Dec 17, 2007

Chapter 1

1.
About this site:
Parkinson’s patients can dance. How come?


by Bob Dawson

I have Parkinson’s.
A friend bombarded me with the Blues. I started to dance, and groove, and visualize. Music on – disease much better. Music off – symptoms come back. How come?
I found out on the internet – chat rooms, YouTube, interest groups, e-mail exchanges, that there are Parkinson’s patients who cannot walk, but they can dance.
What’s up with that?

This site does not contain a cure for Parkinson’s.
I do not know if music and dance can help everybody.
If you have Parkinson’s, it is my personal, non-scientific opinion that you should find music that you get off on, play it LOUD, and start to move to the music. Every day.

Dance as therapy.
Dance for flexibility, strength, endurance.
Dance for joy.
Dance in defiance of the disease.
I agree with all of that.

But here is what this site is really about:
Dance for a cure.
Dance to bother the scientists.
Dance to raise a question.

And the question is, if you cannot walk without falling down, if you cannot hold a spoon to feed yourself, if you choke when you swallow, if your mind is losing its ability to give instructions to your muscles, then how come you can get up and dance? Eh? How come? What’s up with that?

Because the answer to our question may lead to a cure for Parkinson’s.
In the past few years, much has been learned about what the brain on music does and what the brain on dancing does and what the brain on Parkinson’s does, and some scientists say it is beginning to make sense. What they are learning about music and dance may soon help to defeat an ancient disease.
Surprising? Not really. The human race had art before agriculture, before building shelters, before language. We are hard-wired for art. And hard-wiring is what the PD’er needs, having burnt out one major set of circuits. Music and dance and science, combined, can eliminate this disease from the face of the earth, forever. It will be the next major disease to be vanquished. The more concentrated the effort, the faster it will get done.

So let’s do it.
Let’s get it on.
Let’s dance as a question mark for all to see.
Someone will find an answer to the question, because the evidence is right before their eyes.


2

A momentary lapse of reason

“… Many mental illnesses are now known to undermine the ability to dance or perform rhythmically – schizophrenia and Parkinson’s, to name just two – and so the sort of rhythmic dancing and music making that have characterized most music across the ages serves as a warranty of physical and mental fitness, perhaps even a warranty of reliability and conscientiousness…”
- page 253 of “This is Your Brain on Music” by Dr. Daniel J. Levitin, neurologist at McGill University, published by Penguin, September 2007
- Scientific American Book Club Selection; L.A. Times Book Award Nominee; New York Times Best-seller for 5 weeks.


My E-mail to author:
Thousands of people are using dance to fight Parkinson’s, usually alone in their homes – YouTube has videos of it, University of Calgary is researching it.

Author replied:
YouTube and a single study at the University of Calgary should not be pit against the judgment of experts.


3.

YouTube, 2006 - Reverett123 posts video and says:
Dancing is fun, but I would rather have the option to walk.

(Play at max volume) Most patients and a good many doctors think of PD as simply a case of dying brain cells creating a shortage of the chemical dopamine. The treatment is to replace the dopamine. If this view was true, then this video would not be possible. I am in a state described as "off" and experiencing "freezing". The medicines are not working and my feet stick to the floor. It is a miserable way to be, trust me. Nothing happens to increase dopamine, yet you see the magic of music.
The importance here is that precious research dollars go by the truckload to the simplistic view of this condition when they should be going to new avenues. Dancing is fun, but I would rather have the option to walk.
YouTube video


4.

A single study at the University of Calgary
Striking a chord

By Anthony A. Davis

It’s a short length of masking tape stuck on a floor, but for some reason Sheila McHutchison can’t step over it. She freezes in her tracks, as if the tape were as impassable as a penitentiary wall.

Parkinson’s disease can do strange things to people. The most common symptoms of this incurable brain disease are tremors, usually beginning in one arm or hand, muscular rigidity and slowness of movement. But in some cases – Sheila is one – the disease also causes patients to freeze up at certain sights, making a simple task like walking impossible. For some, the visual stimulus might be the line between a carpet and hardwood flooring or a crack in a sidewalk. In Sheila’s case, it’s the tape.

But then someone puts on Sheila’s favourite song, ABBA’s “Dancing Queen,” and she has a pas-de-deux with her husband, John. A moment later, facing that little stretch of tape, she easily walks across it. Music seems to melt Parkinson’s freezing effect.

Sadly, three or four minutes after the music subsides, Sheila’s hands again begin to tremble and her upper body wobbles. She is led again to the masking tape and, once again, freezes like a statue when she tries to step over it.

That tape was stuck there by Dr. Bin Hu, head of a national Parkinson’s research project centred in Calgary. Dr. Hu and his collaborators are trying to find out why music, at least temporarily, melts the paralyzing effects of Parkinson’s in some patients….

…Sheila emphasizes that Parkinson’s has not taken over her life. “I have Parkinson’s, but Parkinson’s doesn’t have me,” she says. And when the music plays, she feels like her old self. . .

… Dr. Hu explains that scientists have made great strides in studying how the brain reacts to music. For example, Dr. Robert Zatoore’s group at McGill University has found pleasant music activates almost the same brain regions as those that mediate feelings of reward and pleasure. “What is amazing is that these reward pathways also exist in rats,” Dr. Hu says. Recently, Dr. Hu’s laboratory and researchers in Japan have discovered so-called “cue” neurons, the brain cells that apparently only respond to rewarding auditory tunes but not neutral sounds. When researchers gave rats a sweet drink or other pleasurable reward after playing a certain kind of beep – the rodent’s version of a favourite tune – they discovered that cue cells “fired like crazy” whenever the beep was sounded again. In the meantime, the rats moved 30 to 50 per cent faster than without the “music.”

Dr. Hu believes that cue cells are spared from Parkinson’s disease. When these cells respond to music (and it can’t be any music, explains Dr. Hu, “it must be connected to a person’s feelings, connected to recollections of something enjoyable”), they release chemicals that help Parkinson’s patients temporarily get back their control of movements.

Last December, Dr. Hu and his colleagues began studying Parkinson’s patients who exhibited positive musical responses. His team hopes to eventually study about 30 people, and… Dr. Hu hopes to conduct some of their studies in the homes of patients. … Dr. Hu’s team will capture each step of a patient’s movement using a wireless motion detector and high-speed video recording, a computer system specially developed by Ed Block, chief engineer in the group.

“One of our goals is to make the music effect last longer,” explains Dr. Hu. Another is to figure out how we can help train more Parkinson’s patients to use music as an alternative way of treatment. Both of these goals will greatly benefit from our basic research on the brain pathways and chemicals related to the music effect. Extrapolating from those discoveries, the team will try to develop new and more effective treatments for the illness.

When Dr. Hu’s research project was officially announced in Calgary, country-music star Paul Brandt was on hand to explain how Parkinson’s not only robs individuals of control over their bodies, but also takes an immense toll on sufferers’ families. Brandt’s father-in-law, Bernie Peterson, is in the late stages of Parkinson’s.

Brandt, a former registered nurse at the Alberta Children’s Hospital before breaking out into country music, said he felt a “bit cheated” because of Parkinson’s. Shortly after he met his future wife, Elizabeth, her father, Bernie, had a heart attack in 1994. As his arm hung down from a hospital gurney, Bernie noticed an odd trembling in his fingers. “He didn’t know it then,” recounts Brandt, “but Parkinson’s disease had taken a hold of him and his plans and his wife and his family. And I guess, in a way, it kind of took over me, too. You see, I never really got to meet Bernie, the father-in-law that could have taught me how to finally fix my truck on my own, or remodel an old classic or build a deck on my house. He couldn’t do these things anymore by the time I met him.”

Bernie, a once vigorous man who had flown the first fighter-jets used in the United States Air Force…, today can’t sit alone in a chair. Tremors rock him so badly that, unless his wife, Freda, is there to repeatedly prop him up, he eventually slides helplessly out of most chairs. “You learn to suffer in a kind and forgiving nature,” says Bernie of how he copes with Parkinson’s. “There’s no other way to do it.”

Bernie’s singing son-in-law shook his head when he first heard about Dr. Hu’s project. “I’ve always been skeptical of music therapy honestly,” admits Brandt. “But when I saw this video (of Sheila) suddenly being able to move because of music, and heard the doctors talking about it, honestly my first response was that maybe they would try and use my music and it would actually make patients worse.”

But he realizes now the research is no joke. “It’s almost dreamlike that music could be used to be a treatment for a disease like Parkinson’s.” Sure, it’s always been good for healing an aching heart, says Brandt, “but who knew it could be used for an aching mind.”
Anthony A. Davis is a Calgary writer. First published in Apple Magazine

14 comments:

OMMAG said...

Go Bob !
Cheers .... OMMAG

Anonymous said...

Hi Bob,

I came by at a rushed time and quickly spotted and read 'Tribute to Ursula Schulz'. Very touching,thank you for sharing. I will visit again when I have more time to appreciate everything.

All the best,
Larry

Anonymous said...

Hey Bob,
Sorry it took so long to get back to you, but I am a lousy comment moderator. I will link your site and use a post to announce your addition to the line up. A few of the Docs and nurses from CCM-L, Nephrol, EMED, Patho-L,
and trauma stop by from time to time, and your blog may que their interest more than my post of that article of the study.
Also I must say that I love the guy's blues show at Dust My Broom, but I am afraid I am one of those liberals, I gather he is not too fond of by reading his politics;) All I can say is if you grew up here in the US , and as a kid read about rednecks killing MLK, and saw Tricky Dicky Nixon try and subvert the free election process... and still did not become a liberal... you probably weren't paying attention;)
Hope all is well for you and yours, and thanks again for allowing me to link your blog to my site.

LabJaz... " The tardy blogger of Music and Medicine"

Bob Dawson said...

LabJaz, I am very honored that you have paid attention to this site. And you are not late: PD is a slow-motion disease. And now I have lost your e-mail address and url. Will find them though. I know what you mean about MLK, Nixon and how long that list gets for people who grew up in the U.S.of A. But the thing about Darcey Jerrom and most of the founders of DustMyBroom.com and the Friday Night Blues and Beer is that they grew up on an Indian Reservation in the isolated north - and on the Rez, all houses belong to the government and everything is run by government - so this group is rather unique in that they became conservative Blues Indians and Metis. Actually a call to their own people to get off welfare and re-gain their independence. Plus, there are more Blues musicians on Canadian Indian Rezervations than anywhere else in the world - their hit song now is called "Plantation or Reservation", and all of this is what "conservative" USED to mean. The President who freed the slaves was a Republican. On DustMyBroom they understand conservative as freedom and pride and self-reliance, and liberal is the government's endless programs to "help" the Indians, controlled them and keeping them in racial ghettos. Yet on DustMyBroom, few of the controversies are about "Indian Affairs" - instead, it includes native people who comment on national affairs and world affairs, and often the readers have no idea that the comments are written in impoverished Indian Reservations, with not a single complaint about how they have been treated; rather, they offer to contribute to the whole country, not just asking for more for themselves. To add to all of this, it is these Metis and Indians who have been bombarding me and other Parkinson's people with the Blues, on the advice of John Lee Hooker. You can't make this stuff up.

Joe said...

Great site, glad I found it. As a fellow "Parkie" I have one request... Please inform Dr. Daniel J. Levitin that Parkinson's Disease is a neurological disorder, not a "mental illness."

Keep up the great work. If you don't mind I would like to add this site to my blog roll.

Peter Schmidt said...

This is an amazing quote:
"YouTube and a single study at the University of Calgary should not be pit against the judgment of experts."

May I offer the following from Nassim Taleb, in The Black Swan: "I am skeptical about confirmation, not about disconfirmation." A claim is not science if the discovery of information that runs contrary to the claim is not considered sufficient to falsify it. Newton withheld publication of his theory of gravity because of a deviation in the equations of the motion of the moon -- even though it turned out that the distance to the moon had been miscalculated.

One YouTube clip, one single experience is enough to falsify a categorical statement by any number of experts; many clips and published research are enough to justify questioning the "expert" label.

At the National Parkinson Foundation, we are supporting dance programs for Parkinson's disease, and I enjoy reading your blog.

tntbudge@sbcglobal.net said...

Hi Bob- I'm so glad we found each other. 8 years ago my Neurologist told me I'd be disabled in 10 years and to get used to it. I fired her and I'm still going. To me, I've always known music heals. I don't know why it's such a hard concept for the N. docs. I think they would approach their patients a lot differently if they actually suffered from PD. So I talk to my new N. as little as possible. She knows I like to manage my meds and I think she really doesn't believe what she's seeing. I'm actually cutting down on meds quite often. Keep up the fight. I'm so happy that someone else is as daring as I. It was so wonderful watching you come to life, so to speak, when the music started. I was clapping and laughing. It was great, dramatic and real- wonderful. Thanks so much for taking the time to comment on my site. I'll come back when I have more time to read more of your writing.
Tracy
tracyannes.blogspot.com

for more dancing videos go to-
tandtdance.com
I choreographed, taught, and performed the one dance on New Year's Eve this last Dec. I'm in red. I can see my stiffness but no one else knew anything was wrong with me. It took me 2 weeks to recover from that night but it was a dream come true. Thank you. Thank you.

tntbudge@sbcglobal.net said...

Oh yes, Bob, can I add your link to my site? I have a whole forum of PD friends who would love it. They are at parkinsonsforum.org
It is a great site started in England. Very friendly.
Tracy

Anonymous said...

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

Maria said...

Oliver Sacks, author of The Man Who Mistook His Wife for a Hat and An Anthropologist on Mars, discusses the effect of music therapy on Parkinson's disease patients.
http://www.youtube.com/watch?v=9nnLTPPDRXI
Thanks for connecting on Facebook!!!

Anonymous said...

Please check out the research done by Drs. Gammon Earhart and Madeleine Hackney at Washington Univ in St. Louis about Argentine Tango and PD. See YouTube " Fox files: Dancing the Tango, may help Parkinson's".
Eileen

HIO Golf Doctor said...

Fantastic blog. I have worked with people with parkinsons now for about 10 years and I have a passion for dance. Now if I can just combine the two like you are doing! Keep up the good work and blogging. Thanks for the inspiration.

Lindy Swain said...

Terrific post, and blog. Music and dancing are amazing things!

Lindy Swain, PharmD
www.pharmacyadvocates.com

Charlotte said...

Woohoo, Bob!

Dance ON!

I’m a friend and new care-provider for a neighbor with Parkinson’s, and am in the process of learning all I can.

I’ve discovered that the blogs I’ve found, like yours, are the best sources of real, useful information for someone like me. Thank you very much for your contributions to my education! :)

May I share another that I like? http://parkinsonsand5htp.blogspot.com. The author’s name is John, and he seems like a fountain of information and inspiration. He has made lots of posts about exercise, which I thought you might find interesting.

Yes, keep on dancing!

Charlotte