Can you feel it? Parkinson’s, the emic approach


#1
In Anthropology the term emic is used to describe a society from within. By means of participating observation, the researcher tries to understand a group of people from the inside. This brought me to the idea that maybe it would be fruitful to apply this concept to the problems posed by Parkinson’s disease. Medical researchers have a lot of precious tools at their disposal, but these all operate at the outside. Patients can feel the pain or annoyances a disease causes. Of course a doctor or a researcher will pose questions to the patient. This could work well if you know what a disease is like. If however there is a lot that is not known of this disease and a patient is able to wander through his disease, he can add substantially. He should be trained to describe as accurate as possible what the nature of the symptoms of PD is. I’ve tried to do just that and it made me doubt seriously about the current levodopa theory.

The method I use to investigate PD is that I ask the same question, over en over again: “what do I feel when I do something” . This one of a series of articles where I try to describe the feeling of PD. I hope this will bring field professionals to ideas to solve the mystery and conquer Parkinson’s disease.
During the night I don’t take any medication. Early in the morning, when I rise, I often have the impression my Parkinson’s disease is almost gone. I can stand on one leg an put the other foot in my pants. I can turn my head to the left, and immediately after that to the right. I can open my hand an close it again. Sadly enough this favored condition doesn’t last much longer than half an hour.

If I don’t take medication my condition will change fast. It is getting harder and harder to move. The first symptom I usually experience is that my tongue starts to quiver. From the survey “images of parkinson’s disease” I know other patients do not have this as a premier symptom. Soon after that, walking will be difficult, my face will get stiff. I will not be able to stand up from my chair, and if I stand my right leg will suddenly not be able to carry my weight causing me to fall.

I usually avoid this second state by taking medication. About 20 minutes after I have taken levodopa I enter the “on”-state. I can move again hooray! But this kind of movement isn’t quite what I expected. It is so overdone. If I move my head to the left, this will work, but if I want to move my head to the right after that, this seems impossible. The muscles of the original movement won’t give in. The muscles that want to cause the rotation in the other direction, have to use brute force to accomplish this. In fact all the “to and from” kind of movements, except pedaling on my bicycle, don’t work properly. It’s is better than no being able to move at all, but it is not the relief I expected. By the way, the fact that pedaling on my bicycle goes wonderfully well, might be a key to understanding the mechanism. In pedaling you only have to push one leg. This action will return the other leg to the starting position, no antagonist needed!!

I will make an attempt to analyze what is happening to me. The thesis I want to launch, is that Parkinson’s disease has to do with a flaw in friction management. To hold the different bodyparts in a fixed position without using too much energy, friction in our muscles should be high. If, on the other hand, you want to make precise movements, friction should be as low as possible. The concept of friction in mechanics is important and it should be reckoned with when planning movement. Without friction, cars wouldn’t be able to ride or brake. Let’s do an experiment. I have an electric Philips shaving device. The power chord is twisted and curled making it more or less elastic. If you try to drag the shaver by pulling at the power chord, the power chord is stretched say 6 cm before the device starts moving. If the main electric switch is turned on and the shaver starts trembling, the power chord is stretched only 3 cm. It becomes much easier to move the object when this object is vibrating. This makes it much easier to make precise movements.

When you want to move a heavy chest it is easiest to do this with short, powerful pushes. It is hard to control how fast it is moved, but move it usually does.
If I am in the state where it is hard to move, strangely enough, I can run, I can play tennis or box with my son and perform reasonably well.
Vibration can be seen as a series of pushes in opposite directions. By adjusting the frequency and the force (amplitude) friction might be reduced to almost nothing.
Patients with parkinson’s disease often have a tremor that stops when a movement is going on. Could it be that a healthy person, who wants to make a move, trembles too? Possibly his tremor cannot be noticed because it is so quick. Someone with parkinson’s disease cannot make a “to and from”-movement fast enough (Dysdiadochokinese). The amplitude rises and the frequency lowers and the tremor becomes evident. So it is wrong to say that someone with parkinson’s disease has a tremor while in fact his tremor doesn’t function anymore. Could that be true?
If a parkinson’s patient is given levodopa, the friction of his movements is reduced. As this is not the real solution, the ongoing disease will demand that the friction will be lowered even further. The result is however that the movements lose their stability. They become gliding and exorbitant. The least effort will cause exaggerated movements called dyskinesia.
This article doesn’t solve the question why “to and from” movements no longer function properly. Maybe there is an expert in the field who will find some inspiration here. What I wanted to show is that a patient has a source at his disposal that is unique and that might be crucial in solving the parkinson’s mystery.

Further reading:
Van den Bosch, A.P.M.
The Dopamine Theory of Parkinson’s Disease, http://parkinsonhuis.nl/onderzoek/Th...%20Disease.htm
Christian Haas,
University of Frankfurt.
The effects of random whole-body-vibration on motor symptoms in Parkinson's disease.
Journal NeuroRehabilitation.
http://iospress.metapress.com/content/c9gvmedjj1mnk2e9/
Christopher Rickards1 and Frederick W. J. Cody
Proprioceptive control of wrist movements in Parkinson’s disease
Reduced muscle vibration-induced errors
Brain (1997), 120, 977–990
http://brain.oxfordjournals.org/cont...6/977.full.pdf

#2
These are some interesting observations, but I don't yet see how they challenge the dopamine theory of PD.
I too often get a short period in the middle of the night when my mobility improves slightly, although I generally still shuffle badly and have to hold onto door frames etc. for balance. I put this improvement down to residual drugs left in my body, but at low doses so they don't over-stimulate or clash. Mentally I feel quite good during that brief spell.
I also found in the past that I could sometimes cycle even when I couldn't walk (unfortunately, I have subsequently lost my confidence in cycling after several falls). I think I might always be able to pedal, but I can't start on the bike when my dopamine levels are low, and I get nervous about going downhill because I worry that I can't stop.
A few summers ago I got up before dawn and made my way to our garage slowly and with great difficulty. I got going on the bike and enjoyed a ride along the canal towpath watching the sunrise. I was doing fine and felt jubilant until someone stopped me to ask directions, and I couldn't get started again.

#3
.
Hi.

Almost every night during the small hours I go through a period of seeming to be completely non-Parkinsonian.

During the day, even when in what would normally be considered an "on" period, my mobility is still poor. I won't go more than a dozen yards from the house maybe, or leave my stick behind. But at night, for a duration of between an hour and 5 hours, It's just like my pre-PD days. If I had the nerve I'd be able to walk to the top of the street, hail a cab, go to the station and get on a train if I wanted to (Heaven forbid!). The only time I go through a full night without getting ANY "good" time is after a particularly stressful day.

When this "good" time is happening there is a great temptation to think that since the symptoms are decreasing in line with the utilisation of the drugs, the end game would be that no drugs at all should equal no symptoms, i.e. normality. If only! If I skip the early morning doses, WHAM! It's like walking into a brick wall. Thoroughly not recommended.

I utilise these periods of "good" time as best I can, but I certainly don't understand them.

Ray.
.

#4
To Passeggiata,
It is merely a matter of intuition. Picture the following situation: A certain patient has a substantio nigra where a lot of cells have died. This patient wants to lift an arm. The remaining cells try to produce dopamine to invoke the signaling to the protagonist and antagonist muscles to do their jobs. The dopamine produced however is not enough. Some of the muscles that should move or should stop moving do not participate and the movement is not what the patient intended. There are various possibilities that, in my opinion, cannot be explained by simply stating that there is a lack of dopamine. There is an immense difference in symptoms that often almost exclude each other, like freezing, trembling, dyskinesia, Dysdiadochokinese, muscular tension and stiffness. I suggest it might be useful to approach the subject as a system.
What does it take to make a moving system. First of all there must be a force, further an object. To move an object you must increase the force to the point that the friction is overcome. To move back, this force has to be shut off while a force in the opposite direction must be released. The new force again has to cope with friction. If you want to make small precise moves, the friction should be low.
Passeggiata, you look like me that you are at your best when it´s been a while since you´ve taken medication. I wonder if this could have something to do with friction management. There are at least two controls that could cause movement to fail. If the problem is the initiating of the protagonist muscles or the releasing of the antagonist muscle, lowering friction might just as well work. On the other hand, this affects postural stability and may induce involuntary movements.
What I would like is to form a group of patients who try to find out what type of Parkinson they have, and what effect medication has on various Parkinson symptoms.

#5
To Ray

What time is the beginning of your `good` time and did you sleep before that? What is the place of medication in your scheme?

Joop

#6
Yope, you raise some interesting lines of research. In developing your theory you might like to ponder why I (like several others) can nearly always pedal my bike or climb stairs, even when I'm otherwise immobile. Also, why I may be almost immobile but just able to walk by repeatedly stepping over the brush of a broom.

#7
A resting muscle shows thixotropic properties. Thixotropy is the property you see for example in tomato ketchup. Tip up a bottle of ketchup and nothing comes out; shake it and it will flow freely. In our muscles this property contributes to postural stability. If you want to move, the muscles in rest have to be shaken in a way. This could be done by a fast tremor that isn’t noticed normaly (This is speculation). Using this tremor the friction can be varied making precise movements possible. Swift movements are not affected so much by friction. It is much more difficult to move a heavy chest slowly.
The problem is in the “to and fro” movements. In riding a bicycle the legs push on turn bringing the other leg in the original position. In Playing tennis or running only fast beatlike movements are used.

#8
A few years ago, I experienced a couple of episodes on waking of being totally PD symptom free. I would hear my alarm, and virtually bounce out of bed, sprint (in PD terms) to the shower and conduct my morning ritual free of symptoms. I could brush my teeth and shave with my right hand. No tremor whatsoever! Eating breakfast, no problems. The first time I experienced this, it lasted just over 2 hours. I did not take my usual morning medication until after the symptoms returned, when I would normally take it first thing in the morning. I had one more episode like this, which lasted about an hour and a half. I had done nothing differently than any other day or night beforehand and it happened only after waking in the morning. I mentioned this to my neurologist, who could not explain it. It was like I was temporarily cured, I felt really good and it gave me some hope that maybe one day, they will find a cure!

Regards,

Andy

#9
On the german site PAOL (http://www.parkins-on-line.de/cms/showthread.php?30482-Can-you-feel-it-Parkinson’s-the-emic-approach ) where we’re having this same discussion. We found out that there were two very different scenario’s to wake up. If some patients don’t sleep during the night they feel extraordinary well the next day. Medication seems to work perfectly. It is a bit like what children have when they are deprived from sleep. There comes a moment that they are no longer tired but rather hyperactive. This hyperactivity resembles what some patients have.
You are hoping for a cure and so do I and I think a cure is coming soon. In my opinion the way to a cure is to recognize the functions that are failing in Parkinson’s disease. Apart from the dopaminergic system there is also the serotonergic system. Some years ago the stuntman Tim Lawrence by chance found out that ecstacy helped ease his symptoms. Because of the side effects this drug isn’t suitable as a medicine. Now some 10 years later a lot of experiments have been done with serotonergic medication resulting in new experimental medication that is capable to prolong “on”-time in combination with L-dopa. Furthermore, and this is probably the greatest gain, it reduces dyskinesia.
Right now they are still experimenting with rodents, knockout mice and drosophila’s. I hope they are ready before I need a dbs of the stn.
Joop

#10
i believe the difference between running and walking is that they use different parts of the brain which are affected differently by parkinsons

http://www.sciencedirect.com/science/article/pii/S1053811904002964

in particular walking involves more of the spacial visualisation areas which are particularly affected by pd.

i think this is an illustration of why your approach is totally wrong. we can not tell what is going on in our brain, an outside view is required. the emic point of view is not relevant in neurology except as minor additional information and not as a basis for theory.

none of the examples you give are actually inconsistent with the usual view on causation, unless a rather simplistic version of it is used as a strawman.

neurology is not a matter of simple intuition or close examination from a phenomenological point of view.

#11
Yes they use different parts of the brain, and if we just imagine a certain type of gait, the same area’s are activated as in real movement. Does that explain anything? At a certain moment the right muscles have to be stimulated. It is like explaining the difference between two cars by stating they are manufactured in a different factory.
Your rejection of my approach is in general terms. Of course an outside view is required but so is the retrospective view. It may not be very accurate but it is very flexible. If for example I cannot move my arm, I try to feel why I cannot move it. Is the signal not coming through or is the friction too high. If I imagine a powerfull blast, the arm suddenly moves. If I move to my massage chair and try it again, it is suddenly much easier to move my arm. In mechanics, friction is something you cannot deny. It provides postural stability as well as it prevents you from moving if you want to. And I can test it by switching from viewpoint.
I don’t care what you think neurology is like or should be like. What we need to progress is an open mind. I’m trying to learn about a disease and cope with it. Should I wait for the professionals and accept their excuses if they fail to find a cure?
Joop

#12
Hello Yope, I find your posts very interesting. Would you mind me asking what your profession is or was? Do you have a scientific background? Kind regards. Carole.

#13
Hi Joop
To use the car analogy, your approach is like trying to diagnose a problem by how the car drives - useful input but you really need to do tests inside the engine.
In this case the problem is in first gear not fifth, the first gear is affected by the proximity detector, the proximity detector ... analogies have their uses but are often misleading.
You mean introspective not retrospective, i think.
As you put it 'not accurate but flexible', its difficult to argue against a case where inaccuracy is not a problem.
We are dealing with the brain so of course it is affected by what we imagine - it is the brain doing the imagining. But if the problem is fundamentally to do with clustering of alpha-synuclein - we have no way of sensing such things or changing them.
I am afraid we do have to wait on the scientists.

Friction - is a very complex subject. But what exactly are you getting at? PD is a friction management problem? If the problem was in the limbs it wouldn't be affected at all by dopamine. I can't see it having anything to do with friction. Analogies with tomato sauce only confuse the argument.

I sympathise with your motives (please forgive if it sounds patronising) but I don't think you will get anywhere. It would be good if you did, but i will be extremely surprised.

#14
Joop
i won't be interfering in your thread anymore.

regards

#15
Hi butterfly,
Thank you, I am glad to know you are interested. You ask me what my background is. I think our postings should speak for themselves. That’s why I initially had some hesitation to answer your question. I am an anthropologist and I’m dedicated to the question of how people construct their reality.
Hi turnip,
I think it´s a pity you no longer participate in this thread. I already had formulated some answers to your questions:
Actualy I meant emic, certainly not retrospective, that was a mistake. Thank you for correcting me. I’m not a native speaker and I might surprise you with some unusual sentences
In my opinion there are two ways to approach reality. Analogies represent one method to understand our world. Things can look like other things but that doesn´t mean they are the same. An analogy can give direction to thought. It is a global way of thinking. It has to be confronted to a way of thinking that is based on direct relata. In Almost every science or system of thought you’ll find a division into these two ways. Examples of this division are dichotomies like Strategy/tactics, paradigm/syntagma, Homoeopathic magic/contagious magic the list is very long and always the global way is leading and has to be confirmed locally. Studies of neurologists Bogen, Gazzaniga and the Nobel-Prize winning researcher Roger Wolcott Sperry have demonstrated that the two hemispheres of our brain each are devoted to one of these two ways. The global, analogy-like way of thinking is never accurate. The local, direct-connection-like way is always accurate, but makes no sense in itselve.
Now back to the car analogy. If you go to the garage you have to formulate a problem that the mechanic can work with. For example you tell him that the car doesn’t move and that every time you try to put it into the first gear the car jumps forward and then stops. Let’s say the mechanic has an idea and proposes that you put the car in first gear and then start the engine. You try that and indeed the car is running on the starter engine. This resembles a bit what happens when a Parkinson’s patient gets medication. You are able to move but it just isn’t what it used to be.
You say PD has to do with clustering of alpha-synuclein. That in turn could have something to do with oxidative stress. This is a different level of investigating PD where you need a certain level of education. If you don´t have that education it is difficult to participate of course.
Friction is a physical phenomenon but Parkinson’s disease is also a mental disease. I think friction has a mental counterpart. In a way friction can be seen as a buffer configuration where a variable input leads to a constant output.
A friction management problem doesn’t mean the problem is in the limbs. It’s a failure of the management system to reach the place where the movement takes place.
http://en.wikipedia.org/wiki/Synovial_fluid
Synovial fluid is a viscous, non-Newtonian fluid found in the cavities of synovial joints. With its yolk-like consistency ("synovial" partially derives from ovum, Latin for egg), the principal role of synovial fluid is to reduce friction between the articular cartilage of synovial joints during movement.

Joop

#16
Dear Joop
I am an anti-anthropologist and dedicate a little of myself to rescuing reality from anthropologists and in-continental relativism!
I look forward to investigating your claims in detail and debunking them as best as I can with my meagre resources.

cheers
T

#17
Hello Joop
please be forgiving of the uk sense of humour.


Actualy I meant emic, certainly not retrospective, that was a mistake. Thank you for correcting me. I’m not a native speaker and I might surprise you with some unusual sentences
i should not have corrected your english.
In my opinion there are two ways to approach reality. Analogies represent one method to understand our world. Things can look like other things but that doesn´t mean they are the same. An analogy can give direction to thought. It is a global way of thinking. It has to be confronted to a way of thinking that is based on direct relata. In Almost every science or system of thought you’ll find a division into these two ways. Examples of this division are dichotomies like Strategy/tactics, paradigm/syntagma, Homoeopathic magic/contagious magic the list is very long and always the global way is leading and has to be confirmed locally. Studies of neurologists Bogen, Gazzaniga and the Nobel-Prize winning researcher Roger Wolcott Sperry have demonstrated that the two hemispheres of our brain each are devoted to one of these two ways. The global, analogy-like way of thinking is never accurate. The local, direct-connection-like way is always accurate, but makes no sense in itselve.
Now back to the car analogy.

there are many ways of thinking but yes those are two of the biggies. analogies look for patterns between situations and is often very useful, but can always be brought down to earth by testing, the other way makes perfect sense, most animals only have that means and manage quie well. my problem with your article was too much analogy and nothing else.

If you go to the garage you have to formulate a problem that the mechanic can work with. For example you tell him that the car doesn’t move and that every time you try to put it into the first gear the car jumps forward and then stops. Let’s say the mechanic has an idea and proposes that you put the car in first gear and then start the engine. You try that and indeed the car is running on the starter engine. This resembles a bit what happens when a Parkinson’s patient gets medication.

No it doesn't. Medication works by ingestion, into the blood stream and then flooding the brain with dopamine. there is no car analogy useful EXCEPT the problem is with the wiring not the mechanics.

You are able to move but it just isn’t what it used to be.
You say PD has to do with clustering of alpha-synuclein. That in turn could have something to do with oxidative stress. This is a different level of investigating PD where you need a certain level of education. If you don´t have that education it is difficult to participate of course.

So you ignore what is really happening and let everyone 'participate' in pretend?

Friction is a physical phenomenon but Parkinson’s disease is also a mental disease. I think friction has a mental counterpart.

Dualism! I shall put on my frock coat and perriwig.

In a way friction can be seen as a buffer configuration where a variable input leads to a constant output.

Buffer confuguration - another analogy sidetrack.


A friction management problem doesn’t mean the problem is in the limbs. It’s a failure of the management system to reach the place where the movement takes place.

I couldn't help but be reminded of the old heineken adverts, sorry.

http://en.wikipedia.org/wiki/Synovial_fluid

Synovial fluid is a viscous, non-Newtonian fluid found in the cavities of synovial joints. With its yolk-like consistency ("synovial" partially derives from ovum, Latin for egg), the principal role of synovial fluid is to reduce friction between the articular cartilage of synovial joints during movement.

Shouldn't this be on the arthritis forum? I can see movement as being a possible help, but not in contradiction to the current medicalpoint of view. This is the tomato sauce again isnt it? i have completely lost track of the argument (I hasten to add i dont see that as my fault!). Looking forward to a concise non-metaphorical 60 word description of what your theory is?

ps i responded because its fun, if you are not enjoying our little discussion i shall cease.

best wishes
T

#18
Go Yope and Turnip!!! Got to say I am enthralled, keep up the good work Guys, I love it. Yope, where are you a native of? I ask just because I'm nosy, please forgive, no offense intended!!

Glenchass

#19
Hello Turnip

You are able to move but it just isn’t what it used to be.
You say PD has to do with clustering of alpha-synuclein. That in turn could have something to do with oxidative stress. This is a different level of investigating PD where you need a certain level of education. If you don´t have that education it is difficult to participate of course.

So you ignore what is really happening and let everyone 'participate' in pretend?


A different approach or viewpoint doesn’t mean you ignore what is really happening. The same reality van have several layers, several levels of abstraction. Do you know the The Open Systems

==========================================

Friction is a physical phenomenon but Parkinson’s disease is also a mental disease. I think friction has a mental counterpart.

Dualism! I shall put on my frock coat and perriwig.


Dualism is when you claim that mind nor matter can be reduced to each other in any way. What I claim is the unity of physical and mental symptoms. At a certain layer they will the same thing.
==========================================

Looking forward to a concise non-metaphorical 60 word description of what your theory is?


I’ll give it a try:

When you move, you have to deal with friction. The force You use to move something has to increase until the frictioncoefficient is reached. Then suddenly the force is too great and has to decrease rapidly. But an erroneous movement has already been made. The force is decreasing till suddenly there is friction again and movement stops. An example of this kind of movement is the cogwheel phenomenon. I you do the above experiment with a vibrating device attached movement becomes far more precise. I predict that on a powerplate with the right frequency, a cogwheel phenomenon will be greatly reduced. 101 words, I have already exceeded my limit

I like discussions like this. Makes me sharper in expressing myself.

Please join us

best regards,

Joop

#20
Hi Glenchass,

Thank you for your enthousiasm. I'm Dutch.

Joop