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Thread: Live from Working 2 Walk 2010!

  1. #41
    Senior Member Schmeky's Avatar
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    According to Reynolds estimated time line to trials, the scaffold with hNSC's will go to trial for chronics sometime in 2013, or about 2-3 years away.

    So Davies has not made any mention of trials? Davies made a comment earlier in 2010 that a "big" result would be available before the end of this year. He has about 6 weeks left.

  2. #42
    Senior Member kate's Avatar
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    Cathy Larson from the Center for SCI Recovery PT program --

    BAsed in Detroit and in Grand Rapids, Michigan
    It's a high intensity, activity based, recovery focused approach to outpatient sci rehab

    She's clinician, an educator, a PT, and a researcher. The program she runs is PT driven, and monitored by PTs. They also have a lot of well-qualified athletic trainers, which helps them deliver the program at reasonable costs.

    PTs are pricey.

    The focus on everything they do is recovery. NOT compensation or adaptation.
    The idea is to engage the entire body while concentrating the therapy BELOW the level of the injury.
    Continually trying to seek out and apply new rehab strategies and equipment.
    Use rehab procedures that are evidence-based . . .

    So what's intense rehab?
    3 hour PT sessions, 3 - 5 times per week for a minimum of 3 - 6 momths.
    The duration of rehab needs to be much longer when attempting to promote neural recovery.
    The activities shoudl be novel, complex and weight bearing.

    Showing pictures of clients training with very non-restrictive devices (meaning smallest braces. Image of a young woman training in parallel bars in er wedding dress . . . she wanted to walk down the aisle.

    They do advance gait training -- not satisfied with mere walking. Need to be able to cut, take corners, jog.

    Pre-Gait training activities are crawling and tall kneeling walking, with thousand of repetitions. Thousands.

    Also work with closed chain weight-bearing. Trunk work, weights, therabands, boxing, wave plates (vibrating plates underneath your feet)

    Did a little study, with 23 subjects, time since injury was an average of 5 years, duration of therapy average about 6 momths
    14 complete, 9 incomplete injuries, half and half quads and paras

    outcomes:
    Tested asia motor every 30 days.
    She's showing that in just this minor program, these patients had an average gain of 5.5 points. Many people gained sitting strength.

    Sensory: NO Change.

    The basic message here . . . the more you can do, the better off you are. Some people get more back from their efforts than others, but everybody gets something back.

  3. #43
    Senior Member kate's Avatar
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    Quote Originally Posted by Schmeky View Post
    According to Reynolds estimated time line to trials, the scaffold with hNSC's will go to trial for chronics sometime in 2013, or about 2-3 years away.

    So Davies has not made any mention of trials? Davies made a comment earlier in 2010 that a "big" result would be available before the end of this year. He has about 6 weeks left.
    I caught that too, Schmeky . . . as did many others. When I asked him about it, Stephen told me last night that his paper is under peer review as we speak. I take that to mean it's out of his hands when the thing makes its debut in the world, and I know that he's constrained from giving details until it gets accepted.

    I felt odd yesterday, writing the same information we had from his lab last year . . .

  4. #44
    Quote Originally Posted by kate View Post
    I caught that too, Schmeky . . . as did many others. When I asked him about it, Stephen told me last night that his paper is under peer review as we speak. I take that to mean it's out of his hands when the thing makes its debut in the world, and I know that he's constrained from giving details until it gets accepted.

    I felt odd yesterday, writing the same information we had from his lab last year . . .
    ...tell him I am a bit disapponted too... & show him my FB profile photo ;-)
    In God we trust; all others bring data. - Edwards Deming

  5. #45
    Senior Member kate's Avatar
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    Nutrition breakout session with Susan Testa

    You can use food and nutrients (conceptually) in the same way that you use physical therapy . . . outcomes would be things like fewer uti's, better blood sugar levels, better neurotransmitters. Think of bringing cells together to make tissue -- and adding up tissue to make organs -- and all the way to the body system.

    What does a cell membrane do? It communicates. What if you eat a ton of fried foods, like in Big Macs? What if you eat more veg oils than fish oils?

    Americans eat 7 to 1 veg oils; ratio should be 3 to 1.

    Result is that your cell membranes are more rigid, not as good at communicates.

    What about mitochrondia? if you don't have enough B-complex vitamins in your system, you

    What's got B-complex in it? Egg yolks-- yes, eat 'em. Also leafy greens, cream, whole milk, and butter. (Yay! I like this nutritionist.)

    Also need sulfur, as in brussels sprouts

    Also need to feed the DNA.

    We're talking about cellular recovery.

    What does vitamin D do? Helps drive calcium into the bones . . . but it ALSO helps the integrity of the nervous system. It makes white blood cells. You have to be under the sun at midday for at least 20 minutes every day in June and July to get enough.

    You need it; she sees people every day with levels of D between 10 and 25 -- should be 50.

    Ought to get it checked, because it protects nerves, immune system, and muscles.

    Fiber is important for bowels, but also for mood, prevention of plaque. 2 different kinds -- the one that keeps you regular, like wheat bran, and oat bran. Should mix them.

    The biggest thing that takes out people with longterm sci is heart disease. How to not be a victim of that? it ain't cholesterol. You get dietary cholesterol from seafood, dairy . . . all good stuff. There are tons of studies out there saying there is NO correlation between choleresterol and heart disease. The danger is in frying things over and over and over. Oxidized fats are the problem.

    If you don't eat a lot of vegs and fruits, you're setting yourself up for heart disease. People with sci are pre-disposed to having low levels of anti-oxidants, according to a lot of studies. Low in vitamins A, D, C

    People who smoke, drink too much alcohol, eat too much fat get little tears in their veins. White blood cells rush in to fix the tears, just like they do if you scrape your finger. Then the whole wall of your vein gets inflamed. Cholesterol is floating by, which is what it's supposed to do . . . it sees the inflammatory sites & wants to patch them up.

    The more it does that, the more the wall gets thick . . .and eventually closes. That's vascular disease.

    What to do? Avoid those things that damage the walls, and add in a lot of anti-inflammatory food.

    That's what anti-oxidants are about. 3 vegs and 1 fruit every day. Fruits can boost your blood sugar. They raise insulin levels. The body was made to eat whole foods (not processed). The apple with its skin is very different from the can of juice. If you drink whole raw milk, you get all the stuff that's in milk -- if you drink skim, almost everything that you need from it is gone.

    Is soy milk a good substitute? Not really.

    (Where to buy the right stuff? How to afford it? How to keep from getting fat if you eat all this butter & cream?)

    Eat this: fatty fish, like salmon, mackerel, tuna -- organic, no pesticides, no hormones. You want grass fed meat and chicken, free range -- eat from the farm, and not from a factory. You have moderate amounts of real fat, and you don't need to binge on chips.

    Something happened in 1945 - 1950 . . . it was called Crisco, and all the other kinds of hydrogenated fat. That stuff helps food stay edible longer on the shelf. So then vascular disease went up, and during the years between 50 and today, we've gone from 10% to 40% of people having vascular disease.

    What should a typical meal look like?
    Must have a protein in every meal if you have sci. You don't want your body to rob any kind of musculature that you have -- your body will steal from your muscles to get protein for your immune system. Put it in your diet instead.

    Nuts? Only as a snack. Like, after a workout, about an ounce, maybe 10 nuts. Protein and fat will stabilize blood sugar.

    Eat food. Food is what swims, flies, runs, walks, moves, grows. Food is what your great-grandmother would know is food. Think of that little tube of sweetened stuff called "yogurt" . . . would your great-grandma know what to do with that? If not, don't eat it.

    Try it for two weeks. After a couple of weeks, you'll be able to taste food, you'll sleep better, you'll be more alert, and -- you'll know that you're protecting your cells.

    Yep, yep. Also take a whole-foods-based multi-vitamin. That means not a synthetic one.

    EAch cell REQUIRES 50 nutrients every day? Where are you going to get them if you don't eat them?

  6. #46
    Quote Originally Posted by kate View Post
    Cathy Larson from the Center for SCI Recovery PT program --

    BAsed in Detroit and in Grand Rapids, Michigan
    It's a high intensity, activity based, recovery focused approach to outpatient sci rehab

    She's clinician, an educator, a PT, and a researcher. The program she runs is PT driven, and monitored by PTs. They also have a lot of well-qualified athletic trainers, which helps them deliver the program at reasonable costs.

    PTs are pricey.

    The focus on everything they do is recovery. NOT compensation or adaptation.
    The idea is to engage the entire body while concentrating the therapy BELOW the level of the injury.
    Continually trying to seek out and apply new rehab strategies and equipment.
    Use rehab procedures that are evidence-based . . .

    So what's intense rehab?
    3 hour PT sessions, 3 - 5 times per week for a minimum of 3 - 6 momths.
    The duration of rehab needs to be much longer when attempting to promote neural recovery.
    The activities shoudl be novel, complex and weight bearing.

    Showing pictures of clients training with very non-restrictive devices (meaning smallest braces. Image of a young woman training in parallel bars in er wedding dress . . . she wanted to walk down the aisle.

    They do advance gait training -- not satisfied with mere walking. Need to be able to cut, take corners, jog.

    Pre-Gait training activities are crawling and tall kneeling walking, with thousand of repetitions. Thousands.

    Also work with closed chain weight-bearing. Trunk work, weights, therabands, boxing, wave plates (vibrating plates underneath your feet)

    Did a little study, with 23 subjects, time since injury was an average of 5 years, duration of therapy average about 6 momths
    14 complete, 9 incomplete injuries, half and half quads and paras

    outcomes:
    Tested asia motor every 30 days.
    She's showing that in just this minor program, these patients had an average gain of 5.5 points. Many people gained sitting strength.

    Sensory: NO Change.

    The basic message here . . . the more you can do, the better off you are. Some people get more back from their efforts than others, but everybody gets something back.



    Here is a link to the publication

    http://www.ncbi.nlm.nih.gov/pubmed/20212365
    “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

  7. #47
    Senior Member kate's Avatar
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    Town hall meeting.

    What we'd like to hear from you is, when you leave here tomorrow, what's the one thing you're definitely gonna do in the coming months?

    We'd love to hear from you at any of our social media pages (u2fp, facebook, twitter, our newsletter).

    I'm planning a walk . . . working title is Dash for Disabilities.

    Good, keep us updated.

    Martin: I think that potentially a unique event has just happened. There's no place anywhere in the world where you can go to meet scientists doing the kinds of things we just heard about.

    Everyone who's involved in this is part of creating the future; you're a little startup where nobody is walking around in suits, but this is where the value gets created. At this level. Supporting the people here is important. This is like the guys in the dorms -- not the billion-dollar facebook.

    Stephen: What I'm going to do is go back to my lab and have renewed vigor to attack chronic sci. Hopefully what comes out of my lab and out of Dr. Wise Young's work will live up to the promises.

    Wise: I'm so proud of this particular group, and the questions you ask, and the way you look at the science with critical eyes, and for the first time I feel like this group is THE advocacy group that knows what sci is all about. I was just saying that this group and this meeting will grow. The time will come when there will be thousands of people attending. Everybody here should be so proud of taking part in this and in having made it happen. When all the results come to fruition, let's have a giant party. Thank you.

    I'll stay motivated and try to motivate everybody around me. I go to the rehab institute in Michigan and I'm surrounded by people who don't think I'm gonna be in this chair for the rest of my life. I'm grateful to Wise Young and Stephen Davies and everybody who's making this happen. Let's make a freight train.

    Sue Maus: First of all I want to thank everybody for coming all this way; the reason we lose sleep the week before the event is the hope that what you've learned here over the last couple of days will get out into your communities. Tell somebody and tell somebody else . . . the blog has been going on for the last couple of days and we'll have that to see and remember what happened.
    Also like to thank our presenters and our sponsors. It truly is remarkable what the power of us can accomplish. Also need to thank all the volunteers: my sister Teresa, my husband Colin, my mom Janice (the bell-ringer!), my daughters Lauren and Megan, Donna's kids Matt and Melanie (aka Ken and Barbie), my good friend Kathy and Kendra -- and the u2fp board, David Zach, Rachel Harriman, Kate Willette, Donna Sullivan and Marilyn Smith.

    Reads from the CR quote on the wall: "So many of our dreams at first seem impossible, then they seem improbably, and then, when we summon the will, they soon become inevitable."

    When we had our first u2fp event 5 years ago, there was nothing happening. 3 years ago, it was, yeah, there's stuff in the pipeline, but nothing imminent. What I've heard over the last 2 days is that the pieces are coming together.

    We're entering the inevitable period!

  8. #48
    Senior Member kate's Avatar
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    Quote Originally Posted by paolocipolla View Post
    ...tell him I am a bit disapponted too... & show him my FB profile photo ;-)
    I'll look at your page; but wanted to be sure I didn't give the impression of being disappointed in him -- just that we're all eager to see the work & this would have been a wonderful place to hear the first announcement of it.

  9. #49
    Senior Member Schmeky's Avatar
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    Quote Originally Posted by Kate
    I felt odd yesterday, writing the same information we had from his lab last year . . .
    It's been the same information now for about 3 years. I think many have been expecting something else based on my visit to his lab 3.5 years ago. I feel we should hold researchers accountable, no matter who they are. I hope Davies pulls a rabbit out of his hat for the SCI community.


    Kate,

    I wanted to thank you for posting, I know it's exhausting and can drain you mentally. You bring the meeting into the homes of those that can't make the trip. Thank you very much.

  10. #50
    [QUOTE=Schmeky;


    Kate,

    I wanted to thank you for posting, I know it's exhausting and can drain you mentally. You bring the meeting into the homes of those that can't make the trip. Thank you very much.[/QUOTE]

    I couldn't say it better!

    Thank you Kate!
    In God we trust; all others bring data. - Edwards Deming

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