WPC Day 2

Well, I made it on time this morning and headed straight for a session called Synchronizing Breath & Movement for Body Alignment and Posture Integrity, a long name for what it calls in parentheses (IMG_0001.JPGChair Yoga).  I did not expect much after seeing “Chair Yoga” and was pleasantly surprised.  We learned a lot of breathing techniques, including one called “Box Breathing” which the yoga instructor, Aminta Romero St. Onge, said is great for helping with sleep problems.  I will try it and let you know if it works.  And we did some yoga too.  It was a well spent hour.

The morning plenary was was titled Genes and Mechanisms of Sporadic PD.  I missed the beginning, so I have no idea what Sporadic PD is.  Beate Ritz, of UCLA spoke about the effects of pesticides on Central Valley farmworkers (in California) and the increased risk for PD among this population.  Alice Lazzarini told about her transformation from PD researcher to PD patient, an ironic situation that is more common than one would think.  I know of several others.  Finally, Jason Karlawish talked about what you can do with the information that you get from genetic testing for PD, and for other diseases.  He raised many difficult questions about what to do with the knowledge that we will suffer from PD, dementia, Alzheimer’s or other degenerative diseases.  What are our options?  What are our responsibilites to ourselves and our families.

After the session ended, I proceeded to check out the many posters displayed in the exhibit hall.  I needed something more uplifting after that last talk.  There are hundreds of posters on display about research projects from around the world, foundations for PD, exercise programs, nutrition.  It was amazing.  Some of the pimg_0006eople were there to talk about their posters and explain what they are doing.  I have never seen anything like this before.  They actually have tours of the posters that you can sign up for.  Each tour has a different theme.  I did not sign up for a tour, but wandered through, talking to people about their work.   Here is the poster from the Parkinson’s Disease Foundation about the Women and PD Initiative that I participated in last September.  It describes the program and its goals, and the outcome one year later.  I am proud to say that I am represented in 2 sections of the pie chart, both in Media and Repeating events.

In the afternoon, I  bailed out on Sleep Difficulties and headed to Becky Farley’s PWR! Nexus program.  Becky is fabulous!  The room was packed with people eager to move after sitting all day.  And move we did.  Sitting, standing, getting on the floor.  Everyone had a great time.  Here is a 5 second short video of one of the moves.

I went to one last session on Speech and Swallowing and then back to the posters to see several friends do their presentations.  More on both tomorrow.

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

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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.

 

PT or not PT?

On Sunday, our Inspired Women with Parkinson’s in Los Angeles group met with Dr. Ali Elder of [re+active] physical therapy and wellness in Los Angeles.  Dr. Elder spoke to us about the benefits of exercise for People with Parkinson’s (PWP) and showed slides of dopamine in the brain before and after exercise.  Exercises can delay the progression of the disease and the release of dopamine in our brains can make us happier.

The bottom line:  Exercise is medicine, don’t forget your daily dose!  Exercise on a regular basis, but make sure that it is something that you enjoy.  The fact that you enjoy it is a result of the increased dopamine in your brain.  And the exercise does not have to be limited to just doing cardio on a bike.  Dancing, hiking, walking, yoga, boxing, tennis and more have been shown to not only increase our dopamine, but also our flexibility, balance and general well being.

So when and why should you see a physical therapist?  According to Dr. Elder, you should be seen immediately after diagnosis.  An assessment will help determine how the PD is affecting your gait, your reflexes, balance and much more.  Exercises can be assigned to address your issues and help to slow to the progression of the disease.  It was recommended to start with one visit to get a baseline of physical function and then the frequency of follow-ups can vary from once per week, once every six month and everything in between.

A physical therapist can also talk to you about taking your medications properly and the effects of food on your medications.  Only a few women in the room had actually gone to a physical therapist.  Most of us did not know that this was an option for us.

Finally, Dr. Elder and her assistant, Jazzy led us through a PWR!Moves workout.   PWR!Moves is a PD-specific skill training program to maintain or restore skills that deteriorate and interfere with everyday movements.  There are 4 basic exercises designed to address symptoms related to Parkinson’s. PWR!Up, PWR!Rock, PWR!Twist and  PWR!Step.  After going through different versions of each of the 4 exercises fairly confidently, we then had to walk across the room throwing a scarf in the air and catching it with the opposite hand.  Chaos ensued.  Just when you think you have figured it out, your balance is affected.  Try it and see what happens.

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Photo courtesy of PWR!