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Ten frequently asked questions concerning cure of spinal cord injury

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  • Originally posted by Fly_Pelican_Fly View Post
    Hi Wise - rehabilitation costs of $50k for 6 weeks sounds like an awful lot. Even at a kingly sum of $200 an hour for 3 hours a day, 7 days a week for 6 weeks we are talking about $25k. Throw in accomodation and some care then maybe it gets closer to $35k.

    Also, 3 hours a day everyday is a LOT of training. From personal experience 2 hours a day 4 times a week is optimum for most people and there are many who dont have the physical stamina to do even that.

    Maybe it would be prudent to discuss tailoring a specific rehabilitation programme with the more cost-effective organisations such as Project Walk (and affiliates)? They have the experience and existing national coverage to allow you to outsource the physiotherapy at a far more competitive rate.

    PS I am not a sales representitive of PW. Im just throwing an idea out there.
    I agree 100% with you. I've been saying this since I knew the figures.

    There must be something that i'm missing, but those numbers just don't add up.

    There's an approved PW center here in Spain. They charge you 35€ (let's round up to 50$) per hour , the exercises sometimes are with 2 pt, but usually just one is enough.
    Let's say 2 hours per day 5 days per week for 6 months...this already requires balls of steel to the least.

    2 hours * 5 days * 4 weeks * 6 months = 240 hours
    240 hours * 50$ = 12.000$ all the pt for 6 month.

    What are we missing?
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

    http://www.fenexy.org (soon in english too)

    Comment


    • Originally posted by Fly_Pelican_Fly View Post
      Hi Wise - rehabilitation costs of $50k for 6 weeks sounds like an awful lot. Even at a kingly sum of $200 an hour for 3 hours a day, 7 days a week for 6 weeks we are talking about $25k. Throw in accomodation and some care then maybe it gets closer to $35k.

      Also, 3 hours a day everyday is a LOT of training. From personal experience 2 hours a day 4 times a week is optimum for most people and there are many who dont have the physical stamina to do even that.

      Maybe it would be prudent to discuss tailoring a specific rehabilitation programme with the more cost-effective organisations such as Project Walk (and affiliates)? They have the experience and existing national coverage to allow you to outsource the physiotherapy at a far more competitive rate.

      PS I am not a sales representitive of PW. Im just throwing an idea out there.
      Pelican,

      We have not yet come to a consensus concerning what is a suitable or best rehabilitation program. In one of our centers in ChinaSCINet, they are engaged in intensive locomotor training for 6 hours a day for 6 days a week. Many of our rehabilitation centers do not have the therapists to supervise such intensive training and have suggested 3 hours a day and 3 days a week. The length of time is also an open question. Most people feel that 3 months will be needed.

      Regarding places like Project Walk (and many others like them), please remember that this is a multicenter study that include many of the top spinal cord injury rehabilitation centers. The centers must not only follow a rehabilitation protocol but also evaluate the patients.

      Wise.

      Comment


      • Dr. Young,

        Do you think the exoskeletons such as eLEGS and ReWalk would be beneficial rehab tools? I can see where, provided they become cheap enough, a single therapist could oversee several patients at a time if they were all using an exoskeleton.
        T5/6, ASIA A, injured 30 Nov 08
        Future SCI Alumnus.
        I don't want to dance in the rain, I want to soar above the storm.

        Comment


        • Originally posted by mcferguson View Post
          Dr. Young,

          Do you think the exoskeletons such as eLEGS and ReWalk would be beneficial rehab tools? I can see where, provided they become cheap enough, a single therapist could oversee several patients at a time if they were all using an exoskeleton.
          mcferguson,

          There are basically three philosophies concerning rehabilitation. The first is the most common and that is no locomotor training. A majority of people with so-called "complete" spinal cord injury probably have received no significant locomotor training. The second philosophy is treadmill training with bracing and other devices. The third is practiced in China with intensive overground walking with a minimum of bracing, elastic bands for preventing footdrop, a family member walking in the back pulling on ropes tied to the legs to lock the knees.

          The U.S. and European rehabilitation groups are very device oriented. The Chinese do not favor bracing which reduce the degrees of freedom because they believe that these may result in bad habits. They prefer to train with the walking being as similar as possible to regular walking.

          Wise.

          Comment


          • t12 burst fracture 12 days old

            Dear Dr. Wise, I am recovering from a burst t12 at home in a brace. My neurosurgeon says I will recover and don't need surgery. I have no deficits. I am worried that he sent me home with a brace and walker but noreal instructions on how much I should get up, walk, sit in a chair etc. I am terrified of overdoing or underdoing. Can you advise? He said he would retake rads in 6weeks.
            Thank you for your kindness and time
            drkatysg

            Comment


            • Originally posted by drkatysg View Post
              Dear Dr. Wise, I am recovering from a burst t12 at home in a brace. My neurosurgeon says I will recover and don't need surgery. I have no deficits. I am worried that he sent me home with a brace and walker but noreal instructions on how much I should get up, walk, sit in a chair etc. I am terrified of overdoing or underdoing. Can you advise? He said he would retake rads in 6weeks.
              Thank you for your kindness and time
              drkatysg
              drkatysg,

              I think that you are very lucky to have no neurological deficits. Without more information about your burst T12, it is hard to advise concerning how much physical activity to do. Your doctor apparently does not think that the fracture is unstable and therefore sent sent you home with a brace and walker without instructions as to how much to do. This suggests that you can go ahead and walk as much as you want. The fact that you are intact neurologically means that you don't need to undergo intensive training. However, in order to maintain your function and prevent atrophy, you should probably stand and walk at least an hour a day.

              Wise.

              Comment


              • Originally posted by Rollin Rick View Post
                Third-generation therapies 8 years from now, whoa!! That was a slap in the face.

                From what I see, we are moving in a much faster pace than that, how about 2 -3 years from now? This is a very exciting time, third-generation is right on second-generation backdoor. Time to push for clinical trials!!

                What one man can do another can do
                This is the real deal. As some one said "sooner or later, we will have to jump from animal and in vitro testing to the human being"
                2010 SCINet Clinical Trial Support Squad Member
                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                • Originally posted by Wise Young View Post
                  aten, good question. You would think that the answer is yes. The specific therapy that Dr. Huang is using may not be so easy to replicate in the United States because he is using fetal olfactory ensheathing glial cells. Dr. Lima's nasal mucosa transplant would be doable in the United States. Dr. McKay-Sims olfactory ensheathing glia cells cultured from the nose would be doable as well. I don't know. I am sorry to have to repeat myself but the reason may be lack of money for spinal cord injury clinical trials of therapies not supported by industry. Wise.
                  This is a useful insight. However, I have always questioned the excuse of lack of money in SCI treatment. The fact remains that the actual cost of maintaining a growing population of SCIs is phenomenal. This just gets bigger when we add Alzheimer's, MS, Parkinson's and other neurological disorders.
                  2010 SCINet Clinical Trial Support Squad Member
                  Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                  • Dr. Young,
                    I apologize if you've answered these questions previously in the forum. I'm T-11 complete for 7 years now and had no idea that exercise below my injury is so important. I don't have access to a standing frame or any of the other 3 methods of exercise you mentioned. My legs are significantly smaller than they were prior to my injury. Since it's been 7 years, how do I know if my legs can support my weight (145 lbs)? What should I do to be ready for a cure? How much money should I expect to spend? Thanks.

                    Comment


                    • Originally posted by paracripdude View Post
                      Dr. Young,
                      I apologize if you've answered these questions previously in the forum. I'm T-11 complete for 7 years now and had no idea that exercise below my injury is so important. I don't have access to a standing frame or any of the other 3 methods of exercise you mentioned. My legs are significantly smaller than they were prior to my injury. Since it's been 7 years, how do I know if my legs can support my weight (145 lbs)? What should I do to be ready for a cure? How much money should I expect to spend? Thanks.
                      paracripdude,

                      I apologize for not having answered your questions earlier. When you start standing, you should do it for short periods of time. If you are in a hospital with equipment, if you have not been on your feet for 7 years, you probably should start with a tilt table that gradually tilts you towards an upright posture until you are no longer dizzy. Then increase the amount of time that you do weight-bearing on your feet from 5 minutes, 10 minutes, etc. until you are standding an hour a day.

                      There are many devices for standing. One of the simplest that I have seen requires finding a place with wall-mounted handrails and using a sheet that is placed under your butt. Roll your wheelchair up against the wall with the handrail. Take the two ends of the sheet and insert them into the handrail and have somebody pull the sheets to lift you butt until you stand. Stand, facing the wall.

                      Another simple device is a standing frame. A third device is the glider. You can look all these up on internet. I hope that other people might comment on the devices that they find to be the most useful.

                      Wise.

                      Comment


                      • I'm a T6/7 para 38 yrs. post injury. I did my rehab at Sacred heart in Spokane and the G.F. Stronge in Vancouver, Canada. I was told from day one to stand as much as possible. Back in those days, we didn't have standing frames for home use. Instead we were issued those old heavy metal leg braces with the 1/4" steel plates in the soles of the shoes to attach the braces. I used these for standing and used to stand at a table with a webbed belt around my back to secure myself while standing.

                        Since then things have progressed to where home standers are common place. I have the Easystand 6000 Glider presently and use it at least three times a week for at least an 1hour each time.

                        I truly believe that standing has helped keep me in the good shape I am in after all these years. I think it is one of the best things we can do for our overall general health and don't want to imagine what I would do without one. I also ride an FES bike twice a week at our local hosp., ride a handcycle, work out in a gym with a trainer 2x's a week and have a vitaglide and shoulder press machine at my home. I have hooks in the ceiling above my stander where I use various strength rubber cords for overhead stretches.

                        IMO it is so important to be in the best shape we can be. Standing is just one aspect; it feels so good to stand tall.

                        Comment


                        • Patrick, your unbeliveable and your efforts are highly respected. I try to stand at the sink with braces locked; very difficult. the easy stander sounds intersting. Can you give nore specifics on it. Thanks in advance.

                          keeping on

                          Comment


                          • Originally posted by Wise Young View Post
                            Over the years, many questions recur repeatedly every few days. Let me try to recap some of these questions to stimulate discussion. Please ask and comment...

                            1. Will there be a cure for spinal cord injury?
                            • The answer to this question of course depend on one's definition of a cure. If a cure means eradication of spinal cord injury, I think that it is unlikely in my lifetime. If a cure means complete restoration of all function to "normal" or pre-injury levels for all people with spinal cord injury, I think that that this is unlikely because we probably will not have therapies that can completely reverse aging and changes of the body due to the injury. On the other hand, I believe that there will be effective therapies that will restore function to people with spinal cord injury, including touch and pain sensations, bladder and bowel function, erection and ejaculation, and motor control including long-distance walking. Several years ago, I tried to get around the problem of the definition of "cure" by proposing that a person would be cured if a well-informed observer cannot tell that a person has had spinal cord injury. This does not necessarily mean that the person has been completely restored to pre-injury levels or all functions are normal.


                            2. When will a cure be available?
                            • Some therapies are restoring substantial function to some people. These are what I call the first generation therapies which include treatments like weight-supported treadmill ambulation training, decompression and untethering of a spinal cord that is compressed. Some preliminary data suggest that certain cell transplants such as olfactory ensheathing glia transplants will restore 4-8 levels of sensory function and 1-2 levels of motor function. None of these therapies can be construed as a cure. Second generation therapies are beginning to come into clinical trial and should be available in a few years. These include nasal mucosa olfactory ensheathing glia, Schwann cell transplants, and perhaps even embryonic stem cells. The latter unfortunately have been mired in political debate and has already been delayed by 4 years. In addition, several therapies such as Nogo receptor blockers and Nogo antibodies, glial-derived neurotrophic factor, chondroitinase, and other treatments are being developed for clinical trial and may come on line within a year or two. The timing of such treatments depends on the availability of funding for clinical trials. But, if sufficient funding were available, I think that some of these treatments will be shown to be effective and will be available in 4 years. Finally, third generation therapies will be closer to the "cure". These include possible combination cell transplant therapies with growth factors and other treatments that stimulate regeneration of the spinal cord. These should produce more recovery in more people. For example, cell transplants combined with drugs such as glial-derived neurotrophic factor, chondroitinase ABC, and cAMP/rolipram have been reported to produce significantly better regeneration in rats compared to individual treatments. The rate at which these treatments get into clinical trial depend on the amount of funding available for clinical trial. If funding were made available, I think that some of third generation therapies will be available as soon as 8 years from now.
                            With the recent break's, I was wondering has your view changed that you might see the glimer or light at the end of the tunnel in regards to full cure. example possibly 30 years from now with the progress of medical advancments.

                            I would hate to pass away or even yourself without knowing a possiable end this missery.

                            As i am 46 years of age and been in the chair for the last 20 is there any hope that i will regain the ability to use my hands and legs agian to the point of being independent.

                            I throw off my leg when sitting in one place to long for comfort and at times think well i might just go an stretch my legs for a moment but know dam well my legs won't move. I would like (selfishly) think i will be able to do this in at least the next 10 years away.


                            do you think that a government body of one government per country should work and focus on a single cure of a problem like NASA did in the sixties? or have several like we do now.

                            Comment


                            • I don't think it's selfish at all to want to stand in the next ten years... You shouldnt "just accept this and play happy "
                              "That's not smog! It's SMUG!! " - randy marsh, southpark

                              "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                              2010 SCINet Clinical Trial Support Squad Member
                              Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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                              • Great info. Can stem cell supplements like JDI iNTERNATIONAL offer be effective in helping SCI?

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