For the newly diagnosed

 Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.

One of the most satisfying things that I have done has been leading a support group for women with Parkinson’s.  We started meeting almost a year ago, beginning with a group of 13 that has grown steadily throughout the year.  Occasionally I have interviewed women at our meetings to get a more in-depth picture of their story instead of having a “gripe session”.  I have found that telling your personal narrative is very powerful, both for the person telling their story and for the audience.  By going more in depth, issues are often raised that would not normally come out.  It is interesting to see the “light bulb” go off when someone else identifies with something in the narrative.  This reinforces the fact that we are not alone in this journey with Parkinson’s.  Although each of us has a different trajectory there are many commonalities that bring us together.  Here is the story of a woman who was just diagnosed a few months ago.

Jane is an editor,  whose symptoms did not begin with a tremor, unlike most of the women present at the meeting.  She was diagnosed in September after going from doctor to doctor to find out what was wrong.  She had a bout of sciatica two years ago which was followed by dizziness.  She felt she was moving slowly and with increasing difficulty.  She went to many different doctors including a neurologist, cardiologist, audiologist and an ayervedic practitioner, and was put through many different tests, which all came back normal.  One doctor suggested that it might be PD, but there was nothing definitive enough so he dismissed the idea.   Finally a naturopath in San Diego recommended an EMG which is a neuromuscular test.  The results were abnormal, so Jane then sought a second opinion with a neuro-muscular specialist.

It took three months to get into a specialist.  In the meantime she had bunion surgery, which was necessary, but only made it harder to figure out what was wrong.  She felt confused and adrift.  She was distressed that she couldn’t move fluidly. She also noticed her handwriting was getting smaller, movement in bed was more difficult and movements involved with cooking  such as cutting and stirring were more challenging.

When she finally saw the new neurologist, he said he thought she had Parkinson’s.  By this time she had been doing some research on the internet and suspected that was the problem.  So when he dropped the P-bomb, she felt she was somewhat prepared for it.  She had a DaTScan which confirmed the diagnosis in September.  The movement disorders specialist that she was referred to was not the right doctor for her.  She felt the doctor was not interested in what she had to say.  She said “yes, you have PD” and then proceeded to give her instructions without listening to Jane.  She told her to exercise for an hour a day, 6 days a week.  As Jane said, she could barely move and felt that the doctor set the bar too high for her at that time.  She was very upset and felt overwhelmed.  The doctor gave her a Neupro patch and sent her on her way.

Jane went back to work.  The Neupro didn’t work at all.  She finally told the people at work, who were very supportive.  The interesting thing was that the younger people were much more empathetic than the older people who had a different view of PD.   Two days after her diagnosis, a friend referred her to an oncologist in the Bay Area who was diagnosed 20 years ago and is successful and thriving with Parkinson’s.  The conversation she had with him gave her hope and it was the most helpful thing for her.  Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.  It changed her entire outlook.

She was referred to our support group by a friend of a friend.  At the last meeting she talked to several women who gave her the name of another doctor, whom she made an appointment with.  The doctor changed her meds, referred her to someone for LSVT which is a speech therapy method for training your voice to be louder, and she feels that she is finally getting the right care that she needs.  Working full time is much easier now that she is feeling better.

Her recommendations for the newly diagnosed:

  1. The doctors should have an informational pamphlet to hand out with frequently asked questions and a list of local services for people with Parkinson’s
  2. Get a second opinion if you are not happy with your doctor.
  3. Find someone else with PD you can talk to.  A buddy who has had Parkinson’s longer   than you, who can answer questions, be a shoulder to cry on and just be there for you.

There are some resources available now.  Two of them are  Parkinson’s Diagnosis Questions from the Michael J Fox Foundation and For the Newly Diagnosed from the Parkinson’s Disease Foundation.  Both of these had input from people living with Parkinson’s, which is very important.   We should encourage our doctors to hand them out to newly diagnosed patients as a resource.  Some of us in the room were given no information when we were first diagnosed.   There are so many questions and we did not know where to turn to for answers.  There are also many local resources that should be compiled in a list to give to the newly diagnosed.  And finally, we talked about setting up a network of Parkinson’s Buddies to help the newly diagnosed.  After all, no one should go through this journey alone.

Some recommended reading for the newly diagnosed:

These are some of my personal favorites.  There are a lot of books out there, with many touting magical cures.  Please be aware of this when looking for a book about Parkinson’s.  There is no magic cure, but there are definitely strategies for living better with PD.

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palferman

Always Looking Up: The Adventures of an Incurable Optimist by Michael J Fox

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition by Dr. Michael Okun

And for women:  Parkinson’s Diva by Dr. Maria de Leon

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.

 

Goodbye Parkinson’s, Hello Life!

…we’re going to learn how to feel good, we’re going to learn about our body’s rhythm and patterns, and pay attention to our body language and our facial expressions. By changing our script and eliminating our behavior of fear, we can bring ourselves back to a place where our natural movements dominate our Parkinson’s movements.

-Alex Kerten

Last fall I ordered the not yet published book, Goodbye Parkinson’s, Hello life!  I eagerly awaited this new book on exercise for Parkinson’s which sounded very promising.  After all, I am willing to try just about any form of exercise that will help.   The book came last month and I have been playing with the exercises outlined by author Alex Kerten.

The basic theory laid out by Kerten, an exercise physiologist based in Herzliya, Israel, is that with movement, music and rhythm – creating motion in the body – you stimulate simultaneous physiological, biological and psychological reactions.  This will bring you back to a place where your natural movements dominate your Parkinson’s movements.  This is the foundation of what he calls the Gyro-Kinetic method.  Throughout the book he uses the “Oscars” as a metaphor for moving through life with PD.  By changing the movie script of our lives after diagnosis, we can actually break out of the acquired chronic habits of Parkinson’s.  We must become Parkinson’s Warriors; throw away the script that has been handed to us and write a new one.

First, Kerten stresses that this program is to be used as a complement to, not instead of, a medication program.  He says you will feel better by learning about certain behavior patterns that create chemical imbalances that take you away from your home-base center of balance and contentment. The goal is to learn how to regain that center by synchronizing your thoughts and actions.

The exercises are designed to put you in touch with your body, focusing on breathing, movement, self-massage, conducting music and improvised dances.  This will help you learn to regain your abilities that have been curtailed by PD.  By doing this, Kerten says you can “FAKE IT UNTIL YOU MAKE IT” and win an Oscar for acting out the script of “I’m a Healthy Person with Parkinson’s Symptoms.”  There are the usual testimonials from doctors and patients regarding the benefits of the Gyro-Kinetics method and much more information about Parkinson’s Disease.

But the heart of the book is the exercises.  What I love about the them is that you can do them anywhere.  Just put on some music and start moving.  The written descriptions of the exercises can be a little confusing, so take the time to go to the website and view the 6 minute video of some of the exercises before you start.  You begin by moving your feet, then add your hands and facial expressions.  Then combine all.  After that you get to conduct the music.  (Did you know that conductor’s have a longer than average life expectancy because of the physical exercise involved in conducting?)  By conducting, you become one with the music.   And finally there is free dance.  Just keep moving and don’t worry about how you look.  There are more exercises in the book and Kerten also offers on-line Skype sessions if you need more personalized attention.tT8hQLq3Nx-4

So far, I’m a fan.  There is a good chance that if friends and family can’t find me, I will be dancing privately somewhere no one can see how silly I look.  And having a great time doing it.