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

[Wise Young]

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.]

[antiquity]

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. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Wise Young]

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.

[Rick1]

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.

[~Patrick~]

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.

[Rick1]

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.

[angel7]

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

[Jeff]

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 http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[Chris Chappell]

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!

[antiquity]

bump

[rtr]

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.

[Wise Young]

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.

[none]

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.]

[Curt Leatherbee]

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

[Adriandisney]

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.

[Wise Young]

Adrian, I too have heard that access to exercise equipment is limited in England although I think that somebody with sufficient financial resources should be able to import such devices from Europe. At the present, there are very few large companies involved in marketing of such devices. Wise.

[Chris Chappell]

Meeker, good points, good post.

Curtis, good points, good post.

As I'm delving deeper and deeper into this, I call, Exercise Induced Recovery concept / application I have come to the following conclusions:

1. It works for all the reasons stated by Meeker.

2. It doesn't mean a guarantee of motor function return but it does have significant health benefits for everyone that outweigh the reasons not to engage in one (exercise program). Everyone should do something. Even chair exercises.

3. Data providing the insurance cos. reasons to reimburse is coming but should be more concrete within a year - I hope.

4. The equipment is absurdly expensive for most. And it doesn't have to be.

5. Exercise / intense pt will be a part of any "cure" therapy.

6. The future (3-5yrs), imo, is not in rehab designed centers (unless attached to a hospital or sci model center) but in home based equipment.

7. Every doctor associated with CNS medicine should prescribe exercise as part of every rehabilitation program regardless of whether or not he/she believes it will promote recovery or not. Imo, they really don't know what is/isn't possible.

8. The earlier a program is started the better. Same whether ab'd or da'd.

9. This concept is catching on - big time.

10. We are all responsible for going after this whether we have 'money' or not.


Go get'em!

Onward and Upward!

[celtic]

British spinal units always seemed to be of the opinion that you should accept your condition and get used to life in a wheelchair,this may change now that a study carried out at Glasgow Southern General has shown that in some cases patients regained function using treadmills. The last I heard they were seeking for additional funding to carry out a larger study, so maybe things are looking up at last for sci victims in the UK.

[dahliasinbloom]

~

[This message was edited by Jan on Nov 18, 2002 at 10:56 AM.]

[none]

I just got off the phone with Mr.Petrofsky. He, the inventor of this bike, and FES technology, said the price was $25,000. not ($25.) Thus, the reason not much interest; because of the high cost. The price of these bikes have come way down since. For pages and pages of absracts about the benefits of exercise and FES bikes look up Electrologic.com

As a side note, 80% to 90% of these bikes have been covered by insurance and the majority of them are in homes as opposed to clinics. I have to say again how nice it was riding the newest model the "Galaxy"; very user friendly, easy to operate, and comfortable.

Meeker

jrm design art studio

[Wise Young]

Meeker, I meant $25, not $25,000. This was what Seneca and I were told the people were requested to pay to have access to an FES bike... Despite this trivial price, apparently not many people were willing to take the time to use the device. I was very surprised by this because I would have thought that there would be more interest. In any case, our poll here is suggesting that a large majority of people are interested in trying an ambulatory training device even if they have to pay $1000, $10,000, or even more for the device. This should be good news for Steven Petrofsky and Electrologic. Wise.

[joseph]

Steve's done a yomen job with these devices. A few issues to consider are: you need to be consistant. It works do build back atrophying muscles as long as you stay with it.As soon as you stop for any period of time your body will go back to the way it was.Also you should have 2 man transfers or use the lift device. It takes some time to get set up, hooked up and running and then you take everything off and do the transfer back to your Chair(Plan on an hour to an hour and a half.You've also got to unplug it when your not using it for a while because the computers are very sensitive to power surges, although homeowners insurance will cover any breakage less deductable. We are thinking in order to be more consistant we need to find a Physical Therapy school where Justin would be a good research project, or hire 2 persons to come to your house 3 times a week.If you can do these things and remain consistant you will definitly see some good results.Heymaybe if Steve got enough business he'd be able to lower the price. Hey maybe if enough people were interested on this board you could get a bulk rate.Happy to ans. any questions from our experience.

[Sue Pendleton]

I think that before anyone of any means writes off $1,000 or even $10,000 as too much for their family's budget they need to do a bit of homework. First and fore most is how much do you and will you be paying in deductibles, co-pays and lost wages (for those working) for each medical treatment you need that exercise would have prevented.

I went from inpatient rehab to an outpatient 5 day a week program at my local county hospital (no SCI equipment but a PT more than willing to work with me). I did that for 2 years and after working passively with HKAFO braces and then blocked knee standing I had enough return to go back for 4 months of inpatient rehab again. Yes, I have private insurance but while my doc at the time was a PPO at the PPO rehab I still had to call my congressman. When I left there it was back to 3 days a week PT no OT. In the 8 years I did this I was in the ER twice, once immediately after rehab 2 when an aide let me fall during a practice transfer because she was watching me and not my board as instructed and once for possible meningitis. I went from constant UTIs to maybe twice a year by the 3rd year with no change in routines, no pnuemonia or bronchitis or flu (even before I had the Pnuemovax and years I skipped the flu shot), NO skin break down! A sore boil for a bit that I babied but no decubiti anywhere. I did break an arm but that was studpidity on my part. DO NOT use an arm as a wedge and then stir Wheaties cookie dough by hand. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

Two years of no PT and I have had bronchitis, UTIs galore again, a nice touch of cellulitis and to top it all off IBS (irritable bowel syndrome). Oh, and one trip to the ER for a recheck of a badly sprained ankle and torn muscles that were causing AD (which had never been a problem for me before).

In sum, with all my wonderful insurance coverage (and I know I am blessed) they were getting off cheaper paying the hospital and later the hospital's freestanding clinic for PT, and at times OT, then letting me sit. My costs for prescriptions alone could cover that $1,000 bike. Add just 25% of the cost of, say, a broken leg what with husband's time off work for doc visits, pain meds, co-pays for repeated trips to doc for skin checks, etc and that would cover maybe $3,000 of that higher price bike. If you can itemize your taxes then get a doctor's order to include in your records and write that bike off as a medical expense or ask insurance to go 50-50 with you.

Where there's a will, there's a way. I'm working on picking out a non-FES bike because I can now pedal backwards on my own. http://sci.rutgers.edu/forum/images/smilies/cool.gif

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[James Kelly]

Dr. Young:

I would definitely use a home unit for gait training or biking. But unfortunately cost is a limiting factor. If I had the money, I'd spend whatever it took.

However, your relating the experiences of this clinician in the eighties is intersting. I think there would be much more of a positive response if such a device were available today, especially for a price affordable to limited personal budgets. In my opinion this is due to two things; the Internet and Wise Young.

I say "the Internet" because through it the market for such a device can sit in their homes and read all about it, watching videos of the device in use, reading testimonials, and discussing the device's merits online. I say "Wise Young" because through the information he's either directly provided, or given us access to, many with SCI now understand that neural retraining, nerve repair, and functional gains may continue for years and may be effected by repetitive rehab.

James Kelly

[This message was edited by James Kelly on Nov 19, 2002 at 11:13 AM.]

[Wise Young]

Jim, you give me too much credit. Christopher Reeve probably did more to push the idea of exercise for the disabled than anybody else. Even people in the MS community have become real advocates of exercise. I spoke recently to a group of people with MS and told them that learned non-use may be a significant part of their continuing neurological deficits. I anticipated that there might be some opposition or skepticism about that idea but I think most of the people in the audience was quite enthusiastic. I also learned that people in the MS community have a very difficult time getting insurance coverage for physical therapy if they are in a wheelchair. Wise.

[chasb]

If the people involved in FES were smart, they would figure out a way to get their product into more homes. Say, lease the bikes. Have the client pay the freight and pay for insurance (loss or damage). Then find a way to set up a monthly charge. Or maybe a dealer could set up something like this. I don't know much about the bikes. I am just throwing an idea out there. The FES manufacturer or dealer could probably write down the lease loss against the profit on sales. Maybe a lease with the option to purchase. There are ways around every problem.

[mk99]

I just "bought" an Ergys2 bike from Therapeutic Alliance. It hasn't arrived yet... can't wait. My insurance company opted to go for a 24 month lease with the option to buyout anytime. I think this is smart because if it doesn't work well for me, it's a lot cheaper than buying the thing outright and being stuck with a very expensive machine with a very limited market to sell it.

80% of lease payments go towards reducing the buyout price.

This can be done with insurance companies and third party players. If I was an FES company I would probably not want to do this with individuals... although teaming up with a finance company would be a good way to go. You sell to them at a lower price and let them deal with the credit risk, payments, etc. Although you sell at a lower price, you'd sell more units and more SCI victims could benefit.

For the buyer it could mean a payment of maybe $300/month for a 5 year lease-to-own program.

I know that $1/month is too much for many people with SCI and it's very unfortunate. However, for those with jobs and/or some income it may be more doable than paying $14K all at once.

I'll mention this to Therapeutic Alliance next time I speak to them.