Parkinson's Disease Tulip


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Old 09-22-2006, 01:06 PM #21
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Default Keeping in mind that this is a work in progress...

...I think the answer would be that the same effect has been noted in both scenarios but I am not sure that it has been noted in the same person at the same trial. There seems, at least at this stage, to be a lot of variability in response but there are very few "no response" trials.

While I have taken to carrying a pair of bands in my hip pocket, the intriguing part is the possibility of a new avenue of research beyond the stat "SN-dopamine" route.

Anne has done the bulk of the research and has identified a couple of likely areas of the brain that might be the source of the effect, but in her absence I won't muddy the water with my attempts to convey her findings. Also, it would be of benefit to let you and others follow an independent line of thought for awhile to see where that leads if you're game.


Quote:
Originally Posted by The Godfather View Post
Does a cloth tied tightly around the wrist / lower forearm have just the same effect as a cloth resting on the wrist / lower forearm ?
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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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Old 09-22-2006, 01:52 PM #22
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Years ago I learned that if you are hurting anywhere you can alter the pain experience by using a pressure point somewhere else.

ex
When my legs ache and ache I can alter the pain by sticking my fingernails into my palms and that alerts my brain to the new area and takes the pressure off of the current one.

Just recently used it in hospital and it worked for me.

It's simply a matter of mind over matter lol
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Old 09-22-2006, 03:01 PM #23
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I can’t wait to give you my report from the front!!

Just by chance, I brought a brand new scarf to work to wear home, and it’s perfect! It’s very long and narrow, and is a very fine flat knit of half silk and half cotton. I wrapped it around my bad leg’s calf.

It was incredible. I left late, at 10:30 pm, and usually I walk poorly at that hour and need my cane bigtime. Last night I walked 3 blocks to the train without my cane, heel to toe! I kept saying, OMG, I can’t believe it, I’m walking!

I did have trouble initiating movement at the bottom of the stairs and when getting off the train, but after a few yards, I walked well again. Later on, getting off the bus near my home was difficult, and by gait was awful, but again, after a few yards, I walked much better!

My face is somewhat mask like; I don’t look in the mirror much because I don’t recognize myself. It’s really bad at night, and I have much trouble making a weak smile.

I wrapped the scarf around my head, covering my forehead. It looked nice! The effect was magical. My face changed so much! Like an instant face lift; I’m not exaggerating!
My face relaxed, looked peaceful, and my eyes opened up and looked bigger, and I was smiling immediately! Then I was grinning, easily!! I looked pretty. I stared at myself and emoted for about five minutes. It was amazing!

I also spoke out loud and I spoke better!

Then, I removed the scarf, and kaboom, it all went away. Absolutely incredible.

I have trouble tapping my finger with my right hand. I wrapped a shoe lace through my fingers, around and about, and I was able to tap for much longer and without my fingers becoming claw like.

I want to get another scarf like this one. I wonder if it will work on two areas of the body at once. I want to try it on my head and my calf.

The foot dystonia didn’t go away with the scarf but it wasn’t nearly as bad.

The scarf felt like a hug. Rick, I like your name Free, and I also like the name HUGGS, for “helps us get going smoothly”. Any other ideas?

When I arrived at work, the woman in reception noticed the leg scarf, and asked if I was being ‘cool’. I told her it was a neurological experiment. Then I showed her the youtube videos. Then I put the scarf on my head, and she was flabbergasted! Said she never saw anything like it in her life. She said she hadn’t seen me glow like that in years. I told her, I also FELT NORMAL, felt like myself again. Without the scarf on my head, I feel WEIRD.

I think we need to use something that makes us pay attention to it, or notice it, so it can work as a sensory cue. I always wear a hat outside, but I’m used to it, and it doesn’t help me at all. The scarf felt wonderful, like a sensory hug, and it worked immediately. My friend suggested I incorporate it into my head style, using headbands, etc. I’m going to work on that.

My scarf is great because it’s lightweight, and long enough to wrap around my body, or around a limb without bulk. I don’t have any slinky clothes, like citiknits. But they make long scarves in that fabric, and I bet it would work well for these experiments.

I’m so excited about this, I can’t put it into words. Thank you again, Rick and Anne. And Karine!

~Zucchini

Last edited by ZucchiniFlower; 09-22-2006 at 03:17 PM.
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Old 09-22-2006, 03:11 PM #24
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Quote:
Originally Posted by BEMM View Post
It seems to me that the slight but widespread pressure on the skin must realert the brain to the existense of the part of the body that is being touched. The touch wakes up the brain which otherwise progressively neglects or forgets or abandons one part of the body after another. Paralysis agitans is really a perfect name for this crazy dis ease.
That makes alot of sense to me. I don't think the scarf or shoelace restricts my muscles in any way. Instead it's like a sensory alert. I think it alerts a different brain pathway, which compensates for our missing internal cues. We need an external cue to get our motor system to behave properly.

When my face is masked, it seems like jaw muscles are pulling my face down. BUT, it's also true that the upper muscles of my face are not working as they should!

With a scarf on my head, the upper muscles work, and lift my whole face up, and I can smile, grin, again.
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Old 09-22-2006, 04:14 PM #25
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Default I'm amazed

I am amazed by all those positive experiments and reflexions! Anne will be back tomorrow but she'll probably have a huge amount of mail to read and things to do before she can post, but I am sure she'll be moved by all that reading. I think I should do some summary and translation of what's written here to share it with her mailing list too. Let's not drop it, try to explain it, why it works at least a short time, how it works and how to maybe make it last longer. I also noticed Anne's mask disappear on the video.

Regards
Karine

PS -ZucchiniFlower - nice name, beautiful flower, you haven't found that .pdf file you were talking about yesterday, perchance?

For The Godfather - I don't think the banding should be tight, according to the video and stories. But you can, if you want to, of course, try it in several "levels" of tightness and see what happens.
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Old 09-22-2006, 04:17 PM #26
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Yes, I have the pdf file and I can email it to you. The computer network at work is going down this weekend, and I don't know how long or when I'll be able to be on the net. You can private message me your email, Karine, and I can send it to you, when I can.

~Zucchini
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Old 09-22-2006, 04:22 PM #27
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Default Excellent report, Z'flower...

Your experience is that which is starting to sound "typical" with all the options. It does appear that "novel" soft stimuli are the key and that might be a clue given that novelty seeking behavior crops up around discussions of dopamine.

Not to stretch things too far, but thee is a possibility that two different things have been discovered here. The one described so well in Zflwr's post and another that I experienced when standing with bands on my thighs. I reported it earlier but, briefly, I found that the time that I could stand up while fishing went from a half-hour to four. The sensation was such that I believe that my muscles tensed slightly in response to the bands and my muscle tone was protected. The latter was protective and the former was corrective.
-Rick
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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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Old 09-22-2006, 04:29 PM #28
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Rick, I forgot to mention that my balance is better with the scarf on my leg. And my posture is much better as a result. I feel more stable, in general.

Way back in 2002, an orthopedist gave me braces to wear on my legs. The kind that work with velcro, and hug your legs, from calf to upper thigh. It was to stabilize my knees. I think basketball players use them.

I didn't need a cane when I used the braces. I felt much more stable with them on. At the time, I didn't know I had a neurological problem, too.

In addition to helping stabilize my knees, I think the braces were affecting my brain circuits which improved my overall gait.

I love your use of the word "novel". That's the ticket!


Brief Report
Insular dopamine D2 receptors and novelty seeking personality in Parkinson's disease

http://www3.interscience.wiley.com/c...5902/HTMLSTART
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Old 09-22-2006, 04:52 PM #29
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I found this relevant post here:

http://www.ttouchsa.co.za/main_frame...er_aug2005.htm

TTOUCH TIPS – BODY WRAPS FOR HUMANS!

Excerpts taken from : Body Wraps for People – by Robyn Hood & Phyllis Bauerlein
From TTEAM Connections Sept/Oct 2001

We have had some surprising feedback that the body wraps can have as powerful effects as doing the TTouches. If a person has problems with balance it is interesting to first have her try balancing on one foot and see how easy or how difficult it is. Repeat with the other leg. Put on one side of a full body wrap and repeat the exercise with each leg. Add a second wrap to the other side and repeat. Most people with poor balance or a weak leg or ankle find a significant improvement in their balance.

After wearing the body wrap for 30 – 60 minutes take it off. The amazing thin is that the feeling that was achieved with the body wraps seems to stay for several days – you can still feel where it was.

We have used the wrap with people who have had hip replacements and have problems with pain and walking in straight lines – it seems to improve their balance and reduce the pain.

Even if you don't have a physical issue you are looking for help with, the body wrap can give you a new sense of awareness of your posture. We have used a variety of wraps to wear while riding. The full body wrap may give a diagonal sense of the body and improve balance and symmetry of the rider.

Using the body wrap from the waist up brings your attention to the upper body and from the waist down the lower body. We are so habitual with our own movement patterns that we seldom think about them.

The principals of applying the body wrap are the same for people as for horses, dogs and cats. The idea is that the wrap will give you “feedback” not support so it should not be stretched.

If you have ever had to wear an elastic bandage for support you may have experienced it felt great in the beginning but achy after an hour or so – so be sure it is not tight. Wear it for short periods of time.

Try a variety of configurations – one may feel very unfamiliar and uncomfortable and another quite ok. If you can use pins to connect the wraps rather than tie knots it will keep the feeling of the wrap smoother and avoid any pressure points.

Phyllis Bauerlein, TTEAM & TTouch Practitioner Physiotherapist for people has used body wraps extensively with people who have a variety of issues. She wrote the following about how and when she uses wraps.

Applications of Body Wraps

Holding the wrap slightly off centre from its middle point lay it across the shoulder (e.g left). Bring both ends across the body (chest and back) to the opposite (right) waist. Do a cross over and bring both ends back across to the outside of the (left) upper leg.

Proceed to do crossovers down the leg and if the wrap length allows take one end under the arch of the foot and up to tie or pin both ends of the wrap. The reason for starting the wrap off centre from it mid point is so that both ends don't meet under the sole of the foot.

To do the entire body follow the same direction starting on the right shoulder.

NOTE: (For those who haven't yet experience a body wrap, it is simply an elastic bandage. We do sell them in the TTouch office, but just try a crepe bandage if you'd like. They don't hold their shape as well as they are thin, but you'll still feel an effect!)

Some people are uncomfortable with the wrap at first. This may be because it is creating new awareness and change in posture. Gentle encouragement or re-directed activities usually help.

Having the person perform some simple balancing exercises, such as standing on one foot prior to applying the wrap and then performing them with the wrap will show them the benefits.

The half body wrap may be good for people who have had cerebral vascular accidents (strokes). Generally I find the “full” wrap most beneficial where balance and co-ordination have been compromised.

My sense is that it helps to lower the centre of gravity and encourages groundedness, thereby balance is improved. This is particularly valuable for senior citizens. Rising from sitting is less of an effort and stairs are also easier while wearing a full body wrap.

Some indications for use:

- Parkinson's disease
- Strokes (CVA's)
- Multiple Sclerosis
- Menieres Disease (inner ear imbalance)
- Pain – particularly involving spine, hips and knees
- Arthritis
- Osteoporosis of the thoracic spine
- Restlessness
- Improve posture and body awareness (dancers)
- Autism
- Any neurological condition
- Increased movement for senior citizens
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Old 09-22-2006, 05:47 PM #30
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Article about sensory processing:

DogSense Article

Date: 2005-07-18
Title: The Sensory Side of Ttouch
Author: Kathy Cascade

http://www.dogsense.co.za/newsitem.p...5dd2576d3f3b38

"Another important aspect of sensory processing is how sensation is carried through the nervous system to specific areas of the brain. There are separate pathways that carry specific sensations. As a student in PT school I had to memorize these pathways with weird names like the Spinothalmic tract, which isn't very useful to anyone! We really only have to remember the two general functions of the pathways.

One pathway carries protective sensations of pain, temperature, and light touch. The other pathway carries discriminative sensations like pressure touch, proprioception, and vibration. When we look at the difference between the two pathways in the chart below(only available on PDF format), it is interesting to see how the sensations associated with TTouch (pressure touch) and Groundwork (proprioception) appear to be carried by the Discriminative Pathway, and result in the type of responses we often observe in the animals we work with.

From the chart we can also see why the body wrap may have such a significant effect on animals in terms of increasing focus, calming, and improving body awareness. When applied to an animal or person, the body wrap provides pressure touch, as well as enhancing the brain's perception of where the body is in space."
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