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Interest in intensive exercises (FES bike, treadmill locomotor training)

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    Interest in intensive exercises (FES bike, treadmill locomotor training)

    Seneca and I was recently discussing with a well-known and experienced clinician who indicated to us that he was not sure that there is a big market for exercise devices. He recounted his experience with the Ergys bike and how, even when they provided the bike at low cost ($25), to people with spinal cord injury in the 1980's, few people took advantage of it. He suggests that if such devices were made available in the major rehabilitation centers, there would be few people who would be interested enough to warrant the expense and effort. So, if there were a well-designed home device that could do walking exercises... what would your reaction be?

    [This message was edited by Wise Young on Nov 02, 2002 at 06:00 PM.]
    3
    I am not interested
    0.00%
    0
    I would try it only if it is for free (insurance-covered)
    0.00%
    0
    I would try even if I had to pay $1000
    0.00%
    0
    I would try even if I had to pay $10000
    0.00%
    0
    I would try regardless of cost.
    100.00%
    3

    #2
    No cynicism allowed

    Dr. Young, that clinician also believed that what SCI's say they would do and what they are actually willing to do are two separate issues. It was my opinion that the desire and motivation to improve regardless of the hassle or cost is there. If the entire community was truly apathetic, Drs. like Koa wouldn't be making hundreds of thousands of dollars a year. Places like Project Walk wouldn't be successful, there would be little or no interest in the treatments offered by the Chinese and Russians and the OEG/C researchers certainly wouldn't be overwhelmed by requests by SCI's from all over the world to enter their trials. I think it's important that we not make generalizations about what the entire SCI population is willing to do to get better based on a small sample from a limited geographical area. [img]/forum/images/smilies/smile.gif[/img]

    Comment


      #3
      Seneca, I was taken aback by his suggestion that there would be little interest. I agree with you that there are two problems with this poll. First, people may say that they are interested but don't really do it. They may have the greatest intentions but when it comes time to put up the money and the time, they don't do it. Second, our community may attract people who are particularly motivated and may not be representative of the more general community. Wise.

      Comment


        #4
        Therein lies a big part of the problem - that "a well-known and experienced clinician" could have such a myopic viewpoint.

        I think some simple market research (focus groups) on the subject would yield encouraging enough results; and followed by an education / awareness campaign, the results would be far more conclusive.

        If we passively wait for "clinicians" to deliver the best therapy, we'll die of frustration. The key, in my opinion, is a "bottom up" campaign, led by those with the most at stake (guess who). Individual efforts, like those of many on these forums, and a growing "demand" for a more aggressive, performance based therapy, will ultimately lead to a "critical mass, " and a more positive mainstream approach to recovery.

        Unfortunately, the ones with the most leverage are also the least informed and most naïve. The newly injured are a virtual "gravy train" for treatment centers. If they could be adequately informed and given a strong voice at the early stages of treatment, it would have a profound effect on the status quo.
        Know Thyself

        Comment


          #5
          so many of us have gone from being successful normal families to depending on SS income and family help. Spending money has become a thought out process that some of us find difficult. To spend $1000 on a piece of exercise equipment would be a huge investment for me. What I am trying to say is its not that we are not interested its just not practical for most of us.

          ...act like a survivor not a victim.
          T-10 complete
          10/08/01
          "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming 'WOO HOO' what a ride!"

          Comment


            #6
            Sub-Poll

            If I had been well informed, and offered real choices at the time of my initial rehab - when my insurance was willing to lay out for services, unquestioningly - I would have chosen:

            A. standard sit and transfer program

            B. activity based program that would enhance my potential for recovery and provide a platform for long term health and performance.
            Know Thyself

            Comment


              #7
              Dr. Young,

              You mentioned this clinician experienced apathy back in the 80's. Isn't it true that we are just now realizing what excercise and intensive rehab can do to regain function. Also, it seems to me that rehab facilities still don't promote excercise as a possible aid in regaining function. They seem to still have the mindset that you should just accept your level of injury and learn to deal with it. If TIRR had told me the benefits of gait training back in 2000 I would have immediately bought or built a gait training system and not waited until this year.

              Deb
              "Save the last dance for me!"

              Comment


                #8
                I agree, Debbie

                I think all the recent exposure has begun a shift in people's thinking about exercise.

                The other thing is that with all the advances in bladder management, kidney problems will no longer be far and away the leading cause of early death for us. Living longer means that cardiovascular fitness will become more and more important. I also think that more insurances will wake up to the cost savings of FES. Preventing one bad pressure sore can pay for a FES bike.

                ~See you at the SCIWire-used-to-be-paralyzed Reunion ~
                ~See you at the CareCure-used-to-be-paralyzed Reunion ~

                Comment


                  #9
                  Rick, Debbie, Seneca, Wheel, Jeff - very well said, great points.

                  Wise, its got to be top down leadership and a bottom up effort. The doctors have to promote it and then the insurance will pay for it. On the opposite side the "mavericks" like me and a few others have to drive it from the bottom up. Hopefully we'll meet in the middle in the not too distant future.

                  Overall, there has to be a psychological shift. Most importantly from the docs, medical, rehab community.

                  Reading and sensing a few of your recent posts Wise it might behoove you to visit Project Walk or Dr. McDonald's program? I'm not sure that you're totally on board with this exercise towards recovery concept?

                  Hopefully the UMI and Wayne State University studies now ongoing at PW will prove the validity of exercise/rehab recovery.

                  Doctors are funny. They say to me "we're not sure about this, we need proof". I say give me the money, I'll show you the proof" They say "we can't afford for you to prove it but we think it may be plausible". It's like which came first the chicken or the egg?

                  Sheesh.

                  Onward and Upward!

                  Comment


                    #10
                    bump

                    Comment


                      #11
                      Time vs. Money

                      I am more than willing to invest my time and a reasonable amount of money in an exercise program that may or may not result in physical improvements for me.

                      Investing my money and my family's money in the possibility of improvement is a greater risk that affects my entire family.

                      The amount of money we can afford to spend on the possibility of improvement is directly related to the amount of money we have. A millionaire can easily spend $10,000. An individual on a lower income can't afford to spend $10,000, regardless of how much he or she wants the equipment.

                      On a cynical note:
                      If a manufacturer discovers that we are willing to pay $10,000 for equipment, I suspect that the device would quickly show up on the market...priced at $9,999.99.

                      Comment


                        #12
                        I agree with seneca... intention does not equal use. However, intention does imply market. One of the reasons for this poll is that many companies are looking at this issue with interest. If they perceive few people are interested, they will not invest in the development of such devices.

                        rtr, I agree with you as well that cost is relative. A person who is a millionaire would not think twice of parting with $10,000 for a device that might restore some function. On the other hand, I believe in volume and competition. The only way of effectively reducing price is a big market and a number of companies that are trying to gain a foothold in the market.

                        chris, very true. In Germany and Switzerland, the role of ambulation training has already convinced a majority of rehabilitation clinics that they need to provide such training. There is a need for more compelling data of the beneficial effects of such training before it becomes widespread. I think that it is very important that the decisions of clinicians and consumers be evidence-based.

                        Wise.

                        Comment


                          #13
                          exercise devices and exercise in general

                          These products are already on the market and are being used. Why would exercise not be just as important to persons with spinal cord injuries as they are to anybody else. Exercise is good for everybody regardless if they are SCI or not. Staying in shape reduces wounds, lifts spirits, creates community involvment, and promotes a healthier and longer life. Under sound guidance, everyone can and should exercise as much as they possibly can.

                          jrm design art studio

                          [This message was edited by meeker on Nov 17, 2002 at 03:35 AM.]

                          [This message was edited by meeker on Nov 17, 2002 at 03:37 AM.]

                          [This message was edited by meeker on Nov 17, 2002 at 03:38 AM.]

                          Comment


                            #14
                            The problem is

                            The SCI Market is so small (hundreds of thousands vs. millions and millions of a/b's) that mass production cannot be done as easily therefore escalating cost of the final product. Also there are higher insurance costs at the manufacturing end due to the extra liability with this type of equipment. I think a lot of people have Investigated selling this type of equipment and discovered the economics do not make much sense. It is a real problem because it leaves SCI people with few options, if they hit the lottery or have a settlement, that is a different story. But for the average SCI person, if insurance wont pick up the cost, they might as well forget about keeping their paralyzed limbs in shape. The Government does not seem to express much interest in getting involved and taking care of their people in this sort of way either. Its a catch 22.

                            "Life is about how you
                            respond to not only the
                            challenges you're dealt but
                            the challenges you seek...If
                            you have no goals, no
                            mountains to climb, your
                            soul dies".~Liz Fordred
                            "Life is about how you
                            respond to not only the
                            challenges you're dealt but
                            the challenges you seek...If
                            you have no goals, no
                            mountains to climb, your
                            soul dies".~Liz Fordred

                            Comment


                              #15
                              There seems to be much greater availability of exercise equipment such as FES bikes and assisted gait training in the USA than in the UK. That may be a false impression I have gained from reading postings on this forum but despite several enquiries about obtaining this kind of equipment on this side of the ATlantic, as home based apparatus, or for use within a realistic travelling distance, I have drawn a blank. There are many people who would purchase this kit if it was available but cannot because it is not.

                              Comment

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