So has any anybody out there had the experience as part of a physical therapy approach of having your body stretched passively by others? It seems like such a no brainer that if people are having a hard time moving their limbs on their own, having someone else gently extend them and gradually increase the range of motion would be invaluable.

I am particularly interested to know if anyone has had work done specifically by either someone else guiding the limbs with their own hands - or else been directed to move themselves - from the very periphery of the body.. In other words, moving by initiating the movement from the fingertips or toes...I have found this enormously helpful to relieve dystonia, and am now working with it more consciously to rebuild sensation and expand movement range. Does anyone know what I'm talking about? Like if you take a crunched up piece of elastic and try and stretch the middle out, you won't get very far. However, if you pull on both ends, then it will stretch to full range beautifully.

I have a hunch that working this way is greatly feeding and rebuilding important sensory neurons, and healing a broken sense of one's own kinesphere.

But, no, I have not had the experience. However, I do think that you are looking in a very promising area.

Each morning as the meds begin their dance, I come to a point where if I stretch my arms and legs the progress will continue but if I do not I can lose the whole thing and face a miserable morning. I have assumed that at least two possibilities exist. One is the fact that stretching the belly or center section of a muscle causes it to, in effect, wake up and begin to respond to insulin. The other possibility is the fact that at the ends of the muscles are special stretch receptors that are activated by doing so.

It is, as you describe, as though I am lacking the essential feedback that tells me where my limbs are - sort of a "Lost in Space" feeling. While not as direct, I also find it a help to use a stiff brush on my skin to flood my senses. There seems to be some sort of threshold to be attained.

I wonder if any of these could be "simply" (Ha!!) release of dopamine in response to the physical pleasure?

Fiona, Rick, I have found stretches to help both V's stiffness and mine (caused by Lupus). It certainly increases mobility. It helps my pain too. We have a masseur come twice a week to work the muscles, and the relief, even if temporary is, we so appreciate. The stretches we do every morning. Religiously.

YES, Fiona, a fair number of people have worked with me to passively stretch my aching body. The first time, of which I have no articulate memory, just family lore, is when I was a baby. After I was (mis?/)diagnosed with scleroderma and written off by the docs, my mother discovered the value of stretching my tiny, cramping limbs when I would cry out in pain. According to her it was the only thing that helped.

More recently, in 2000 or so, I began having sciatica pain halfway through pregnancy. My midwife told me that there was nothing to be done and that it would subside only when the baby was born. When I related the story to my yoga teacher she laughed and asked if I was attached to that belief. I said absolutely not. Three sessions of intense psoas stretching later, the sciatica pain went away never to return.

Since developing PD, my massage therapists, physical therapists and speech therapist each spend about 1/3 of our visits helping me to stretch. When I miss an appointment, I really feel its absence. Try as I might, independent stretching does not net a fraction of the relief of assisted passive stretching. So much so that, when I taught yoga, I incorporated assisted stretching, having my students work in pairs for that portion of the class. So you might look down that avenue as well....there are lots of resources on "partner yoga" techniques. The sweet thing about this is that, once you learn/teach the technique (including how to know when enough is enough in a given stretch), PWP can work on their own free of charge between or in the absence of therapy.

Finally, after my grandmother Helen was diagnosed with YOPD in 1945, a famous visiting neurologist (Kornbleu from Germany, a possible relative of today's Dr. Kornbleu in Texas) suggested that her doc should "send a woman around" to her home to work on her legs. From the description my mother gives it focused mostly on Helen's legs and was completely passive. Apparently it was quite painful, so much so that, when grandma cried out in pain, my grandfather threw the (male, as it turned out) therapist out of the house, threatening to punch him in the nose! I thought of him when I kicked my poor midwife during labor, which was a first in her 20+ year career. Unless you have had someone tip your uterus, don't judge. Don't mess with our family...LOL.

Hope this helps. Love,
Rose

That's a great description, Rick! Me too. Last year I had described it (perhaps more Copernicanly) as the floor surprising me, meeting my foot earlier or later than anticipated....a little like walking in a rowboat. Isn't it annoying when the world doesn't conform to one's expectations? As if we don't have enough to process already...LOL.

You probably know that the mechanisms at play here have to do with proprioception. Trying to remember the precise spelling on that word, I just stumbled on two things that may be of interest:

The first is the more detailed than expected entry on proprioception from, believe it or not, Wikipedia. The info isn't as deep as that to which some of us are accustomed, but the scope is fairly wide for an introduction to the topic and contains jumping off places for additional research. See en.wikipedia.org/wiki/Proprioception

The second is really cool. Have you heard of this, Rick? This is from the 2009 International Symposium on Wearable Computers.

Potentials of Enhanced Context Awareness in Wearable Assistants for Parkinson's Disease Patients with the Freezing of Gait Syndrome
Linz - Austria
September 04-September 07
ISBN: 978-0-7695-3779-5
Marc Bächlin et al

DOI Bookmark: http://doi.ieeecomputersociety.org/10.1109/ISWC.2009.14
Freezing of gait (FOG) is a common gait deficit in advanced Parkinson’s disease (PD). It is often a cause of falls, interferes with daily activities and significantly impairs quality of life. Gait deficits in PD patients are often resistant to pharmacologic treatment; therefore effective nonpharmacologic assistance is needed.In this paper we show the potential of context aware assistance for PD patients with FOG and present our first results on start and turn FOG assistance using our modular wearable research platform. We developed a real-time FOG detection system which provides external acoustic cues when FOG is detected from on-body motion sensors, until the subject resumes walking. In an evaluation study, ten PD patients tested our device. We recorded over 8h of data. Eight patients experienced FOG during the study, and 237 FOG events have been identified by physiotherapists in a post video analysis. For the first time PD patients with the FOG syndrome were assisted by a context-aware wearable system. We report a high accuracy of freeze detection (73.1% sensitivity, 81.6% specificity, user independent). Based on subjective reports, the majority of patients indicated a benefit from the automatic cueing.We discuss how additional sensor modalities can paint a more complete view of the user’s context and may increase the system’s accuracy, decrease its latency, and eventually allow going from freeze detection to freeze preemption.

how are you sweetheart?
my journey of PD has lead me into creative poissibilities,
I talk to my limbs - I talk to my toes when they wish to become dystonic,
curl back, I will rub the toes and in between the toes and ask what is wrong -
the disturbance of the electrical pulse has been stopped as I have started this as of 3 months ago - using dmso cream with rose oil, and aloes -
my toes have actually become better and I have been able to,
crack the toes and dystonia stops, also if you cant walk because of akinesia -
your eyes are froze in a stare, so look around the room with your eyes - break the stare... and you will be able to move

I know that science and medicine have only partial information and much of it being old and incorrect...
their is much to do with the body with healing touch...
and happy hormones, and what we actually have faith to see happen
may become fact,

my son met Gene Wilder, and Gene smiled at him so very kind...
I loved the song pure immagination from - the original "Wonka" which for me will always be Gene Wilder...
the words to the song are very good, because even Eistein said -
the most important thing in dealing with many things is to stretch the imagination...
from Willy Wonka& the Chocolate Factory :
[Spoken]
Hold your breath
Make a wish
Count to three

[Sung]
Come with me
And you'll be
In a world of
Pure imagination
Take a look
And you'll see
Into your imagination

We'll begin
With a spin
Traveling in
The world of my creation
What we'll see
Will defy
Explanation

If you want to view paradise
Simply look around and view it
Anything you want to, do it
Wanta change the world?
There's nothing
To it

There is no
Life I know
To compare with
Pure imagination
Living there
You'll be free
If you truly wish to be

If you want to view paradise
Simply look around and view it
Anything you want to, do it
Wanta change the world?
There's nothing
To it

There is no
Life I know
To compare with
Pure imagination
Living there
You'll be free
If you truly
Wish to be ...

http://www.youtube.com/watch?v=RZ-uV72pQKI