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12-08-2008, 02:03 PM | #1 | |||
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In Remembrance
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Several things came together today that, IMHO, is a good example of why there needs to be a patient voice in the research world.
First, how many of you can crawl when you can't walk? We've never talked about it, but I bet that I'm not alone. The question is why? Is it as the study below speculates and that it is simply that the ability to walk is lost before the ability to crawl? If a researcher cared to listen, I would point out that 1) The ability to walk is still there when meds are working; 2) Dropping to all fours instantly frees up my entire stiffened up old body, including arms and legs, so the effect is not limited to walking; 3) My legs work just fine and do so immediately; 4) The sensation is one of relief from a struggle that instantly is all but gone. I could think of more if anyone cared to listen. But I've already said enough to show that the current wisdom of "poor guy unable to move because he has no dopamine" is dead wrong as is "unable to initiate movement" or "dead dopamine producing neurons" and goodness knows what else. Heck, I just threw the neurology textbook out the window, but they'll never know - because I'm JUST a patient. What set me off was that of the hundeds of thousands of studies and the countless dollars spent, one blasted study had even looked at the fact that we can crawl and it has missed the point and then dared to dismiss such an important observation as one of our "tricks". It's not a trick, it's an anomaly! And that is the most important thing in science, the "that's odd...." moment. <grump!> 1: Neurologia. 2004 Mar;19(2):77-9. [Freezing of gait or freezing of quadruped gait] [Article in Spanish] García Ruiz PJ, Rojo A, Sanchez Bernardos V, Romero A, Cubo E, Aguilar M. Servicios de Neurología, Fundación Jiménez Díaz, Madrid, Spain. pgarcia@fjd.es Parkinson's disease (PD) is frequently associated with freezing of gait. Patients with advanced PD learn to use tricks to relieve freezing of gait. Recently one of our patients informed us that he could overcome freezing of gait by crawling. Since crawling is a sort of quadruped gait that humans develop transiently, we wondered whether quadruped gait is preserved in PD.We recruited 16 patients with PD who had frequent and disabling freezing of gait. Under experimental conditions, after 12 hours without medication, seven patients developed biped freezing of gait. Of these seven patients, only two patients (the patients with the most severe freezing) also developed quadruped freezing of gait. This experiment suggests that bipedal gait is affected early in PD, while quadruped gait is preserved until late in this disease. PMID: 14986185 [PubMed - indexed for MEDLINE]
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | annefrobert (12-08-2008) |
12-08-2008, 02:39 PM | #2 | ||
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Senior Member
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I have read MANY places that the neurons in the SN are not dead, they are (pick which you like, the theories abound): dormant, atrophied, sick (whatever that means). Just as many articles say they are dead. They really have no idea, again.
Another great point, Rick. Have you asked your neuro about this phenomenon? |
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12-08-2008, 03:22 PM | #3 | |||
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In Remembrance
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(I'm sure you are all shocked ) and I fear that I am a "difficult" patient. I'm pretty sure that she doesn't want to discuss crawling with me.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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12-08-2008, 05:37 PM | #4 | |||
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In Remembrance
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Crawling hurts my knees, yet it is better for me to pray to God -
and ask for God's help, because I refuse to crawl to a human who cant help me, at all... because it slows down his meetings / gala's and I am have no silver or gold to buy my seat, when really - just a spot on the floor by a wall, would do... our collective PD brain is damaged not dead, perhaps our brain is starving to death, and nutrition is our best medicine... organically fed chickens - no monsanto crops fed with poison grain, no antibiotics for the cattle or chickens, if you eat poison - one of the first things that happens your immune system goes down, then you are also thrown off pH balance, if you become too acidic, called acidosis you will die, there isnt much you can do -even if you go to the ER my suggestion would be email President Elect Obama... if we all ask for the cure and autologus stem cell research and gdnf research, perhaps they would help the neuroscientist instead of giving money to FORD? stress causes the body to be more acid... be calm and ask the doctors if they crawled when they were babies? or was it just one of those baby tricks????????
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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12-08-2008, 07:28 PM | #5 | |||
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In Remembrance
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One must crawl before one may walk..
by chris A large part of rehab so far has made me realize that recovering from a spinal cord injury is a lot like being a baby all over again. You have to rediscover your body and how it works. And sometimes how it doesn’t. Parts wake up that you’d gotten used to being asleep, and I certainly know how a baby feels when it sits in place wiggling an appendage just because he or she can. I do that a lot too. I’ve felt since much earlier in rehab that regaining the ability to walk will quite possibly even more make me feel like a baby. When my physical therapist had me get on the ground and start crawling, though, I couldn’t help but laugh. I’ve never been one for patience. Patients, yes, I want those at some point; after appropriate training would be a good idea. Right now, though, the idea of having to wait a long time before I can walk is very frustrating. There are no certainties as to whether or not I will, in fact, ever walk again. But I try to stay hopeful as much as possible, even knowing that if I am to walk again, it is going to be a long time before it happens. I thought this would be a good time to write about the progress that I’ve made since my post about kicking people. http://sci.chrismcculloh.com/2008/06...-one-may-walk/ _________________ according to childhood educator Glenn Doman, a pioneer in the field of right-brain training, crawling forwards is an essential skill to master. Doman claims that crawling stimulates the brain to develop convergence of vision – and that as a result, children who skipped this phase as babies may find it difficult to learn to read and write. In addition, children who missed out on crawling may suffer from speech problems, he says – because the same part of the brain (the midbrain) controls both functions. In cases where a child has skipped the crawling phase, or did only a limited amount of crawling as a baby, Doman recommends practicing crawling every day for six months. To get a child who knows how to walk to do this, it will probably be necessary for her parents to get down on the floor and crawl around with her! (This should not be tried until two and a half to three years of age however, as before that, children are just too enamored with the newfound freedom of walking.) It may sound a little outlandish, but Glenn Doman mothers have attested to their success in improving a child’s speech simply by getting her to practice crawling. http://www.brillbaby.com/teach-baby/...ng-walking.php
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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12-09-2008, 05:20 AM | #6 | ||
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Member
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Quote:
Lurking, point is the Duck always maintained the Neurons didn't die, rather went into recession. If you are interested drag up some of his posts from BT and BT2, no idea if he knew what he was talking about but he sure was a confident man. Neil. |
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12-09-2008, 10:19 AM | #7 | |||
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then i got my DBS. Our dogs were thoughly confused!
my only contribution to this thread is one should wear knee-pads if they anticipate crawling alot, it can wreck your knees. Charlie |
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12-09-2008, 10:52 PM | #8 | |||
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I'm unable to crawl; can't even kneel because of awful knees (arthritis, the x-rays are scary). Had surgery on one when I was 17 so there's no cartilage there at all.
I'd have to 'crawl' on my rear end, pushing myself along with my legs and arms. I assume I can still do that, but I haven't tried in a long time. Rick, the article really said it was a trick? Doesn't jive with the abstract. |
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12-09-2008, 11:13 PM | #9 | |||
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In Remembrance
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"Patients with advanced PD learn to use tricks to relieve freezing of gait. "
I probably over-reacted over what was an innocent choice of words, but I still feel that an important point was missed. Sorry about the arthritis. I know you don't need that on top of everything else. That's another point in favor of turmeric, though. There's some good research backing that use too. Quote:
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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