Dancing Away Disability Part 5

Dancing And My Amazing Reversals of Disease

By Irene Marie Kuch Watson

Dance had long enticed me, though it has only appeared sporadically in my life. I had loved to dance rock and roll as a teenager and while a college student I even sang and danced in some summer resort shows and in a college musical, though I had no formal training in dance. In my 40s I took a few classes in jazz dance and I did a little social dancing in my early 60s before Parkinson’s Disease made it increasingly difficult. Now with the thought of dancing again, part of me felt like a kid, eager to jump into the fun of it. Another part suggested I might be ridiculous to jump into dance lessons at 70 years of age with Parkinson’s Disease, and permanently damaged lungs. When you think about it though, the latter opinion is actually a form of choosing death over life, and I wanted to live. Scientific research said exercise was the antidote to both Parkinson’s Disease and Cystic Fibrosis. So never mind that it may take some considerable time and effort, to say nothing of the significant cost, to dance even moderately well; dancing was a key to recovery and, I later learned, the key to youthful vitality as well.

SEPTEMBER 2011 TO MARCH 2012: FROM NEWCOMER TO PRE-BRONZE LEVEL PROFICIENCY

Olga Agafonova and Leo Sidorenko, my dance instructors

In September 2011 I talked Rick into taking private ballroom dance lessons from the young professional Russian dancers Leo Sidorenko and Olga Agafonova at Monterey Dance. I enthusiastically jumped into my private lessons with Leo. However Rick’s Parkinson’s symptoms were more pronounced than mine were and the cost of the lessons worried him more they did me. So, though he once loved to dance socially, he gradually lost his enthusiasm to dance and had to be coaxed to take the lessons with Olga.

Leo and Olga encourage their students to perform in studio showcases and to compete in national ballroom dance competitions. Soon after I began training Leo told me about an upcoming NDCA (National Dance Council of America) sanctioned competition, the San Francisco Autumn Classic ¹ taking place in October 2011 and he suggested that I enter with him as my partner (called PRO-AM competition). His suggestion filled my head with visions of glamorous makeup, beautiful gowns and glittering jewels. I fantasized myself as a beautiful and young Ginger Rogers floating across the floor in the arms of Fred Astaire and dazzling all onlookers. Despite the unreality of my visions, I decided to go for it. After all, preparation for a competition or a performance involves exercising at a level that promotes recovery (according to the criteria discovered by Becky Farley). Each week I took three private 40-minute lessons with Leo plus a group lesson and a two-hour practice party. In addition, at home, I pushed back the living room furniture, rolled up the rug, brought in a full length mirror and practiced the dance moves alone several days each week to increase my strength, balance, skill and memory of the steps.

Ballroom dancers compete in “heats” with others of the same age group and skill level.  I signed up for Waltz, Fox Trot and Swing heats at both the Newcomer and Pre-Bronze skill levels for 61 to 70-year-olds, a total of six heats.  Online I managed to find two costumes that met the rules for competition attire: a used ankle-length ball gown for my Waltz and Foxtrot heats and a new fringed pants suit for the Swing heats. When the time came, only six weeks after I began my dance lessons and three weeks before my 70th birthday, I headed up to San Francisco with my husband and my step-son Jay for support, knowing that my son, Harrison, his girlfriend Miranda and my good friend Nita would also be there when I walked onto the dance floor. Nonetheless I am still amazed today that I plunged in the way I did.

The morning of the competition I had to meet Olga at 5:00 AM with all of the supplies for her to style my hair in a flower and jewel decorated updo and to makeup my face with dramatic eyes including false eyelashes. Getting up at 4:00 to be ready for Olga at 5:00 was painful and I floundered about trying hard to gain composure and focus. Then once I entered the ballroom and saw the other competitors my anxiety began erasing all memory of the dances I was about to perform. But, fortunately, Leo was steady, calm and reassuring and when my heats were called I took his lead and followed. Henry Ford once said, “Whether you think you can or whether you think you can’t, you’re right.” Incredibly, Leo made me believe and, in a classic Pygmalion effect, I rose to his expectations.

Every part of this event was an amazing adventure to me, including the awards presentation. All of us competitors had to return to the floor when the winners of each heat were called to the front to receive a blue, red or white ribbon (for 1^st, 2^nd, and 3^rd place respectively). As I stood there I expected nothing. I had thought I looked pretty good for my age. But so many of the competitors on the floor with me had looked so much younger than me and, since they danced much better too, I didn't think I had a chance. Then as the winners for each of my heats were called, I was stunned to hear my name called for a blue ribbon each time. I could barely believe it. 

It was only much later that I learned that since not many people my age take up competitive ballroom dancing and compete in the entry level categories as I did, I was often was the only competitor or had only one other competitor in my heats and, in those cases, other heats (of younger more advanced dancers) were put on the floor with me and my winning the blue ribbon  was merely for showing up wearing an appropriate costume and dancing the appropriate figures of the dance. But this was no mere thing to me and I’m proud of those blue ribbons and what I achieved.

Photos from NDCA Pro-Am competition at the October 2011 San Francisco Autumn Dance Classic:

After the waltz

Swing competition

 

According to Becky Farley, ambitious goals motivate one to exercise strenouously enough to achieve recovery. So, despite the anxiety I felt at the San Francisco competition, I agreed to perform a Waltz with Leo at Monterey Dance’s Winter Showcase in December 2011 and to compete again in January 2012 in another national ballroom competition, this time at the San Jose City Lights Ball,²  a much larger NDCA-sanctioned competition than the one in San Francisco. For the competition I again signed up in Waltz, Foxtrot, and Swing and once again I danced well and I even won a few more ribbons and sometimes those were again for just showing up.  But hey, I’m still proud of them.

NDCA Pro-Am dance competitors from Monterey Dance at San Jose City Lights Ball, January 2012 (I'm in the center in the chartreuse gown)

NDCA Pro-Am waltz competition at the San Jose City Lights Ball, January 2012 (I'm in foreground facing the camera dancing with Leo)

MARCH 2012: AN AMAZING REVERSAL OF DISEASE

 I soon learned that the real reward for all of my effort was in health improvements that astounded both my physicians and me. My first six months of dance training (September 2011 to March 2012) brought me:

•    An additional 15% improvement in my lung function (FEV1) from 60% of normal to 69% of normal, an exceptionally impressive change considering that only 16 months earlier my FEV1 was only 42% of normal and that the total improvement over the 16 months was 64%

MARCH 2012: ACHIEVING BRONZE LEVEL PROFIENCY

In March 2012 Michell Stone, the owner of Monterey Dance, announced upcoming medal examinations whereby students could earn a studio medal as recognition of their level of proficiency. My competitions had been at the Newcomer and Pre-Bronze levels. I now ambitiously decided to see if I could achieve a proficiency at the Bronze level by the time of the graduation Medal Ball, which was only a few weeks away. I needed to pass exams (demonstrating my skill by dancing the steps alone) for five different dance figures in each of five different dances. I chose Waltz, Foxtrot, Tango, Rumba and Cha Cha. Despite working very hard during the preceding weeks, during the week of the graduation Medal Ball I squeezed in lessons, practices and exams every day in pursuit of my goal. Finally on the day of the Ball and in the 11th hour I passed my 25th exam.

That evening I still had to perform each of the figures in the Medal Ball in front of an audience of family, friends and fellow students. I was exhausted and short of breath, but with a little help from Leo who partnered me for the ball,  I summoned the courage to get up and dance and I earned my Bronze medal.

High goals are excellent motivators and typically produce higher recovery results. But knowing when to back off is important too. Driving in high gear without breaks to de-stress and to reassess can kill brain cells; especially if it goes on for weeks.³ I was fortunate. I experienced no apparent health downturn from pushing myself so hard and my dance skills did improved significantly.

APRIL 2012:  TRAINING WITH THE SUPERSTARS OF DANCE

 

In April Michell Stone offered me an experience beyond my wildest dreams, a private training with Miriam Larici and Leonardo Barrionuevo, the Gold medalist winners of The Superstars of Dance international competition and choreographers for the Emmy-winning TV dance competition program So You Think You Can Dance.⁴  Miriam and Leonardo, who were in Carmel for a performance, came to Monterey Dance where my teacher Leo joined us. 

I was a total beginner when it came to Argentine Tango and I flat out lacked the strength, the posture, the grace and the control required of this complex and challenging dance. Yet Miriam and Leonardo gently coached and encouraged me and made me feel like this dance was within my grasp. Miriam then choreographed an Argentine Tango routine for me that hopefully I would be able to perform with Leo after 6-12 months of training with Leo to develop the skills.

Photo of me with Miriam Larici and Leonardo Barrionuevo, world champion Gold Medalists, for a private lesson in Argentine Tango, April 2012

Coaching from Miriam (in white) on a proper closed-position dance hold with good posture,
April 2012

JUNE 2012: MY FIRST ARGENTINE TANGO PERFORMANCE

Soon after Miriam and Leonardo left, Leo told me he wanted me to perform the new Argentine Tango routine at Monterey Dance’s Summer Showcase in June2012, which would give me only two months to train for what was intended as a six to twelve month goal. But I did need a new goal, so I said I’d give it my best shot. The dance routine was quite athletic and included several moves that required me to work out daily at home to gain the strength, balance and flexibility needed to do them.  I felt some strain in my back, so I wore a back brace to prevent any serious damage. I thought I felt heart palpitations, but an EKG and the recordings of a 24-hour Holter monitor were normal. My doctor then ordered me to wear a Cardiac Event Recorder for 30 days (which also had normal results, but, unfortunately, my performance was right in the middle of those 30 days).

Argentine Tango required a close fitting costume that showed more leg than the costumes I’d worn for the competitions and the winter showcase and I struggled with how I was going to hide a back brace, a cardiac monitor with wires and sticky patches, a recorder worn on a belt plus the big leg brace and my orthotic shoe inserts.

Finally I gave up on finding something glamorous to wear and I chose something from my closet that only in its loosest description was suitable. For the performance I managed to do all of the steps, of which I am thoroughly proud, but my form and styling could have used a lot more training and practice. But, hey, somehow I found the courage to get out there and dance. Later an advanced dancer told me that I had no idea how much I inspired her and many others. I was deeply touched. 

My first Argentine Tango performance, June 2012

SEPTEMBER 2012: MY WEDDING AND MY SECOND ARGENTINE TANGO PERFORMANCE

In September of 2012 Rick and I married at a gala affair at our home. 5

Rick and me at our garden wedding party, September 2012

We wanted to create a joyful, playful and entertaining day with lots of music and dancing during which we would marry and celebrate with as many friends and family as were able to come. As we put the word out, many of our dancer, singer and musician friends volunteered to perform and we put in a large canopy-covered outdoor dance floor for the occasion. Rick and I performed a choreographed waltz.  Leo and Olga gave a magnificent performance of a Latin dance medley they called Spain and many friends gave wonderful performances as well.

Rick played his cornet

Rick and I performed a waltz

Leo and I also performed the Argentine Tango routine I had gotten got from Miriam five months earlier. I still wore the leg brace (disguised by a lacy dress) and the orthotic shoe inserts, but the back brace and the cardiac monitor that I wore in the June showcase were gone this time and my dancing skill had improved quite a bit with the extra three months of practice. I felt no stage fright this time, just happiness.

Leo and I performed the Argentine Tango choreographed for me by world champion Miriam Larici

SEPTEMBER 2012: TWO MORE AMAZING REVERSALS OF DISEASE

In the fall of 2012 two miraculous improvements occurred. My twelve months of dance training brought me:

•    The incredible disappearance of the lethal multi-drug-resistant superbug, Mucoid Pseudomonas aeruginosa, from my lungs, a pathological bacteria that had been infecting my lungs since 2009 and that is associated with significant morbidity and mortality that typically signals the progression to pulmonary failure and death.⁶

•    The discontinuation of my monthly half-day-long antibody infusions that I had been receiving in a hospital since 2007, because my physicians believed that my immune system was now strong enough to handle withdrawing from this support. This was another incredible step forward.

NOVEMBER TO DECEMBER 2012:  RUMBA AND THE LEG BRACE

As I prepared for my December 2012 Rumba performance at Leo and Olga’s new dance studio, Pacific Grove Dance,⁷ the subject of my dance costume once again became an issue of some distress for me. International Rumba is in the International Latin category and it requires a sexier, even more revealing costume than Argentine Tango in that the costume has to be short, in fact, knee length or shorter, at least on one side. The issue for me was: how could I cover that leg brace while wearing a short dress.

The knee brace that for so many years compensated for my lack of an ACL ligament and medial meniscus  and prevented bone-on-bone contact

After days and weeks of searching online for an acceptable Rumba costume and even more days of trying to create one by putting together pieces of clothing in my closet, I finally spotted and ordered a fringy dress through eBay from a Hong Kong dressmaker that, judging from the picture in the ad, looked like it would do the job. When the dress arrived a week before the performance, my heart sank as I opened the package. The dress didn’t look nearly as attractive as it did in the online photo and, worst of all, it completely exposed my leg brace.

So there I was, still struggling with the Cuban hip movement (or is it Latin hip movement). Whichever it is, it continues to be very difficult for me as it triggers all of my Parkinson’s balance and pigeon-toed walk issues and I could see that by the time of the showcase I was not going be able to get them fully under control. Rumba is considered one of the most sensual of all the Latin dance styles due to its slow rhythms and hip movements that create intense bodily expressions. For the performance Leo and I had chosen the Beach Boys song California Dreaming, a sensual song about dreaming of the warmth of the California sun.

But now in this last week of rehearsals, I felt my chances of feeling sensual while dancing poorly and wearing an ugly dress and a big leg brace were about nil. On the other hand, I wanted to participate, to be included and to not let Leo and Olga down.

When the day of the showcase came I just went out there and I did what I could. Isn’t that all any of us can do anyway? I let it all show, including my struggle to maintain my balance in every dimension of that word. Now as I look back I feel good about that choice. We need to not get too attached to our egos and just do what we can, if we wish to move forward and grow.

Leo and I performed an International Rumba, December 2012

FEBRUARY 2013: TWO MORE AMAZING REVERSALS OF DISEASE

In February 2013 my seventeen months of intense dance training plus two national competitions, four showcase performances and two wedding performances had brought me an extraordinary gift:

•    An increase in my leg muscle strength and mass so significant that I was able to both walk and dance without the big heavy leg brace that had supported and aligned my degenerated right knee for decades. What an astoundingly happy day that was!!!!!! The brace came off that day and has seldom been on since, despite my continuing to train and perform in dance. 

•    Another wonderful in-road against PD is that my tremor has virtually disappeared. It still flares up slightly during periods of heavy stress such as that caused by lack of sleep, pulmonary exacerbations of my CF (respiratory infections), and feeling pressured to do too much in too little time. But it disappears again once the stress is relieved.

JUNE 2013: YET ANOTHER AMAZING REVERSAL OF DISEASE

I kept training and dancing and discovered yet another important improvement in June 2013. After a total of twenty-one months of my dance program a test of my bone density revealed the following:

•    Several very significant increases in my bone density over the 28.5 months since my last test on February 17, 2011

·        The bone density of my lumbar spine improved 7.2%, changing from osteopenic to normal

·       The bone density of the neck of my left femur improved 7.4%. The overall left femur improvement was 5.6% within the osteopenia range

·       The bone density of the neck of my right femur improved 3.4%, changing from osteopenic to normal. The total right femur density increased 6.1% within the osteopenia range

•    Note: I made some minor changes in my bone supplements and very briefly tried two bone medications during this period, none of which could have caused these bone density improvements.⁸

JUNE 2013 TO MAY 2014: TWELVE MORE MONTHS AND THREE AMAZING SHOWCASE PERFORMANCES

For my spring 2013 showcase performance I chose to dance a Foxtrot with Leo to Doris Day’s Stepping Out With My Baby. Foxtrot is characterized by long, continuous, flowing movements across the dance floor. I chose it because I covet the graceful, sophisticated movements of the advanced dancers when they dance the Foxtrot. For a Parkey like me, that’s a tall order, but I proceeded with determination. I trained all spring for a mostly silver level Foxtrot that blended American and International styles. I experienced some additional cough and congestion just weeks before my upcoming performance and so had to take a couple of weeks off from dance. When I returned, with only 2 weeks left before the showcase, I stepped up my private lessons to every day and then rested or napped most of the time when I wasn’t dancing.

On the day of the showcase I arrived at the studio with plenty of time before the performance and, despite all the intense energy of the other dancers around me in the side studio that served as our dressing room, I curled up in the blanket and on the lounge chair I had brought and I kept warm, kept well hydrated and nourished and I rested. As it got closer to show time, I got up and did a few warm-up and energizing exercises and I told myself that I was going have a good time and pretend that this was just a practice party, so there was no reason for stage fright.

Just before I walked into the ballroom I was surprised by the appearance of a journalist who said he was there to see me dance and to write a story about my miraculous victory over death. I felt excited and energized. I then heard our DJ gave me a wonderful build-up, telling how I use dance to overcome CF and PD and how dancing has brought joy to Rick’s and my lives. As I walked into the room, the crowd clapped and cheered and I felt buoyed by the support for me there. I looked out at the audience, gave them a happy smile and then gave one of the best performances of my life.

You can watch my June 2013, December 2013 and May 2014 performances (2-3 minutes each) on YouTube by going to http://www.youtube.com and typing “Dancing Away Disability” in the search bar. Then if you click on the “Dancing Away Disability” icon when it appears, my videos will be listed and you can double-click any to watch. Or you can click on the following image to see just the June 2013 Foxtrot.. (Note: clicking on the video image header will open a youtube window where you can control the playback size of the video. If you click on the arrow in the middle of the image below, the video will play on this page and at the size shown.)

Here are some photos from my June 2013 Pacific Grove Dance Showcase Foxtrot with Leo

Photos from the December 2013 Pacific Grove Dance Showcase: My Waltz with Leo 

  

And from the May 2014 Pacific Grove Dance Showcase: My Argentine Tango with Leo 

GETTING BETTER WHILE REDUCING MY PD MEDICATIONS

When I began my dance training in September 2011 I took the following Parkinson’s medications daily:

·       Requip XL 10mg

·       Sinemet (Carbidopa 25mg/Levadopa 100mg)

·       Azelict 0.5mg

During my nearly three years of dance training my dose of Sinemet and Azelict has not changed. But my dose of Requip has gradually gone down from 10mg/day to 8mg/day to 6mg/day to my most recent dosage level of 4mg/day which began two weeks ago this month (July 2014) without any increase in my Parkinson’s symptoms. As I see it, it is just another proof of the incredible benefit I get from my training in dance four days per week.  

OFFERING SUPPORT TO OTHERS

Many people have given me much loving support along the way and as a way to give back I decided to help other seniors to get better from PD or other chronic disease or aging through ballroom dance. On the third Tuesday of every month our local Monterey Peninsula Parkinson’s Disease support group meets at the Sally Griffin Active Living Center in Pacific Grove.9 In May and June of 2012 I gave talks at the support group meetings on the subject of ballroom dance lessons as a pleasurable and effective therapy for PD and almost any thing else that might ail one. I tried to entice as many people as I could to join me in a new class I hoped to create.

I also went to see Michell Stone, the owner of Monterey Dance 10 in May to see if she would be willing to offer a low-cost weekly group ballroom dance class for people dealing with PD or any movement issues including issues caused by aging. I was thrilled when she agreed. Fortunately a number of people signed up and Michell has been delightfully teaching the class once a week since then. I continue to be a point of contact for the class and both Rick and I attend the class and alternate between being just students and at other times working with other students who need individual assistance.

Warming up before the Tango lesson, Dance for Parkinson's class

Photo from The Cedar Street Times story about our Dance for Parkinson's class at Monterey Dance

In May 2013 The Cedar Street Times, a local Pacific Grove newspaper, carried a story about our class. Here is part of the text of that story:
"From the masterful Mark Morris Dance Group (current choreographer of Mikhail Baryshnikov in Brooklyn, N.Y.) to Monterey, “Dance for Parkinson’s Disease” is gaining momentum. Evidence of massive benefits in favor of brain and body movement on the dance floor is mounting. . . Michell Stone of Monterey Dance is offering Dance for Parkinson’s to a group of 74- to 91-year-youngsters. They torch up the floor from 1:00 to 2:00 p.m. every Wednesday, culminating with tango dips. This fun loving, lively group attributes Irene Watson, whom they met at Sally Griffin Center in Pacific Grove, as having introduced them to this healthful dancing lifestyle. . . To learn more about Dance for Parkinson’s Disease in Monterey, call 831-293-3001. The first class is free." 11

(Go to Part 6 for Tips To Dance Away YOUR Disability. See Part 7 for all references.)

© 2014 Irene Marie Kuch Watson