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Live from Working 2 Walk 2010!

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  • #31
    Originally posted by john smith View Post
    The first is me and Leif
    The 2nd is Kate blogging
    The third is Leschinsky and her friends Jub with Dr. Young
    Thanks for the pics John and thanks for blogging Kate!
    “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


    • #32
      Can anyone ask Dr. Stephen Davies when is he starting trials?


      • #33
        Thanks Kate! Wish I was there!


        • #34
          Friday morning

          Marilyn gives a very warm (and well-deserved) intro to Donna, who has made this conference into a full time job for the last 6 months. None of this would be happening without her.

          Donna Sullivan: i think I was just promoted from bulldog to worker bee!

          Introduces Mark Smith, who's doing the keynote speech this morning. He was born with severe cerebral palsy and was not supposed to be able to do a thing ever. Ever.

          He's guy . . . check him out there.

          How are you all this morning. I'm mark Smith. You're not paralyzed.

          He's talking about how people who suffer from paralysis from all diffferent causes so rarely get together.

          Think about the famous people associated with each kind paralysis -- Reeve for sci, Fox for Parkinsons's . . do you see them together? The AARP has 35 million members, and that's because they include everybody over 50. What if we could form an organization that included all of us? That didn't require a certain cause of paralysis to get in the door?

          So what's a guy with CP doing here? Paralysis isn't condition specific, it's human specific. There are so many ways that what we face is exactly the same.

          Imagine that I and a guy with SCI go interview for the same job . . . do you think the HR person is going to say, geez today I had a guy with CP and a guy with SCI come in? No.

          He's gonna say, today I had 2 dudes in wheelchairs show up.

          Think of the power that we could have if we were all united . It would be a major paradigm shift. It would change the rules.

          In 1952, 58000 people got polio in the USA . . it's not a big number. Right now 11 million people have cancer. The jobless rate right now is 13 million people. . . how is this number one news story every single night? Why is it not on the radar that almost that many have cancer?

          How was it in 1952 that polio, with only 58,000 cases, was such a national priority? Go back to 1932 and look at FDR. He went on the radio and asked that every single person in the country donate a dime. 2.7 million letters with dimes arrived within a week.

          The president made polio a national priority. In 1956 we had a vaccine. by 1960 the polio virus was gone in the USA. An astounding feat --

          And yet as we sit here this morning there are a hundred times more people with paralysis than had polio in 1952 . . . why is it not a priority?

          Revolutions don't occur based on justice. Revolutions occur based on hope.

          I'm sitting here looking at people with hope.

          We're not looking a cures for individual conditions; we're looking at cures for a human condition (called paralysis).

          Wow, great guy!


          • #35
            Thanks Kate for asking those questions. That is what I thought. Just wanted to check because I really would like to be part of these new clinical trials. I am doing a vibration plate trial, at Mayo, for bone density. The lead doc. in that is leaving so I don't know how long or if the trial will continue.

            Agree on the great guy.



            • #36
              Frank Reynolds (inVivo Therapeutics):

              He's setting up his laptop . ..

              I'm Frank Reynolds, paralyzed in 1992 as a result of surgery, spent 4 months in the hospital. A few years later I realized that medical community wasn't going to help me. Was told, nobody ever recovers from your injury, get used to it.

              I'm gonna have to get myself fixed.

              Next day I bought a laptop, spent 2 years studying. Spent more years in a pool, my theory was that if I can move my legs there must be something going on there. In 2002 there started to be some good papers about physical activity and recovery. This was before the lokomat.

              I was just happy to be back in my life
              Kind of begged my way into they Ivy League
              Got a masters from Penn
              Director of global business development
              2005 asked to go to MIT for a year, really excited about the idea of taking a year off to study
              First thing was I met Bob Miner, who said, let's find a way to cure sci
              Formed invivo with him, he's a living legend
              Our approach is very different, we're not about getting monkeys running

              We look something beyond the cellular thing . . .yesterday 2 different people said that curing sci is now an engineering problem
              that's exactly right

              We use an anaolgy. When the planes hit the buildings on 911, the buildings stood, it was the fires that took them down. When the cord is damaged, the body is still okay . . . it's the secondary damage that takes it down.

              Looking at the list of very accomplished people who work for inVivo . .. check them out at the website I linked to above. These guys are real.

              Reynolds is talking about awards: I got an award irish life science from the president of Ireland, featured in march 200 and october 2009 issues of inc mag
              My partner Robert Langer, won the millenium prize, better than the Nobel.


              Their plan is to intervene before secondary injury causes the patient to be in a wheelchair for life -- this is obviously for acutes, he's got things to say about the chronic problem too -- later

              showing a video of an actual surgery, extreme close up of needles and an open wound.


              This kind of intervention needs to happen within the first 24 hours after surgery

              The next generation technology will inject the hydrogel . . . we can mirror the unfolding inflammation with a timed release, defeating secondary damage as it tries to occur

              Just published in the journal of neuroscience

              now i'm going to talk about something that everyone thinks is crazy

              if you can cut that scar tissue out, you can be in business
              we went down to the miami project . . you've got a a structureal problem
              if you can cut out the scar tissue, take all the bad out, bridge the healthy tissue . . .

              showing a monkey, first paralyzed, then 5 weeks later running around. he got a scaffold with no drugs and no cells.

              human pilot q1 2011
              10 acute contusion sci patients, sci shepherd center in atlanta

              5 years of our work in 20 minutes! !!

              Question: Have you thought about doing scaffolding without cutting?

              Question: How much of the effect of your scaffold is antiinflammatory? How do you see this technology moving into chronics?

              It's very important to understand that we're focused on the inflammation in acute sci. When we get to treating chronics, we'll rely on the use of cells. You're going to need a scaffold to seed the cells onto. Davies says that absolutely that we're going to need a scaffold.
              Reynolds says that the beauty of being a company is that we can bring all the disciplines together.

              Will file with the FDA in December.

              (Okay, I need to stop and make sense of this; it's very hard to keep up with the speed of the diction & constantly changing subjects & level of detail.

              Reynolds is a guy who had an sci himself due to a surgical mistake. He was lucky enough to have some return, made the most of it through ridiculous amounts of physical therapy, much of which he invented himself. Once he was mobile again (which took many years) he went back to school and got on with his life. He's a Boston up-from-scratch businessman, or at least that's my read. Very smart, very forceful, very brash. He's a big guy with a bald head wearing a dark suit.

              He happened to meet a guy named Bob Miner when he was in California, and they decided to take on the challenge of SCI. The approach they took is figuring out a way to stop the secondary damage that causes most of the crap-ola that is SCI . . . lost sexual function, pain, lost mobility . . . these things result from secondary damage. Could they make a product that was not meant to REPAIR that damage, but to PREVENT it from happening in the first place? They think they have.

              Think of this product as the sci version of those surgical sutures that are biodegradable -- no one has to take them out. When it comes to chronics, the idea will be as follows:

              1. Use this polymer scaffold to bridge across the site of injury

              That's the acute plan. Just the scaffold, using polymers already shown to be safe in humans. It's been remarkable in acute animal models, as the videos of monkeys he was showing demonstrate.

              2. Use cells (iPS or HESC) to promote growth, remyelinate, and/or regenerate in combination with the scaffold; do this after having cut away the "scar" in something analogous to the way oncologists cut away the cancer.

              That's the chronics plan. It's "a few years" away, as best they can figure.)


              You can see a video of him here.


              • #37
                Thank you very for this fantastic report.

                My regards from Hamburg



                • #38
                  Frank Reynolds

                  I believe this is the same gentleman previously discussed here.

                  "We have met the enemy and he is us."-POGO.

                  "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                  "Dream big, you might never wake up!"- Snoop Dogg


                  • #39
                    Lindsay Huisman, who has the world's most soothing voice.

                    She's done fundraisers for the cure, including one in Seatle last winter, where she and I and Marilyn did the Rock and Roll marathon . . . okay, she did the whole marathon, running, the rest of us did half of it walking. Way fun.

                    Started in home health and respite care, wanted to help people find resources, moved into sales, education, advocacy. Was for 4 years a suicide prevention counselor.

                    Worked at a center in NYC around 9/11 . . . what I found was that physical health is intricately linked to mental health.

                    Sedentary lifestyle is bad for AB people, and bad for sci people too. We know the drill
                    diabetes, heart disease, sores, weight gain

                    Are you physically ready for trials?
                    how can you be sure you'll meet the criteria to be included?

                    no active infections or pressure sores,
                    no metabolic condition,
                    no severe osteoporosis, extensive muscle atrophy,
                    no prior cell or tissue transplants

                    (says that someone suggested they might just not tell about a previous cell transplant . . . NO -- you can't keep information from your doctors or from scientists. ever.)

                    ultimate goal is be ready to walk . . .
                    always good nutrition, weight maintenance
                    healthy shoulders for weight bearing -- there will be a process that requires load bearing in the beginning
                    able to tolerate being upright
                    be physically fit for endurance and general health

                    take advantage of complementary therapies, which are things used alongside standard medical care, like yoga, meditation, etc.

                    so . . . staying in as good a shape as possible will do 2 things. obviously one of them is being a candidate for therapy. the other one is better quality of life, which = greater independence, better mental outlook, having peer support ..

                    unless you're buying a snuggie, one size doesn't fit all. what works for one person won't be right for someone else -- but each of us can figure out a routine and put the pieces together

                    routine is key; find equipment through craigs list, or adaptive sports sites
                    community matters: you need others who are in it with you
                    set goals, and figure out what motivates you.

                    long term goal: WORKING 2 WALK

                    some resources


                    basically, she's saying that it helps to surround yourself with positive ideas, positive people, and positive goals.


                    • #40
                      Thanks so much Kate.


                      • #41
                        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.


                        • #42
                          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

                          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.


                          • #43
                            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 . . .


                            • #44
                              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


                              • #45
                                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?