S U P E R N O V A - R e h a b

Nintendo Wii: a NEW era in Accessibility for children with disabilities

ROBOT SUIT for the DISABLED

Within the next 20 years, we might have robot suits for people with paralysis instead of standers, walkers and wheelchairs... This will tide us over until the development of nerve and muscle regeneration, which still seems farther away than that...

The HAL-5 Robot suit allows its wearer to walk with enhanced power, controlled by surface EMG on the operator's muscles. For somebody with paralysis, the control mechanism would be based on other muscle groups or signaling, but with modern computing power, even direct control of the joints could be programmed into the suit, so that the wearer would only have to choose direction and pace... let the finer calculations be done by the computer.

The suit is named HAL and the company is called CYBERDYNE, which is a little ironic, since HAL is a  computer that murdered all the astronauts in 2001: A SPACE ODYSSEY, and CYBERDYNE is the computer company that develops the SKYNET and the TERMINATORS (and kills almost all of mankind) in the TERMINATOR movies.

Still, cybernetics is advancing at a fantastic rate. If it becomes a popular consumer technology, it will filter down into medical applications and allow us to help more people cheaply. I for one am excited.

Botox in CP

CEREBRAL PALSY

What is cerebral palsy? Cerebral palsy is something I spend much of my time helping people with.

Cerebral Palsy is condition in which a person has motor impairments due to acquired brain dysfunction occurring during brain development. This window of time includes prenatal, perinatal, and the first 1-2 years of life. One of the most important features of cerebral palsy is that the brain dysfunction is non-progressive. Thus, throughout childhood, a person with cerebral palsy acquires new skills & milestones constantly.

Because the primary condition is non-progressive, if a child is moving their arms well at 1 year, that child will almost certainly be moving their arms better than that when they are 10 years old, 18, or 35. This is an important point of emphasis I always make (and repeat) for parents, because once the words “cerebral palsy” are spoken, they may not pay attention to another word from my mouth.

The image that comes to most people’s (even most doctors’ ) minds when thinking of cerebral palsy is a person who is totally dependent on caregivers, with arms flexed, legs flexed awkwardly, contractured club feet, mouth open, unintelligible speech, severe cognitive impairments,

“spastic”…

…this stereotype is not really an accurate one.

A child with cerebral palsy may often be intelligent, well spoken, good looking, able to walk independently (sometimes awkwardly), or even strong and gifted.  Every child with cerebral palsy is unique and I like to look with an eye on a person’s unique potential and not just a prognosis based on diagnosis. As a pediatric physiatrist, my job is to identify what some of that potential is, support that, and then give the the child a chance to show us what he can do.

And in those less common cases where a person has severe spastic quadriplegia… that person often has more awareness than is obvious at first. A very common complaint that I get from parents of children with quadriplegic Cerebral Palsy is that when they were in the hospital or office visit, doctors, nurses and students rarely said ‘Hi’ or really engaged the child in conversation. They just talked to the parents and ignored the child. This disheartening experience can easily be avoided simply by making a habit of saying ‘Hello’ to all our patients, especially the child that doesn’t look like he/she can return the greeting. There’s much to gain, by saying hello to the people who can’t talk back.

SPASTICITY & BOTOX

Spasticity is the most common movement disorder seen in cerebral palsy. It is a disorder of movement involving stiff muscles, exaggerated deep tendon reflexes, and characterized by velocity dependent resistance to passive stretch. Management of spasticity may include the following:

1. Passive stretch of muscles, to prevent contractures and temporarily reduces tone. Therapy and/or home exercise program.
2. Proper positioning (seating, flexion to break the pattern) and orthotic management.
3. Oral medications include Baclofen, Benzodiazepines, Dantrium, Clonidine, and Zanaflex, for mild to moderate, global reductions in generalized spasticity.
4. Neurolytic agents such as Phenol, and particularly Botox  for injection are very used for local spasticity reduction.
5. In more systemic and severe cases of spasticity, invasive procedures such as tendon surgery, dorsal rhizotomy, or intrathecal baclofen pump may be helpful.

Botox (Botulinum Toxin A), a medication derived from Clostridium Botulinum, acts at the presynaptic neuromuscular junction, to prevent release of acetylcholine. It binds irreversibly, causing partial muscle paralysis locally, but over 3-6 months time, the effect wears off as the presynaptic junction produces new receptors.

Treatment of limb spasticity in children with cerebral palsy is currently an “off-label” usage, but both literature and clinical experience strongly support its efficacy and safety in this patient population, when administered by a skilled professional. Botox locally reduces the strength a spastic muscle, effectively resulting in a less spastic, weaker muscle. If the correct combination of muscles are chosen, in conjunction with stretching & positioning, this can result in functional benefits for the patient, including improved range of motion, reduced pain, and improved mobility and activities of daily living.

FUNCTIONAL GOALS

Reduction of spasticity does not, in and of itself, constitute a functional goal. An improvement in something the patient wants to do is a functional goal. The entire topic of functional goals is the heart of rehabilitation medicine, and all this article is too short to cover the myriad possible goals. However, to illustrate, here are two hypothetical cases, similar to patients I’ve seen in the past for spasticity.

CASE 1:

2 ½  year old girl with mild spastic diplegic cerebral palsy. She walks independently with a walker and bilateral AFO braces, and is trying to learn to walk with just forearm crutches. Examination of her gait reveals a strong tendency to scissor or cross her legs, making forward progression difficult, especially with crutches. She is also significantly crouched and bent at the knees which further increases energy requirements to walk.

After careful evaluation, I injected her hamstrings and adductor muscles with Botox, bilaterally, followed by a brief increase in frequency of physical therapy program to increase range of motion at hamstrings and adductors, with home program, and continue gait training. Within a month, she had clearly improved velocity, had a more upright gait, and was using less effort. The crutches also give her more independence than she had with the walker, and it’s hoped in the future, independence without crutches.

CASE 2:

16 year old boy with spastic right hemiplegic cerebral palsy. He is ambulatory at a community level, but walks with a fairly awkward limp even in an AFO brace, dragging his right foot, with his right arm flexed at the elbow and his hand in a fist. He is independent in self care, is a straight A student, and lifts weights intensely, to the point that he is on the JV wrestling team for his high school. His spasticity is quite severe through his right side. He complains of an inability to open his hand, so he has trouble gripping people in his wrestling matches.

After discussion with the patient, I injected Botox to his finger flexors and wrist flexors (forearm flexor compartment) of the right arm, followed by an aggressive, brief physical therapy program for stretching his flexor tendons. This allows him to be able to open his hand considerably more, and after a few weeks, he is able to grab opponents with his hands and be more effective wrestling. I chose not to inject his leg, because the AFO controls his ankle position fairly well, and he moves the entire leg very stiffly, plus a mild improvement in his gait is not of interest to him at this time (though it may be in the future).

SUMMARY

Botox is one of the many tools in the arsenal of the physiatrist for helping to maximize function in cerebral palsy, and the most effective way to do this is with careful choice of muscles by an experienced professional, based on detailed functional assessment of each person’s unique personal abilities and goals, which vary widely in C.P.

It's a way to help with motor abilities, which in turn, can help with more important aspects of a child's potential, like social competence, self confidence, which are really the most vital things for personal and professional success & happiness in the setting of C.P.

Vent Camp FAQ

What is Vent Camp?
How can vent-dependent children participate in camp?
What activities are available?
Where is Vent Camp?
Who is Mary Dekeon?
When is Vent Camp?
Do I need "medical" knowledge to volunteer?
How do I sign up as a volunteer?
How do I become a camper?
Do volunteers get paid?
Where does Vent Camp get it's funding?

What is Vent Camp?
  "Vent Camp", aka "Trail's Edge Camp", is a summer camp for children with special needs-- specifically, children who are ventilator-dependent. The children served by Vent Camp have a multitude of medical diagnoses, ranging from Muscular Dystrophy to Spinal Cord Injury to Central Hypoventilation. Vent camp provides activities they couldn't participate in with more traditional summer camps. It's an environment where kids who are technology dependent can be just "kids" again.

How can vent-dependent children participate in camp?
  The children who are ventilator dependent have a wide variety of abilities and disabilities. Some require ventilators and attendant care 24 hours a day, while others need ventilators at night only. Some have tracheostomies (a tube in their neck to breathe), while others can be ventilated with masks. Some children walk or run, while others might be unable to move their arms or legs and need to propel themselves with motorized wheelchairs. All the campers are able to enjoy as many activities as possible, within the limits of safety. All the campers are able to participate in camp because of a modified environment (paved trails, specialized equipment, cabins with power & generators, etc.) and the hard work volunteers (Usually, there are 3x as many volunteers as there are campers). Each camper has a volunteer assigned exclusively to him/her, and there are many experienced "cabin leaders" who assist them during the day and medically monitor the children at night. Volunteer "partners" are the most important part of making camp happen and many of them have no prior medical training.

What activities are available?
  You can peruse the picture galleries to see some of the activities that are available. Because the children at Vent Camp are all so different and unique, there are many different activities geared towards different abilities. There are crafts, playground equipment, horseback riding (with "back-rider" and without), boat rides, swimming, fishing (with specialized electronic fishing poles or without), nature hikes (fully paved trails through all the woods), and even a massive wheelchair soccer game using an "earthball". Within the limits of safety, and the creativity of the staff and campers, almost anything is possible.

Where is Vent Camp?
  Vent Camp takes place at Camp Fowler in Mayville, Michigan. Below is a map, and directions coming from M-24, and from M-53.

1. Coming from M-53 to M-46 (from Detroit or U.P.): When you reach the intersection of M-53 and M-46, drive west on M-46 through Kingston. Turn left on Cat Lake Road (7.5 miles beyond Kingston). Go 1 mile and turn left onto Harmon Lake Road and turn left. Camp is at the end of the road, on the left.
2. Coming from M-24 to M-46 (from Detroit or Ann Arbor):When you reach the intersection of M-24 and M-46, drive east on M-46 for 2 miles, then take a right onto Cat Lake Road. Go 1 mile and turn left onto Harmon Lake Road. Camp is at the end of the road, on the left.

Who is Mary Dekeon?
  There are many amazing people who help make Vent Camp happen, but the one individual most identified with Vent Camp is Mary Buschell (previously Mary Dekeon), Clinical Specialist Resp. Care and Director, Trail's Edge Camp for Ventilator Dependent Children

When is Vent Camp?
  Vent Camp happens in early June. Contact Mary Buschell to get on the mailing list, and receive the schedule for this year. Look here also for an updated schedule for 2006.

  2006 Schedule

    Feb 28: Camper applications will be mailed out.
        Due back by March 30
    March 10,11: Tree house Bathroom building weekend
        (Luau on March 10 with prizes for the best
        Hawaiian winter wear).
    April 29: Volunteer orientation & planning 11:30 AM
       to 4 PM (Arbor Brewing, Washington St. Ann Arbor).
    June 2: Supplies delivered to camp.
    June 3: Volunteers to arrive at camp.
    June 4: Campers to arrive at camp.
    June 9: Last day of camp.

Do I need "medical" knowledge to volunteer?
  No. Though many of the volunteers are physicians, nurses, respiratory therapists, occupational therapists, physical therapists, speech therapists, and other health care professionals; many volunteers have no medical background at all. You will be taught the information you need to know, and there are always a dozen knowledgeable people within shouting distance to help. As long as you have a real interest in helping out at camp, you are definitely welcome. The number of children we can take every year is usually limited by the number of volunteer partners, so you can definitely make a big difference for at least one camper by volunteering.

How do I sign up as a volunteer?
  To volunteer, contact Mary Dekeon by email. See the schedule for deadlines.

How do I become a camper?
  Campers must be between the age of 13 and 18, be ventilator dependent for at least part of the day, and live in Michigan. Camper spaces are limited by the number of volunteers and space at the map (this year, there were 28 campers).There is an on-line pre-camper application at the official vent camp web site, but I believe the pre-application does not work at the time of this writing.

Do volunteers get paid?
  No. That's why they're called volunteers ;)... Actually, though there is no salary for volunteers, there is free room and board, with excellent meals provided by our wonderful kitchen staff (and the food is definitely of much higher quality than typical "camp" food.)

Where does Vent Camp get its funding?
  Vent Camp is funded through contributions from various foundations. Zukey Lake Tavern sponsors a golf outing that directly generates much of the funds. A large part of the equipment is donated by private companies. Finally, and most importantly, volunteers donate their time, which is the most valuable gift of all. As a result, campers and their families do not have to pay any money to attend camp. Please contact Mary Buschell to learn how you can help out with vent camp, as a volunteer, or otherwise. Thank you and God Bless you.

Vent Camp - part 1

What is "vent camp"? It's been a big part of my life, and my only consistent summer activity for the last 15 years.

Vent camp is a 1 week summer camp in Mayville, Michigan for Children with special needs (specifically, children who live at home and use ventilators).  Every year, 29 children and about a hundred staff (all volunteers) spend an entire week at Trails Edge camp, enjoying each other's companies, doing fun activities, and just hanging out in a non-judgmental, relaxed environment where nobody treats you like you're different, special, or needing of pity. Kids on vents get to just be "kids".

You might wonder how a person who uses a ventilator could have a good time at summer camp (heck, you might not have even realized that hundreds of children out there live at home on ventilators). But it's actually pretty easy to understand if you just browse the pictures and use your imagination a little. Take some medical people, a lot of know-how and sweat, enthusiastic non-medical volunteers willing to learn, generous time & cash contributions... and you can accomplish anything.

It's a place where I learned so much about myself & the meaning of life; its how I chose my career. It's where I learned that most disability is isolating because of society's prejudices, that all our gifts and disabilities don't make us very different from each other at all in God's eyes: a girl in a chair and a man who runs marathon are not different in any way that really counts.

It's where I figured out that if life can be absolute joy for one week for a paralyzed boy in a wheelchair on a vent... there's no reason we can't work toward making a world where the other 51 weeks are pretty darn good too. Social competence, social interaction, that's what life is about. Not our bodies.

More on vent camp and other topics next time, but for now, if you're interested in finding out more about it, possibly to volunteer, you can peruse the photo galleries on the right, and/or email Mary Buschell for more information. My old Vent Camp FAQ has some information and a map on it.

THINGS ARE NEVER SO GOOD THAT YOU CAN'T COMPLAIN.

Dinner at Uncle Park's...

PREVENTING ONE BRAIN INJURY

(originally published in the Northern Virginia Brain Injury Association Newsletter)

Brain Injury – the scope of the problem

Traumatic brain injury is the #1 cause of death and disability among children and adolescents. According to the Brain Injury Association of America, one million children each year suffer traumatic brain injuries serious enough to take them to an emergency room, and tens of thousands suffer permanent disability.

The top causes of brain injuries are falls, motor vehicle crashes (including pedestrians struck by cars), bike crashes, and gunshot wounds.

It’s simple. Most of us already know how to prevent many of these injuries (raising public awareness and changing laws has helped a lot in the last 10 years), but they continue to happen.

And even one preventable brain injury is one too many.

The Brain – there’s no part you won’t miss

There are many organs in the human body, but none really match the brain in its complexity, importance, and fragility. Some might choose to debate me on this, but they would be wrong. Without the brain, we cannot breathe, eat, learn, think, speak, move, laugh, cry, or read.

A surgeon could take any other organ in our bodies, go in with a scalpel, excise 10% of it, and sew the organ back together without a problem. You can be just fine losing 10% of your heart, 10% of your liver, or 10% of your lungs. But what does it mean to lose 10% of your brain?

In a decade of working with children with brain injuries, I’ve learned that each injury (whether it’s 1% or 50%) is unique and devastating in a multitude of ways.

Which 1% or 2% of your brain could a surgeon take that you wouldn’t miss… a lot?

The Skull – nature’s helmet

This is why the brain is surrounded by its own built in 2.2 pound helmet, known as the skull. It protects the brain from harm in most natural collisions (running speeds). Children have less protection (about 1 pound of skull or less), but still adequate for most situations, because they don’t run as fast as grownups.

However, with the invention of cars, bicycles, guns, and buildings, the skull is no longer adequate protection by itself. All these wonders of the modern age result in speeds and crashes far greater than the human skull and brain were ever designed to handle.

The Bicycle Helmet – man’s answer to the skull

Bicycles travel 20-30 mph which means that if you occasionally crash (don’t forget to add in the headfirst 3 foot fall onto concrete or asphalt), you need a better helmet than God gave you.

Fortunately they sell bicycle helmets for $10 - $100 (about 10% of the price of the bicycle) at your local bicycle store. In a crash, the helmet breaks, absorbing the energy of the crash. This means that your brain doesn’t experience most of the force.

Unfortunately, children and adolescents often don’t want to wear their helmets, and will make a big fuss about this.

The answer is simple. Parents need to draw the line. 90% of bicycle riders seen in emergency departments for brain injury were not wearing helmets. It’s non-negotiable. No helmet = no bike/skateboard/rollerblades/skateshoes. If a child doesn’t want to wear a helmet, they can jog or run. It’s too important to give in.

Seat Belts – It’s the law.

Cars travel typically travel 40-80 mph which means that if you are unrestrained in a crash, you will probably fly through the windshield, and land in the road with many times the energy of a bike crash. Seat belts are vital (and car seats for children).

This is obvious, but unfortunately it always bears repeating. Despite the overwhelming evidence that they prevent devastating injuries and death, seatbelts are not always worn.

Airbags, in conjunction with seatbelts (the airbag is useless by itself) have also helped reduce serious injury. However, in cars with passenger side airbags, it’s very important to remember that children 12 years and younger should sit in the back seat, because the airbag is designed to stop the momentum of an adult, and can be too violent for children, resulting in injuries and death.

All babies need to be in cars eats. Nobody can hold onto a baby in a 40 mph head on crash. Arnold Schwarzenegger isn’t strong enough, so neither is a 130 pound soccer mom.

 
Safety in the Home

Falls and gunshot wounds are the other two major causes of high velocity head impact and resultant brain injury in children.

Railings on stairs, adequate locks on windows, child safety gates, and locks on guns (if you must keep a gun in the house) will all help make your child’s brain safer. Teaching children from a very young age about safety awareness and respect for the dangers is just as important.

Obviously, we should not raise our children in fear (and you can’t control all risk), but a little common sense and a little extra effort can go a long way to avoiding unnecessary risk. Setting an example and modeling good behavior is even better than just telling kids to be safe.

Alcohol and drugs

A whole separate topic unto itself, drugs and alcohol contribute to a huge percentage of the motor vehicle crashes that cause brain injury. Educate the children.

 
Prevention is the Currently the Only Cure

Brain tissue doesn’t really grow back. A significantly injured brain can never be exactly what it was before the injury. Thus, even the mildest of permanent brain injuries is the cognitive equivalent of walking with a limp for the rest of your life… With good rehabilitation services and eventually coming to terms with grief, adjustment, and self image, many people can still lead happy, productive lives. But life will never be exactly what it was before the injury.

Deficits from moderate (and even some mild) brain injuries include learning problems, emotional lability, impaired executive function, headaches, attention problems and motor impairments. Any one of these can be socially and vocationally devastating by itself.

More severe brain injuries almost always result in major physical disabilities, as well as badly impaired cognitive function, sometimes even a complete loss of who the person was before the injury (or even permanent, unresponsive coma). Loved ones, on many levels, often have to grieve the loss of the person they once knew.

Working with a multidisciplinary rehab team, helping families and patients learn to deal with their new lives is one of the most intense, emotionally wrenching, but satisfying areas of my job as a rehabilitation specialist. It is rewarding for me because I always feel good about the future as I watch the progress. It’s reassuring to know that if we keep pushing forward, each new day will be better than yesterday. It’s humbling and inspiring to my own life to watch, and participate, in their personal struggles after brain injury, and realize that we all have the same needs. No problem is too big to be solved (or at least rationalized away and accepted) because the future is only about hope. Looking back with regret about “could have beens” is a futile and pointless exercise I strongly discourage.

At the same time, science makes advances in the treatment and management of head injuries every year. Sooner or later, I have no doubt that some young genius will discover how to grow back brain tissue someday.

But that someday is not today.

Today, we who have experienced the impact of head injury, can use our hard-earned knowledge to prevent future children from becoming brain injured. Today, we can spread the word about seat belts, car seats, helmets, gun safety, substance abuse, and household safety.

Today, if every person who reads this article goes out and reinforces at least one parent on wearing a helmet or seat belt, there’s no doubt in my mind that at least one brain injury will be prevented.

I hope it’s more than one.