WPC Day 1

It’s liberating.  When the dance class is going on, there are no patients.  They are dancers

David Leventhal

Day one dawned bright and early.  First sessions at 8:00 am.  I got there at 8:15 and could not get into the yoga session.  That was indicative about most of the day.  Many sessions were standing room only or closed because there are so many people attending the WPC.  That is a good thing and a bad thing.  It is amazing that so many people came together for 4 days of learning, experiencing, networking and more for a conference on PD.  There are People with Parkinsons, Doctors, PT’s, OT’s, researchers, care givers, writers, all going to sessions together.  Some are very technical, others are just fun.  There is something for everyone.

However, it became apparent that with all of the careful planning, there just wasn’t enough room in many of the sessions for all of the people who wanted to get in.  I really wanted to go to the session on Nutrition and PD, but so did a lot of others.  Those who were lucky enough to get in said the session was excellent.  The good thing is that many of the sessions will be available on the WPC website for viewing later.

So what did I go to today?

First, at 8:00 am every morning, there are Hot Topics.  4 short presentations about current research.    Moving through Glass was presented by David Leventhal from Mark Morris Dance and the Dancing for PD program.  Using Glass technology, Leventhal developed a program to provide a hands free way of providing content.  It is easy to use, portable and private.  It gives people the option for tactile and verbal inputs.  Music and audio cues are used to get people going.   There are 4 modules:

  1.  Warming up the body
  2.  Balance – moving in space
  3. Gait training
  4. Unfreezing

Initial user evaluations were generally positive.  64% would recommend it to others and would use it.  All felt the exercises should be longer.  Right now they are limited by the technology.  The program is enjoyable and extends class benefits.  However, it is not a replacement for live experience and it still needs some improvement to integrate the technology better.

Leventhal was then presented with and WPC award for Distinguished Contribuitions to the Parkinson Community for his work with Dancing for Parkinson’s.  In accepting the award, he said that “It’s liberating.  When the dance class is going on, there are no patients.  They are dancers”

There is a wonderful photo exhibit titled “This is Parkinson’s” by Norwegian photographer an20160921_095559d PwP,  Anders Leines.  There are many compelling portraits with personal stories.  I posed with a friend, Clara Kluge, in front of the large group mural.  You can see for yourself how amazing these people are in the photo.

I attended a session titled “Living Well with PD:  It starts at Diagnosis”

Three speakers spoke about how their lives changed forever when they were given the diagnosis and how they coped.   A lot of good quotes came out of this session which was really about getting past the initial shock of the diagnosis and keeping positive about the future.  Bob Kuhn says the challenge to coping begins with 3 words:  Engage, Encourage and Inspire.  His best quote came from Dory in Finding Nemo:

“When life gets you down, you know what you gotta do? Just keep swimming, and swimming and swimming…” 

Jane Busch gave a framework for self-care.  She began by going through the 5 stages of the emotional roller coaster after diagnosis:

  1.  Shock.  I have what????
  2. Denial.  Not me.  It must be a mistake
  3. Anger.  It is not fair
  4.  Fear.  what will happen to me?
  5. Acceptance.  Ok let’s get on with my life.

She describes 5 keys to live by:  Nutrition, Supplements including Vitamin D and Calcium, Exercise, Mindfulness and Volunteering.

The third speaker, Dilys Parker, spoke about the importance of communication beginning with the first visit to the doctor.  Telling your story can be therapeutic and can be helpful to others as they listen to your story.  She gave us the best quote of the day from Joan Didion’s The Year of Magical Thinking:  Life is changed in an instant  The ordinary instant.”

 

 

Two Stories from the Heart

Last month I had the chance to interview two more women with PD.  Since each of us experiences our PD differently, it is always interesting to hear how each person approaches her diagnosis and finds a way to move forward with her life.  We can learn so much from each other, finding our way on this lifelong journey with each other’s support and encouragement.

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Linda and Gail

Linda

Linda was a dancer. When she was in NY several years ago, she discovered that Mark Morris Dance Studio, the premier modern dance studio in NY, has classes for people with Parkinson’s.   She went in and there were about 50 people at all levels who were dancing. It is such a beautiful program. We know that exercise is good for us. It brought in music, imagery and creativity and it was so much more fun than slogging away on a treadmill for exercise.

Mark Morris dancers trained Invertigo Dance Theater to run the program. It must be run by professional dancers, because they really understand strategy of how the body works.

“A doctor told me 10 years ago when I was diagnosed that dance is going to help me stay well. And I am doing pretty well. Maybe it is the dance. We don’t make any medical claims. It is just a real dance class that is modified for PD.”

 

Linda thought her first symptoms were just the aging process, even though her mother had died years earlier from PD.   “I thought it was age. I was taking jazz classes but I couldn’t turn all of a sudden. I was getting dizzy when I turned on my left side. I thought, that’s unusual, since turns were always easy for me, and I wasn’t quite as flexible and I was stiff. It wasn’t till I was on vacation and I started getting a tremor in my left leg and I got worried. It started and stopped at the beginning and then eventually it just wouldn’t go away.   It only bothered me when I was resting. And that’s when I went to a doctor.”

She knows she had symptoms before. She had a couple of falls and other symptoms 5 years prior that she attributed to age. “When you look back it kind of resonates. I always had a reduced sense of smell. I broke my nose when I was 10 and so I never thought of that as a symptom.”

Initially she went to her internist who said “You don’t have Parkinson’s”. “I said maybe I have Parkinson’s since my mother had it. My mother had been bedridden for a number of years with Parkinson’s before she died. Then Linda went to a general neurologist and he said ‘I don’t know, you need to go to a movement specialist.’ I was going to NY to visit my children, so he suggested I go to a movement specialist in NY, which I did , and then I went to UCLA afterwards. They said time will tell. And they were right. It took 2 years to find the right doctor to treat her.”

She gets her info about PD from groups like ours, and from her doctors who have also given her a lot of information. Because she goes back and forth to NY so often, she also sees a doctor in NY who is one of the premier PD doctors in the US. All of her doctors have agreed on a course of action, and progression, which is comforting to know that the best doctors think along the same lines.

Linda started with Azilect, then the Neupro patch, which they recalled. Then Requip. And now Sinimet. It is the same medicine her mother was on. “I do see a difference after several years. It wears off sooner, I have to take it more often, but I am still on a relatively low dose.”

She is in a telemedicine study with the University of San Francisco. She thinks it is terrible, it has a long way to go to make it work. She is interested in the exercise study at USC, but travels too much to participate.

So what keeps her going?  Linda is doing the things she likes, like volunteering to teach this dance program.   It is satisfying and keeps her going.   She takes dance classes that are not so hard, but she is still dancing. And her grandchildren are her vitamins.   She travels often to see them.

What makes her experience so unique? Her mother had PD. She sees how different her life is than her mother’s was with PD. Her mother wasn’t active, so the trajectory of her disease was very different. She had a different life and wasn’t well. Linda says “I see all of us making the most of a situation that can make you want to crawl up into a ball and do nothing. But we are not letting it. We are trying not to let it.

Her one piece of advice for others is to keep moving. It really makes a difference.

Gail 

Gail was diagnosed about 4 years ago. In about 2005 she noticed her foot bouncing occasionally at odd times. She got a referral to a neurologist who said it was something neurological, but he didn’t know what. If it gets worse come back. In 2008 she thought it was getting more frequent and went to Dr. Steven Sykes at Cedars, who also said he didn’t know what it is, but if it gets worse come back.   November, 2011, while at a movie, she realized she had a tremor in her left hand and whispered to her husband “I have Parkinson’s.” I went to Dr. Sykes in December, who said he had good news and bad news. The bad news is that she did have Parkinson’s, but the good news is look how long it took to get to this point. In 2008, he had written in her record Parkinsonism. Something like, but he couldn’t make the diagnoses at that time. He thought I would have a slow progression and I think I have. I went on Azilect right a way. Started Sinimet about a year ago when I realized that my balance was off and I was stiff and I wasn’t moving. I could look in the mirror and see that it wasn’t me. The Sinimet really helps.

She goes to 3 support groups. She has made wonderful friends and learns a lot in the groups. The doctors don’t experience the weird little things that happen to us. We can always ask in the groups “does anyone have????”

Apathy has never been a problem for her. She goes to exercise classes and has so many activities to choose from. She loves the exercise class at the Westside Pavilion.   When she first started she could barely do many of the movements and has seen a big improvement in what she can do.

What makes her story unique? Loving support groups. If you reach out and use the support groups, it is very valuable. The thing that is really exciting to her is that she is on the board of the new PD organization that is starting in LA.

Her advice to the newly diagnosed: find all of the kinds of exercise and do the things that you enjoy and go to support groups.

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I hope to continue to interview more people with PD in the coming months and post their stories here.  Guys, that includes you, too.   Please contact me directly if you would like to share your PD story.