Game of Parkinson’s

With apologies to Game of Thrones

Image: HBO’s Game of Thrones

The back-to-back surgeries in the Twitchy household created an activity void that needed to be filled. And so, start-from-scratch binge-watching of Game of Thrones (GOT) filled the void. And that created two addicts; and the addicted need their fix. And so, when we arrived in S. Korea for a pre-World Parkinson’s Congress cruise, with the last episode having aired while we were flying, the FIRST THING we did on waking up at 5:00 am our first morning was to watch the episode we had arranged for our daughter’s friend to record, post and send us the link.

But the addiction has had other effects. I am now imagining/dreaming our collective battle against Parkinson In GOT terms. The ruler who kept the neurons in the brain functioning has died, and the battle is on to restore order. Who will win the right to sit on the Iron (Twitchy???) Throne? Ramsey Greyjoy makes us shake. The even more evil Cersei Lannister makes us writhe with diskinesias. Arya Stark fights the frozen faces. And Sansa Stark has the inner strength to endure the hidden symptoms that plague us. The sleepless night walkers are threatening to take over. Is Daenerys Targeryan making us hallucinate about dragons? And what is with Bran Stark and the third eye? Where is Jon Snow when we need him?

Ok, ok, we are not living in Westeros. There are not 7 Kingdoms in our brains fighting for the right to sit on the Iron Throne. However, there are so many different facets to PD that unfortunately cannot be controlled with just one treatment. So, like GOT, we need to find multiple solutions to make our lives better with Parkinson’s. Melisandre (the red priestess) is not going to bring back to life all our dead neurons. We need to make sure that our medications and treatments are working together to make us feel better. If they are not, then we need to find other options that do the job.

Are you a GOT fan? How does your experience with PD relate to GOT? I know its a stretch, but let’s have fun with it. Get a conversation going by replying in the comments. Who knows where it will lead…….

*If you are going to the WPC next week, come by my poster display (#649) on Wednesday from 11:30-1:30. I would love to meet you.

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.”

 

 

Exercise and PD

The Poll Results are in!  Thank you to all who responded to this most unscientific poll.

There have been 52 responses so far to the question:

What is your preferred form of Exercise for Parkinson’s Disease?

Walking                                                  10

Swimming                                               7

Boxing                                                     6

Dance                                                      7

Yoga                                                         5

Pilates                                                     4

Tai Chi                                                     2

Tennis                                                     2

Cycling                                                    3

Strenth/Weight Training                       3

Running                                                  1

Elliptical                                                  1

Sandduneusa (what is this?)                 1

wpc2016_logo_courriel_300dpi

On Tuesday I will be traveling to Portland for the WPC.  I am looking forward to meeting up with friends from around the country, hearing about the latest research and learning about living life to the fullest with PD.  I will try to post a summary everyday and will write more in depth after I return home.

I will be volunteering in the Parkinson’s Foundation booth on Wednesday from 11:00-1:00. Stop by and say hello if you are there.  In addition, if you would like to tell your Parkinson’s story, to be published in this blog at a later date, I would love to meet with you.  Either stop by the booth, or contact me so that we can arrange to meet.

 

Defined by her Art

Alison Paolini was an artist who happened to have Parkinson’s Disease.  Several months ago I was asked to contact her because she wanted tAlison Paolinio sell some of her artwork to benefit people with Parkinson’s Disease.  She had illustrated two books written by Kirk Hall several years ago titled  Carson and His Shaky Paws Grampa and Carina and Her Care Partner Gramma.  These stories are designed to help parents and grandparents comfortably talk about the initial symptoms of Parkinson’s and address common questions and concerns children may express.  Kirk had enjoyed working with her and spoke highly about her artwork.

A friend from my PD group and I met with Alison in July to talk about how we could sell some of her artwork at a reception for Women with Parkinson’s in the Los Angeles area.  We had been planning a tea to be held in November with Alison as our guest of honor.  However, on Friday I received the sad news that Alison had lost her battle with Parkinson’s.  

We were both impressed by her passion for art of all kinds.  Alison was a woman who graduated college at age 50, many years after  leaving school to raise a family.  She taught art in Northern California, participated in many art shows, led a support group for PD and belonged to a writing group.  We are sure that she has inspired many to follow in her footsteps.

In memory of this wonderful, multi-talented woman, we are hoping to continue with our plans so that her desire to benefit Women with PD through her art will become a reality.

 

 

 

 

Did Trauma during Childbirth set off her YOPD?

I met Lisa Boyd in boxing classes several months ago.  She is in her late 40’s, and it was sad to see her come in to class with a walker.  After a few weeks of exercise, she left the walker behind and began using only a cane.  Like many with Young Onset PD, it took a while for her doctors to finally make the diagnosis. In the meantime, her health deteriorated quickly. Her grit and her spirit to work through her physical disabilities, always with a smile,  is inspiring to us all.

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Lisa Boyd and Gail Buckley
Lisa’s story is very different from many others in our group of Inspired Women with Parkinson’s.   She was pregnant with her second child at age 41.  The pregnancy went well, but there was a mishap during the delivery and she never recovered.  She began noticing things almost immediately afterwards. She would drop her baby, she started losing her balance.  The doctors told her she was just depressed, there was nothing wrong. She insisted there is something wrong going on.  For 2 years they kept telling her she was crazy.  Then they said she had AIDS (she didn’t), asked if she was a drug user, etc.   She did not have a tremor for two years, so people couldn’t see what was wrong.   She was stumbling over her feet, choking on her food and water.  She was a new mom who could not take care of her child.

She moved to Atlanta about two years later and eventually went to the Neurology Department at Emory.  They found she had all 10 symptoms of PD.   She finally got her diagnosis 2 1/2 years after her son was born.  Lisa said she had to advocate for herself to get anything.   Prior to going to Emory no one thought she had PD because she was so young.  In addition, because she is African-American woman, she had to fight to get good health care.  She had to demand that Emory see her as a patient. The doctors now say that the trauma from the birth most likely triggered the symptoms of Parkinson’s Disease, which was probably there all along.

She has changed her diet, which made a big difference in her life.  She tries to eat as clean as possible, with no processed foods.  She takes turmeric, blueberries, strawberries and flaxseed for inflammation.  All of these have helped.

She was very depressed for a while, but eventually decided not to let it get to her.  She does self-affirmations and tries to be around positive people whenever possible.

Her advice to the newly diagnosed:  try to spend time with other women with Parkinson’s.  Being around people who understand what you are going through helps.  There are not a lot of women with Parkinson’s and even fewer African-American women with PD, so she wants to get into support groups to meet others.  Another woman in our group said that the one of the best things about having PD is meeting other women who understand and you can talk to about your problems.  She has made some great new friends as a result.

In response to a question about how her children respond to a mother with PD, Lisa says her son, who is 7, has never known her any other way.  But her 23 year old daughter knows how active Lisa was and wants her to get back to the way she used to be.  She used to be Superwoman. Cheer Mom, PTA, active in her church, but she can’t do those things anymore.  Her daughter is supportive, but now that Lisa can’t do everything for everyone anymore, the whole dynamic of the family has changed.  It also affected her relationship with her husband whom she had been with since she was young.

She now knows what she has to do to modify her activities so that she can get out of the house.  She has extremely supportive friends, but some have disappeared, a common problem with many of the room.  She is now going through a divorce and the stress has made her worse, but she is looking forward to getting back to boxing and exercise very soon.