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Thread: “I knew that I had a long road to go, but, I always knew that I was going to recover.

  1. #1

    “I knew that I had a long road to go, but, I always knew that I was going to recover.


  2. #2
    Member ice's Avatar
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    Joeri Hilte

    Just four days before his 32nd birthday and only a few hours into the first vacation he had allowed himself in years, Joeri Hilte suffered a debilitating skiing accident that damaged the C6 and C7 segments of his cervical spine. The accident left Hilte with no sensation below his neck, an inability to manipulate his fingers and elbow and limited motion when turning his head.

    After initial stabilization in France, Hilte returned to his native Holland where he spent 7 ½ months in a specialized rehabilitation center. Hilte’s treatment team in Holland prescribed therapies and exercises only above the break in his neck and encouraged Hilte to adjust to life in a wheelchair.

    Instead, Hilte completed additional treatments on his own and exercised independently - his extra effort resulting in additional control of his triceps and some movement in his fingertips. While impressed with his progress, Hilte’s Holland treatment team continually cautioned that he had maximized his gains and realized the fullest functionality possible. He says they told him not to expect any additional improvements. Undeterred, Hilte was determined to pursue recovery and find supportive clinicians.

    THE INTERNATIONAL CENTER FOR SPINAL CORD INJURY AT THE KENNEDY KRIEGER INSTITUTE – Referred by a friend, Hilte contacted the International Center for Spinal Cord Injury at the Kennedy Krieger Institute. There he discovered clinicians who shared a similar goal of recovery and restoration.

    Hilte arrived in Baltimore in September 2005 for a thorough evaluation with the Center’s Clinical Director Cristina Sadowsky, M.D. Immediately, he began an ambitious schedule of advanced restorative therapies that included three hours of physical therapy and one hour of occupational therapy daily, five days a week. “From day one I felt stronger, as if I had more stamina,” reported Hilte.

    “The advances in modern rehabilitation equipment have sparked the beginning of a shift in thinking; our previous, largely implicit assumption that recovery is limited to the months following injury is simply not true and potential for substantial spontaneous regeneration exists even decades after injury,” said John McDonald, M.D., Ph.D., Director of the Center.

    At the time of entry into the spinal cord injury program, Hilte was assessed to have a ‘complete’ neurological injury - an ‘A’ on the ASIA (American Spinal Injury Association) Impairment Scale. Out of the possible 100 points that can be awarded on a scale that measures the strength and movement of key muscles, Hilte had only a 31. After beginning the program’s aggressive schedule of specialized treatments integrating patterned activity and functional electrical stimulation (FES), Hilte progressed quickly. Shortly into his therapy, he reported experiencing sensation in his trunk, then his hip flexors, and soon feeling and sensation progressed to his hips, quads and hamstrings. Continuing with the treatments, Hilte began to experience feeling in his shins and then down his calf to his feet.

    His gains were not only limited to his chest and below. Hilte gained significant functionality manipulating his arms at the elbow and just before his discharge, he was able to successfully retrieve a dropped ink pen on the floor using his own fingers for the first time.

    Perhaps most importantly, Hilte’s progress at the International Center for Spinal Cord Injury at Kennedy Krieger has allowed him to regain the function needed to pursue independence and realize significant quality-of-life gains. Hilte’s ability to use his arms more effectively permits him to once again feed and dress himself, and successfully complete many other activities of daily living. Most significantly, the increased sensation allows him to feel the affectionate touch of a loved one’s embrace.

    McDonald called Joeri a “highly motivated patient,” but a common example of how advanced restorative therapies provide the best means of regeneration and recovery for those living with paralysis.

    GOING FORWARD – After nearly five months of intensive activity-based restorative therapy, Hilte returned home to Holland in March 2006. He made arrangements to have access to therapeutic devices similar to those he used daily at Kennedy Krieger, such as a functional electrical stimulation bicycle and a standing glider. His treatment team provided him with an aggressive 15-20 hour a week therapeutic home recovery plan, and he plans to return to Baltimore annually to update his therapy program as needed. Hilte reports that his goal is “full functional recovery in two to three years.”

    “People used to believe that the world was flat. It is time to change the current attitude that spinal cord injuries are not recoverable,” said Hilte just prior to his departure from Kennedy Krieger. He encourages all individuals with spinal cord injuries to maintain hope and find physicians and therapists who share the same goal of recovery as the team at Kennedy Krieger. Hilte concludes “I intend to be living proof one day that the therapeutic program at Kennedy Krieger works and provides patients with full recovery.”

    Dr. McDonald echoes the sentiment: “We have to allow hope and the power of possibility to prevail.”

    __________________________________________________ ______________

    It looks great, Dr. McDonald. It looks really great. I almost believed what you said...but we have to see what the patients' opion it about this...

    Patient 1. My suggestion: Join a gym or do therapy at home. No use in spending a shitload of money on therapy before a definitive cure.

    I went into the hospital for a therapy program in January and I realize in hindsight that I was in denial about the results. The therapists told me I impressed them by how much I improved. But I was delusional to think it'd be the solution I thought it would be. Then we get the bills in the mail and it's depressing to see how much all that stuff costs.

    The mixture of selling false hope and being in denial work against us.

    Patient 2.
    If anybody has been to china I would be very interested in hearing from you,my dad and a few other friends are looking indepth into this,we are spending 10-15,000 dollars a month at the crap hole rehab center and getting "nothing" in a way it seems kinda scary but if the china goverment is on top of this when our own cant "why not" if anybody has been thru the china thing please email me,the more information the better.I know to keep an open mind and dont expect a mircle.Please feel free to email me.

    Patient 3
    You are right about the rehab center being a bunch of crap. Last year I tried 2 times in 2 different places. It ended up costing me a bunch of money. I realized that 1 hour of standing, walking in place, or electrical stimulation costs about $300/hour. It was a big lesson for me. Rehab centers are only goof for either the owners or the doctors, but never for the patient. THIS IS A RIP OFF. If we are talking about progress...it is nothing. I agree that excercises are good and necessary, but not for $300/hour. I can do the same excercises at home with very low expenses.


    Patient 4
    We pre-cleared PT at RIC payment by insurance. At RIC we gave them insurance info. 3 months later they send us a bill, not having billed insurance. Gave them insurance info again and they assured me they would send bill to insurance. They didn't and did not contact me again. 6 months later we get a letter from a collection agency. Still trying to sort that one out. Now Insurance company has asked RIC for bill. Not impressed.


    Mr. McDonald...It looks completely different from what you said...whether its your rehab center or not, it looks awful. It stinks. Liars and money makers are all they are.

    By the way, tell us about the new colombia project.

  3. #3
    ice, please provide a link to where you got the patient statements. Thank you.

    Wise.
    Last edited by Wise Young; 10-05-2006 at 03:55 PM.

  4. #4
    Member ice's Avatar
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    Here you are.

    Post #2 on: http://sci.rutgers.edu/forum/showthr...t=66500&page=2

    Post #1 on: http://sci.rutgers.edu/forum/showthread.php?t=68638

    Post #3 on: http://sci.rutgers.edu/forum/showthread.php?t=68638

    Post #17 on: http://sci.rutgers.edu/forum/showthr...t=66500&page=2

    Sorry for the delay. I am very busy...I do my home exercise, & I am not very well equiped yet.

    My "dream" is to have electrical stimulation bike (RTI300), but i can't afford because it costs $15,000. I found out that Sarasota & Motomed are similiar to the RTI300, however they cost about $3,500. They also don't have the electrical stimulation.

    If we add $500 for electrical stimulation devices it equals $4,000. Why do they need $15,000 for the RTI300 bike? It looks like they make $11,000 profit for one piece of shit metal. Who takes this profit...Who makes that huge profit on poor, paralized people?

    This is awful.
    This is another scam.

    Dr. Wise,
    Over one year ago during the discussion about Klaiblasaum Nederland / Turkish "treatment". I say, "Midnight Express". You moved my post. Now we know that I was right...It was the "Midnight Express".

  5. #5
    Member ice's Avatar
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    Post #2) http://sci.rutgers.edu/forum/showthread.php?t=69737

    Sorry about the mistake last time. Above is the correct link.

  6. #6
    Quote Originally Posted by ice
    Post #2) http://sci.rutgers.edu/forum/showthread.php?t=69737

    Sorry about the mistake last time. Above is the correct link.
    Ice, thank you very much. Wise.

  7. #7
    Member ice's Avatar
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    #2
    Snowman
    Senior Member


    Join Date: Jan 2002
    Location: San Diego, Ca USA
    Posts: 483 "Pool exercises are not encouraged because they believe that weight bearing and increase of muscle tone is the key to neurological recovery. Both of these elements are mostly eliminated while in the pool and their theory is that muscle spasms and tone are the predecessor to real movement."

    We do not encourage pool training during a specific stage of recovery, we are not against it entirely.

    From our website:
    POOL TRAINING

    At this stage of your recovery, pool therapy is not the most productive modality for the lower extremities. Since Phase I is Reactivation and Phase II is Development/Stabilization, a reduced gravity environment is not very efficient. In general, swimming promotes flexibility and hyper-mobile joints. This is just the opposite of what we are trying to do—joint stability. One the most important features of our method is closing the connection with the nervous system. To do this, you need direct stimulation from either a highly skilled Specialist, or a closed chain platform.

    Exception: Those with C injuries can begin pool therapy on their off days from Project Walk®. However, the focus should only be on the upper extremities, working on coordination and overall strength.

    Those with T injuries should wait until entering Phase IV (Function/Coordination) before beginning pool training.



    "It is the stance of Project Walk that electrical stimulation confuses the nervous system because an outside foreign signal is being sent to the muscle overriding the natural signal of the nervous system."

    I hope you respond to the PM I sent you on this...

    From our website:
    FES Bikes and other forms of electrical stimulation are important during the early stages of recovery. The external electrical stimulation will maintain muscle mass and help with circulation, which as you are now learning, are very important.

    The main reason we don't have one is cost... $12-15000 is a lot of cash right now for us. Hopefully with fundraising/donations we can get an FES bike. We are especially interested in an RT300 that can stim both arms and legs. We are not against people using them on their own. In fact, one our clients has his in the back of our facility to use during his off time.

    --------------------------------------------------------------------------------
    Last edited by Snowman : 09-25-2006 at 05:02 PM.

    A SCI Rehab Center without a swimming pool seems rather strange to me. With the amount that SCI Rehab center charges, there should be no reason as to why there is not a swimming pool.

    The RT300 FES Bike was my dream, but not anymore. Why? Because of Project Walk's stance is that electrical stimulation confuses the nervous system and overrides the natural signal of the nervous system (I have enough confusion in my nervous system). It sounds like electrical stimulation actually does additional damage. Also some FES Bike users claim an increase in spasticity and exhaustion. I do not think that the cost of the bike ($1,500) is the main reason for non-ownership by Project Walk. It's like the real reason is the side effects caused by the bike. I am desperate, but I am definately not STUPID!!

    P.S. Does anyone know if Christopher Reeve was a FES Bike user?

  8. #8
    ice,
    Exactly what are you saying?
    The article is about one persons success story.

    Now you have pulled Project Walk into a thread about Kennedy Krieger.

    Is it you think Project Walk has a better program..or what?

    Or are you saying all rehabilitation efforts are a waste of time and money? That is how insurance companies and the government seems to view it.

    What else is there for an injured child to do?
    And a child is still doing something an adult isn't doing he/she is still physically growing.

    I don't get your point/s.
    Life isn't about getting thru the storm but learning to dance in the rain.

  9. #9
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    Ice’ I rem, as for Midnight Express therapies you was clairvoyant.
    Last edited by Leif; 10-20-2006 at 08:01 PM.

  10. #10

    The technology is here for a cure but the will is not

    Quote Originally Posted by ice
    Patient 4
    Quote Originally Posted by ice
    We pre-cleared PT at RIC payment by insurance. At RIC we gave them insurance info. 3 months later they send us a bill, not having billed insurance. Gave them insurance info again and they assured me they would send bill to insurance. They didn't and did not contact me again. 6 months later we get a letter from a collection agency. Still trying to sort that one out. Now Insurance company has asked RIC for bill. Not impressed.


    Mr. McDonald...It looks completely different from what you said...whether its your rehab center or not, it looks awful. It stinks. Liars and money makers are all they are.

    By the way, tell us about the new colombia project.


    Ice... There is only a hand full of centers in the USA that are worth the trouble but their $150 to $300 per hour for therapy is out of reach for more than 95% of the injured.

    I also got the boot after 3 months of pt at kisser and i was improving, these centers were a complete waste of time had NO choice but to fight the system and lost, i set up a gym in the garage from used equipment purchased at the goodwill stores in the southern California area, also use the YMCA pool 5 times a week.

    My fight with Kaiser and Medical is over, they won, I will not get a chance to get a KFO brace and special training to be able to walk with the assistance of a walker and the leg brace, I have friends who are complete SCI class A and had their private insurance pay and are now walking over 400 feet on their own with a walker and a leg brace.

    Have also herd some stories of people with complete injuries making huge comebacks with aggressive PT here in the USA but they refuse to go public.
    My point is that most of us injured wake up every morning confronting the situation in a positive way but it only takes a rush by time DRs visit or the reality of our broken down health system, or the "nothing in the US research pipeline for a cure statements” to set us back into reality.


    Dr.Wise it is NOT about negativity is about the reality,
    Just read how most if not all of the newly injured start their search in and out of these forums and they seem to all come face to face with the same reality.

    I am completely convinced that with all the BS that is going on in this country it has fallen waaaay behind in research and even more with the FDA protocols making it 8 to 10 years before any sci cure can come to the general US public.

    Many people are going over seas for treatment and for PT, countries like Cuba, Argentina, Brazil, Mexico and Colombia have PT centers that use the same techniques and similar equipment to that of the US and have therapist who value their professions and their jobs and are willing to help by giving it all to their patients at prices that range from $8.00 to $20.00 us dollars per hour.

    Personally I will be heading down south to Colombia in a few weeks to a tropical town where I can live for $800 us dollars a month and that includes two hours of PT a day a full time nurse/assistant, food, rent and transportation and yes health insurance and coral reefs to swim with dolphins.

    The great thing about going south is that I can set up shop and get to work quickly, even better, wont have to deal with all the political-money hungry BS of the medical system here in the US and also the hype and false hope the SCI researchers try to sale to the injured, couse at the end it is always about not having the funds in the richest country in the world.


    ICE forget about getting any straight forward up to date info here in CC on Dr McDonalds Colombian project, some senior members in this forum had a phone-conference with Dr.McDonald but for what ever selfish reason they never posted it here. Many new research and procedures have become TOP-secrete and that is why I think that he cure will come but not from the US (to much selfishness and unfair competitive tactics) but from some other country somewhere out in left field
    Glider

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