What is included in activity based therapy, exactly? Also, patients have lives, so what is the minimum amount you must do in order to improve?
John MacDonald: ABRT is anything that combines the goal of increasing neurological activity AND combines it with physiological work. It's all about response over time. It's the whole range, including aquatherapy. It comes down to time constraints . . . how can you can get the biggest bang over time? Keep focused on doable goals, put the patient in a position where they have something to work on for about 8 hours a week.
Dr Nieshoff: it depends on what the patient is willing and able to do.
Dr. Hinderer: dose is still a big question. We based our own estimates on how much it takes to make neurological changes in the brain, because there is not functional mri for the cord yet; it's much harder to do that.
Q: I always come here to w2w, and I always leave so motivated . . but at home reality always intrudes. Work, family, school, bleh. How can I keep motivated.
Dr. MacDonald says that there's a ton of evidence that says if an AB gets 30 minutes of moderate physical activity per week, they're going to be healthier.
Dr Hinderer: We're not very sophisticated at the moment, and there of course is not insurance coverage . . . a clinical trial might be a way to get cost-free
Woman: I just became aware of a series of articles in the Spinal Cord Injury magazine about a wide study made to help gather data.
Meh. I raise my hand to suggest that we at u2fp set up an exercise support group. We have each other's contact information and we could make it a priority to get this done before we meet next year.
Friday, August 28, 2009
Panel with Dr MacDonald, Dr Hinderer, and Dr Nieshoff
Q: Dr MacDonald, you said that when you look at a patient's maximum function, that's what you work from . . . is there a way to know after a number of years where a patient is with precision?
The techniques are being developed to let us get at that. We rely on a careful clinical evaluation. The imaging doesn't tell about function; it's just showing anatomy. If you take a group of people who all have the same number of connections across, or the same mass of connections, they may all function differently. When we marry that kind of measurement to the progress in treatment, we learn a lot. It's an imperfect system, but getting better. It's even possible to get around the hardware problems, just takes a different protocol.
Q: Dr MacDonal, my son has an incomplete c5/6 injury and is doing therapy at SCI step. You scared me when you said that baclofen is detracting from his progress; he's thinking of getting a baclofen pump.
There's no doubt that you have to try to balance this, and that the benefits of baclofen can be important. I'd recommend that he get to a place where he can be fully evaluated . .. the answer is not to just go get a pump. DR Nieshoff jumps in to say that if the person is taking 400 mg a day, you have to ask why? Sometimes a period of gradual withdrawal and then gradual increase can get to the same reduced spasticity without that level of medication. Also I'd look at what might be causing the spasticity. I'd be loathe to consider a pump for a young person. Dr Hinderer says that several studies have been done to look at what can reduce the need for a pump. There are lots of things that reduce spasticity, but for an intracathal pump the FDA only approves baclofen.
Q: This is for both Steve and John. One of you just said that 2/3 of what we do in medicine is not evidence based. With FES, we have the luxury of not needing to amass more evidence, and there is a lot out there already to show that FES has many well-established health benefits. BUT, I do NOT think there is evidence anywhere to show that it causes axon regeneration and myelination. That's what your little cartoon seemed to claim. Comments?
John answers that it's clinically impossible to prove myelination, BUT with FES at the moment we're sort of at a dose-finding Phase II level of trial with spinal cord injury. Right now I advocate 3 hrs of FES, but that's based on the AB nervous system and has nothing to do with damaged CNS repair. Now it's time to do some animal models to look at what's happening at the molecular level. The technology is just beginning to catch up with that.
Dr. Kerr gets up to comment . . . Peter knows the answer to the question he just asked, because he's working on a trial with us that will try to see if FES is really needed, or if the same thing happens on a molecular level with just passive range of motion. From our trial, you can say that some people will recover and some won't. The question is what's the molecular fingerprint of repair. I think we're on the brink of understanding very clearly what FES can do.
Dr. Hinderer says that a challenge is finding something that is reproducible and reliable and also subject to change. It's important to look at methods other than what have traditionally been used; the ASIA scale is not very useful. The one Dr. McKay described yesterday is much more sensitive and something like that will definitely be important as we go forward.
Q: Has there been a look at more aggressive forms of rehab? Where is the health care debate going when it comes to the need for more and better?
Dr. MacDonald says that it's clear that we must have a way for a majority of people to access quality rehab. It will require emergent technology, using some kind of smart systems that let us know which of 20 factors is important. This is doable with thousands of patients, but it's not doable with hundreds. FES is good, but it's only about a third of what we do. Once people go home they have to be able to do it. We're going to need to demonstrate to the government that this works, and not just in reduction of complications. Dr. Nieshoff says that like it or not, we're one of the most expensive groups of patients to treat. We have to teach our legislators the difference between being penny wise and pound foolish.
Q: There's been a lot of talk about how we quantify motor control. It seems that Barry McKay's method is pretty good . . . do you know if this is going to become standard or if something else is?
Right now ASIA is the best we have; it's not very good but if you find someone who's good you'll get an accurate result.
Diaagreement - I think the ASIA scores are meaningless, and that there are quantitative measures of motor and sensory and autonomic function, which we ought to be pushing hard to get. It's not enough to say that ASIA is the best we have, so we have to go with it.
Can we do better? Certainly, but if we were in court that's what they'd go with. it is the standard.
Q: How do you detect subtle differences when they only have 5 levels?
When it's done by the book there's very little subjectivity involved. It's designed to be as objective as it can be. There are some components that are a little iffy, but right now this is the standard.
What you're talking about is scalability . . .one solution might be to increase the number of levels, like from 5 to 10 -- but better still would be to take out the examiner error.
Q: I'm a c4/5 hemiplegic. I was listening to you talk about the various things that have happened in rehab . . I want to back up what you have said about the need to get into exercise therapy. My question is about fatigue. If I cook a meal I have to go lie down because I'm so tired. If I walk for 6 minutes my Oxygen SAT goes down to 70.
You need a good onceover by a spinal cord doc. What you describe is things that can make a big difference in the way you function and in your own safety.
The end. On to the break, and then the breakout sessions. Woo hoo!
The techniques are being developed to let us get at that. We rely on a careful clinical evaluation. The imaging doesn't tell about function; it's just showing anatomy. If you take a group of people who all have the same number of connections across, or the same mass of connections, they may all function differently. When we marry that kind of measurement to the progress in treatment, we learn a lot. It's an imperfect system, but getting better. It's even possible to get around the hardware problems, just takes a different protocol.
Q: Dr MacDonal, my son has an incomplete c5/6 injury and is doing therapy at SCI step. You scared me when you said that baclofen is detracting from his progress; he's thinking of getting a baclofen pump.
There's no doubt that you have to try to balance this, and that the benefits of baclofen can be important. I'd recommend that he get to a place where he can be fully evaluated . .. the answer is not to just go get a pump. DR Nieshoff jumps in to say that if the person is taking 400 mg a day, you have to ask why? Sometimes a period of gradual withdrawal and then gradual increase can get to the same reduced spasticity without that level of medication. Also I'd look at what might be causing the spasticity. I'd be loathe to consider a pump for a young person. Dr Hinderer says that several studies have been done to look at what can reduce the need for a pump. There are lots of things that reduce spasticity, but for an intracathal pump the FDA only approves baclofen.
Q: This is for both Steve and John. One of you just said that 2/3 of what we do in medicine is not evidence based. With FES, we have the luxury of not needing to amass more evidence, and there is a lot out there already to show that FES has many well-established health benefits. BUT, I do NOT think there is evidence anywhere to show that it causes axon regeneration and myelination. That's what your little cartoon seemed to claim. Comments?
John answers that it's clinically impossible to prove myelination, BUT with FES at the moment we're sort of at a dose-finding Phase II level of trial with spinal cord injury. Right now I advocate 3 hrs of FES, but that's based on the AB nervous system and has nothing to do with damaged CNS repair. Now it's time to do some animal models to look at what's happening at the molecular level. The technology is just beginning to catch up with that.
Dr. Kerr gets up to comment . . . Peter knows the answer to the question he just asked, because he's working on a trial with us that will try to see if FES is really needed, or if the same thing happens on a molecular level with just passive range of motion. From our trial, you can say that some people will recover and some won't. The question is what's the molecular fingerprint of repair. I think we're on the brink of understanding very clearly what FES can do.
Dr. Hinderer says that a challenge is finding something that is reproducible and reliable and also subject to change. It's important to look at methods other than what have traditionally been used; the ASIA scale is not very useful. The one Dr. McKay described yesterday is much more sensitive and something like that will definitely be important as we go forward.
Q: Has there been a look at more aggressive forms of rehab? Where is the health care debate going when it comes to the need for more and better?
Dr. MacDonald says that it's clear that we must have a way for a majority of people to access quality rehab. It will require emergent technology, using some kind of smart systems that let us know which of 20 factors is important. This is doable with thousands of patients, but it's not doable with hundreds. FES is good, but it's only about a third of what we do. Once people go home they have to be able to do it. We're going to need to demonstrate to the government that this works, and not just in reduction of complications. Dr. Nieshoff says that like it or not, we're one of the most expensive groups of patients to treat. We have to teach our legislators the difference between being penny wise and pound foolish.
Q: There's been a lot of talk about how we quantify motor control. It seems that Barry McKay's method is pretty good . . . do you know if this is going to become standard or if something else is?
Right now ASIA is the best we have; it's not very good but if you find someone who's good you'll get an accurate result.
Diaagreement - I think the ASIA scores are meaningless, and that there are quantitative measures of motor and sensory and autonomic function, which we ought to be pushing hard to get. It's not enough to say that ASIA is the best we have, so we have to go with it.
Can we do better? Certainly, but if we were in court that's what they'd go with. it is the standard.
Q: How do you detect subtle differences when they only have 5 levels?
When it's done by the book there's very little subjectivity involved. It's designed to be as objective as it can be. There are some components that are a little iffy, but right now this is the standard.
What you're talking about is scalability . . .one solution might be to increase the number of levels, like from 5 to 10 -- but better still would be to take out the examiner error.
Q: I'm a c4/5 hemiplegic. I was listening to you talk about the various things that have happened in rehab . . I want to back up what you have said about the need to get into exercise therapy. My question is about fatigue. If I cook a meal I have to go lie down because I'm so tired. If I walk for 6 minutes my Oxygen SAT goes down to 70.
You need a good onceover by a spinal cord doc. What you describe is things that can make a big difference in the way you function and in your own safety.
The end. On to the break, and then the breakout sessions. Woo hoo!
Dr. Steven R. Hinderer
He's the medical director of Wal the LIne to SCI Recovery
Talk is called " How to Choose a Recovery Program"
I agree with Dr. MacDonald is that a cure is not needed to get to a lot of recovery of function . . . we only use about 10 to 20% of our physical capabilities to do everyday tasks, and a lot of people in this room would gladly take that much physical function.
Lots of medical pros will say that it's only okay to get involved in treatments that have been validated by clinical trials. But in 2001 -- 8 years ago -- only about a third of what goes on in medical practice was evidence based. What we're trying to do is change a paradigm. Innovation needs evolution and development BEFORE you can run clinical trials. It's a fact that evidence based treatments are not always best.
Showing a slide about the Wright Brothers, who endured countless failures and then decided that all the literature for wing design was wrong. They invented the wind tunnel so that they could test new ideas. We know how that worked out.
Okay, so what does the new paradigm look like? Start with FES, though it's not exactly new . . . it was applied for the first time to quadreplegics in 1967. Lots of advantages, and some disadvantages.
Nonresponders, can only vary the velocity, painful if you have sensation, risks fractures, muscles, or joint injuries, don't know the impact longterm of high intensity current (it's very different from nature) -- he thinks that it's a well-studied OLD technology . . .
For intact nervous systems, the small motor units are recruited first; well before teh small motor units reach their max firing rate, the midsized motor units are recruited, and well before they reach their max firign rate, the large motor units are recruited . . . but with FES, you go directly to the largest motor units, and there's no way to change that. FES therefore retrains the system somewhat backwards; it starts right at the large motor neurons, which is why it's so tiring.
What about weight supported training? In 1992, Wernig and Muller reported that body weight supported training, starting at 40%, improvd walking. It improved fitness, decreased spasticity, decreased contrctures, increased perceived well-being. There was also a study that showed BOTH weight supported gait training and over ground gait training resulted in improved walking.
Disadvantages of weight supported training: expensive, can only vary amount of weight supported and speed, doesn't include core runk muscles, must be able to tolerate upright position, onlyhelps with incomplete injuries.
His third alternative is load-bearing weight training. He's been setting us up for this one . . .
Paper by Giorgio Scivoletto . . . "The concept that restoration of a close to normal foot trajectory may be a very importnt goal of walking training and that this can be achieved provided the relative freedom of the other segments of hte lower limbs, trunk amd arms . . . " - anther paper to look up -- Here it is: http://nnr.sagepub.com/cgi/content/abstract/21/4/358
Okay, what are the principles that should be applied?
Repetition, repetition, repetition (with minor variations)
Nutrition and health maintenance
Core trunk strength and posture
Sensory inputs/integration
Dynamic coordination training
Activation of spinal cord motor nerve cells and the muscles to which they connect
Motivation to maximize performance
Mind-body connection
This is boot camp. You probably will have to have somebody like a coach or a therapist or a trainer . . . you're going to get sick of this damn quick. You need people to help you get your best game going every day.
Changes in neural pathways require
At least 3 hours per day
At least 3 days per week
More is better (within reason) -- some programs do 7 hours a day, 7 days a week.
Nutrition and health maintenance means
Hydration
Amino acids/proteins
Vitamin D
Adequate rest
What does core trunk strength and posture look like? He's got patients with better posture than a lot of AB people in the general population.
Sensory inputs -- this is interesting . . . vibration can either help or hurt. When it helps, it does so by improving bone density and stimulating sensory receptors.
Look at the Giger MD, made in Switzerland . . . http://www.gigermd.com/
How do you activate spinal motor nerves? full weight bearing, minimal use of orthotics, judicious use of localized FES (Bioness)
Know that this is years of work. It's Olympic level training, going for gold, and requires all the same kinds of support that an Olympic level athlete has to have.
Total Gym -- lots of sci exercise facilities use them.
Talk is called " How to Choose a Recovery Program"
I agree with Dr. MacDonald is that a cure is not needed to get to a lot of recovery of function . . . we only use about 10 to 20% of our physical capabilities to do everyday tasks, and a lot of people in this room would gladly take that much physical function.
Lots of medical pros will say that it's only okay to get involved in treatments that have been validated by clinical trials. But in 2001 -- 8 years ago -- only about a third of what goes on in medical practice was evidence based. What we're trying to do is change a paradigm. Innovation needs evolution and development BEFORE you can run clinical trials. It's a fact that evidence based treatments are not always best.
Showing a slide about the Wright Brothers, who endured countless failures and then decided that all the literature for wing design was wrong. They invented the wind tunnel so that they could test new ideas. We know how that worked out.
Okay, so what does the new paradigm look like? Start with FES, though it's not exactly new . . . it was applied for the first time to quadreplegics in 1967. Lots of advantages, and some disadvantages.
Nonresponders, can only vary the velocity, painful if you have sensation, risks fractures, muscles, or joint injuries, don't know the impact longterm of high intensity current (it's very different from nature) -- he thinks that it's a well-studied OLD technology . . .
For intact nervous systems, the small motor units are recruited first; well before teh small motor units reach their max firing rate, the midsized motor units are recruited, and well before they reach their max firign rate, the large motor units are recruited . . . but with FES, you go directly to the largest motor units, and there's no way to change that. FES therefore retrains the system somewhat backwards; it starts right at the large motor neurons, which is why it's so tiring.
What about weight supported training? In 1992, Wernig and Muller reported that body weight supported training, starting at 40%, improvd walking. It improved fitness, decreased spasticity, decreased contrctures, increased perceived well-being. There was also a study that showed BOTH weight supported gait training and over ground gait training resulted in improved walking.
Disadvantages of weight supported training: expensive, can only vary amount of weight supported and speed, doesn't include core runk muscles, must be able to tolerate upright position, onlyhelps with incomplete injuries.
His third alternative is load-bearing weight training. He's been setting us up for this one . . .
Paper by Giorgio Scivoletto . . . "The concept that restoration of a close to normal foot trajectory may be a very importnt goal of walking training and that this can be achieved provided the relative freedom of the other segments of hte lower limbs, trunk amd arms . . . " - anther paper to look up -- Here it is: http://nnr.sagepub.com/cgi/content/abstract/21/4/358
Okay, what are the principles that should be applied?
Repetition, repetition, repetition (with minor variations)
Nutrition and health maintenance
Core trunk strength and posture
Sensory inputs/integration
Dynamic coordination training
Activation of spinal cord motor nerve cells and the muscles to which they connect
Motivation to maximize performance
Mind-body connection
This is boot camp. You probably will have to have somebody like a coach or a therapist or a trainer . . . you're going to get sick of this damn quick. You need people to help you get your best game going every day.
Changes in neural pathways require
At least 3 hours per day
At least 3 days per week
More is better (within reason) -- some programs do 7 hours a day, 7 days a week.
Nutrition and health maintenance means
Hydration
Amino acids/proteins
Vitamin D
Adequate rest
What does core trunk strength and posture look like? He's got patients with better posture than a lot of AB people in the general population.
Sensory inputs -- this is interesting . . . vibration can either help or hurt. When it helps, it does so by improving bone density and stimulating sensory receptors.
Look at the Giger MD, made in Switzerland . . . http://www.gigermd.com/
How do you activate spinal motor nerves? full weight bearing, minimal use of orthotics, judicious use of localized FES (Bioness)
Know that this is years of work. It's Olympic level training, going for gold, and requires all the same kinds of support that an Olympic level athlete has to have.
Total Gym -- lots of sci exercise facilities use them.
Dr. John MacDonald
This is a relatively sophisticated audience, so I'm going to show a few more slides than I normally would . . . He works at the International Center for SCI. They focus on designing individualized, life-long in-home, restoration therapy rehabilitation program.
Talking points:
Most mechanisms of regeneration are activity-dependent
Micro-repair is sufficient for functional recovery
Delayed recovery is possible
Activity-based restoration therapies (ABRT) work
ABRT is important for meeting the cure half way
It requires more than just movement; you have to be focusing on muscle mass.
He's showing a conventional wisdom ASIA A slide . . . very depressing old set of thoughts, followed by a some images of injured cords. Says that the brain is organized differently from the cord. Puts Pat Rummerfield's cord up; clearly can see that he's got 30% of his cord left, and then asks Pat to stand up.
You don't need the whole cord. You have a lot redundancy, and the nervous system can deal with bad injuries if you give it half a chance.
We've done a series of studies in people with ASIA A, and the majority of them have 10 to 30% of their cords intact, and yet they don't have a lot of function. Why? We think that many of them have BAD information going through that remnant of a cord.
The goals for restoration therapy are:
Partial repair -- a full "cure" is not necessary to regain function.
Reduction of complications, like infection, skin breakdown, spasticity, fractures, DVT, pain, AD . . . 30% of people with sci have to go to the hospital at least once a year.
What do we do? What are regeneration strategies?
In order of level of difficulty: Optimize spontaneous regeneration, create bridges, reduce expression of inhibitory proteins, achieve neuronal cell birth and replacement, create appropriate re-connectivity and long tract regrowth.
The lowest hanging fruit is to make the most of spontaneous regeneration.
And it turns out that patterned neural acitvity is fundamental to development and regeneration. How can you tell if regeneration is happening? the indicators are cell birth, migration, myelination, and formation of circuits. Drugs like baclofen inhibit the nervous system, while FES stimulates it. The nervous system responds to lack of activity by increasing spasticity.
Describing an experiment in which they did a complete transection at T8/9 and put a chip into the rat's lower back that let them give her e-stim. They got a lot cell birth below the injury site, just as expected -- 70% more than in their control.
He's saying that the activity caused new cells to come into being. Similar study with dramatic proliferation of oligodendrocytes due to FES.
Showing what happens if you take baclofen . . . lowers population of both axons and oligodendrocytes. They also gave it to rats and then treated them with embryonic stem cells, and saw that fewer neurons were created.
video: Riding an FES bike for one hour is equivalent to walking 6,000 steps . .. I'm sure this is online.
Are there clinical studies of ABRT? Sure, more of them all the time. They all show that it reverses physical deterioration and has many other benefits.
Sadowsky et al, 2005 . . . I will look this up and post the link; John is showing the data, but too fast for me to type. The bottom line is that 70% of the people in the study got at least some function back, and 40% of them jumped a full level on the ASIA scale.
(having a little problem watching these slides because he keeps swinging the green fluorescent pointer wildly and quickly around the screen . . . giving me the spins)
Q: What about people who can't get to a center?
We have to set up a better system; what we need is to get beyond the walls.
Talking points:
Most mechanisms of regeneration are activity-dependent
Micro-repair is sufficient for functional recovery
Delayed recovery is possible
Activity-based restoration therapies (ABRT) work
ABRT is important for meeting the cure half way
It requires more than just movement; you have to be focusing on muscle mass.
He's showing a conventional wisdom ASIA A slide . . . very depressing old set of thoughts, followed by a some images of injured cords. Says that the brain is organized differently from the cord. Puts Pat Rummerfield's cord up; clearly can see that he's got 30% of his cord left, and then asks Pat to stand up.
You don't need the whole cord. You have a lot redundancy, and the nervous system can deal with bad injuries if you give it half a chance.
We've done a series of studies in people with ASIA A, and the majority of them have 10 to 30% of their cords intact, and yet they don't have a lot of function. Why? We think that many of them have BAD information going through that remnant of a cord.
The goals for restoration therapy are:
Partial repair -- a full "cure" is not necessary to regain function.
Reduction of complications, like infection, skin breakdown, spasticity, fractures, DVT, pain, AD . . . 30% of people with sci have to go to the hospital at least once a year.
What do we do? What are regeneration strategies?
In order of level of difficulty: Optimize spontaneous regeneration, create bridges, reduce expression of inhibitory proteins, achieve neuronal cell birth and replacement, create appropriate re-connectivity and long tract regrowth.
The lowest hanging fruit is to make the most of spontaneous regeneration.
And it turns out that patterned neural acitvity is fundamental to development and regeneration. How can you tell if regeneration is happening? the indicators are cell birth, migration, myelination, and formation of circuits. Drugs like baclofen inhibit the nervous system, while FES stimulates it. The nervous system responds to lack of activity by increasing spasticity.
Describing an experiment in which they did a complete transection at T8/9 and put a chip into the rat's lower back that let them give her e-stim. They got a lot cell birth below the injury site, just as expected -- 70% more than in their control.
He's saying that the activity caused new cells to come into being. Similar study with dramatic proliferation of oligodendrocytes due to FES.
Showing what happens if you take baclofen . . . lowers population of both axons and oligodendrocytes. They also gave it to rats and then treated them with embryonic stem cells, and saw that fewer neurons were created.
video: Riding an FES bike for one hour is equivalent to walking 6,000 steps . .. I'm sure this is online.
Are there clinical studies of ABRT? Sure, more of them all the time. They all show that it reverses physical deterioration and has many other benefits.
Sadowsky et al, 2005 . . . I will look this up and post the link; John is showing the data, but too fast for me to type. The bottom line is that 70% of the people in the study got at least some function back, and 40% of them jumped a full level on the ASIA scale.
(having a little problem watching these slides because he keeps swinging the green fluorescent pointer wildly and quickly around the screen . . . giving me the spins)
Q: What about people who can't get to a center?
We have to set up a better system; what we need is to get beyond the walls.
Anne Phipps, Co-founder Sci-Step Rehabilitation
Since 2002 I've been a T6 paraplegic and this is not my first w2w.
I'm honored to be here with you. In 2002 I was the marketing manager at my husband's Harley Davidson dealership . . . I loved it. I loved the speed and just being on the motorcycle.
Until Saturday august 10th 2002. I was up early after only a few of hours of restless sleep, getting ready to race. I sent into the burnout box and waited for the green light. I let go of the clutch and off I went. Halfway down the track I saw that my opponent wouldn't be able to catch me. As I crossed the finish line I tried to slow down and realized that something was wrong.
I spent the next few days in the hospital; I was airlifted to Craig Hospital. A woman I'd never met before informed me that I had been in a bad crash and that I was now paralyzed, for the rest of my life. She told me that my husband was out visiting rehab hospitals across the country to find the best place for me to go.
I passed out, and when I woke up, I heard the same thing all over again. I refused to believe it.
Every night I laid in bed wishing the nightmare would be over. When I woke up in the morning I was always sad to realize it was still going on. I didn't care what kind of chair I had. Part of my therapy involved being dumped out of my chair . . . the nurse asked me what I would do next. I reached for my cell phone to call my husband. She didn't laugh.
. . .
My husband found me a place to go in Texas, and the next trauma was to get onto the airplane. None of the attendants had a clue how to get me on . . . at the hotel we were given a handicapped room, but it was no way accessible. I went into an anxiety attack and wanted to go home. We got into an apartment and spent the next 2 weeks trying to modify what was not working, which was basically everything. The last thing on my mind was to do PT.
I remember spending 2 days doing nothing but trying to sit up and use a transfer board, getting so frustrated that I just wanted to go home. I made my husband drive me home to Ohio . . . we were so tired that neither of us had thought about the fact that I couldn't even get INTO my house, much less around it once I was in.
My husband and I started to fight all the time . . . he hired caregivers to help me around the clock. Eventually he found us a patio home that I could navigate; we were stuck with 2 houses for awhile.
through a friend about this time, I was introduced to Michelle Brock. We made a table and installed it at the Harley dealership, where I worked out for the next 2 months. It was a big distraction there, obviously, so we moved to another location . . . and in that location we realized that it would be good to offer this service to others in the sci community. We named it SCI STep, and in March of 2003 we enrolled our first client.
I felt for the first time that I was doing something with my life. About that time my husband and I chose to end the marriage, which had been damaged so badly during the last year.
The hardest part of my new life was needing to depend on an asssistant to help me do things . . . I set some goals for that year that would get me to independence and met every one of them.
But something wasn't right with my left hip and leg. At the hospital I found out that my left hip had been fractured in the crash and gone undiagnosed . . . the doctors told me to go be a good little paraplegic and forget about hip replacement surgery or ever walking again. Over the next year I had more than a dozen dislocations and 2 different prosthetics installed. This just meant to me that I had to find a way to walk without a hip.
I have a baclofen pump for spasticity. I've rolled over my own feet. It's a long list of speed bumps . . . but here I am. I live like I did before my injury. I never gave up on my recovery, even through the toughest of times. Even on the bad days, in the back of my mind, I took some strength from all the people who come to our facility.
That's why we offer a full free week to every person who wants to come to SCI step to try out what we have. A full week, free of charge. Everybody.
I do what I want now . .. I travel, I go to public events, I even date -- and have recently broken a few hearts.
SCI step is my life now. I've helped clients do so many things. We have clients who have tattooed our logo on their bodies. I've been involved in a lot of fundraisers, including a project that was about taking used wheelchair parts . . . I was able to help with an Extreme Home Makeover project.
(She thanks a long list of people . . . )
Serious WOW, people. What's above is not an exact transcription by any stretch, because Anne was talking a little fast. When we get the video up, I hope you all watch it over and over. She's truly awesome.
I'm honored to be here with you. In 2002 I was the marketing manager at my husband's Harley Davidson dealership . . . I loved it. I loved the speed and just being on the motorcycle.
Until Saturday august 10th 2002. I was up early after only a few of hours of restless sleep, getting ready to race. I sent into the burnout box and waited for the green light. I let go of the clutch and off I went. Halfway down the track I saw that my opponent wouldn't be able to catch me. As I crossed the finish line I tried to slow down and realized that something was wrong.
I spent the next few days in the hospital; I was airlifted to Craig Hospital. A woman I'd never met before informed me that I had been in a bad crash and that I was now paralyzed, for the rest of my life. She told me that my husband was out visiting rehab hospitals across the country to find the best place for me to go.
I passed out, and when I woke up, I heard the same thing all over again. I refused to believe it.
Every night I laid in bed wishing the nightmare would be over. When I woke up in the morning I was always sad to realize it was still going on. I didn't care what kind of chair I had. Part of my therapy involved being dumped out of my chair . . . the nurse asked me what I would do next. I reached for my cell phone to call my husband. She didn't laugh.
. . .
My husband found me a place to go in Texas, and the next trauma was to get onto the airplane. None of the attendants had a clue how to get me on . . . at the hotel we were given a handicapped room, but it was no way accessible. I went into an anxiety attack and wanted to go home. We got into an apartment and spent the next 2 weeks trying to modify what was not working, which was basically everything. The last thing on my mind was to do PT.
I remember spending 2 days doing nothing but trying to sit up and use a transfer board, getting so frustrated that I just wanted to go home. I made my husband drive me home to Ohio . . . we were so tired that neither of us had thought about the fact that I couldn't even get INTO my house, much less around it once I was in.
My husband and I started to fight all the time . . . he hired caregivers to help me around the clock. Eventually he found us a patio home that I could navigate; we were stuck with 2 houses for awhile.
through a friend about this time, I was introduced to Michelle Brock. We made a table and installed it at the Harley dealership, where I worked out for the next 2 months. It was a big distraction there, obviously, so we moved to another location . . . and in that location we realized that it would be good to offer this service to others in the sci community. We named it SCI STep, and in March of 2003 we enrolled our first client.
I felt for the first time that I was doing something with my life. About that time my husband and I chose to end the marriage, which had been damaged so badly during the last year.
The hardest part of my new life was needing to depend on an asssistant to help me do things . . . I set some goals for that year that would get me to independence and met every one of them.
But something wasn't right with my left hip and leg. At the hospital I found out that my left hip had been fractured in the crash and gone undiagnosed . . . the doctors told me to go be a good little paraplegic and forget about hip replacement surgery or ever walking again. Over the next year I had more than a dozen dislocations and 2 different prosthetics installed. This just meant to me that I had to find a way to walk without a hip.
I have a baclofen pump for spasticity. I've rolled over my own feet. It's a long list of speed bumps . . . but here I am. I live like I did before my injury. I never gave up on my recovery, even through the toughest of times. Even on the bad days, in the back of my mind, I took some strength from all the people who come to our facility.
That's why we offer a full free week to every person who wants to come to SCI step to try out what we have. A full week, free of charge. Everybody.
I do what I want now . .. I travel, I go to public events, I even date -- and have recently broken a few hearts.
SCI step is my life now. I've helped clients do so many things. We have clients who have tattooed our logo on their bodies. I've been involved in a lot of fundraisers, including a project that was about taking used wheelchair parts . . . I was able to help with an Extreme Home Makeover project.
(She thanks a long list of people . . . )
Serious WOW, people. What's above is not an exact transcription by any stretch, because Anne was talking a little fast. When we get the video up, I hope you all watch it over and over. She's truly awesome.
Aunt Marie!
I'm Sue's aunt. I'm a member of the local eagle's club, and we've been doing chicken fries for the last 2 years. You're only allowed to donate $25 at a time. You need to know that I'm the youngest person in this group, (laughs), and I just want to give u2fp this check for $500. It's a pittance, and doesn't go very far . . . but if we all do our part, we'll get somewhere.
(Need to say that I am personally just dead nuts about this woman. Thanks, Aunt Marie!)
(Need to say that I am personally just dead nuts about this woman. Thanks, Aunt Marie!)
Dr. Edward Nieshoff
Sue Maus introducing Dr. Edward Nieshoff from the Rehab Institute of MIchigan at U of M. Someone from this group has been with us every year since the beginning.
I want to show you how to make the most of intensive treatment; for the record I have financial support from the Pfizer institute.
Our strategy #1 is to figure out how to optimize muscle strength. Everybody knows that sci causes severe loss of muscle bulk, and there are often metabolic changes that cause rapid fatigue, especially in weight-bearing muscles.
One reason for this is that hormones change after sci . . . men lose a lot of testosterone, and many of them suffer from Low T syndrome. They have decreased energy, sex drive, energy -- but check with your doctor & find out if this is affecting you.
If you have low T, get some. If you don't, think about a hormone called oxandrolone. It's been studied in men with HIV, helping improve strength, endurance, sense of well being . . . also in a study of patients with burns, who had an average of 28% lower hospital stays. The results were so good that they stopped the trials early. The drug increases protein build up. Another doctor worked with patients how have decubitus ulcers and found benefit for them.
This drug is powerful but not necessarily benign . . . there are multiple potential side effects, including liver damage, hepatic tumors, lipid changes, acne, oily skin, mood changes, trouble sleeping, trouble urinating, breast swelling, prolonged erections, deepenng of the voice, unusual hair growth, allergic reactions.
If you choose to take it, you need regular liver testing to make sure you're not one of the small number of people who end up looking like the person on the screen -- a grossly over-steroided guy with bicps bigger than his head, and don't even get me started on the shoulders.
Strategy #2: optimize the heart function. When you first get an sci and then try to get out of bed you pass out. This gradually goes away over the first several months. Your blood pressure drops when you go from lying to sitting or from sitting to standing. There are some people who just can't tolerate getting into a standing frame, though, ever. There are also people who experience what they call exertional hypotension, which is getting very low blood pressure due to exercise.
If either of those is you, there is a drug called Midodrine that has been shown to improve activity tolerance and uprightness tolerance.
It also helps with exertional hypotension. There are quad athletes who do a thing called "clamping" -- which, yeeks! -- clamp off the foley to make their blood pressure go up. Apparently it works. It actually gives them a big performance bump, but is of course not very safe. Using midodrine does the same thing without the danger of dysreflexia.
Who should get midodrine? Someone who doesn't get relief from wearing a belly binder, because it's never a good idea to start with the drug. Potential side effects are AD, headache, gooseflesh, urinary retention, allergic retention. If you take it and then lie down, these things are more likely to happen.
Another drug: Clonidine
It's an old-fashioned drug that was originally developed to treat hypertension. It's similar to Zanaflex. Some people experience more side effects, some get more benefits. it can have a paradoxical hypertensive effect . . . in a normal person the blood pressure will drop with this drug, but in some people with sci, the drug raises the blood pressure. Sometimes it's used to treat drops in blood pressure with standing or walking.
Some studies (not controlled and rigorous) have shown that it helps a very significant percentage of people with sci who have spasticity.
Showing a slide that references a study by GUERTIN in 2009 that showed benefit of other drugs in walking, but not clonidine.
Basically with clonidine, it's a mixed bag. Some people experience it like fairy dust, some have a bad reaction, but the scientific community has not landed on any coherent explanation of why, in either case.
He concludes by saying that the optimal treatment means a comprehensive subspecialty care regime plus a good therapy program.
Very good stuff -- informative and clear.
I want to show you how to make the most of intensive treatment; for the record I have financial support from the Pfizer institute.
Our strategy #1 is to figure out how to optimize muscle strength. Everybody knows that sci causes severe loss of muscle bulk, and there are often metabolic changes that cause rapid fatigue, especially in weight-bearing muscles.
One reason for this is that hormones change after sci . . . men lose a lot of testosterone, and many of them suffer from Low T syndrome. They have decreased energy, sex drive, energy -- but check with your doctor & find out if this is affecting you.
If you have low T, get some. If you don't, think about a hormone called oxandrolone. It's been studied in men with HIV, helping improve strength, endurance, sense of well being . . . also in a study of patients with burns, who had an average of 28% lower hospital stays. The results were so good that they stopped the trials early. The drug increases protein build up. Another doctor worked with patients how have decubitus ulcers and found benefit for them.
This drug is powerful but not necessarily benign . . . there are multiple potential side effects, including liver damage, hepatic tumors, lipid changes, acne, oily skin, mood changes, trouble sleeping, trouble urinating, breast swelling, prolonged erections, deepenng of the voice, unusual hair growth, allergic reactions.
If you choose to take it, you need regular liver testing to make sure you're not one of the small number of people who end up looking like the person on the screen -- a grossly over-steroided guy with bicps bigger than his head, and don't even get me started on the shoulders.
Strategy #2: optimize the heart function. When you first get an sci and then try to get out of bed you pass out. This gradually goes away over the first several months. Your blood pressure drops when you go from lying to sitting or from sitting to standing. There are some people who just can't tolerate getting into a standing frame, though, ever. There are also people who experience what they call exertional hypotension, which is getting very low blood pressure due to exercise.
If either of those is you, there is a drug called Midodrine that has been shown to improve activity tolerance and uprightness tolerance.
It also helps with exertional hypotension. There are quad athletes who do a thing called "clamping" -- which, yeeks! -- clamp off the foley to make their blood pressure go up. Apparently it works. It actually gives them a big performance bump, but is of course not very safe. Using midodrine does the same thing without the danger of dysreflexia.
Who should get midodrine? Someone who doesn't get relief from wearing a belly binder, because it's never a good idea to start with the drug. Potential side effects are AD, headache, gooseflesh, urinary retention, allergic retention. If you take it and then lie down, these things are more likely to happen.
Another drug: Clonidine
It's an old-fashioned drug that was originally developed to treat hypertension. It's similar to Zanaflex. Some people experience more side effects, some get more benefits. it can have a paradoxical hypertensive effect . . . in a normal person the blood pressure will drop with this drug, but in some people with sci, the drug raises the blood pressure. Sometimes it's used to treat drops in blood pressure with standing or walking.
Some studies (not controlled and rigorous) have shown that it helps a very significant percentage of people with sci who have spasticity.
Showing a slide that references a study by GUERTIN in 2009 that showed benefit of other drugs in walking, but not clonidine.
Basically with clonidine, it's a mixed bag. Some people experience it like fairy dust, some have a bad reaction, but the scientific community has not landed on any coherent explanation of why, in either case.
He concludes by saying that the optimal treatment means a comprehensive subspecialty care regime plus a good therapy program.
Very good stuff -- informative and clear.
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