Books, Laughter and Exercise

I love to read a good book.  I have had the opportunity to read two very different books in the last few weeks by authors who have Parkinsons’s.  At the World Parkinson Congress, I was fortunate to hear author Alice Lazzarini talk about her book Both Sides Now: A Journey from Researcher to Patient.  Her story is compelling and I could not put the book down.  Shake Rattle and Roll With It:  Living and Laughing with Parkinson’s by Vikki Claflin, is a very different take on PD by a humorist blogger.

At the WPC, Lazzarini told us that it all started with her shadow.  Walking down the street one morning, she saw that her arm was not swinging in her shadow.  A Parkinson’s researcher for years, she knew that a reduced arm swing was an early sign of Parkinson’s.  The next morning the she noticed once again that her arm was not swinging in her shadow.  She was reminded about how medical students typically diagnose themselves with each disease they study.  She said “I must be too immersed in Parkinsons”

How could this be?  She went to work and confided in a co-worker who had been diagnosed two months earlier.  They cried together at the irony that both PD researchers were diagnosed with Parkinson’s as they were making groundbreaking discoveries for that same disease.

In Both Sides Now: A Journey From Researcher to Patient Alice Lazzarini tells the story or her illustrious career and about her diagnosis of Parkinson’s Disease.     She recounts difficulties faced by women in the workplace, especially in academia, at that time.  Many years later, encouraged by the visionary doctor she worked with, Roger Duvoisin, she finally pursued her PhD.  In 1996, her groundbreaking study with the Contursi family from Italy led to the discovery of the alpha-synuclein mutation, PARK1, and revolutionized the field of Parkinson’s research.  Yet, when confronted with the early symptoms that she knew pointed to PD, she did not seek medical treatment.  It took almost a year for her to finally see a colleague for an evaluation and the confirmation of her worst fears.

Like most of us, she tried to hide the tremor that appeared early on. When she hosted an advisory board meeting in London for Parkinson’s specialists several months later,she began to see PD from the other side – the patient’s side.  Statements made by other doctors that were not offensive before, now bothered her immensely.  But the biggest issue that confronted her was how could she remain a professional and be a patient at the same time?

In spite of her amazing career, she faced the same issues that we all do when we hear those four terrible words “You have Parkinson’s Disease”.  We have gone through denial, hidden our symptoms, and pretended that all was ok, when inside we were terrified.  We did not want people at work to know because it could jeopardize our careers.  Dr. Lazzarini was no different, and that is why her story is so easy to relate to.

Once she finally came to accept her disease, and her fate, Dr. Lazzarini retired from research and wrote her story for herself.  Fortunately she decided to share it with others who are living with Parkinson’s, so that we can better understand this disease.  Her story is an inspiration, and her discoveries have revolutionized the approach to Parkinson’s research.  Because of this amazing woman, we all have hope for a future without Parkinson’s.

In contrast, Shake, Rattle & Roll With It: Living and Laughing with Parkinson’s by Vikki Claflin, who has been writing about her experiences with Parkinson’s in her blog, Laugh Lines, gives us a very different take on PD.  There is a saying that if you write a blog about Parkinson’s, you will eventually write a book about it.  I have read some books by bloggers that are just awful.  But this one I recommend highly.  At times, I think she had channeled me and was writing about my experiences.  She sees the same elephant in the room that I have seen and written about.  I found myself nodding in agreement with her observations and laughing hysterically at some of her antics.  There is no embarrassing PD story that is off limits.   Any woman can relate to her description of shimmying into Spanx whether she has PD or not.  (If you don’t know what Spanx are, imagine trying to stuff a comforter back into that plastic bag it came in.  You just can’t do it!)  Her 20 ways Parkinson’s tremors come in handy is a classic.  And of course, when all else fails, there is always a glass (or bottle) of red wine with Milk Duds to get through the worst days.  But underneath it all is a serious look at living with a chronic disease and how one woman copes with it by looking at the world through humor.  Her final advice to us is Even without a cure in your lifetime, you can fight a good fight.  If you can laugh at the frustrations, epic fails and embarrassing moments, you will live a life made up of joyful moments and you have won the fight.

Finally, for those of you who have read Alex Kertin’s Goodbye Parkinson’s, Hello life!: The Gyro-Kinetic Method for Eliminating Symptoms and Reclaiming Your Good Health, he just announced today that there is now a 30 minute exercise video that you can download. Go to  My Exercise for Parkinson’s  with Michael Wiese, the co-author of the book.

 

A week later, after the WPC

 

The World Parkinson Congress was much more than just a convention.  It was an opportunity to meet and mingle with a diverse group of people who all have the same mission:  finding a cure for Parkinson’s.  There were so many options for all of us.  We could go to medical research sessions, even if they were geared towards reseachers.  Doctors came to exercise sessions with People with Parkinson’s (PwP’s).  Sessions were labeled by how technical they were, but they were open to everyone.  The exhibit hall had a huge variety of vendors, ranging from Parkinson’s organizations, to drug companies, speech therapists, a boxing ring and even one vendor touting a mattress to cure all ills.  There were hundreds of posters, a staple at medical meetings, which outline the latest research and studies from around the world.  Some were by researchers.  Some were by PwP’s.  Themed tours of the posters were offered for the curious.

So where am I a week later?  Still trying to digest all that I saw and heard.  Fortunately, the WPC app has links to the speakers and their slide presentations.   This is very helpful if you can’t quite remember the details, or missed a session that you wanted to attend.  The key thing is that now, thanks to the program guide which has info on every session and every speaker, I know where to go for more information on so many topics relating to PD.

The big take-aways from the WPC for me are:

  1. PD is a Designer Disease.  The symptoms and progression for each PwP is different. Doctors are now looking at other ways to alleviate symptoms, including alternative medicine, exercise and nutrition.  As we learn more about our genes and PD, the challenge will be how to move forward with that information to get the best treatment possible.
  2. We were inspired by so many:  Tom Isaacs, Brian Grant, David Leventhal and Julie Carter just to name a few.  They have all made our lives better in some way.  And of course, who was not brought to tears by May May Ali,when she recited her poem “Pearl”, in memory of her father Muhammed Ali.  Finally, we were inspired by so many People with Parkinson’s who made the journey to be together in Portland.
  3. None of us is alone on this journey with Parkinson’s.  There is support for us in so many ways.  Doctors and other health care professionals, therapists, trainers, caregivers, friends with PD, are all there to help.  I met people that I had corresponded with through this blog, finally putting names and faces together.  And I met people I had read about, all of whom were eager to share their wisdom and their help.
  4. This is a global community.  There were people from many different countries, including PwPs, Caregivers, Doctors and Researchers who are all working together to find a cure and make life better for PwP’s.
  5. Meeting authors and hearing about their books.  Jon Palferman, one of my favorites, spoke about Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, one of the best PD books I have read.  Alice Lazzarini talked about her transition from cutting edge PD researcher to Person with Parkinson’s in her book  Both Sides Now: A Journey From Researcher to Patient.  I am looking forward to reading that next.
  6. We must advocate for ourselves to get the best care that we can.  Everyone I met has a story about misdiagnosis, wrong medications and bad doctors.  We, as People with Parkinson’s do have a voice, and even if it is a soft voice, we can and should be heard.

 

Here are a few of the posters and some photos

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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.