John Hockenberry: The next Braniacs

[Wise Young]

http://www.wired.com/wired/archive/9.08/assist_pr.html

This is a long article but I think that the following quote from the article might get some juices going...

Dubbed "the Cure" by its passionate supporters, savvy marketers, and fundraisers, this vision of spinal cord repair has a much higher profile and is far better financed than FES and other alternative-interface explorations. The Cure has Christopher Reeve as its cash-gushing poster boy. FES has Jim Jatich. Cortical implant technology has Johnny Ray. Certainly, anyone who wakes up with a spinal cord injury is inclined to hope for a cure above all other options. But one would expect medical research strategies to be more detached from the emotional trauma of disability. As someone who has lived in a wheelchair comfortably for a quarter century, it is hard to justify why the Cure would be so favored over its alternatives.

[Jeff]

...I can to disparage John Hockenberry so I guess I'll start, LOL. I'm not sure why he's so comfortable in his wheelchair. Definitely a form of mental illness. We should all try to be as happy as possible but to not want a cure is insane.

Beyond that, though, is his complete insensitivity toward cervical injuries. His comfort level is no comfort at all to those who are dependent on others for even their most basic needs, like eating and even breathing.

Someone should slap that guy, really hard.

[cass]

I liked the article. I saw no insensitivity to cervical injuries. One person he cited has absolutely no movement and another is a quad.

His perspective on the brain/body relationship is very good; a unique one that had not occurred to me.

[Rick1]

Hockenberry's usual condescending tone comes through loud and clear. Personally, I plan to exceed his comfort level.

[This message was edited by Rick on August 30, 2001 at 08:57 AM.]

[jenpenko]

Ok, I just need to reply to this one. I'm the women "a la Titanic" with the FES standing system mentioned in John Hockenberry's article.

Do I want to be in this chair forever? no...am I going to stop my life because I am in it? no. Am I going to sit around and let my body deteriorate until we find a cure? no.

I don't believe that there is a magic little pill or surgery that will magically get me walking again. However, I do envision "cure" on the horizon. Basic research to heal the spinal cord is essential, but there also needs to be funding for the therapeutic methods to get the body functioning again. Some of the FES systems maybe solutions for the therapeutic side of the equation.
FES systems help to keep the body and muscles healthy, provide additional function, and help combat secondary complications of SCI. Is it the cure-all? no. Is the technology pretty cool..sure...and it wets the appetites of those techies out there with visions of the bionic woman.

[bilby]

Jeff- I agree with you, he needs a kick too.

If he reads here, this is for him ..!.. enjoy it!!!

bill

[Shaun]

The guy makes me laugh,he cant seem to understand that not everybody wants to be a happy,shining gimp.I get up everyday smile and head out the door to kicks the worlds ass only because theres a chance i might be able to dance neked in the forest again,i'll be it a small chance but i'll take it over nothing..
.........\/PEACE
~Shaun~

[cass]

something tells me most ppl are not really reading this article. i dunno, maybe it's cause i'm an engineer, but i just reread it and he isn't promoting remaining a "gimp." he's talking about advanced technology, cortical implants, FES possibly being interfaced with that, etc. etc. he's talking about technology that can provide a new brain/body interface that exists right now.

this isn't anti-cure, it's fascinating stuff.

[firewheels]

http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif C'mon, guys, Hockenberry isn't disparaging anyone, just encouraging us to think outside of the box a bit. I myself agree with him - take what you can to do what you can. Hope for the moon, sure, but don't let it stop you from living in the meanwhile. I'm speaking as a - what, let me count, I forgot - 36-yr post. They've been hellishly difficult (admittedly, not as difficult as the years of some others), but also lots of fun. - fw

[Wise Young]

Cass, I did not know that you are an engineer. That is great. I agree with you and Firewheel that there is great promise in the brain-electronic interface technology being developed. For example, John believes (and I agree with him) that the ibot is a ingenious device. Every time I watch my 18-year old son play a computer game, I am amazed by how a few buttons (no more than 10) can achieve such incredibly complex and natural movements of the figures on the screen. An expert pilot becomes one with his jet fighter. When we drive our cars, motorcycles, bicycles (or wheelchairs), the vehicles become extensions of our body and we can achieve incredible precision at very high speeds. Thus, it is conceivable that by placing a few input and output channels into and out of the brain, we can project our powerful brains into machines that can achieve far more than our relatively weak bodies. We are doing this every day with our computers. I totally agree with John, you, and firewheel that the technology has great potential to improve quality of life of people with spinal cord injury. I support such technology wholeheartedly both in words and deeds.

I disagree, however, with John Hockenberry's belief that somehow these interfaces and technologies are receiving short shrift relative to "cure" research. Brain-computer interface research is heavily funded by many government agencies, including the department of defense, NASA, NSF, NIDRR, NIH, ATP program of the NIST. It receive millions of dollars of funding from many major companies, including IBM, Microsoft, Intel, and other companies. Likewise, FES is a thriving multi-billion-dollar industry. At last count, there are well over 100 companies providing electrical stimulation devices of various types, aimed at many many applications. FES research has been heavily funded at many VA centers, rehabilitation, and other institutions for nearly half a century. A whole Division of NIH is devoted to developing better technology for electrical stimulation of the nervous system and muscles. I am a member of the Council of the National Institute of Child Health and Development and can tell you that this Institute's billion dollar budget spends far more on high tech prosthetics and electronic devices aimed at improving brain-computer-device interfaces than on biological solutions to disability. Assistive technology is a multi-billion industry fueled by government funding.

In contrast, the total investment into the so-called "cure" research is miniscule by comparison. At the present, the total public, private, and industry investment in biological solutions to the spinal cord injury problem is less than $100 million, a tiny fraction of the amount that is being spent on assistive technology being developed to improve the quality of life of people with spinal cord injury. In fact, in the trial forum, I have not had the time to list all the clinical trials that are evaluating assitive technologies, as illustrated by a brief perusal of rehab trials in the U.S. http://www.rehabtrials.org/Trials/trial_list.shtml

I admire and respect John Hockenberry, for his independence and sharp views on the world. However, his derogatory comments concerning Christopher Reeve and "cure" research are inappropriate. As some of you on these forums know, it requires more than backbreaking work (pun intended) to raise millions for research. It requires intelligence, great media savvy, and courage. I have never heard Christopher call anybody else names or disparage their role or contribution to the field. In fact, I have never heard anything but praise and support for non-cure research from Christopher. He has reserved his energy and ire for the true enemies of the spinal cord injury community, ignorant people who are real obstacles to research. I have never heard Christopher criticize a fellow member of the spinal cord injury community even though many attacked him unmercilously because he chose to express his vision of a cure. It is sad that this kind of misinformed backbiting is going on in our community.

Wise.

[cass]

I agree with everything you say, Dr. Young. Unf., the Dept. of Defense (with whom I am fairly familiar, having worked on a top secret project for years) only have eyes for this technology because of their own interests.

And yes, certainly a point should be made w/o a whipping boy. Unf., C. Reeve has become just that. It is unfair, unfortunate, etc. A fallout of his celebrity status. I, personally, hope he never sees the stuff I've seen written about him. Not only unfair, much is cruel.

If only we could fund everything, huh? It never works out right for everyone. I would give anything for a cure, but see so many suffering now who current technology can help, but they can't afford it. Not this cyber stuff, but w/c vans, environmental controls, etc. It makes me sick. Yes, I am an engineer, an aerospace engineer. And I know the joystick driving control was designed in the 60's for the lunar rover. Some of the engineers liked it so much, they installed it in their vehicles. Yet, all these years later, how many ppl who really need it can afford it? Makes me sick.

But I can't help but be impressed by the technology, even if it is out of reach. Wish I could work on that rather than airplanes.

[Scorpion]

First, I'd like to respond to the posts in this thread: We can't expect everyone to be a "Dr. Young" and we can't expect everyone to fund the route to a 'cure' we believe in. Hell, we can't expect everyone to fund SCI research when people are affected every day by a myriad of other ailments. I may not agree with everything Hockenberry says or believes, and I question why he wouldn't want a 'cure,' but I don't see that he's given me any reason to hate him, or even slap the guy. (Though he might at some point--even those I love make me want to slap them sometimes.) I guess my point is, it bugs me when a guy gets branded an asshole and a detriment to the 'SCI Community' simply because he has a different way of looking at things. People feeling sorry for us hasn't made them fund SCI research, why would a guy wbo claims to be happy despite his SCI take any funding away from SCI research? And again, the idea that we can help people NOW is blasted? I have a piece of shit van that could die tomorrow, and I'd be screwed because I can't just go buy a car and drive that. My buddy who's a C-4 is fighting a pressure sore he'll need surgery for because there needs to be a better cushion designed for high quads who can't get pressure relief enough NOW--his ass can't wait years for a cure. I love my manual chair, but I'd love an iBot to go 'hiking' in the dense woods and to climb stairs safely at a friend's deck at a backyard barbeque, and maybe hit the beach with ease instead of not going since my accident, etc. Why should we insist inventors and scientists all focus on one idea when human nature dictates that we all have different 'walks' in life? I'm an artist. Must I only create art that deals with SCI or benefits 'cure' research?

OK, Now, I'll go read the article and respond to that.

~Rus

[craig]

I think it has taken too much money to get this far as described by hockenberry. To maintain the advancements will be expensive. To continue to do more research following this logic will be even more costly. As dr Young points out they have spent billions getting this far.

Why can't i controll my bladder/bowls etc. after 21+ years of quadriplegia. Why is there so little research going on in that field ? It is so basic and cost a lot for supplys. If doctors/scientist can do all the things talked about in this article why can't I take a leak by myself ?

i like hockenberry generally and he points out a lot in this article i did not know about, but at what cost financially to us the disabled?

I believe the research money could go to more productive research.

[This message was edited by craig on August 31, 2001 at 10:18 AM.]

[Wise Young]

Cass, I agree wholeheartedly. Until the ibot, the power wheelchairs and FES devices were operated by 1970's control circuitry that were less sophisticated than an Apple IIe computer but costed much more. A cell phone that we can get from $100 has more functionality than the most sophisticated FES device available on the market today.

Part of the problem was that none of the "big" players have committed to assistive technology. In fact, most of the companies that developed assistive devices were small businesses. However, there are now two big companies that have started to invest: Johnson & Johnson, and Medtronics. These two companies are respectively driving the fields in mobility and stimulation devices.

It is interesting how the ibot, even though it has not been released yet, is beginning to have imitators, particularly by European power wheelchair developers. Paradoxically, U.S. although it is the richest health care market in the world, has severely limited development of sophisticated devices by imposing very high hurdles on approvals of devices for insurance coverage. Swiss, German, and Japanese wheelchair technology is more advanced than U.S. because their insurance system places fewer medical necessity restrictions on payments for high-end devices.

I don't know if you have ever been to Japan but the average home toilet there has amenities that would make the American toilet weep in shame. Many home bathrooms have toilets that boast of soft warm wide seats with a built-in butt washers and dryers. Many Japanese cars made for their domestic markets have voice command systems and a soothing female voice to tell you what is going on with devices in the car. Such technologies are usually not exported from Japan to the U.S. because of the perception that Americans like it rough and tough.

In the end, I think that Detroit and the automobile industry should get into this arena. The population of the United States is graying by leaps and bounds. Within 20 years, over 25% of the U.S. population will be over age 60. This segment of the population really needs "smart" vehicles that are easier to manuever, that can automatically park vehicles, that provide sensors to substitute for failing retinas, autodrive mechanisms can take over when people fall asleep at the wheel, and where most of the functions can be voice-commanded. Such technology can be easily adapted and migrated to help disabled people function more independently.

Likewise, inexpensive technology exists today for complete wireless and even voice control of household devices. Manufacturers should begin routinely designing wireless remote and voice-command capability for microwaves, stoves, refrigerators, blenders, washing machines, dryers, lighting systems, doors, toilets, and showers, etc. Such systems would not only be easier for the aged, the disabled, and children to operate but safety systems can be built in to prevent accidents.

When we built our Center here at Rutgers, I had hoped to set up a laboratory that can be used efficiently by quadriplegic scientists. Voice-commanded elevators and doors are not only prohibitively expensive but poorly designed. Scientific equipment companies are in the dark ages when it comes to making accessible scientific instruments. They all assume that scientists can stand and operate devices manually. Power switches are usually placed in inaccessible locations behind the instruments. Microscopes don't allow adjustments of the oculars so that a wheelchair user can look into them. Devices are frequently designed so that one has to have substantial hand strength or dexterity to operate them.

Laboratory robotics is now becoming very popular and reasonably priced. As it turns out, they are real god-sends when it comes to reducing the manual labor in the laboratory. For example, we recently invested in a laboratory robot that does large-scale automatic pipetting of liquids. This robot can achieve in a week what use to take a team of five people over 3 months to accomplish and with much lower error rates. Likewise, we recently acquired a automatic slide processor that can carry out unattended staining routines on microscope slides that use to require a skilled technician many hours of manual labor.

We can and must harness larger market applications to drive development of technology that benefit people with disability. Incidentally, in your example of the joystick technology, why not adapt the computer game controllers? They are all now USB driven and it should be relatively inexpensive to adapt them to controlling all sorts of vehicles and devices.

Wise.

[This message was edited by Wise Young on August 31, 2001 at 10:51 AM.]

[Sue Pendleton]

I don't have the papers anymore because of storage problems,but when I was researching what was being done in Maryland I found a surprise. NIH for a couple of years was funding technology advancements a the Johns Hopkins Applied Physics Lab. The grant papers specifically specified it was for high level quadriplegics. Maybe this was where the gyroscopes came from. APL as the lab is known in these parts is normally into much bigger things that Cass may know more about but for an idea they did most of the work on the Hubble Telescope. I do't know if they continue to work on assistive tech for the disabled but we should get more than rocks from our space programs and NIH grants help bring about Earthly applications.

I understand what Hockenberry is getting at and the implications are rather unsettling. I mean it's great when technology allows someone "locked in" the ability to communicate; but, I really get squeamish when I think of bionic people or android type people running around.

[Scorpion]

Sue, I'd rather have a biological 'cure', but when you say you get squeemish, do you also mean people with artificial limbs make you squeemish? People with pacemakers? Technology will be more integrated into biology as time goes by, and in some cases, it may be the most effecient and cost-effective way to addreess some problems. Will we become 'cyborgs'? Who knows, but technology will be advanced with or without the help of the NIH simply because there's money in it even if it's applied to something other than its original intention.

~Rus

[cass]

Originally posted by Sue Pendleton:

I do't know if they continue to work on assistive tech for the disabled but we should get more than rocks from our space programs and NIH grants help bring about Earthly applications.



Sue,

If you feel all we have gotten from the space program is rocks, I suggest you look at this site:
http://technology.jsc.nasa.gov/techstory.html
Most people are unaware of just how much the space program has impacted and improved their lives.
Here is just one article you'll find on that site that directly relates to PWD:

A foam material developed by NASA researchers to cushion pilots against the
rigors of test flight, and currently in use aboard the Space Shuttles, is now being
successfully sold in pillows and mattresses by a Lexington, KY, company to to
treat disorders ranging from sleeplessness to the more severe illness of
pressure ulcers, commonly known as bedsores.

Tempur-Pedic's products have been cited by the U.S. Department of Veterans
Affairs as "very effective for the treatment and prevention" of bedsores and "very
comfortable" to patients. Both the Veterans Affairs Department and the National
Institutes of Health have purchased hundreds of Tempur-Pedic products for use in
their pain management and ulcer treatment programs. Bedsores, which can be fatal
if left untreated, cost the Medicare and Medicaid programs almost $2 billion
annually for treatment of wheelchair-bound, nursing home and hospital patients.

The one millionth pillow produced by the company, Tempur Pedic, will be
presented by its CEO, Robert Trussell, to NASA Administrator Daniel S. Goldin,
on Wednesday, May 6, at 5 p.m. EDT in the NASA Headquarters Auditorium,
300 E Street, SW, Washington, DC.

Administrator Goldin said, "This NASA technology designed to protect astronauts
and pilots is now being used to help the elderly, the disabled and hospital patients.
NASA is deeply committed to transferring our unique knowledge to improve the
quality of life for all Americans." Tempur-Pedic's Trussell added, "We have taken
NASA's space-age material and developed it into 'body-friendly' bedding, which
distributes pressure more evenly throughout the spine, joints and other parts of the
body."

Tempur-Pedic's pillows, mattresses and other products made from Temper Foam
have billions of self-ventilating memory molecules that slowly react to body heat
and weight. It was first developed by NASA's Ames Research Center, Moffett
Field, CA, for use in aircraft test-pilot seats and to protect airline passengers in
crashes. Temper Foam was recently inducted into the United States Space
Foundation's Space Technology Hall of Fame, Colorado Springs, CO

A few more examples from the NASA database:

Astronauts working on the surface of the moon had to wear liquid-cooled garments under their space suits as protection
from lunar temperatures which sometimes reach 250 degrees Fahrenheit. Fifteen year-old Karen MacKenzie was
confined to bed or ice baths for several years due to a disease known as "burning limb syndrome." Disease causes
severe pain in the limbs and only cooling brings relief. By request of Karen's physician at Geisinger Medical Center, a
NASA Ames team designed a pump chilling system which circulates cool water through a garment wrapped around
Karen's thighs. Cooling garment relieves Karen of pain and prevents further tissue deterioration. Attached to a
wheelchair, system gives Karen the mobility she was so long denied.

Accutron Tool & Instrument Co.'s wheelchair was designed to increase mobility within the airplane. Utilizing NASA's
structural analysis and materials engineering technologies, it allows passage through narrow airline aisles to move
passengers to their seats and give access to lavatories. Stable, durable, comfortable and easy to handle, it's made of
composite materials weighing only 17 pounds, yet is able to support a 200 pound person. Folded easily and stored
when not in use.

Because quadriplegics are unable to perspire below the level of spinal injury, they cannot tolerate heat stress. A cooling
vest developed by Ames Research Center and Upjohn Company allows them to participate in outdoor activities. The
vest is an adaptation of Ames technology for thermal control garments used to remove excess body heat of astronauts.
The vest consists of a series of corrugated channels through which cooled water circulates. Its two outer layers are
urethane-coated nylon, and there is an inner layer which incorporates the corrugated channels. It can be worn as a
backpack or affixed to a wheelchair. The unit includes a rechargeable battery, mini-pump, two quart reservoir and
heat sink to cool the water.

Under a Goddard Space Flight Center contract, Electrologic of America was able to refine the process of densely
packing circuitry on personal computer boards, providing significant contributions to the closed-loop systems for the
Remote Manipulator System Simulator. The microcircuitry work was then applied to the StimMaster FES Ergometer,
an excercise device used to stimulate muscles suffering from paralysis. The electrical stimulation equipment was
developed exclusively for V-Care Health Systems, Inc.

ok, ok....i'll stop http://sci.rutgers.edu/forum/images/smilies/biggrin.gif sorry, but this is one of my pet peeves.. http://sci.rutgers.edu/forum/images/smilies/tongue.gif

[This message was edited by cass on August 31, 2001 at 04:16 PM.]

[melliska]

good points about fes, jen. i think most of the people here have read or know about the many benefits of it. now if i can only get my hands on one of those fes bikes...

good information, cass. i will have to show it to tom. he drools over popular science so this will be right up his alley.

my main problem with considering anything hockenberry has to say is that he won't listen to the other side of the sci spectrum. he has badmouthed christopher reeve for putting most of his effort toward "cure" fund raising, but he concentrates on "care" himself. cr's organization actually does give money to more "care" related ideas, but all hockenberry does about the "cure" is bash it. both sides are important but "care" receives much more $$$$ so he shouldn't complain about the much smaller percentage that goes to "cure". i doubt that when a cure is found hockenberry will turn it down. ok, i'm done with my "hock-a-loogie" rant for today. i am sure he has some worthwhile ideas, i just wish he could see where other people are coming from.

Life is a lesson you learn when you're through.

[Sue Pendleton]

No, I don't get sqeamish around people with artificial limbs. But I really don't want to see real artificial intelligence integrated in humans just yet.

I realize there is more to the space program, Cass. A company I used to work for made the foams that went into test fighters for the navy and inside the space shuttle seats and were fire resistant. That type of foam and open cell foams have, like the mattress and pillow you mention also are used in many medical applications. And we also were the first to go environmental using starch based styrene like foams for packaging. These are now being played with to make disposable mattresses for infectious disease control.

My pet peeve are those who think that military medicine is about building better bad bug vaccines. The military funds and does a ton of research into head injuries to include prevention and SCI and regeneration. One lab is currently working with OEGs. Another billion or more dollars annually funds military doctors and researchers in prostate, breast and cancers of the lymph system.

And the PM&R clinic at Walter Reed is in a multi year study of all the uses of accupuncture in acute and chronic injuries and the cost of it versus convential medicine at almost every point in the body.

We are probably one of the few countries that have specific departments to share government funded technology with private sector entrepeneurs and public companies.

[Wise Young]

Hey, I am just listening to All Things Considered on NPR and Linda Wertheimer was interviewing John Hockenberry and his wife (Allison Craig-Lowe Hockenberry), being interviewed about their TWO sets of twins... (3 year old set and one set just this summer). It is an absolutely wonderful interview.

I think that it is our John Hockenberry. They don't mention his spinal cord injury but it is his voice. His wife is a network producer.

Wise.

[firewheels]

Originally posted by Sue Pendleton:

I really get squeamish when I think of bionic people or android type people running around.

Hey, what's with this species-ism http://sci.rutgers.edu/forum/images/smilies/confused.gif Take me to your leader, I want to register a protest http://sci.rutgers.edu/forum/images/smilies/mad.gif - fw

[firewheels]

Originally posted by craig:

Why can't i controll my bladder/bowls etc. after 21+ years of quadriplegia.

I have a theory about the situation at least as concerns bladder control. Catherization turns out to be a simple solution from the standpoint of the medical community, and we disabled are a captive market for the catheter manufacturers. So as long as bladder dysfunction is no longer immediately life-threatening (as it was in the early days), there's no incentive to search for more complex solutions which would improve only our "lifestyle," as they might put it. - fw

[Wise Young]

Sue's squeemishness about bionic body parts is not unusual. In my experience, a large minority of people with spinal cord injury just don't want to consider anything that would put them in the hospital or invade into their bodies.

Craig and FW, there are actually huge variety of technological solutions to paralyzed bladders, many with proven efficacy. These include suprapubic catheters, ileal conduits, dozens of procedures for sphincterotomies, artificial sphincters, and at least half a dozen internal and external electrical and magnetic stimulation devices for the bladder. There is no dearth of technology. Curiouy, clinicans and consumer demand for such technologies have been limited.

Wise.

[cass]

yep, Dr. Young, I agree. I sure don't want any surgery or messing with my body. I'm already afraid more will happen to me, why would I go in the hospital for augmentation type surgery unless I had major probs?

As far as bionic "squeamishness" that doesn't bother me, but hey....I am part engineer already... http://sci.rutgers.edu/forum/images/smilies/biggrin.gif so guess I'm halfway there...

[Sue Pendleton]

I'm not anti-surgery but because my SCI was non-traumatic I expect real progress from anything invasive and not some gadget that gets around the symptoms but never fixes the actual problem. As an example I have spoken to many urologists about the belly button cath and how it allows a person (especially women) to cath themselves. But I have only foud one neuro-urologist who says he'll do it without augmenting the bladder with a section from the bowel. Now if your bowels aren't messed up this operation alone may mess them up. And he is also the first to explain that bowel tissue will continue to make mucous type material that can lead to a more suitable environment for infections or other problems.

But if someone wants to insert some regenerating material or something that makes the cord more responsive to self regeneration? Get the scapel and open me up! My only problem here is all the restrictions the FDA is currently putting on the Diacrin volunteers and I think those will be loosened up once all the results are in from the phase 1 and 2 subjects.

I do not see the use of implanted electrodes into every muscle of my legs to be a solution though. I have too much sensation that would have to be overridden to make something like that work. In simpler areas like the closing of the hand I can definitely see a better quality of life factor and can't imagine some older injuries not jumping on the ability to have the Freehand system implanted.

And speciesism? Be real. An android is not a species, it is a machine. And if they do windows I want one. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

[Scorpion]

Sue, that makes perfect sense to me. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~Rus