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I personally discovered the links between Parkinson’s Disease, music and dance. I was the only person I knew who knew what I knew. Then I went on that new-fangled electrical internet screen, and I found out there are other people who have known about this for some time.
Thousands of people.
For decades.
Maybe much longer than that? Centuries? Take up thy bed and dance?
Don't know. But Dance Therapy was recognized as a profession in the 1940's. Imagine this: the American Dance Therapy Association has 1,100 members. Wanna join? Well, it's not one of those weekly group hug events on Thursday nights at 7 in the basement of the Unitarian Church. For you to be certified to be my dance therapist, I just have to show up; you have to first go out and get a Master's Degree, and then you do the internship: 3,500 hours of intensely supervised clinical internship, battling a full range of illnesses and injuries. www.adta.org These people are serious; like surgeons and doctors.
So, if during their entire career, 1,100 certified dance therapists each teach 100 Parkies to dance, that's one hundred ten thousand Parkies, right? That's a lot of witnesses. The scientists must have interviewed and polled the 1,100 dance therapists and many tens of thousands of people they helped, right? And all the dance therapists are now making millions on television, Dancing with Forgotten Formerly Famous Celebrities? I love those dancing shows. Very beautiful. And even in the small towns, dance studios are popping up everywhere. I wish they would go back to calling them dance halls. It is magnificent that dance is making such a massive world-wide come-back.
But are there things that ADTA members could tell us, maybe about what they observed about Parkinson's people, or what? Did the scientists ever come knocking? Has it all been disproved, because even with 1,100 dance therapy teachers, nothing worth mentioning resulted from it? At a minimum, we know that dance and music improve physical and mental health. For everybody. And is very important for Parkies. But if we take it much farther - work at it intensely year after year - is it possible to re-train the brain to go around the areas that are damaged and make use of the areas that Parkinson's is too chicken to attack: the parts of the brain that handle music and dance. ADTA: This space, flexible in size, is for you:
Lenore Hervey is a leader in the ADTA. She sent me Aviva Lori's article about Alex Kerten (Chapter 15) and lots more information and help over the past 4 years. She is head of a dance / movement department at Columbia College in Chicago. She has been a major source of encouragement to me over the years.
I also heard from several other members of ADTA, and from their colleagues in a few other countries, such as Australia, I have lost track of some and this computer has so many crash-landings, I think it needs some Mirapex. So some may have to e-mail again.
I heard from Donna Newman-Bluestein, who watches over some of the public relations for ADTA. She has a website about the musings of a dance therapist, at dancetherapymusings.typepad.com
This chapter is open for people who want to say something. Can be just a few sentences. Or more. The Editor is severe and selfish. And slow. And compulsive. But if you have witnessed something about all of this, or have something to say about it, there is space for you here. It does not have to be about a person or a life. It can be about most anything related to whatever this is about. A reader's question: isn't music enough? Why pay for a place for people to dance when all they have to do is sit down and listen to their earphones? Or what? I would say it is obvious that physical commitment increases the hit rate. And why not choose to dance and thereby listen to the music also? Another reader's question: are you going to judge art for the extent to which it reduces your medical bill? Utilitarianism run amok? And the care-givers... And the Zone. Parkinson's cannot find the door to the Zone. Parkinson's does not dare attack that part of the brain. People find it in different places. Jules Olitski found it in colours. He would faint in art galleries. In hockey, it's the high-speed break-away, one-on-one. Some people appear to stay in the Zone a long time, such as Margie Gillis dancing. The Zone is when, well, you know how to describe it better than me, if you are a dancer. We are open to the conclusion that it is all just a temporary burst of adrenalin, a last flash of dopamine production, or maybe it's only a placebo effect. So don't be afraid to tell us all the truth. Dancing is good, so is a shot of whiskey. But I still can't get rid of the sight of that woman, getting up out of her wheelchair, and dancing. And my friend who pretends to be Hank Williams. No symptoms during a two hour concert. Unable to climb stairs without falling down. There could be a lot of interesting things happen if the human race finds out that there was some sort of reason why every culture in the world had music and dance tens of thousands of years before they figured out gardening, or shelter, or clothing. The point is not that the ancients win the argument because they were first; the point is that they win the argument because they were right. Art started before Andy Warhol, which is why he never found it. Art started before we built mud huts. There is a reason for that. Maybe it is a very necessary thing, not just something they have to introduce the Oscars. Maybe you need it like oxygen and freedom and pizza. That would be interesting, to find out that it's not a good idea to throw away abilities that helped us to survive and grow for tens of thousands of years.
Probably there will be another chapter after this, to outline the complex organisational structure and rules and regulations of the Parkinson's Internet Underground Conspiracy. First we take Manhattan. Then we take Berlin. Not as easy as it sounds.
After that, other than a possible report from University of Calgary in the fall, I will be on shore leave at times, waiting for a miracle to come, or attacking the ecology with a chain-saw, for firewood. Aggressivity towards the ecology is another thing that can reduce my symptoms, but it wouldn't be the same website. People just aren't ready for that. But from time to time somebody like me has got to practice what he preaches, and right now I have to step back, observe the Beast and its strategy and tactics, and take a run at it again, fiercely. The Beast has been gaining strength. Alex Kerten was right about it being hard work. We tell you to go dancing, to find the Zone, to get exercise, to battle the Beast as if your life depended on it. But we neglect to tell you it's not enough to go to the local discussion-and-dance group every second Thursday night at 7. It takes a lot more than that. A lot of time and a lot of effort, and flexible strategies depending on how the Beast fights back by changing the nature and the intensity of the mixture of symptoms. Is this all nonsense? Are we all barking up the wrong tree here? Well, it can't harm anybody to dance and listen to music and find the Zone and remember what we forgot about Beauty. But if we really fight hard, day after day, does the brain begin to accept a strategy whereby we would win? Parkinson's does not touch the ancient, powerful part of the brain that handles song and dance. Parkinson's is chicken. It won't take you on where it might lose. But are we able to stay where we are winning? Can we decide which circuits in the brain are going to handle our e-mails to our muscles? We want to go around the burnt-out dopamine section of the brain with high-speed connections with immense bandwidth, and a wicked cool soundtrack. That's how we want Parkinson's to be dealt with. The Baby Boomers have arrived at old age. It's going to get loud.
Give war a chance.
This space is for you: adta. Whatever you want to do with it; it's cool with me. I am completely humbled that there are these people who consecrate so much of their time and their human being as human and as being, to helping poor wretches like me. There are these dancers, you know, a thousand certified, thousands more freelance, and you know, they help thousands of injured people to fight back with dance. Every day. They have this freedom to move their bodies and they can just go, but instead they turn around and help the ones who cannot move their bodies properly, because they, the dancers, know what it is like to fall down on stage, and they know what it is like to dance in a state of bliss where all your earthly pains disappear for awhile, and you see fireworks where there are none. There is an entire association of people who do that. It is staggering.
(to be continued)
OH, don't run away if you are not in the association and do not have the Master's Degree and the thousands of hours of extreme internship, but you teach dance or dance by yourself or use dance to heal the wounded - America is like that. You can put a sign on your door and proclaim yourself to be a specialist in something - it's freedom, folks. But amazingly, they are. They are specialists in something. The healing arts, for one thing.
There was a time not long ago when I was the only person I had ever known who had Parkinson's, and I explored the disease extensively in my home and forest and barn. And I formulated certain ideas about it. When a sabre tooth tiger is chewing on your leg, you tend to pay attention and try to, rapidly, ascertain whether or not there is something could stop this from happening. It is NOT a nice little puddy-tat.
So after some time I knew about 4 or 5 other Parkies on the internet, never meeting them, of course; in most cases not even knowing their real names.
And then I look wider and wider and people e-mail me stuff about dance and Parkinson's.. and there are LOTS of sites about it and there are THOUSANDS of people devoting their lives to teaching the wounded to dance; and there are TENS OF THOUSANDS of Parkies who have been up dancing, and there are MILLIONS of care-givers observing the situation every minute of every day - just ask my wife, Ursula - and there will be TENS OF MILLIONS of Parkie patients around the world when the whole Baby Boomer generation starts wrecking the old age system. Well, if fixing this is a major re-hab and it's not in the nation's budget, fine. But TRILLIONS of dollars in savings would be there instantly if we could cure a few of the major diseases. So if PD is too tough, then move on in your triage and cure some other disease; but if there is some reason to suggest that barricading Parkinson's into its burnt out bunker and then going to live in the part of the brain that defeated the sabre tooth tigers.. if that is a completey absurd concept, then chuck the concept overboard. But I would like to point out that there are an awful lot of witnesses. When you have thousands of dancers and dance therapists out there; and tens of thousands who have participated, do the scientists know what these artists know? And what do the aritists know. And what do the scientists know. About this one thing. About this one question. How come my buddy gets better when he is Hank Williams? I know it's probably just that he is a nut case; but there are many other witnesses; there are people who couldn't walk and can dance. So, you know, just lay it on us. The truth. It's the placebo effect, right?
But one of us might be wrong. There are many witnesses who say they saw something entirely new to them. They often cannot relay clearly to us what it was. But there are these moments when those who dance, begin to dance, and those who weep, begin. And it is the witnesses who are weeping, to witness such a thing. I tell visitors it is in the water. You can't fool us.
Dance for beauty, not for disease
July 4, 2009
So I asked for witnesses, and within a day Kate Kelsall sends me some very special, significant quotes; connected to Olie Westheimer and the world-famous Mark Morris Dance Group taking their madness and their method to other parts of the world: whereas I had told them, based on information received from a famous rabbi, that first they would take Manhattan, then they would take Berlin. For strategic reasons connected to serendipity and justice, the dancers altered this: first they took Brooklyn, now they are taking Colorado. Together with Barbara Willis, who created a similar dance movement for Parkinson’s in Colorado, without having met Olie and the Mark Morris dancers.
It’s from an article posted on Kate’s Shake, Rattle and Roll:
http://katekelsall.typepad.com/my_weblog/2009/07/parkinsons-dancers-focus-on-dance-not-disease.html
It is very significant because it shows that this movement is spreading across North America (hello Sarah Robichaud in Toronto) and around the world (hello Alex Kerten in Israel); (hello PD dance group in Barcelona); AND it follows the party line that we love at this website; a very important commandment: FOCUS ON THE DANCE, NOT THE DISEASE. Olie promotes that concept – dance for Beauty; the disease does not deserve such attention; you get to the Zone easier by entering into Beauty than by cursing an evil disease; Beauty owes us nothing, it has no job to do other than to be beautiful. This is part of a long civil war in the arts community (“Should art be beautiful or is the purpose of art to denounce the running-dog lackies of the bourgeoisie by promoting ugliness, despair and revulsion?”). Lots of Parkies, Jimmybear being one, do not show interest in that debate; but notice that the beneficial impact of dancing is greater when they are not dancing for the purpose of achieving a beneficial impact. You are aiming at the moon for its beauty and to see earth from outer space; if the scientists want you to collect some rock samples, you will, but that has nothing to do with why you are going to the moon, it just makes it easier to get financing because they want to say “Oh look at the moon rocks.” “These rocks came from the moon.” But I personally talked to a guy who had been on the moon and then went around giving inspirational speeches, and he was a geologist, not a space pilot, and he was all like, “What rocks?” It’s okay to go to the moon and get some rocks for your rock collection, and maybe the finance committee thought it would be diamonds or reveal the mystery of the universe, but it is not true that the people who went to the moon went just to get some rocks. That’s what they told people to get past the security guard.
“We are geologists looking for some rocks.”
If you are going to go through life making up alibis, at least make up something credible. There is only one reason to go to the moon: to personally, physically, at the risk of your life, travel through the majesty of creation and look back at the beauty of the earth and marvel that such beauty and danger can blast out of the big explosion that we part of – we have been called upon to witness the Big Bang – the earth is one more object hurtling through space as our entire galaxy still speeds away from the site of the original explosion.
They went to the moon to blow their minds. Same reason you dance. Not just because it is cost effective. But because you need to go back to the pre-verbal you, so you are so you, and your body remembers. If you dance for the disease, your body thinks disease. If you dance because you want to see the dark side of the moon today and the full moon tonight, and you want to beat on a drum and dance around the campfire… THEN your brain says, “Yeah, baby, let’s get it on.” Focus on the beauty, not on the disease. Can’t always do that, of course. Some days you just telephone to the world from a great distance and they do not hear what you are saying. But when you can…. you being so very you is contagious, even to yourself.
I am not inebriated (yet) so let’s make way for quotes from witnesses that Kate Kelsall sent me, and here is an additional point about the Brooklyn dancers and the Colorado dancers getting it on: Did Kate find this in Scientific American? Journal of Neurology? L.A. Times? Slate? The New Yorker? Vanity Fair? Le monde? Der Spiegel?
No, Kate found it in the New Bern Sun Journal, circulation 14,673, serving Craven County, North Carolina, since 1914, “just a three hour drive from Myrtle Beach”. Owned by Freedom Communications. Motto: “Keep the torch of freedom burning brightly”.
The article is by Brian Newsome – a concise and clear writer. “News-o-me”? Or “New-so-me”? New was so you and old was so me.
I don’t often get to visit the U.S.A., but what just happened is very American. Kate Kelsall, at Shake Rattle and Roll in Colorado; Willis in Colorado joining Westheimer and the world-class Morris dancers; news of this comes from Newsome at the New Bern Sun Journal in North Carolina; and Kate sends it to me in rural Quebec and I send it onward right here and now. America: infinite mixtures of fate and freedom. God bless America!
Kate conveys the hard line:
“You’re not going to observe any signs of apathy or depression in these Parkinson's dancers in Colorado Springs and Brooklyn. In fact, even talking about Parkinson’s Disease is forbidden in their dance classes. Their focus is on dance, not disease.” Yes, ma’am.
We asked for witnesses, and witnesses were sent. All of these are from the New Bern Sun Journal:
Witnesses: Willis & Westheimer:
Willis, a retired nurse who worked in neurology, and Westheimer, are both well-versed in science, as well as dance, and they say the intersection of performing arts and Parkinson's is not as strange as it might seem at first.
Dance requires an intense focus on movement, balance, vision, techniques…
"You'd never hear a dancer saying, ‘Oh, I use cognitive strategies to dance,'" said Westheimer, but that's exactly what they're doing
"Science is now beginning to understand what dancers know."
Willis said the "mindfulness" of dance and the power of music add something that other exercise does not.
Witness: Barbara Willis
"It's amazing how, if you have a tremor, it will disappear during this song," Willis,73, tells them. "These moves are difficult for us, but the music overcomes it.".. Her eyes are closed, and she seems lost in the music.
… all with the idea that they can use movement to combat a disease infamous for taking it away. "Parkinson's wants to take you and fold you in half and never let you go," Willis says. Every move is a way to slowly unfold again.
Willis' class was born out of her personal experience with the disease. A dancer since her youth, she was diagnosed in 1999. Her neurologist, impressed with her progress, urged her to start a class for others. Unknown to her, a similar program was taking place in Brooklyn, N.Y.
Witness: Olie Westheimer
Olie says:
"The aim of the class is to try to move as beautifully as you can."
"It sounds crazy, but it works," Westheimer said.
Witness: Margaret Schenkman
Margaret Schenkman of the University of Colorado, is leading a study…. whether dancing somehow helps repair the brain or somehow compensates for the disease's deficits… is a mystery. Some animal studies have linked exercise with reversing the progression of the disease, but what happens in animals doesn't always prove true in humans. Her study is at least a year away from completion.
Witness: Dr. Brian Grabert
… neurologist at Colorado Springs Health Partners, treats about 200 Parkinson's patients, including people involved in dance …says: dancing Parkies are more upbeat and less apathetic… having fewer falls, one of the most serious consequences of the disease as it progresses
Witness: Ric Pfarrer 55, financial planner and president of a Parkinson's support group, attends Willis' dance class. He said the chance to come together and have a good time can be as valuable as any physical benefit.
Witness Peggy Robinson, 60, "I like feeling like I'm not all alone."
At Westheimer's classes, in fact, talk about Parkinson's is not allowed because the emotional escape is one of its strengths.
"There's no problem talked about in our class," she said.
"We're just dancing."
Considering that 80 percent of Parkinson's sufferers have experienced bouts of depression and report feeling isolated, that's nothing to take lightly.
Grabert said apathy is one of the most common mood disorders associated with the disease, but that's not something he's seen in Willis and other Parkinson's patients who dance.
Parkinson’s dancers focus on dance, not on disease
http://katekelsall.typepad.com/my_weblog/2009/07/parkinsons-dancers-focus-on-dance-not-disease.html
Dance for Beauty, dance in the Zone where Parkinson’s, a cowardly disease, is too chicken to follow you. Forget your perfect suffering; do not dance for the disease, this rotten stupid evil disease does not deserve any such recognition. Focus on beautiful movement; don’t focus on the disease. And one more reminder: lots, not a little bit. Many hours a week, not just a few hours. With heart and body and soul, not half-heartedly. Fighting Parkinson’s requires of you much more than an hour a week with a support group. They say it takes 10,000 hours of practice to do anything well. Anything. Dance, playing an instrument, painting; carpentry, cooking, understanding history, architecture, hockey, getting physically fit, making wine from your home-grown grapes – the people who have done it for 10,000 hours are the ones you recognize right away as being the experts, the experienced, the leaders. Want to be really, really good at playing the piano? On any stage at any time? Commit to 10,000 hours. Minimum. For example, 4 hours a day, 6 days a week, for 7 or 8 years. Don’t expect it to require less commitment to fight a disease for which there is no known cause and no known cure.
Thousands of studies have been done about Parkinson’s. Especially about the drugs. (not to mention pickled herring). But has there been any study done about fighting PD with the same dedication – and commitment of time – as is routinely expected of a dancer or violinist or motorcycle repair man? The Harley dealer who can tell you everything about your machine just by listening to the engine? (Hello, Gray Theus) The guitarist who can join in and improvise live on stage with songs he hasn’t heard before? (Hello, Oren of Chatham Street) 10,000 hours of experience, training the muscles of your fingers to remember how to play the guitar.
There is instant coffee and powdered orange sugar that is supposed to make orange juice if you mix it with water, and they even have instant potatoes – I cannot imagine why there are instant potatoes; - and so patients expect instant cures, and the medical industry tries to provide them. Just take this pill three times a day. I am all in favor of pills and I am grateful for the drugs that help me cope with this absurd disease -- but when you have major movement disabilities, is there any reason to believe that you can fight that with minimal commitment? Is there any reason why that would take less time than learning to play the violin?
But I don’t think that has been studied. If you took a thousand Parkies and they fought the disease 4 hours a day; or more! Dancing, exercise, training the brain and muscles; and whatever other tricks of the trade can be learned from others: acting, martial arts, humour – I don’t know what all - but if fighting the disease became a full-time commitment, would the brain accept a winning strategy instead of allowing itself to be defeated by what is basically a very primitive and stupid and unnecessary disease?
Have there been any studies about that? No? Nobody has enough time. Here take this pill instead. Instant relief, instant high. Until your body chucks out the pills five years later. The five years, they call it the Parkinson’s Honeymoon, where it all goes great before Parkinson’s gets bitchy and ruins the marriage by ripping out the nerve and muscle communication systems that allow you to do some fairly vital things, such as swallow food.
Parkinson’s Honeymoon with levodopa? 5 year average before the side effects crush you? I don’t want a Parkinson’s Honeymoon for a marriage to a drug that turns against you after 5 years. I don’t want to be married to Parkinson’s. I want to kill the Beast.
It would be interesting to find out if Parkies could regain control of their bodies if they put in as much time and effort as if they were training for the Olympics.
Sparta, trained for strength and discipline and sacrifice; Athens expressing energetic creativity and individuality. Do both?
The rain has stopped and I think I will sit under the tree and have a beer with Ursula. That’s a good plan too.
Sparta for me alone; Athens for us together.
And the Olympic torch gets passed on.
Has there ever been a clinical trial like that? Planting the orchard, harvesting the oranges, squeezing fresh orange juice instead of mixing instant Tang with water? Because it is unlikely we can fool our brains and our muscles with quick and easy substitutes; instant pills and immediate gratification; we expect doctors to give us a miracle pill and we can go home and forget all about it. And believe me, I would be the first to swallow such a pill. I would take three of them. Instant relief. If you want Infomercials promoting Mirapex, I’m the spokesperson you need.
But with your brain becoming disconnected from your body, it is going to take some major efforts for rehabilitation, to get your brain back in communication with your muscles.
How many hours of golf did Tiger play before re-inventing the perfection of the game? How many hours did Manitas de Plata play guitar before the Gypsies gave him that name: “little fingers of silver”? How many times did Wayne Gretsky pass the puck in junior leagues before he shattered all the records in the major leagues?
John Lennon summed it up: “Christ, it don’t come easy.”
Doctors would not make themselves popular if they told you to change your way of living.
If you suffer from a major movement disability, such as PD, it may well be that you should be setting your agenda to train for the Olympics, for Carnegie Hall, for climbing Mount Everest. You will not get to do any of them, and maybe you will end up as a strong cripple rather than a weak cripple, but there is this possibility that your brain might surprise you by going along for the adventure. When you require your brain to spend hours every day rehearsing for your great performance – the day when you walk down Main Street without fear of falling, and go to a restaurant and know that you can hold a fork and swallow your food without choking, and then have a conversation knowing that your words will be understood. That, folks, would be a revolution. Wouldn’t it be funny if it just takes practice, like everything else?
Ah, probably all nonsense. I think I’ll have another beer. But send me some more witnesses ! And as Olie says, “Focus on the dance, not the disease.” Think about that, all the more so if you do not have Parkinson’s. Every symptom that I have, you also have; it’s just that mine are more extreme and mixed with other symptoms that change in intensity to a distressing degree. But there is nothing that I have that you do not have, except the intensity. Ever been extremely tired? Ever have painful joints? Ever been unable to sleep? Ever get dizzy and confused and forget names? Ever fall down very suddenly? And so on. Those are all symptoms that are normal except when they are not normal. So in your own life, learn from the Parkies, even if you are in full health. In business, in politics, in art, in fighting a cause, in getting married for better or for worse, in teaching children, in looking out at the history of the world and trying to fix up a few things for the future, remember: “Focus on the dance, not the disease.”
You are beautiful when you dance. Come over here by the window. Dance in the sunlight. Your shadow is dancing too. The reason why the sun came up this morning was to see you dance. There could be no better reason. And you can hand out little cards to people, warning them that it is contagious. Not the disease - that is not contagious. The dancing - that is VERY contagious. So focus on the dance, not the disease.
There is space here for more witnesses, if the spirit moves you:
(and thanks for all the fish).
Witness: Carl Hernz
Sometimes Bad Kitty doesn’t let me get more sleep after my cereal. Time to cry over the situation? No, sometimes Bad Kitty just wants me to enjoy another sunrise I figure. You know I missed practically all of them until I got young-onset Parkinson’s. They’re pretty wonderful, even when you don’t feel your best.
--Carl Hernz
http://www.apologysmology.com/
Bob says: Carl, that paragraph is a statement for the ages. Understated, powerful, like a long haiku. Your faith shines through; your generous spirit. And because of you, there are many people who now understand Bad Kitty Fridays.
Witness: Stanley Jordan
I've always wanted to do more than just making albums and playing gigs. I wanted a higher calling, higher than commercial or artistic success. If you can touch someone, really help their life, now that would be something special. Once when I was a teenager, I had a date to jam with a girl, Allison, who played piano. I almost canceled, because I had come down with the flu. We must have played at least 4 hours together, and at the end of the session, I felt healed. That memory always stuck with me. Then one day years later I met a music therapist named Donna Poland. Now I make stops during my concert tours to contact local music therapists and observe what they do. I talk with some of their patients too. This has been very rewarding to be able to see first hand how this work is helping people. Medical science is realizing more and more that the mind and body are linked, and that our thoughts can affect our bodies.
Witness: Joyce.......
Yes I want to dance, too.
Isn’t it great, the power of Music? I believe that if as much time and effort and research were spent on the things that help, and why they do instead of the pathology of this weird disease,we would be rid of it by now. So let us make a joyful noise and dance!
Bob says: Joyce, uhhh, is that Joyce Pinckney? What a social faux pas - I did not recognize you... and we were introduced by Dr. Bin Hu. Dear readers, I present Joyce Pinckney, soon to be published author of a Parkinson's story.
Joyce says: I have had my diagnosis for 14 years and I am fighting it all the way. Mostly with music ,arts, dance, writing, composing, and denial...
Former country farm girl from Saskatchewan, registered nurse ‘64’, Head Nurse on paediatrics Saskatoon University Hospital, mother, piano teacher, batik artist, belly dancer, jazz educator, player, writer of short stories and poetry. Composer of Jazz songs and teaching stuff for students . And now worthy opponent of Parkinson disease. Oh and I am also a grandma.
(Joyce's space; to be continued)
You may not always control how it ends up, but you can control your intentions when you begin. When you go through that door, begin with an open heart “Agape is disinterested love. … Agape does not begin by discriminating between worthy and unworthy people, or any qualities people possess. It begins by loving others for their sakes. … It springs from the need of the other person.” Martin Luther King, Jr. (1958)
Did Shakespeare use pesticides?
William Shakespeare (1564-1616)
second part of Henry VI:
Dick: "Why dost thou quiver, man ?
Say: "The palsy, and not fear, provokes me."
And there was a woman who for eighteen years had had a sickness caused by a spirit; and she was bent double, and could not straighten up at all. And He said to her, “Woman, you are freed from your sickness.” And He laid His hands on her; and immediately she was made erect again and began glorifying God.
Witness - Dr. Michael S. Okun
National Parkinson Foundation Medical Director.
Dance therapy seems to be proving to be a very useful modality for patients with Parkinson’s disease. In some magical way, dance seems to be able to override some of the abnormal brain circuitry in a subset of patients. What a miraculous phenomena to see someone who struggles walking, dance.
Thousands of people.
For decades.
Maybe much longer than that? Centuries? Take up thy bed and dance?
Don't know. But Dance Therapy was recognized as a profession in the 1940's. Imagine this: the American Dance Therapy Association has 1,100 members. Wanna join? Well, it's not one of those weekly group hug events on Thursday nights at 7 in the basement of the Unitarian Church. For you to be certified to be my dance therapist, I just have to show up; you have to first go out and get a Master's Degree, and then you do the internship: 3,500 hours of intensely supervised clinical internship, battling a full range of illnesses and injuries. www.adta.org These people are serious; like surgeons and doctors.
So, if during their entire career, 1,100 certified dance therapists each teach 100 Parkies to dance, that's one hundred ten thousand Parkies, right? That's a lot of witnesses. The scientists must have interviewed and polled the 1,100 dance therapists and many tens of thousands of people they helped, right? And all the dance therapists are now making millions on television, Dancing with Forgotten Formerly Famous Celebrities? I love those dancing shows. Very beautiful. And even in the small towns, dance studios are popping up everywhere. I wish they would go back to calling them dance halls. It is magnificent that dance is making such a massive world-wide come-back.
But are there things that ADTA members could tell us, maybe about what they observed about Parkinson's people, or what? Did the scientists ever come knocking? Has it all been disproved, because even with 1,100 dance therapy teachers, nothing worth mentioning resulted from it? At a minimum, we know that dance and music improve physical and mental health. For everybody. And is very important for Parkies. But if we take it much farther - work at it intensely year after year - is it possible to re-train the brain to go around the areas that are damaged and make use of the areas that Parkinson's is too chicken to attack: the parts of the brain that handle music and dance. ADTA: This space, flexible in size, is for you:
Lenore Hervey is a leader in the ADTA. She sent me Aviva Lori's article about Alex Kerten (Chapter 15) and lots more information and help over the past 4 years. She is head of a dance / movement department at Columbia College in Chicago. She has been a major source of encouragement to me over the years.
I also heard from several other members of ADTA, and from their colleagues in a few other countries, such as Australia, I have lost track of some and this computer has so many crash-landings, I think it needs some Mirapex. So some may have to e-mail again.
I heard from Donna Newman-Bluestein, who watches over some of the public relations for ADTA. She has a website about the musings of a dance therapist, at dancetherapymusings.typepad.com
This chapter is open for people who want to say something. Can be just a few sentences. Or more. The Editor is severe and selfish. And slow. And compulsive. But if you have witnessed something about all of this, or have something to say about it, there is space for you here. It does not have to be about a person or a life. It can be about most anything related to whatever this is about. A reader's question: isn't music enough? Why pay for a place for people to dance when all they have to do is sit down and listen to their earphones? Or what? I would say it is obvious that physical commitment increases the hit rate. And why not choose to dance and thereby listen to the music also? Another reader's question: are you going to judge art for the extent to which it reduces your medical bill? Utilitarianism run amok? And the care-givers... And the Zone. Parkinson's cannot find the door to the Zone. Parkinson's does not dare attack that part of the brain. People find it in different places. Jules Olitski found it in colours. He would faint in art galleries. In hockey, it's the high-speed break-away, one-on-one. Some people appear to stay in the Zone a long time, such as Margie Gillis dancing. The Zone is when, well, you know how to describe it better than me, if you are a dancer. We are open to the conclusion that it is all just a temporary burst of adrenalin, a last flash of dopamine production, or maybe it's only a placebo effect. So don't be afraid to tell us all the truth. Dancing is good, so is a shot of whiskey. But I still can't get rid of the sight of that woman, getting up out of her wheelchair, and dancing. And my friend who pretends to be Hank Williams. No symptoms during a two hour concert. Unable to climb stairs without falling down. There could be a lot of interesting things happen if the human race finds out that there was some sort of reason why every culture in the world had music and dance tens of thousands of years before they figured out gardening, or shelter, or clothing. The point is not that the ancients win the argument because they were first; the point is that they win the argument because they were right. Art started before Andy Warhol, which is why he never found it. Art started before we built mud huts. There is a reason for that. Maybe it is a very necessary thing, not just something they have to introduce the Oscars. Maybe you need it like oxygen and freedom and pizza. That would be interesting, to find out that it's not a good idea to throw away abilities that helped us to survive and grow for tens of thousands of years.
Probably there will be another chapter after this, to outline the complex organisational structure and rules and regulations of the Parkinson's Internet Underground Conspiracy. First we take Manhattan. Then we take Berlin. Not as easy as it sounds.
After that, other than a possible report from University of Calgary in the fall, I will be on shore leave at times, waiting for a miracle to come, or attacking the ecology with a chain-saw, for firewood. Aggressivity towards the ecology is another thing that can reduce my symptoms, but it wouldn't be the same website. People just aren't ready for that. But from time to time somebody like me has got to practice what he preaches, and right now I have to step back, observe the Beast and its strategy and tactics, and take a run at it again, fiercely. The Beast has been gaining strength. Alex Kerten was right about it being hard work. We tell you to go dancing, to find the Zone, to get exercise, to battle the Beast as if your life depended on it. But we neglect to tell you it's not enough to go to the local discussion-and-dance group every second Thursday night at 7. It takes a lot more than that. A lot of time and a lot of effort, and flexible strategies depending on how the Beast fights back by changing the nature and the intensity of the mixture of symptoms. Is this all nonsense? Are we all barking up the wrong tree here? Well, it can't harm anybody to dance and listen to music and find the Zone and remember what we forgot about Beauty. But if we really fight hard, day after day, does the brain begin to accept a strategy whereby we would win? Parkinson's does not touch the ancient, powerful part of the brain that handles song and dance. Parkinson's is chicken. It won't take you on where it might lose. But are we able to stay where we are winning? Can we decide which circuits in the brain are going to handle our e-mails to our muscles? We want to go around the burnt-out dopamine section of the brain with high-speed connections with immense bandwidth, and a wicked cool soundtrack. That's how we want Parkinson's to be dealt with. The Baby Boomers have arrived at old age. It's going to get loud.
Give war a chance.
This space is for you: adta. Whatever you want to do with it; it's cool with me. I am completely humbled that there are these people who consecrate so much of their time and their human being as human and as being, to helping poor wretches like me. There are these dancers, you know, a thousand certified, thousands more freelance, and you know, they help thousands of injured people to fight back with dance. Every day. They have this freedom to move their bodies and they can just go, but instead they turn around and help the ones who cannot move their bodies properly, because they, the dancers, know what it is like to fall down on stage, and they know what it is like to dance in a state of bliss where all your earthly pains disappear for awhile, and you see fireworks where there are none. There is an entire association of people who do that. It is staggering.
(to be continued)
OH, don't run away if you are not in the association and do not have the Master's Degree and the thousands of hours of extreme internship, but you teach dance or dance by yourself or use dance to heal the wounded - America is like that. You can put a sign on your door and proclaim yourself to be a specialist in something - it's freedom, folks. But amazingly, they are. They are specialists in something. The healing arts, for one thing.
There was a time not long ago when I was the only person I had ever known who had Parkinson's, and I explored the disease extensively in my home and forest and barn. And I formulated certain ideas about it. When a sabre tooth tiger is chewing on your leg, you tend to pay attention and try to, rapidly, ascertain whether or not there is something could stop this from happening. It is NOT a nice little puddy-tat.
So after some time I knew about 4 or 5 other Parkies on the internet, never meeting them, of course; in most cases not even knowing their real names.
And then I look wider and wider and people e-mail me stuff about dance and Parkinson's.. and there are LOTS of sites about it and there are THOUSANDS of people devoting their lives to teaching the wounded to dance; and there are TENS OF THOUSANDS of Parkies who have been up dancing, and there are MILLIONS of care-givers observing the situation every minute of every day - just ask my wife, Ursula - and there will be TENS OF MILLIONS of Parkie patients around the world when the whole Baby Boomer generation starts wrecking the old age system. Well, if fixing this is a major re-hab and it's not in the nation's budget, fine. But TRILLIONS of dollars in savings would be there instantly if we could cure a few of the major diseases. So if PD is too tough, then move on in your triage and cure some other disease; but if there is some reason to suggest that barricading Parkinson's into its burnt out bunker and then going to live in the part of the brain that defeated the sabre tooth tigers.. if that is a completey absurd concept, then chuck the concept overboard. But I would like to point out that there are an awful lot of witnesses. When you have thousands of dancers and dance therapists out there; and tens of thousands who have participated, do the scientists know what these artists know? And what do the aritists know. And what do the scientists know. About this one thing. About this one question. How come my buddy gets better when he is Hank Williams? I know it's probably just that he is a nut case; but there are many other witnesses; there are people who couldn't walk and can dance. So, you know, just lay it on us. The truth. It's the placebo effect, right?
But one of us might be wrong. There are many witnesses who say they saw something entirely new to them. They often cannot relay clearly to us what it was. But there are these moments when those who dance, begin to dance, and those who weep, begin. And it is the witnesses who are weeping, to witness such a thing. I tell visitors it is in the water. You can't fool us.
Dance for beauty, not for disease
July 4, 2009
So I asked for witnesses, and within a day Kate Kelsall sends me some very special, significant quotes; connected to Olie Westheimer and the world-famous Mark Morris Dance Group taking their madness and their method to other parts of the world: whereas I had told them, based on information received from a famous rabbi, that first they would take Manhattan, then they would take Berlin. For strategic reasons connected to serendipity and justice, the dancers altered this: first they took Brooklyn, now they are taking Colorado. Together with Barbara Willis, who created a similar dance movement for Parkinson’s in Colorado, without having met Olie and the Mark Morris dancers.
It’s from an article posted on Kate’s Shake, Rattle and Roll:
http://katekelsall.typepad.com/my_weblog/2009/07/parkinsons-dancers-focus-on-dance-not-disease.html
It is very significant because it shows that this movement is spreading across North America (hello Sarah Robichaud in Toronto) and around the world (hello Alex Kerten in Israel); (hello PD dance group in Barcelona); AND it follows the party line that we love at this website; a very important commandment: FOCUS ON THE DANCE, NOT THE DISEASE. Olie promotes that concept – dance for Beauty; the disease does not deserve such attention; you get to the Zone easier by entering into Beauty than by cursing an evil disease; Beauty owes us nothing, it has no job to do other than to be beautiful. This is part of a long civil war in the arts community (“Should art be beautiful or is the purpose of art to denounce the running-dog lackies of the bourgeoisie by promoting ugliness, despair and revulsion?”). Lots of Parkies, Jimmybear being one, do not show interest in that debate; but notice that the beneficial impact of dancing is greater when they are not dancing for the purpose of achieving a beneficial impact. You are aiming at the moon for its beauty and to see earth from outer space; if the scientists want you to collect some rock samples, you will, but that has nothing to do with why you are going to the moon, it just makes it easier to get financing because they want to say “Oh look at the moon rocks.” “These rocks came from the moon.” But I personally talked to a guy who had been on the moon and then went around giving inspirational speeches, and he was a geologist, not a space pilot, and he was all like, “What rocks?” It’s okay to go to the moon and get some rocks for your rock collection, and maybe the finance committee thought it would be diamonds or reveal the mystery of the universe, but it is not true that the people who went to the moon went just to get some rocks. That’s what they told people to get past the security guard.
“We are geologists looking for some rocks.”
If you are going to go through life making up alibis, at least make up something credible. There is only one reason to go to the moon: to personally, physically, at the risk of your life, travel through the majesty of creation and look back at the beauty of the earth and marvel that such beauty and danger can blast out of the big explosion that we part of – we have been called upon to witness the Big Bang – the earth is one more object hurtling through space as our entire galaxy still speeds away from the site of the original explosion.
They went to the moon to blow their minds. Same reason you dance. Not just because it is cost effective. But because you need to go back to the pre-verbal you, so you are so you, and your body remembers. If you dance for the disease, your body thinks disease. If you dance because you want to see the dark side of the moon today and the full moon tonight, and you want to beat on a drum and dance around the campfire… THEN your brain says, “Yeah, baby, let’s get it on.” Focus on the beauty, not on the disease. Can’t always do that, of course. Some days you just telephone to the world from a great distance and they do not hear what you are saying. But when you can…. you being so very you is contagious, even to yourself.
I am not inebriated (yet) so let’s make way for quotes from witnesses that Kate Kelsall sent me, and here is an additional point about the Brooklyn dancers and the Colorado dancers getting it on: Did Kate find this in Scientific American? Journal of Neurology? L.A. Times? Slate? The New Yorker? Vanity Fair? Le monde? Der Spiegel?
No, Kate found it in the New Bern Sun Journal, circulation 14,673, serving Craven County, North Carolina, since 1914, “just a three hour drive from Myrtle Beach”. Owned by Freedom Communications. Motto: “Keep the torch of freedom burning brightly”.
The article is by Brian Newsome – a concise and clear writer. “News-o-me”? Or “New-so-me”? New was so you and old was so me.
I don’t often get to visit the U.S.A., but what just happened is very American. Kate Kelsall, at Shake Rattle and Roll in Colorado; Willis in Colorado joining Westheimer and the world-class Morris dancers; news of this comes from Newsome at the New Bern Sun Journal in North Carolina; and Kate sends it to me in rural Quebec and I send it onward right here and now. America: infinite mixtures of fate and freedom. God bless America!
Kate conveys the hard line:
“You’re not going to observe any signs of apathy or depression in these Parkinson's dancers in Colorado Springs and Brooklyn. In fact, even talking about Parkinson’s Disease is forbidden in their dance classes. Their focus is on dance, not disease.” Yes, ma’am.
We asked for witnesses, and witnesses were sent. All of these are from the New Bern Sun Journal:
Witnesses: Willis & Westheimer:
Willis, a retired nurse who worked in neurology, and Westheimer, are both well-versed in science, as well as dance, and they say the intersection of performing arts and Parkinson's is not as strange as it might seem at first.
Dance requires an intense focus on movement, balance, vision, techniques…
"You'd never hear a dancer saying, ‘Oh, I use cognitive strategies to dance,'" said Westheimer, but that's exactly what they're doing
"Science is now beginning to understand what dancers know."
Willis said the "mindfulness" of dance and the power of music add something that other exercise does not.
Witness: Barbara Willis
"It's amazing how, if you have a tremor, it will disappear during this song," Willis,73, tells them. "These moves are difficult for us, but the music overcomes it.".. Her eyes are closed, and she seems lost in the music.
… all with the idea that they can use movement to combat a disease infamous for taking it away. "Parkinson's wants to take you and fold you in half and never let you go," Willis says. Every move is a way to slowly unfold again.
Willis' class was born out of her personal experience with the disease. A dancer since her youth, she was diagnosed in 1999. Her neurologist, impressed with her progress, urged her to start a class for others. Unknown to her, a similar program was taking place in Brooklyn, N.Y.
Witness: Olie Westheimer
Olie says:
"The aim of the class is to try to move as beautifully as you can."
"It sounds crazy, but it works," Westheimer said.
Witness: Margaret Schenkman
Margaret Schenkman of the University of Colorado, is leading a study…. whether dancing somehow helps repair the brain or somehow compensates for the disease's deficits… is a mystery. Some animal studies have linked exercise with reversing the progression of the disease, but what happens in animals doesn't always prove true in humans. Her study is at least a year away from completion.
Witness: Dr. Brian Grabert
… neurologist at Colorado Springs Health Partners, treats about 200 Parkinson's patients, including people involved in dance …says: dancing Parkies are more upbeat and less apathetic… having fewer falls, one of the most serious consequences of the disease as it progresses
Witness: Ric Pfarrer 55, financial planner and president of a Parkinson's support group, attends Willis' dance class. He said the chance to come together and have a good time can be as valuable as any physical benefit.
Witness Peggy Robinson, 60, "I like feeling like I'm not all alone."
At Westheimer's classes, in fact, talk about Parkinson's is not allowed because the emotional escape is one of its strengths.
"There's no problem talked about in our class," she said.
"We're just dancing."
Considering that 80 percent of Parkinson's sufferers have experienced bouts of depression and report feeling isolated, that's nothing to take lightly.
Grabert said apathy is one of the most common mood disorders associated with the disease, but that's not something he's seen in Willis and other Parkinson's patients who dance.
Parkinson’s dancers focus on dance, not on disease
http://katekelsall.typepad.com/my_weblog/2009/07/parkinsons-dancers-focus-on-dance-not-disease.html
Dance for Beauty, dance in the Zone where Parkinson’s, a cowardly disease, is too chicken to follow you. Forget your perfect suffering; do not dance for the disease, this rotten stupid evil disease does not deserve any such recognition. Focus on beautiful movement; don’t focus on the disease. And one more reminder: lots, not a little bit. Many hours a week, not just a few hours. With heart and body and soul, not half-heartedly. Fighting Parkinson’s requires of you much more than an hour a week with a support group. They say it takes 10,000 hours of practice to do anything well. Anything. Dance, playing an instrument, painting; carpentry, cooking, understanding history, architecture, hockey, getting physically fit, making wine from your home-grown grapes – the people who have done it for 10,000 hours are the ones you recognize right away as being the experts, the experienced, the leaders. Want to be really, really good at playing the piano? On any stage at any time? Commit to 10,000 hours. Minimum. For example, 4 hours a day, 6 days a week, for 7 or 8 years. Don’t expect it to require less commitment to fight a disease for which there is no known cause and no known cure.
Thousands of studies have been done about Parkinson’s. Especially about the drugs. (not to mention pickled herring). But has there been any study done about fighting PD with the same dedication – and commitment of time – as is routinely expected of a dancer or violinist or motorcycle repair man? The Harley dealer who can tell you everything about your machine just by listening to the engine? (Hello, Gray Theus) The guitarist who can join in and improvise live on stage with songs he hasn’t heard before? (Hello, Oren of Chatham Street) 10,000 hours of experience, training the muscles of your fingers to remember how to play the guitar.
There is instant coffee and powdered orange sugar that is supposed to make orange juice if you mix it with water, and they even have instant potatoes – I cannot imagine why there are instant potatoes; - and so patients expect instant cures, and the medical industry tries to provide them. Just take this pill three times a day. I am all in favor of pills and I am grateful for the drugs that help me cope with this absurd disease -- but when you have major movement disabilities, is there any reason to believe that you can fight that with minimal commitment? Is there any reason why that would take less time than learning to play the violin?
But I don’t think that has been studied. If you took a thousand Parkies and they fought the disease 4 hours a day; or more! Dancing, exercise, training the brain and muscles; and whatever other tricks of the trade can be learned from others: acting, martial arts, humour – I don’t know what all - but if fighting the disease became a full-time commitment, would the brain accept a winning strategy instead of allowing itself to be defeated by what is basically a very primitive and stupid and unnecessary disease?
Have there been any studies about that? No? Nobody has enough time. Here take this pill instead. Instant relief, instant high. Until your body chucks out the pills five years later. The five years, they call it the Parkinson’s Honeymoon, where it all goes great before Parkinson’s gets bitchy and ruins the marriage by ripping out the nerve and muscle communication systems that allow you to do some fairly vital things, such as swallow food.
Parkinson’s Honeymoon with levodopa? 5 year average before the side effects crush you? I don’t want a Parkinson’s Honeymoon for a marriage to a drug that turns against you after 5 years. I don’t want to be married to Parkinson’s. I want to kill the Beast.
It would be interesting to find out if Parkies could regain control of their bodies if they put in as much time and effort as if they were training for the Olympics.
Sparta, trained for strength and discipline and sacrifice; Athens expressing energetic creativity and individuality. Do both?
The rain has stopped and I think I will sit under the tree and have a beer with Ursula. That’s a good plan too.
Sparta for me alone; Athens for us together.
And the Olympic torch gets passed on.
Has there ever been a clinical trial like that? Planting the orchard, harvesting the oranges, squeezing fresh orange juice instead of mixing instant Tang with water? Because it is unlikely we can fool our brains and our muscles with quick and easy substitutes; instant pills and immediate gratification; we expect doctors to give us a miracle pill and we can go home and forget all about it. And believe me, I would be the first to swallow such a pill. I would take three of them. Instant relief. If you want Infomercials promoting Mirapex, I’m the spokesperson you need.
But with your brain becoming disconnected from your body, it is going to take some major efforts for rehabilitation, to get your brain back in communication with your muscles.
How many hours of golf did Tiger play before re-inventing the perfection of the game? How many hours did Manitas de Plata play guitar before the Gypsies gave him that name: “little fingers of silver”? How many times did Wayne Gretsky pass the puck in junior leagues before he shattered all the records in the major leagues?
John Lennon summed it up: “Christ, it don’t come easy.”
Doctors would not make themselves popular if they told you to change your way of living.
If you suffer from a major movement disability, such as PD, it may well be that you should be setting your agenda to train for the Olympics, for Carnegie Hall, for climbing Mount Everest. You will not get to do any of them, and maybe you will end up as a strong cripple rather than a weak cripple, but there is this possibility that your brain might surprise you by going along for the adventure. When you require your brain to spend hours every day rehearsing for your great performance – the day when you walk down Main Street without fear of falling, and go to a restaurant and know that you can hold a fork and swallow your food without choking, and then have a conversation knowing that your words will be understood. That, folks, would be a revolution. Wouldn’t it be funny if it just takes practice, like everything else?
Ah, probably all nonsense. I think I’ll have another beer. But send me some more witnesses ! And as Olie says, “Focus on the dance, not the disease.” Think about that, all the more so if you do not have Parkinson’s. Every symptom that I have, you also have; it’s just that mine are more extreme and mixed with other symptoms that change in intensity to a distressing degree. But there is nothing that I have that you do not have, except the intensity. Ever been extremely tired? Ever have painful joints? Ever been unable to sleep? Ever get dizzy and confused and forget names? Ever fall down very suddenly? And so on. Those are all symptoms that are normal except when they are not normal. So in your own life, learn from the Parkies, even if you are in full health. In business, in politics, in art, in fighting a cause, in getting married for better or for worse, in teaching children, in looking out at the history of the world and trying to fix up a few things for the future, remember: “Focus on the dance, not the disease.”
You are beautiful when you dance. Come over here by the window. Dance in the sunlight. Your shadow is dancing too. The reason why the sun came up this morning was to see you dance. There could be no better reason. And you can hand out little cards to people, warning them that it is contagious. Not the disease - that is not contagious. The dancing - that is VERY contagious. So focus on the dance, not the disease.
There is space here for more witnesses, if the spirit moves you:
(and thanks for all the fish).
Witness: Carl Hernz
Sometimes Bad Kitty doesn’t let me get more sleep after my cereal. Time to cry over the situation? No, sometimes Bad Kitty just wants me to enjoy another sunrise I figure. You know I missed practically all of them until I got young-onset Parkinson’s. They’re pretty wonderful, even when you don’t feel your best.
--Carl Hernz
http://www.apologysmology.com/
Bob says: Carl, that paragraph is a statement for the ages. Understated, powerful, like a long haiku. Your faith shines through; your generous spirit. And because of you, there are many people who now understand Bad Kitty Fridays.
Witness: Stanley Jordan
I've always wanted to do more than just making albums and playing gigs. I wanted a higher calling, higher than commercial or artistic success. If you can touch someone, really help their life, now that would be something special. Once when I was a teenager, I had a date to jam with a girl, Allison, who played piano. I almost canceled, because I had come down with the flu. We must have played at least 4 hours together, and at the end of the session, I felt healed. That memory always stuck with me. Then one day years later I met a music therapist named Donna Poland. Now I make stops during my concert tours to contact local music therapists and observe what they do. I talk with some of their patients too. This has been very rewarding to be able to see first hand how this work is helping people. Medical science is realizing more and more that the mind and body are linked, and that our thoughts can affect our bodies.
Witness: Joyce.......
Yes I want to dance, too.
Isn’t it great, the power of Music? I believe that if as much time and effort and research were spent on the things that help, and why they do instead of the pathology of this weird disease,we would be rid of it by now. So let us make a joyful noise and dance!
Bob says: Joyce, uhhh, is that Joyce Pinckney? What a social faux pas - I did not recognize you... and we were introduced by Dr. Bin Hu. Dear readers, I present Joyce Pinckney, soon to be published author of a Parkinson's story.
Joyce says: I have had my diagnosis for 14 years and I am fighting it all the way. Mostly with music ,arts, dance, writing, composing, and denial...
Former country farm girl from Saskatchewan, registered nurse ‘64’, Head Nurse on paediatrics Saskatoon University Hospital, mother, piano teacher, batik artist, belly dancer, jazz educator, player, writer of short stories and poetry. Composer of Jazz songs and teaching stuff for students . And now worthy opponent of Parkinson disease. Oh and I am also a grandma.
(Joyce's space; to be continued)
Witness: the other Louise
You may not always control how it ends up, but you can control your intentions when you begin. When you go through that door, begin with an open heart “Agape is disinterested love. … Agape does not begin by discriminating between worthy and unworthy people, or any qualities people possess. It begins by loving others for their sakes. … It springs from the need of the other person.” Martin Luther King, Jr. (1958)
Memo to Carl Hernz. The senior executive committee of the Parkinson’s Internet Underground has voted unanimously to send you the following message:
We love you.
And they also voted a special mention for Bad Kitty, for being so wise. Cats have been on earth 50,000,000 years longer than the human beings. They know.
They know.
Did Shakespeare use pesticides?
William Shakespeare (1564-1616)
second part of Henry VI:
Dick: "Why dost thou quiver, man ?
Say: "The palsy, and not fear, provokes me."
Did Leonardo da Vinci market Mirapex? (1452-1519)
"You will see those who move their trembling hands and head, the soul with all its power cannot prevent the trembling."
Witness: Luke 13.11
And there was a woman who for eighteen years had had a sickness caused by a spirit; and she was bent double, and could not straighten up at all. And He said to her, “Woman, you are freed from your sickness.” And He laid His hands on her; and immediately she was made erect again and began glorifying God.
Dear Bob,
I hope you don't mind me responding to your comments on the "So You Think You Can Dance" article in Scientific American online...I wanted to let you know that I am one of the teachers in the Dance for Parkinson's program at the Mark Morris Dance Group in New York City (and we are working to set up other classes around the world). Three dancers here been teaching our class, based on a mix of modern dance, ballet, tap, jazz and improvisation, for about seven years in close collaboration with Olie Westheimer and the Brooklyn Parkinson Group. This summer, we're doing our first research study to investigate what happens in the class more scientifically. But throughout, our focus is on dance: we aren't dance therapists or healers, and we don't focus the class on the disease, "coping" or symptoms. Our class is about dance, and music, and developing a supportive social community, and in that way it is a fun, expressive, artistic, and collaborative venture. Of course we hear from participants that the class benefits them in very specific ways that relate directly to PD, but the emphasis is always firmly on dancing for the sake of dancing.
David B. Leventhal
Mark Morris Dance Group
Witness - Dr. Michael S. Okun
National Parkinson Foundation Medical Director.
Dance therapy seems to be proving to be a very useful modality for patients with Parkinson’s disease. In some magical way, dance seems to be able to override some of the abnormal brain circuitry in a subset of patients. What a miraculous phenomena to see someone who struggles walking, dance.
1 comment:
What a fabulous collection of thoughts, opinions, facts, witnesses, human experience, and hope! It made me so happy. Thank you, Bob.
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