cover Shepherd as they are not "In network". Ryan wants to go back in the fall for gait training with the lokomat and lokomotor. He will have medicare be them and there will be some coverage there that should help.

    Unfortunately with high level, complete injuries, there is little that can be recovered. Focus shifts to maintaining health, being as independent as possible and forging a new life. Life may seem to be over but it is just different and different can have good elements too. It will never be the same as before the injury but that does not mean there is not a high level of quality of life to be had.--eak

  4. #14
    Hello "Sam,"
    Welcome to the Care Cure Community. It would be a great to get Eric involved in on this forum. There are a number of people here around his age and disability level.

    All the best,
    GJ

  5. #15
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    ekephart,

    I don't want to be argumentative but, after your initial inpatient rehab (which is very good at shepherd) many recommend a therapy that builds on what you did as in-patient, plus adds a vigorous workout of all the muscles that don't work as well. shepherd offers both through 1- their medical based pt,ot and speech, 2- their "beyond therapy program" is a exercise based therapy. However Shepherd does not allow a combination therapy between the two gym's. I don't think that will be a problem at krieger. I don't want to tell you your business, but if I were you with a ASIA D injury I would do anything I could to find a exercise based therapy and try it for a week.

    for instance,Shepherd has a locomotion program in their medical based rehab, but you can only use it if you are in the medical based rehab-not beyond therapy. I think the reason why they structure it this way is to satisfy the insurance companies.

    Ask shepherd about their beyond therapy program, ask krieger about their inclusion of exercise based therapy with medical based therapy covered by insurance then draw your own conclusion.

    Above all good luck and best wishes of good health and return of function whatever path you choose.

  6. #16
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    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.

  7. #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.

  8. #18
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    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

  9. #19
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    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.

  10. #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 at 12:11 AM.

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