Shake, Rattle and Roll

Italian Doctor’s Love for Irish Music Inspires PD Clinical Trial

Copyright © 2012 The Michael J. Fox Foundation for Parkinson's Research

Permission was granted to reprint in “Shake, Rattle and Roll.”

About a year ago, on one of his frequent trips to his beloved County Clare, Dr. Daniele Volpe, of Venice, Italy watched a man walk into a bar. Dr. Volpe was playing guitar in an Irish folk band, but he paused as he noticed the man’s slow, halting gait. These symptoms were familiar to Dr. Volpe – he works in a clinic that specializes in physiotherapy designed to help people with Parkinson’s disease (PD).

As Dr. Volpe resumed playing, he noticed the man rise from his seat in the bar, and he began to dance – traditional Irish set dance, he would later learn. Dr. Volpe smiled before the proverbial light went on in his noggin – could Irish set dance work as therapy for people struggling with the motor symptoms of PD? It was worth a shot. So, at last year’s Movement Disorders Society congress, he brought up the idea with the leading Irish neurologist Dr. Timothy Lynch, who was quickly also hooked.

Fast forward one year to last June in Dublin. That initial nugget culled from a bar in County Clare has turned into positive results from an observational study. It also became an MDS Congress performance by a team of Venetian Irish set dancers who all have PD.

Nate Herpich, associate director of research communications at The Michael J. Fox Foundation, sat down with Dr. Volpe between meetings here to learn a little bit more about his love for Irish music, and what set dancing (and other forms of exercise) could mean for people living with PD.

NH: Tell us about how you found your way to that bar in County Clare.

DV: I love Ireland, it is such a beautiful country, and I adore their music. I come to County Clare twice a year to play guitar in an Irish folk band, and on that day, I was playing alongside the famous banjo player Charlie Piggott. I noticed that this man used a cane to walk into the bar. But then he started dancing without any difficulty. I was impressed. I also noticed that he was using a real dance step, and immediately I thought that his steps could be particularly interesting when thinking about improving gait.

NH: What do you mean by the fact that the steps were “particularly interesting for improving gait?”

DV: First of all, there is much research that says that exercise in general is good for people with PD. But specifically, many with Parkinson’s have difficulty changing direction. Irish set dance allows people with PD to overcome freezing of gait when turning by maintaining a consistent step length (these steps are called “reel steps” in Irish dancing). Reel steps also help them to better transfer their weight more naturally. I believe this dancing may help people with Parkinson’s to re-learn how to make these movements.

NH: You also talk about “acoustic cues” being useful for people struggling with PD motor symptoms. What does this mean?

DV: In Parkinson’s disease, we’ve found that people move better sometimes under certain conditions. For example, they may see something take place in front of them that inspires them to walk forward, or,they may hear something that helps them to move better. Irish folk music has a very strong rhythm, so it may be that this helps the brain to recognize it’s time to move. Another factor which shouldn’t be discounted is the sense of community that dancing and music instills in patients. It can be a real motivating factor for people with PD who may not want to dance. By getting them to exercise, we are already making an important first step.

NH: Tell us more about the study’s findings on the whole, and what they could mean for people with PD.

DV: We recruited 24 subjects for the study, which took place over the course of six months. Twelve underwent traditional physiotherapy, while 12 more took Irish set dance courses (for two hours weekly) which I designed with the help of an Irish set dance studio in Venice (yes, it’s true!). I wanted to make sure that the steps were accurate from the perspective of physiotherapy. Then, we ran both groups through some clinical tests and gait analysis. Both experienced significant improvements in the Unified Parkinson’s Disease Rating Scale (UPDRS), Berg Balance Scale (BBS), and in quality of life measurements like number of falls and walking speed. But in each case, the Irish set dance group improved more. Also, only the dance group experienced significant improvement in self-reported freezing of gait and in the Time Up and Go test (TUG). The dance group also showed a significant improvement in the Caregiver Burden Inventory (CBI), which suggests the high social value of Irish set dance. The results were very intriguing.

NH: What’s next? More Irish step dance at next year’s Congress?

DV: I hope so! This, of course, was a small study, so we’ll need to a real recruit more people for a large scale study to confirm the results. We’re also putting together an instruction manual which shows how you can implement Irish set dance into a real physiotherapeutic program incorporating evidence based medicine. There’s an Irish festival in Venice in 2013, and I’d love for us to be able to put on a larger scale performance then.

To learn more about the Fox Trial Finder and getting matched to a clinical trial in your area: www.foxtrialfinder.org

Fox Trial Finder is a web-based clinical trial matching tool to connect those with and without Parkinson’s disease to Parkinson’s clinical research opportunities that urgently need their participation. After volunteers input information about themselves (such as zip code, date of birth, and brief medical history), Fox Trial Finder provides trial match suggestions. Fox Trial Finder also provides the opportunity for volunteers to connect directly with trial coordinators through a secure messaging interface on the site. Register for Fox Trial Finder today to play a part in accelerating recruitment into PD clinical research!

 

I Would Sell My Soul for the Polka Queen

 I dread making the phone call to the Polka Queen (AKA Alice Aman), my former accordion teacher. I leave a garbled message on her cell phone about my slow, stiff fingers being unreliable because of Parkinson’s Disease and that I won’t be playing with her group at Oktoberfest in Denver this year. My days of playing the accordion in public are over.

Ten days later she returns my call. I nervously reiterate my message. “No problem,” she says, “but can you just come, sit in the band and look like you are playing? I’m just looking for bodies.”

Knowing Alice’s dream of having 100 accordionists play at Oktoberfest and that she is willing to sacrifice quality for quantity, I reluctantly agree to show up and look like I’m playing.

I have a nightmare that night about being an accordionist impersonator. At Oktoberfest, I play in Alice’s band. I open and close the bellows of my accordion by pushing the air button with the index finger of my left hand. The fingers of my right hand flit over the keys, but I don’t press down so no sound comes out. It’s PERFECT until the TV news station arrives to tape this performance. When they place their microphone next to my accordion, they are puzzled that all of my squeezing results in no music. I am exposed as a fraud, guilty of being an imposter.

But I’ll gladly do it for Alice and hope that 99 other accordionists are there to cover for me.

For more info on the Polka Queen, check out the story written by her daughter-in-law, Mel Aman, who describes the Aman family as “Every person in the remarkable immediate Aman family is a musician. All of them. Think Partridge family on steroids.” It’s at: http://www.examiner.com/band-wife-in-denver/the-polka-queen-is-my-mother-law

Goodbye to the Accordion

 

My Letter to Members of the Silver Notes, An Accordion Ensemble

June 26, 2010

 

Hi Janet, Char, Sharon, and Barb,

 

Accordion playing with the Silver Note was fun last night, but I was struck with the realization that I can no longer play with the group in public. My fingers are too stiff, rigid, inflexible and slow. I am unable to play chords with my right hand. I am unable to push the buttons with my left hand. I just can't keep up the speed of some of the songs. I need to "give it up" with the group and play my electronic, reedless accordion on my own at home. I just hate admitting this, and it's even more difficult to accept it.

 

It's ironic because my overall movement was so good yesterday with dance, yoga and my voice and speech sounding/feeling almost normal for most of the day. It's that unpredictability of Parkinson's that's so difficult to manage.

 

So I want to be involved with the Silver Notes, just not playing the accordion, but on the sidelines as a member of the support team.

 

Thanks for your understanding,

 

Kate

Silenced Once, But Not Forever

When I was five years old in 1954, the Chordettes recorded Mr. Sandman and the song remained in first position on the song billboard for seven weeks during that year.

When I was 10, I auditioned for a talent show at Camp Little Flower in Kansas City, singing the Chordettes version of Mr. Sandman. Two of us auditioned, and I came in second. I wasn’t deterred.

When I was 15, I signed up for the high school choir at Bishop Hogan High School in Kansas City. When choir director, Sister Madaleva, a big nun that we secretly labeled the “black veiled monster” heard my voice, she screamed, “you’re flat.” Knowing that she wasn’t referring to my chest size, I wondered if the condition was terminal. I discovered that indeed “being flat” was fatal when she threatened to fail me with an “F” if I sang or pass me with a “C” if I mouthed the words. I mouthed the words.

At the high school reunion 40 years later, I discovered that my friend, Debbie and my brother, Tom, also had a similar experience with Sister Madaleva. None of us wanted to fail, so we succumbed to her threats.

While Sister Madaleva silenced me for many years, she didn’t silence me forever. Over the years despite being quiet with a flat voice, I morphed into a successful person.

When I was 50, I discovered that I had stage fight when playing the accordion in front of an audience. Being the can-do person that I always was, I was determined to find a solution. I googled “stage fright” and discovered at the top of the list was the Showoffs Studio for Performers in Toronto, Ontario Canada. I can do this, I thought, and signed up.

Art Nefsky, the director of the studio, didn’t care if we could sing or not. He was determined to help us find our voices and overcome stage fright through singing. Before the weekend workshop, each of us was required to learn the lyrics to the song of our choice and bring the karaoke version of the CD to the workshop. I chose Dinah Washington’s sultry version of What a Difference a Day Made.

 

(Note: Some of the Showoff Exercises are included at the end of this story. You can also read about my experience at the weekend workshop at What a Difference a Weekend Made.)

Now that I’m 60 and with Parkinson’s Disease for nearly 15 years, I am the same determined person that I’ve always been. I’ve recently been working on my Parkinson’s voice with voice coach, Mary Spremulli. As a speech and language pathologist for 25 years, Mary has helped many of us quieted by Parkinson’s disease rediscover our voices through a program she created called Voice Aerobics™. This program combines voice therapy with exercise physiology. In addition, Mary has recently combined voice exercises with singing in her efforts to empower those of us with Parkinson’s and other neurological disorders, develop our best possible voice and speech.

Other educational articles can be found on Mary's blog at: http://voiceaerobicsdvd.blogspot.com/

Since singing at Camp Little Flower, I have come full circle. Yesterday I discovered the same Chordettes version of Mr. Sandman in my CD collection. I belted out the song just as I done as a child 50 years ago.

I was silenced once but not forever.

*****

Some of the Exercises from Art Nefsky’s Showoffs Studio for Performers Weekend Workshop  -- May 2000, Toronto, Ontario

 

All exercises were done while singing the song each of us brought to workshop

1. Eye contact with audience—10-15 seconds/per person

2. Copy cat—While singing someone in audience would do something (such as wave), and you should mimic the behavior

3. Got-ya—tap person after you made him/her laugh

4. Play politician—shake hands, “vote for me”

5. Make eye contact; make comment about person (e.g., “I notice your necklace”), etc.

6. Sing like conceited bitch with gas; act flirtatiously toward male class member; sit on his lap

7. Sing like a flirt

8. Sing like an opera singer who is farting

9. Sing off-key (like Roseanne Barr sang “The National Anthem”)

10. Sing like a kindergarten teacher who is condescending

11. Pretend you are at your high school reunion; sing like a superstar; recognize classmates in audience

12. Sing like a obnoxious, drunk superstar

13. Sing like a mellow, drunk superstar

14. Sing fairy stories, lullabies to a child

15. Sing to a one year old who was celebrating his first birthday; maintain his attention throughout the entire song.

16. Sing song in fake language (e.g., gibberish)

17. Sing song alternating between fake language (e.g., gibberish) and English

18. Sing while alternating between multiple personalities

19. While singing, Art would throw out different adjectives (e.g., confident, condescending) and singing style should change accordingly

20. Sing rotating one arm throughout the entire song

21. Sing while lying on the floor

22.Sing while Art was the conductor of your song

I'm Back!

Who is this geeky gal on the far left of this photo? Me, of course.

The Silver Notes Quartet played accordion music in celebration of St. Patrick’s Day at the Parkinson’s Support Group in Wheat Ridge, Colorado.

Photo from left to right: Kate, Janet, Sharon and Char.

T-shirts designed by Janet.

Music Provides a Break from the Sting of Homelessness

I glance up from playing my accordion and smile. I’m haunted by the expressionless eyes of the crowd at the dinner for the homeless, an annual event in downtown Denver that was started by the late Monsignor Charles B. Woodrich (AKA Father Woody). This party, which began in 1981 and provided dinners for the 100 homeless at the time, has morphed into a major undertaking providing dinners, gifts and entertainment for 2,865 homeless and low income family members on Sunday, December 20, 2009.

My stereotype of homelessness is alcoholic men with scraggy gray beards, begging for money. So you can understand why I’m struck by how many children are homeless. Children, with jet black hair and olive skin, ages ranging from newborns through teens, and their families, wait for around three hours outside in a line that snakes for two blocks around the Sheraton Hotel on this unseasonably balmy 58 degree winter day.

I wonder how long they have been waiting in the queue for their meals. I’m curious where they will go after they leave the dinner. Where will they have their next meals? How do they stay warm? Do the children attend school? How did their families become homeless? I am saddened to observe them carrying all of their worldly possessions in their backpacks.

More than 12 years ago, my husband, Tom volunteered at this dinner and was discouraged by the somber mood of the day. What this party needed was live music to brighten things up. I invited Alice Aman’s accordion band (which included me at that time) to play for this annual event, and they’ve provided entertainment ever since.

Alice Aman, Colorado's Queen of the Accordion
 

For the last five years, I haven’t played my accordion with the group because of my slow Parkinson’s fingers and sometimes my right leg involuntarily makes figure 8’s and circles on the floor (neuro talk for dyskinesia). But this year, I’m determined to play with the group, despite my “limitations.” I play for two and a half hours. Right in the middle of Jingle Bells, my fingers come to an abrupt stop and refuse to move. I feel like a light bulb that burns out or a car that runs out of gas. I quietly get myself off stage and whisper to Alice, the band leader about “the Parkinson’s.”

Music is a universal language for the rich and poor, for the healthy and disabled. For me, it provides a temporary respite from the sting of having Parkinson’s. For the audience, it provides a break from homelessness when their eyes sparkle as they enjoy the accordionists squeeze out Christmas songs.

Back to My Bliss

Last Friday night, after a seven year absence, I played with the accordion band. I also made a commitment to play for Octoberfest, at the Christmas dinner for the homeless, and at the December meeting of the DBS support group.

Alice, the band leader, had tears in her eyes to see me return. My fingers and thought process were slow. I had difficulty keeping up the pace. But I'm back to my accordion bliss!!!

  Photo courtesy of Deborah Fryer of Lila films at: www.lilafilms.com

Embarrassed and Flattered

I have to admit that I was both embarrassed and flattered to discover that I was featured in Bob Dawson's blog, Parkinson's Patients: Yes We Can Dance.

From his home in rural Quebec, Canada, Bob monitors the worldwide activities of Parkies who are trying to fend off the monster through dance and music. He spotted me playing my accordion in the flower garden. Thank you, Bob, for sharing my story at: http://parkinsonsdance.blogspot.com/2006/05/chapter-17.html

Bluegrass Banjo Player Benefits from Brain Surgery

I couldn’t picture it -- Eddie Adcock strumming bluegrass music on his banjo during brain surgery. Adcock, a professional music, underwent Deep Brain Stimulation surgery to relieve a hand tremor. Watch and listen to his inspiring story on the following:

http://news.bbc.co.uk/1/hi/sci/tech/7665747.stm

http://news.bbc.co.uk/1/hi/world/americas/7666179.stm

Dancing Out of Our Comfort Zones

Click on photo for larger image.

 

I am filled with excitement and nerves. I drive into the parking lot at the North Jeffco Community Recreation Center in Arvada, Colorado at 5:30 PM last Friday night. This is the main event of the season for the Rockyettes, a tap and Broadway dance ensemble. I am dancing tonight as a relatively new member of this group.

Earlier today, my hairdresser transformed my hair into a sassy style and put on stage makeup including the requisite red lipstick. There is something about red lipstick that encourages me to develop a different persona. I am sweating through my makeup on this hot summer afternoon.

 

I walk into the building and into the theatre where 260 chairs are set up for tonight’s performance. Fifty women dancers, mostly seniors, wait to rehearse the closing bows. Each dance group has its own timetable of when to go on stage and how to bow. The music of “Can-Can” is blaring in the background.

 

The rehearsal is over at 6:00 PM, and the doors to the public are opened. My husband, Tom drove separately. He waits in line with his two pans of homemade poppy seed coffee cake, baked from scratch by Tom himself, recipe courtesy of his late Czechoslovakian mother. This has become Tom’s signature recipe. Once people try it, they are addicted. It must be the poppy seeds.

 

My friend, Janet, calls earlier to confirm that a group of 17 people are accompanying her to tonight’s performance. I assume that the 17 are from her line dancing class. Ten other people confirm their attendance directly with me so now I am up to 27. I am stunned.

 

I am also surprised to see two men waiting in line that I knew from an accordion band that I played with several years ago. One of the men even had his accordion in tow because he was afraid that if he left the accordion in the car, the wax in the reeds would melt.

 

I proceed to the dressing room at 6:00, still astonished that so many people would choose to spend their Friday evening watching the dancing seniors. The Rockyettes performance begins precisely at 6:30 and ends exactly at 7:45. We move like clockwork, with beautifully designed costumes, different for each number. I dance in two of the Broadway dance songs.

 

When we enter the stage, I look directly into the audience. I cannot see anyone because the lights are turned down except for the stage lights, which are turned up. I see a silhouette of Tom who is snapping pictures at stage left. I dance and smile to the presumably full house, not knowing whom from those I invited are in attendance. The dancers are having fun and at that moment, everything else doesn’t matter.

 

After the finale of “Can-Can” and the closing bows, the house lights are turned on. I head off stage for the main floor to visit with friends and enjoy refreshments, including Tom’s coffee cake.

 

The biggest shock of the evening is seeing my accordion teacher and band director, Alice with her band members that I played with in my earlier Parkinson’s days. Alice conducts an accordion band every Friday night. The previous Friday, Janet (yes, the same Janet, a line dancer and accordionist who invited 17 people) informed the band that she wouldn’t be attending the following Friday because she wanted to see me dance. Alice’s and the band members immediate responses were “me too.” Alice cancelled band for the following week. In the 14 years that I have known Alice, she never cancelled band for any reason. This was a first for Alice.

 

And this was a first for me… While dancing tonight, I feel and look as though I don’t have Parkinson’s.

 

It seems like we are all dancing out of our comfort zones.

How Do You Keep the Music Playing?

Anthony Davis’ article “Striking a Chord” struck many chords for me. As an amateur accordionist and wannabe dancer, music has played an important role in managing my Parkinson’s disease.

I play my accordion, even with shaky, slow moving fingers of Parkinson’s and/or flailing arms of dyskinesia. As I continue to play, my symptoms subside as I get into my Parkinson-free zone. I feel like my old self, but most of all, I feel normal. When I dance with my non-Parkinsonian classmates in my Broadway dance class, I look and feel as though I don’t have Parkinson’s. Music melts my Parkinson’s symptoms, at least in the short run.

I was delighted to discover that I am not the only one thinking about the benefits of music in managing Parkinson’s. Bin Hu, MD, is head of a Parkinson’s research project centered in Calgary, Alberta, Canada. He is trying to find out why music, at least temporarily, stops the paralyzing effects of Parkinson’s in some patients.

Dr. Hu believes that certain “cue” cells are spared from Parkinson’s disease. When these cells respond to music (music related to a person’s feelings and recollections of something enjoyable), they release chemicals that help Parkinson’s patients temporarily get back their control of movements.

Dr. Hu and his colleagues are studying Parkinson’s patients who exhibit positive musical responses. One of his goals is to make the music effect last longer, with another to figure out how Parkinson’s patients can be trained to use music as an alternative method of treatment.

Wouldn’t it be great if Dr. Hu discovered how to keep the music playing?

Lyrics from the song, “How Do You Keep the Music Playing?”
By Alan Bergman / Marilyn Bergman / Michel Legrand)

"How do you keep the music playing
How do you make it last
How do you keep the song from fading
Too fast…

If we can try with every day
To make it better as it goes
With any luck than I suppose
The music never ends”

Resources:

Striking a Chord
By Anthony A. Davis
Apple Magazine, July-August, 2006, pages 26-30
http://www.calgaryhealthregion.ca/apple/2006_july-aug/apple_magazine_july-aug2006.pdf

Download striking_a_chord.pdf

Feel the Fear and Do It Anyway

Click to view bigger image
Photo of Kate Kelsall
Photo: Copyright © 2007, Deborah Fryer, www.lilafilms.com

I was musically blocked.

A couple of weeks ago, I received a phone call from Janet, my accordion buddy. “Katie Sue, how are you?” was her familiar greeting.

Janet continued: “The Silver Notes are playing their accordions for a Parkinson’s support group on February 20, and we wondered if you would like to join us. We’re playing love songs.”

Initially, I hesitated. However, when Janet said that “you will inspire them by playing your accordion with Parkinson’s,” I melted.

I’ve haven’t seriously played my accordion since Deep Brain Stimulation surgery in May 2005. But now it was time. I hadn’t opened the accordion case for so long, I was afraid to look inside.

I had a lot of other fears when I contemplated playing the accordion with Parkinson’s:

• Fear of playing with dyskinesia (it’s like hitting a moving target)

• Fear of playing with bradykinesia (the opposite of dyskinesia with slow moving fingers)

• Fear of my brain’s slow processing of the music, which would result in a polka sounding like a waltz

• Fear of making a fool of myself

• Fear that if I could entertain with the accordion in public, then what other possibilities might be open for me.

At our rehearsal today, Janet wheeled my accordion inside and carefully took it out of the case. I had forgotten how heavy it was when I carefully put the straps on my shoulders. I played only with my right hand and let the other group members play the basses with their left hands.

And I became more determined than ever to follow Susan Jeffers' advice, and “feel the fear and do it anyway.”

The Accordion King of Scandinavian Humor

At 82 years old, Stan Boreson is dubbed the accordion "King of Scandinavian Humor." Isn’t being a Scandinavian accordionist and a comedian an oxymoron?

Although Stan DOES NOT have Parkinson’s, I find his humor a refreshing way for me to cope with living with Parkinson’s. Watch and listen to Stan play his accordion and sing his song, I Just Don’t Look Good Naked Anymore at:
http://www.heraldnet.com/article/20071221/MULTIMEDIA/283841756

Related Resources:

Stan Boreson's Website
http://www.stanboreson.com/

Stan Boreson Can’t Stop Singing
http://www.heraldnet.com/article/20071223/NEWS01/253965048

Another Paul

Photo of Kate Kelsall taken by Linda Crist
Circa 2000
Click on photo for larger image

With his exotic-sounding last name, he could have been a French Canadian hockey player. But when Paul stood up, I could tell that he was neither a hockey player nor a French Canadian.

Paul walked across the room with a slight limp. He briefly struggled to open the case and pulled out his accordion with his right hand and arm. His left arm hung there serving no useful purpose. When Paul walked toward the stage, his father said to the audience that Paul played the accordion only with his right hand because he has cerebral palsy.

Many of the Paul’s in my current life have Parkinson’s Disease. This Paul had a different neurological disorder: cerebral palsy.

Paul beamed while he played the melody of five Christmas songs on his piano accordion using only his right hand. His left hand looked mangled as he gripped the strap to open and close the bellows. In his current condition, it was impossible for Paul to move the fingers of his left hand to play the accordion basses.

Upon finishing, the audience applauded and Paul left the stage. Paul glanced over to Alice, his accordion teacher, and they exchanged thumbs-up signs. Tears filled me eyes when I witnessed this touching moment.

Paul motivated me to quit my bitching, dig out my accordion and start playing again. Thank you, Paul, for sharing your joy of music and inspiring us to be all that we can be.

Accordion Memories

YMA, the Young Musicians of America, is a misnomer. Perhaps when it began in the sixties, it should have been called YMA, but now OMA, the Old Musicians of America, would be more accurate. YMA is a music school that provides instruction in accordion, keyboard and drums. Although YMA is currently the only accordion game in Denver and Colorado Springs, during the fifties and sixties, there were many accordion schools throughout North America. Many young children took accordion lessons and throughout the years, although the children’s enrollment has been dwindling, the adults’ enrollment has been picking up speed. The baby boomers who played their squeezeboxes when they were children and teens, put their accordions in the closet for 25-35 years, now have pulled them out of their closets, dusted them off, and started making music once again. I fall into this category, taking accordion lessons in Kansas City for three years from ages 10-13, before becoming a teenager and putting the accordion in the closet because it wasn’t “cool” to play as a teen and toting my accordion with me through the eight cities in the U.S. and Canada that I lived ever since.

Somehow I had some sort of epiphany about twelve years ago, felt I needed more balance in my life, thought the accordion might solve the balance problem, pulled out the Yellow Pages and found YMA.

Yesterday I had another accordion lesson. While walking into the YMA music studio, located in a strip mall in Thornton, Colorado, I was once again flooded with accordion memories. The sweet smell of baked goods came waffling out of the Mexican bakery next store. When I previously checked out the Mexican bakery, I discovered that there is lard in EVERY item in the bakery. It is as though there is a time warp, and the bakers haven’t heard of healthy eating.

The walls of the music rooms of YMA are brightly painted in pink and blue hues like children’s bedrooms. In the performance room, there is a hand-painted mural of an accordion on the front wall. I knew that the Amans were musically creative, but didn’t know they were also artistic with painting. Then when talking to Alice, the matriarch of the music studio, I discovered the true artist and painter–a criminal who in lieu of going to prison, decided in favor of community service and painted the walls of a nonprofit entity, YMA. Apparently, the local judge refers many people for community service to Alice. If they can survive Alice’s interrogation, they can survive anything. Alice is a big boned, tall woman of German descent, has bleached blond hair and can be described by the two seemingly contradictory clichés–“rough around the edges” and “heart of gold”. She lights up when she hears someone playing the song, “Who the Hell Is Alice,” thinking the song was named after her.

I looked at the framed photos to the right of the mural–photos of YMA trips and remembering past performances in front of Los Arcos in Puerto Vallarta, Mexico, at the zoo in San Diego, at Disneyland in Anaheim, at the bottom of the Space Needle in Seattle, in front of the Parliament Building in Victoria and in front of the totem poles in Stanley Park in Vancouver.

Chad was also at the music studio yesterday. Chad is Alice’s and Mike’s son and also a music teacher, performer and entertainer. We reminisced about the happier, healthier times for both of us, with Chad currently suffering from Crohn’s Disease and Diverticulitis and my attempts to play the accordion with Parkinson’s Disease.

We focused on YMA’s trip to Puerto Vallarta in 1995, and played “remember when” like children:

Me: Remember when you were conducting our accordion band, you gave us a dirty look, and about 25% of us stopped playing in the middle of a song.

Chad: Remember when I conducted the band and immediately after the performance, I dove fully clothed into the swimming pool and surprised everyone.

Me: Remember when it was so hot that even the news wouldn’t report the temperature.

Chad: Remember when we had to start one of the concerts 20 minutes early because the wax inside the accordions was melting.

Those were the healthier and happier years for many of us. I’m glad that I still have the video of the YMA trip to Puerto Vallarta so that I will always "remember when."

LynnMarie Is Moving On

I always wanted to be just like LynnMarie, that sexy accordionist and four-time Grammy nominee. But with four times the bridemaid and never the bride, LynnMarie has had enough. She is moving on.

LynnMarie has come a long way baby since I wrote LynnMarie's Passion for Squeezing for Accordion Worldwide in 2001.

Check out the folowing press release of February 14, 2007 announcing the new and improved LynnMarie.

FOR IMMEDIATE RELEASE:

Contact: Steve Levesque or Guy McCain
Luck Media & Marketing, Inc. (310) 860-9170
info@luckmedia www.luckmedia.com

Post Grammys: LynnMarie Is Donning Her Party Dress and Is Ready To Move On

Once dubbed "The Dixie Chick of Accordion" by Jay Leno, Button Box Accordion Great LynnMarie isn't ready to make nice with the genre establishment after her fourth Grammy nomination in the category of Best Polka Album-for the brilliant country-rock-pop influenced Party Dress-didn't take the first woman ever nominated in the genre to the winner's circle. She's determined to move on and create music now for openminded listeners who are eager to embrace her progressive melodic and highly rhythmic accordion music.

"Polka got me to the party, but now I want to get out there and start making music with and for people who think and create beyond the safety net of pigeonholing," she says. "Creatively, this experience is going to be the best thing that ever happened to me, and I'm excited to be moving on to bigger and better things in my career. I've been a bridesmaid four times now but it's great to be single again and have the freedom to explore new opportunities."

For more information on LynnMarie contact:
Steve Levesque or Guy McCain at Luck Media & Marketing, Inc. at (310) 860-9170
[email protected], www.luckmedia.com or her website.

I'm Dancing As Fast As I Can

During the weekend of August 16, 2002, thousands of fans gathered at Graceland in commemoration of the 25th anniversary of the death of Elvis. The same weekend, hundreds gathered at the Embassy Suites Hotel in Englewood, Colorado for the Rocky Mountain Accordion Society’s 53rd Annual Competition. I was in Englewood.

In retrospect, 2002 turned out to be one of my golden years of performing with Parkinson’s Disease (PD) before the rusty years set in about a year later.

I took accordion lessons, performed and began competing in 1996, the same year that I was diagnosed with PD. I earned 29 trophies for solo accordion performances in adult competitions in Denver–first, second and third place trophies, some as tall as 20 inches, all emblazoned with RMAS, the Rocky Mountain Accordion Society. I played with accordion bands from Denver in concerts at Los Arcos in Puerto Vallarta, Mexico, the zoo in San Diego, Disneyland in Anaheim, the bottom of the Space Needle in Seattle, in front of the Parliament Building in Victoria and near the totem poles in Stanley Park in Vancouver in Canada.

I wanted my performance in 2002 to be different – more daring as though I had a premonition of the end of my golden years. I hoped to dazzle the audience with my performance.

Sunday, August 18, 2002. I stay overnight at the hotel on Saturday. On Sunday morning, I wake up early, practice a little and dress for my performance. I put on a red dress, which flows so beautifully when I dance and lace up my jazz shoes. I wrap a long red, white and blue patriotic scarf around my waist.

I make several trips downstairs from my room in the hotel to outside the main ballroom on the first floor, schlepping my accordion, amplifier, sound module, sheet music, boom box and CD.

I thought I had allotted enough time to set up my accordion equipment, but find that I am rushed. I enter the ballroom, and it appears that everyone is seated early. My face changes to the color of boiled ham. Mike, my accordion teacher, a distinguished looking silver-haired man, jumps up to help me set up. He probably is the only person in the room that knows what I am up to.

Contestant number 512 is called up at ten minutes past 12 noon. I almost forgot that I would be called by number not name. I am being called. I move forward onto the stage. The ballroom is packed, and there are 350 people looking back at me. It is the first time that I remember feeling excited instead of nervous. I paste a smile on my face and hope it looks sincere. I flip on the big band switch on my electronic accordion and proceed with playing a big band medley that included “Moonlight Serenade,” “Tuxedo Junction,” “Little Brown Jug” and “String of Pearls.” I sound like a one woman Glenn Miller orchestra. Even I am impressed.

After playing the medley on the accordion, I carefully put the accordion down, move to another part of the stage, and click on the CD player for the next part of my performance. Blaring out of the boom box is the Andrew Sisters’ version of “Boogie Woogie Bugle Boy.” I worked with a jazz dance teacher over the prior four months, who choreographed this dance for me. Since the tempo was too fast for my slow moving PD feet, she converted the song on the CD to 75% of its original speed.

At the end of this 12-minute song and dance routine, I remembered the thrill of my accordion playing and jazz dancing, a performance that truly reflected me.

My golden years of performing turned into rusty years when my PD symptoms kicked into high gear within the next year. My PD meds were unpredictable. One moment I seemed normal, and the next, I sputtered like a car that ran out of gas. I shook more, started falling, and had trouble lifting the accordion and pulling the bellows.

I dreamed of my PD cure through accordion playing and dancing, but my hopes were dashed.

Magical Moments on Tuesday

March 30, 2005. It was less than a month before I would be traveling from Denver to California to undergo Deep Brain Stimulation (DBS) surgery for Parkinson’s Disease (PD). When I stopped by the music studio on that Tuesday, Mike, my accordion teacher, was picking up a shipment of new Italian accordions at the airport. Chad, his son, also a musician, teacher and performer, warmly greeted me with his usual “Hey, what’s going on?” I was there to pick up a copy of the sheet music, “The Continental,” one of my selections for the music contest in August. Chad and I secretly knew that most likely I would neither be playing nor dancing “The Continental” by then. It was a make-believe game.

“My Dad told me about your surgery for Parkinson’s. Are you excited?” Chad asked with a twinkle in his eye. “More scared than excited,” I mumbled trying to conceal the fear in my voice. I knew if Chad were in my shoes, he would be excited. He is the person who always jumps from the highest diving board and perpetually sees the glass as more than half full.

“I’m doing pretty well in dealing with my Crohn’s Disease,” Chad somberly reported. What? Had I missed the detour on our conversation path? I knew that Chad’s sister, Kim, had Crohn’s, but not Chad. “Yeah, they need to test my younger brother, Derek, too. It runs in families.”

I learned from Chad that Crohn’s Disease is a serious inflammatory disease of the gastrointestinal tract. We had a sobering conversation about the realities of living with a chronic disease, including topics such as hating that word, ‘chronic’, the symptoms, the juggling of meds with the devastating side effects and attempts at controlling the uncontrollable. “They say that 80% of Crohn’s patients will have bowel surgery in their lifetime,” reflected Chad. I silently thought of some anal humor as a response, knowing that Chad would laugh; however, I realized it was bad timing. “It’s ironic,” said Chad, with the spark back in his voice, “every other aspect of my life is going so well. I’m getting married in August. Musically, I’m doing better than ever, with gigs in Toronto and New York. But, I couldn’t handle this life without my music.” I nodded in silent agreement.

“You know, I’m going to reward myself with a greasy ol’ double cheeseburger once I stick to the program for awhile,” asserted Chad. A year ago, who would imagine that he would even be discussing a cheeseburger on a Tuesday afternoon?

Chad’s cell phone rang with one of his students calling about his lesson and bringing us back to reality. The magical moments vanished like vapor. As I was leaving, his parting words, “see it as an adventure,” reverberated in my head.

Calling All Shaky Accordionists

Within 15 seconds of performing a computer search of “accordionists with Parkinson’s,” I had a long list of obituaries of accordion players with Parkinson’s Disease (PD). I wondered if PD had killed them, or if being an accordionist had. I heard stories of accordionists dying while performing, and I always assumed that it was the bellow shaking that made them keel over. Or perhaps it was the deadly combination of the shaking of the accordion and the shaking from PD.

I’ve also overheard audience members saying they felt like killing the happy squeezeboxers.

I wondered if I could possibly be the only living accordion player in the world with PD.

I’ve been overloaded with accordion memories lately. It seemed that every conversation that I had during the previous week focused on the same topic–the need for me to return to playing my accordion:
Tuesday at lunch with Christy;
Wednesday at dinner with Alice, my first accordion teacher as an adult;
Friday, when Mike my accordion teacher dedicated the song "Unforgettable" to me at his and Margie's concert; and
Saturday at Linda's party when she described how wonderfully I previously played the accordion, that is, before my Deep Brain Stimulation (DBS) surgery for PD.

After all, playing the accordion was the primary reason that I proceeded with brain surgery in the first place. I hadn’t played since before my surgery in May 2005.

A couple of days ago, I finally found the courage to fire up my electronic, reedless, 13 pound accordion. I was grateful not to electrocute myself. I played a few easy songs, e.g., "What a Difference a Day Makes," "Climb Every Mountain" and "Take Me Home Country Road." I was very rusty, slow and steady, but accordion playing finally became a possibility, and no longer wishful thinking.

Yesterday, the phone rang and when I answered it, I heard an unfamiliar voice. The caller was Charlie Nimovitz of San Rafael, California. Charlie was a singer and musician who played the accordion, keyboard, and piano, and performed professionally for the last 30 years. Charlie was diagnosed with PD in 2000. Check out Charlie's website at: http://www.charlienimovitz.com/.

We were both delighted to discover the second living accordion player in the world with PD.