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Tuesday, April 16, 2013

ReWalk: A Plea for Common Sense

I have blasted news reports that gush about the exoskeleton. Typical news stories consider the exoskeleton a "miracle" that enables paralyzed people to walk again. References to Iron Man abound as do comparisons to being "wheelchair bound" versus being a "super hero". The message is not subtle: walking is the best means of locomotion. Using a wheelchair is inherently bad. A wheelchair is an antiquated piece of technology and the exoskeleton is here to rescue paralyzed people who are "bound" to their wheelchair. This line of reasoning is misleading at best and relies on ignorance. From my perspective, I think a wheelchair is a phenomenal invention. It makes my life go. It makes the lives of millions of people go. It is essential technology with a long history of success. A wheelchair is a powerful symbol of empowerment. This is not the way the vast majority of people perceive a wheelchair. In fact the wheelchair is the symbolic icon for all things disability.

While I despise the symbolic implications of the exoskeleton, I will acknowledge it is worthy of research. The human body was not designed to be paralyzed. I know this from first hand experience and I cannot recommend the experience. There are a host of health related problems associated with paralysis. There are also a host of solutions for paralysis specific health problems. With time, education, social supports for needed durable medical goods virtually all health related problems associated with paralysis can be avoided. I am extremely skeptical of the clinical use and utility of the exoskeleton especially when compared to well established rehabilitation methods. There is no escaping the fact the exoskeleton is sexy. There is also no escaping the fact traditional rehabilitation is decidedly un-sexy. Since the first Iron Man movie came out in 2008 the exoskeleton has been at the forefront of the imagination. It is fun to imagine a man in the exoskeleton hurling cars. No need to ticket or tow a car out of handicapped parking! Reality however is quite different.

The exoskeleton emerged from the military industrial complex. Corporations such as Raytheon and Lockheed Martin have gone through a host of exoskeleton type devices. The military use of the exoskeleton is not hard to figure out--musculoskeleton injuries are the leading cause of disability among soldiers. These injuries could be prevented if soldiers could carry more weight without straining their bodies. Enter the exoskeleton. As near as I can determine Raytheon is out o the exoskeleton business. Lockhead Martin has the "Human Universal Load Carrier" (HULC). The Defense Advanced Research Projects Agency (DARPA) appears to have already abandoned the hard exterior shelled exoskeleton in favor a "warrior web". This may sound cool but is not. Gone is the idea of super soldiers throwing cars and tanks and enter a light weight suit that empowers a soldier to carry heavy loads without strain on the body. The point I am trying to get at is that the exoskeleton is a cash cow. Commercially the biggest beneficiary is Ekso Bionics, a California based company. Ekso Bionics has been working very hard to get the exoskeleton into rehabilitation hospitals and the homes of paralyzed people. This worries me. Russ Arnold, the chief technology officer at Ekso Bionics has stated "Our goal is to get the exoskeleton out to the home. Instead of going to a rehab center they can do rehab in their home". I am sure this is music to the ears of health insurance companies. Think of the savings! No rehab. No nursing. No physical therapy. No Occupational therapy. No expensive durable medical goods. We can just buy an exoskeleton and be done with a potentially expensive life. It is no wonder the cure industry and health insurance companies are thrilled with the exoskeleton. This is one stop shopping.

The media buys into the utility of the exoskeleton without reservation. Everyone wants to walk. This is a given. The exoskeleton is the essence of cool. The rehabilitation business loves the exoskeleton too. It is the best, newest and most advanced form of technology. We can hire a bunch of technology guys and do away with as many health care professionals as humanly possible. And we all know technology can cure all our problems. Talk about a patient magnet! Thus when I read about the exoskeleton in the newspapers my heart sinks. Newly paralyzed men and women are going to be seduced into thinking they will walk again. Remember walking is good being wheelchair bound is bad. Again, it is possible the exoskeleton has some utility. I differ in that I cannot escape at what cost, symbolic and practical, will the exoskeleton have?

The New York Daily News had a long story about the exoskeleton: "Bronx VA Doctor Helps Paraplegics Walk with Exoskeletons". See link: http://www.nydailynews.com/life-style/health/doctor-helps-parapalegics-walk-exoskeletons-article-1.1315915?print The article in question is typical superficial heart wrenching crap. Ann Spungen, lead researcher and MD gushes "In 22 years that I have been working in this field, its the most exciting intervention to come along". Apparently the exoskeleton is being studied at the James J. Peters VA Medical Center in the Bronx. Nine men and women who are paralyzed are involved. The VA is using the $60,000 Israeli  model called the "ReWalk". According to the Daily News the "ReWalk has been a "life-changer". I agree. The ReWalk could change lives but not for the reasons lauded. The VA and its researchers have far more modest goals. Funding provided by the National Institute for Health (NIH) is designed to demonstrate that the "exoskeleton walking device permits investigation of the potential benefits of frequent upright posture and walking on many of the secondary consequences of spinal cord injury. The exoskeleton is about walking within very strict parameters. The exoskeleton is being studied to perhaps alleviate the "extreme sedentary lifestyle from paralysis that contribute to many secondary medical problems such a diabetes and insulin resistance, obesity, constipation, poor blood pressure regulation, cardiovascular disease, reduced quality of life and more". 

Technically the headline of the Daily News article is correct. The ReWalk is helping paralyzed men and women walk again. This effort however has nothing to do with functional walking. Thus I find the story grossly misleading. The ReWalk is about walking as it relates to well-known complications associated with paralysis. This is not a sexy story but the reality of life with paralysis. I doubt people want to hear about how the bowel habits of the participants that have changed for the better.  Comments such as "I am no longer constantly constipated and my blood pressure is rock solid" does not sell newspapers.  What struck me though was the purpose of the study conducted by Ann Spungen: "the extreme sedentary lifestyle from paralysis". Why is the all important question here. Why do many paralyzed people experience secondary medical complications caused by an extreme sedentary lifestlye? I can think of much better approaches to this. Provide an extended rehabilitation experience. Do not discharge a person until they have firm control of their bladder and bowels. Be sure a person is aware of the complications associated with paralysis and knows what to do if something occurs.  Provide your typical paraplegic, male or female, with a state of the art and well fitted wheelchair. Design an exercise program for this person and expose them to a host of different adaptive sports programs. This is why I seethe when I read about the exoskeleton. Researchers are happy to shell out $60,000 on an exoskeleton. But the same researchers will never get to funding for a high end Panthera X wheelchair that costs $11,000. Forget about a handcycle for biking. They cost $3,000 and up. No sit ski either. These cost $4,000 and upwards. How about a racing wheelchair for exercise. No chance. Forget about a good wheelchair cushion to prevent pressure sores. These are too costly as well. And what about a job that requires a typical commute and empowers a paralyzed person?

Lets do a little basic math. Exoskeleton $60,000. This will require computer expert and multiple specialists in health care who earn a good living. Contrast this with a research program that after exposing a person to various outdoor activities will purchase the following: $11,000 wheelchair, $500 wheelchair cushion, a $5,000 handcycle, a $4,000 sit ski and most importantly a job training program that allows for an initially flexible schedule. Total material costs are a little over $20,000.  I would be willing to bet a newly paralyzed person that received this sort of support would thrive. I bet an extreme sedentary lifestyle would be unimaginable. The sort of program I suggested can change lives for the better after a spinal cord injury. Instead a questionable military based idea gets all the funding. This is the perfect storm of misplaced symbolism associated with walking, corporate spin, and profit, combined with our love affair with technology.

Here is what I envisioned two summers ago over a camp fire in the Red Woods outside of Santa Cruz. I will admit some drinking of adult beverages was involved. The men present at this campfire decided to form a club called Shit and Piss. If we could get every man and woman who was paralyzed to shit and piss with ease the world would be a better place. Classic lines were exchanged such as "Man, the way you manage your bladder sucks". Much laughter ensued. Better yet, there was an endless supply of duct tape. Joking aside, the vast majority of problems associated with paralysis can be mitigated. What is absent are the social and practical supports that make one's life possible. We people who experience a paralyzing injury do not need the exoskeleton. Our needs are more basic: a good long lasting wheelchair and cushion, affordable adaptive sport gear if desired, job training, transportation, and housing. With these typical needs in place an extreme sedentary life will be easily avoided.

9 comments:

Melanie Suzanne Gerber said...

Hi Bill,
You are so "right-on" with your latest post.
This Saturday night we were having dinner with my in-laws. They live in a very upscale Senior Living Facility. Many of the residents use canes, walkers or wheelchairs. My mother-in-law uses a walker and has severe dementia. The management has a new policy. Residents who cannot feed themselves independently cannot have their aid come into the dining room to help them since it makes the dining room unpleasant for the other residents. Instead, they now have to eat their meals in their rooms. The Residents who can eat independently complained that having the aids sit in the dining room and assist makes the dining room unpleasant. My father in law said that while he disagrees with the policy, the service in the dining room is better.
Instead, why couldn't the senior residence facility make accomodations for these residents so they are not isolated? Provide food that is pre-cut up or give them utencils they can use without assistance? What if he needed help but his mind was still sharp? And he wants to be with his wife, who has dementia but is able to feed herself? Who is more disabled?

Also at dinner, my father-in-law mentioned that he was at a Bar Mitzvah recently and the Bar Mitzvah boy used leg braces and his mother was in a wheelchair. He commented on what a sad life it is for that family to be stuck in a wheelchair.

My comment to him that your life does not ahve to be terrible if you are in a wheelchair. You still have your other faculties. As long as society gives you adequate access with ramps and other modifications, you should be able to have a productive life. Why should the person be isolated based on their limited ability?

The basic needs you listed at the end of your latest post left out one very important basic need.

The need for the paralyzed individual to be acccepted as an equal and not be isolated from the able bodied population.

Liz said...

Right on Bill.

Middle Child said...

"The men present at this campfire decided to form a club called Shit and Piss. If we could get every man and woman who was paralyzed to shit and piss with ease the world would be a better place. Classic lines were exchanged such as "Man, the way you manage your bladder sucks". Much laughter ensued. " am still laughing - this is spot on - after Don had a colostomy as he couldn't handle any more the two plus hours and unreliable result of bowel care in the morning - the colostomy made sense - people thought it was worse than what was happening but it gave Don certainty generally - cannot recall how often I would be sitting on the floor laughing so hard at some of our mishaps this way so hard that I couldn't get up, so hard that I couldn't hear Don laughing as he ran out of breath...taking care first of these sorts of needs must have importance above and beyond - and whats then left over then spend it on high tech - but ensure people NOW are mobile etc...

william Peace said...

Melanie, Your comment highlights what I have believed for a very long time: disability is a social malady. I find senior assisted living facilities often establish counter productive policies such as the ones you described. Social isolation can be deadly for the elderly. I for one think the care continuum facilities are the best way to age in place. Here I am thinking of the Kendal facilities. My mom lives at Kendal on Hudson and it is a wonderful place to live.
Middlechild, It did not take me long to dismiss bowel and urinary accidents as nothing more than a mess that needed to be cleaned up. However, for some people their life can revolve around bowel and bladder issues. I always tell people it takes time, in some cases years, for the body to adjust post SCI. Those first years post injury are very hard as you know.

Melanie Suzanne Gerber said...

Bill - They live at The Atria in Rye Brook. Good to know about Kendal on Hudson.

Let's make plans to get together!! It's been too long!!

Elizabeth McClung said...

I agree that the expectations of many regarding the ReWalk from those outside the user/medical community are highly skewed. And I also agree that more choices for all those who are wheelchair users along with funding would be great. The article (I followed your link) did focus on secondary issues, bowels, muscle wastage and BP. I was also happy to see it highlight the range of users from SCI to neuromuscular diseases.

I think that ReWalk, particularly with the vets surviving but having injuries at a rate of 10-1 or 20-1 instead of previous wars at 4-1 or 5-1 means ReWalk's price could come down dramatically. Hopefully it would be one of many items that would be possible, in term of choice. There are times I would want to use a handcycle, and times I would want to use a third wheel attach instead, and times, if it were available, to use a ReWalk.

I think one thing you emphasis is that wheelchair users come in the same diversity as non-users. And there are a lot of able bodied people with multiple pairs of hiking boots, running shoes and a bicycle who still have a sedentary lifestyle - it just doesn't cause impaction in their case.

I don't think ReWalk should be seen as the holy grail path back to 'normal' - but I don't see why, if it is possible to use, why someone can't enjoy walking either. I'd never use ReWalk to go hiking, or on the Galloping Goose (a bike/jog trail through the city connecting wetland and rivers) but it would be fun to use it as an alternative to explore the streets or coast from a different height.

As for tech support - getting manual techs is almost impossible here, as the senior population makes electric wheelchairs the priority, so most basic stuff is done at the bike store, or not at all. Just pointing out that it would face the same problems as all assistive tech - if it was over at Strong SCI rehab, you could use it and join the handcycle program, and join the wheelchair competitive racing, etc OR live anywhere else in this province the size of Washington to Mexico and be lucky to travel five hours to get a tune up by someone in 'training'.

In a nutshell: it is a mechanical tool and the uses and costs will shake out - I have no desire to wish it away simply because much of what it does CAN be done now - much of what a magnesium wheelchair does CAN be done by a 18the century board with 3 inch wheels and two handled iron weights to use to move it about - but I am glad of the variety of choices available (And tell everyone I see using a transfer chair as a mobility device that it doesn't have to be so; upgrade to an A4 for $200)

william Peace said...

Elizabeth, Yikes it's a miracle. We are on same page so to speak and I am in agreement with your comments. The exoskeleton could have some therapeutic value. At issue is cost. I suspect the benefits desired with the rewalk could be accomplished by a host of different physical exercises or activity in adaptive sports. I just despise the way the rewalk is marketed as a miracle cure. The marketing is based on the premise using a wheelchair is inherently bad.

indeago said...

I like your article, but feel you're a little too focused on the now vs. what will be in the future. Believing and speaking in impossibilities is what makes things possible. Much of what we have today is thanks to the creative mind, engineers, Hollywood, but most importantly our conscious and unconscious voice. As individuals and as a collective mind we bring the things we think and speak into existence.

Humanity has made great strides with technology in just the past 30 years. Computer chips are getting ultra micro with a vast amount of processing power. A computer the size of an excavator 30 years ago now has the same processing power as a computer the size of a pinhead. 3D printing technology has seen great leaps more recently. Human organs and tissues are now being grown in labs. Today's generation is entering the realm of post humanism. Technology is becoming an attachment of our being: iPhone, Google Glass, soon to be contact lenses, and let’s not forget neural implants. We’ll soon have technology that allows us to implant neural bionic chips. The day will come when we’re able to download and learn languages in a matter of days. The exoskeleton is just another extension of these. It too will get smaller, more efficient, and eventually lead to an implantable variation connected to the brain synapses allowing handicapped individuals to walk again.

ReWalk, Ekso, and Cyberdyne are pioneering the exoskeleton technology and what they have built is merely a rough concept when looking at the greater picture. Media touting hype and fiction may seem nonsensical and demeaning, but images of Iron Man, Matrix, Terminator and headlines of “handicapped can walk again”, will in fact get us there quicker.

william Peace said...

Indeago, You are correct about technology. It has enhanced the lives of all people, those with and without disability. Yes, I have a particular focus. Civil rights for people with a disability. To me, it is a matter of social justice. While I am hardly alone in my scholarship and advocacy, I am out numbered by those hawking a cure to SCI. Rehab has become a cash cow that sells the idea of walking as a big idea. Walking is a means of navigating the world. We were meant to be bipedal. But when bipedal ambulation is no longer possible using a wheelchair is an empowering piece of technology that should be valued not denigrated. I am not opposed to technology like the exoskeleton. It could have benefits. I just have no interest in it personally and more generally think it is being packaged in a way that is inherently misleading.