Cranes and Hope 4 PD

We know that there are people in the Parkinson’s Community who are isolated, alone, and losing hope.   We want this project, “Soaring With Hope” to show them and the world that people with Parkinson’s have every reason to hope.

How many of you have heard about Soaring With Hope 4 Parkinsons Disease?

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About a year ago, I wrote a blog post about this amazing project.  The spark for the idea came soon after the last World Parkinson Congress in Portland, Oregon in 2016.

I spent a lot of time together with Naomi, Clara and Amy, at the WPC, meeting people from all around the world who shared our challenges and our hopes.  WPC-Highlights-lead-1024x683We were inspired by the photography murals created by photographer  with PD, Anders M Leines.  So inspired that Clara convinced him to photograph a large group of people with Parkinson’s in front of his fabulous exhibit.

One day at lunch back in Los Angeles, my three friends, Naomi, Clara and Amy, were talking about how Parkinson’s brought them together, creating a wonderful friendship.  How could they be happy with a chronic neurological progressive disorder?  They realized that by sharing their challenges with each other, that there was also hope.

In the Japanese tradition, 1000 is the common number of cranes to fold to represent hope and health.   Naomi, remembering that there were a 1000 Origami Cranes at her wedding as a symbol of hope, suggested that they create an art exhibit using Origami Cranes for the next Congress, which will be in Kyoto, Japan in 2019.  The idea became a passion for all involved.

The purpose of the project is to raise global awareness while giving hope to all in the Parkinson’s community.  The project started slowly, but has exploded in recent months.  Messages and folded cranes are coming in from around the world.   Soaring with Hope 4 Parkinsons Disease is now an official exhibitor at the WPC Art Walk in Kyoto.   They have received some corporate funding and there will be a raffle for two $2500 travel grants to the WPC.  For more information about the raffle click here.

Soaring with Hope has also been doing outreach into the community.  In the Los Angeles area, they have been having workshops with schools, Girl Scout troops and more, educating them about Parkinson’s Disease while folding cranes.  They have also been consulting with other PwP’s around the world who are doing outreach into their own communities with this project.  Their latest collaboration for international outreach is with Dance for PD, a program of the Mark Morris Dance Group in NY.  On December 1, they will be launching the PD Crane Dance Project, more information to follow.

The initial goal was 10,000 hand folded cranes each with a message of hope, and made with purpose and intention. Amazingly, they have surpassed that goal and now have    14,000 cranes. They have over 6000 messages from 21 countries, but need more messages.*

Naomi, Clara and Amy say that each crane will represent a unique story about one person’s hope, 14,000 + cranes flying together at the 2019 World Parkinson’s Congress in Kyoto Japan will be a powerful wave of hope and dopamine carrying us into a future where Parkinson’s is no longer a part of us.

*For more information on how you can participate, go to soaringwithhope4pd.org/

Desperately Seeking the Right Information

This was published several months ago but disappeared into cyberspace. Apparently Parkie hit a wrong key and it went somewhere else.

If you are the average person with Parkinson’s, it probably took you anywhere from 1-3 years to get the right diagnosis.  And once you got the diagnosis, your doctor gave you a prescription to fill and a return appointment 3 months later.  While you were in a state of shock from receiving the diagnosis, you were in no condition to question this.  You went home and crawled into bed, trying to figure out what lies ahead for you.

As a patient advocate, I have met many other People with Parkinson’s (PwP’s) who have had this terrible experience at the time of their diagnosis, myself included.  Yes, there is currently no cure for PD, but there are a lot of things that the person with PD can do to live well.  The delayed diagnosis and lack of education are probably the biggest obstacles for us at the beginning.  We may not be told to exercise.  We may think that PD only happens to older men who are shuffling and stooped over.  We do not know that there are many things that we can do to improve our situation, with medication, exercise, therapy and more.  And we most likely do not know that there are a huge number of people who have been living with PD  for years and are living active productive lives

One of my primary goals, and that of other patient advocates who I have spoken to, is to reach out to Primary Care Physicians and Neurologists to encourage them to do the following to ease the shock of the diagnosis:

1:  Refer patients to a Movement Disorders Specialist (MDS) if there is one nearby.  A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease (PD) and other movement disorders including dystonia, chorea, tics and tremors.  They are more knowledgeable about the latest treatment options, the need for exercise and all things Parkinson’s.

2.  If they cannot refer the patients to a MDS, have materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, local support groups or organizations, and other resources available for the patients.  PwP’s need to learn what they can do to help improve their quality of life early in order to cope with their diagnosis.  This new, unwanted friend will be with them for the rest of their lives, so the sooner a person can take action, the better off they will be.

3.  Schedule a follow-up appointment within a month and encourage the patient to bring someone with them to listen and to ask questions.

4.  Connect the newly diagnosed person with Patient Mentor who can talk to him/her on a personal level about living with PD.   Several organizations have Patient Ambassadors or Mentors who are comfortable in this role and are happy to help.  I have met a number of newly diagnosed Parkies for coffee, and they are always surprised when they see me since I don’t fit the image that they had of someone with PD.

5.  Most importantly, the doctor should tell them to start moving.  Exercise has been shown to be the best medicine for PD.  They should advise the PwP to start slowly if he/she has not been exercising, and increase the duration and intensity over time.  A referral to a physical therapist trained to work with PwP’s is always a good first step to living well with PD.

NO ONE should be sent home with only a prescription and a return appointment 3 months later.  Given the right information and instructions, the newly diagnosed Parkie will be much more prepared for a future with Parkinson’s.

Going to Brain Boot Camp

How many times have you entered a room and could not remember why you went there?  Those names on the tip of your tongue don’t come to you until it is too late.  And where, oh where, did you put your keys?  Cellphone?

Last week I went to camp for a day.  Brain Boot Camp.  Several months ago I received a call from the Longevity Center at UCLA.  They were offering a Brain Boot Camp session for People with Parkinson’s at a discount.  Would I be interested in organizing it for my group?  I sent an email out and got a great response from the LA based Parkie’s on my list.  So much so that we had to schedule a second session to accommodate everyone who wanted to attend.

Memory problems are not unique to Parkinson’s.  They are common with aging.  However, cognitive decline is a big problem for many Parkies, so this class was just one more form of therapy for us to keep our Brains functioning as well as possible.  We can help to slow the cognitive decline by working our brains on an ongoing process.  Just going to one class is not going to have a lasting effect.  It was really a jumpstart for us.  Now we need to utilize the tools we were given.  In addition to the strategies that we learned for memory,  there are other things we can do to keep the neurons functioning.  We talked about diet, sleep, and activities such as  learning a new skill, a new language, or musical instrument, doing crossword puzzles, sudoku, and other brain games that are offered online.

Last week was the first of two sessions, led by Angela Huntsman, PhD.                          Brain Boot Camp is a memory class that was developed by Dr. Gary Small, professor of Psychiatry and Director of the UCLA Longevity Center, to help people learn strategies to improve their memory.  His book, “2 Weeks To A Younger Brain: An Innovative Program for a Better Memory and Sharper Mind” covers what we learned in class and more.  In the class we learned about the different types of memory and how they are stored in the brain.  We also discussed diet, sleep and other factors that may affect memory.

Dr. Huntsman began with a story.  She met her new neighbors, Brett and Kate, and wanted to find a way to remember their names.  Aha!  Brett reminded her of her Brita water filter.  Unfortunately I don’t remember what her clue was for Kate, I apparently did not commit it to my long term memory.   Periodically throughout the day, she would ask us who her new neighbors were, and we all remembered!   By telling us the story, we had to focus, so recall became much easier.

The key to improving your memory is to FOCUS.  Too many times we don’t pay enough attention to remember things, which can be an embarrassment when you have forgotten your host’s name 5 minutes after being introduced.  We usually can remember 5-7 chunks of info, so to remember the names of those people you just met or that grocery list, find a way to make it meaningul.  It could be putting the names or items together in a story, or visualization.

The first class was great.  Everyone who attended really enjoyed it.  The second class will be held next Wednesday, October 24 at 9:00 am at UCLA.  There are still a few spots available, so please get in touch with me by Sunday if you want to attend.*  There are classes offered around the country.  To find out if there is one near you, click here.

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Additional support for this event was provided by the Meyrow Foundation’s Wellness Fund

*Brain Boot Camp Flyer

Tennis Anyone?

Tennis seems to be the perfect exercise to help PD – the hand-eye coordination, sudden quick movements, the thinking process used to execute a shot.  Jan Jackson

Tennis has been one of my passions since I was a child, playing with wooden tennis rackets that we had to store in a wooden frame to keep them from

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I wish I still had this racket!

warping. My earliest tennis idol was Billy Jean King and I even had a Billy Jean King tennis racket. When Mr Twitchy and I moved to Los Angeles, playing tennis was an easy way to meet new people.

Eventually the wooden tennis racket gave way to the new lighter graphite rackets in the 80’s and my tennis game improved. My tennis idols and my rackets have changed over the years and I have been fortunate to have attended 3 of the 4 Tennis Open tournaments in the last 10 years. I am hoping that I will be able to get to the fourth, the French Open, in the next few years.

When we moved to a new house and new school for our kids, tennis was again the intro to new friends. In fact, I have been playing in a regular game for over 25 years with three other women whom I met at the elementary school Tennis Tournament Fundraiser so long ago. They are my friends, my confidants.

After my tremor started 10 years ago, they were the first to know about it. When it was difficult to talk about my Parkinsons diagnosis, they were the ones who were there for me, refusing to let me take the easy way out and quit playing tennis. When I told one doctor about them, his advice was to “keep those friends”.  That was the easiest doctor’s order I have ever followed. Tennis has literally kept me going through the worst of times with PD. It hasn’t always been easy. My stamina and balance vary from week to week, my feet don’t always move as well as they should and I frequently lose my grip on my racket for no reason. I have often thought about finding a way to glue my racket to my hand so that I can’t lose my grip.

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My photo of Rafa at Wimbledon, 2010

So I was not surprised to see a website about Tennis and PD posted by PD blogger, Gary Sharpe, about the benefits of tennis for Parkinson’s from a program titled  Educational Tennis For Parkinson.  The only problem is that the article is in Italian!  Fortunately, Google translate came to the rescue.  From their website comes this description of their program:

Tennis by many scholars is considered the most complete sport. The Educational Tennis Program for Parkinson ® program specifically designed and created for those suffering from Parkinson’s disease in the initial and intermediate phase, tends to help them to carry out a sport activity whose main objectives are: to develop cognitive skills, to stimulate the motility of everything the body, develop the coordination, stimulate the respiratory system, stimulate concentration, develop automatisms, develop the metabolic function, favor the reappropriation of a serene relationship with one’s physicality, enhancing one’s own potentiality, support for an improvement in the quality of life . (please excuse grammatical errors, this is directly from the Google translation)

Whew!  That is quite an ambitious statement!  I love the “serene relationship” part.  Overall, I agree with them totally.  Tennis is a great total workout for you, requiring hand-eye coordination (not always easy with PD), quick movements and lots of concentration.

Sharpe also posted an article by Jan Jackson, a woman with PD who plays 🎾, this time in English.   She put into words exactly what it has felt like for me playing tennis with PD.  She increased the amount of time she plays tennis because of PD.  On the other hand, I had decreased my playing to once a week because I found that there was little extra time for tennis in addition to my regular daily exercise programs (yoga, boxing, etc.)  However, I have recently added a second day of tennis, with a “Live Ball”* clinic at the club we belong to, that has really helped improve my game with PD.  I am hoping to be able to add another day of tennis to my workout schedule sometime soon.

My hope is that I will continue to play tennis with my friends, Gayle, Martha and Lenore,  for many more years to come.  Thank you for being there for me all these years.

*Live Ball is a fun doubles king/queen of the courts-type game played where tennis balls are fed by a tennis pro to start points instead of serves.

Hey baby it’s cold outside!

From somewhere in the North Atlantic between Iceland and Greenland

Hey baby it’s cold outside! And windy and rainy. Not a good combination for Parkies. Mr. Twitchy and I embarked on a cruise from Reykjavík to Montreal yesterday after a couple of great days exploring Iceland. Submerging in the warm waters of the Blue Lagoon was truly therapeutic. The sights along the Golden Circle were wonderful. And now we are on the second of 3 days at sea on a rockin’and rollin’ North Atlantic. Walking anywhere on the ship has been a challenge, adding PD to this has only made it more fun!!! In fact, everyone on the ship looks like the have PD balance problems. When I returned to my suite at noon, I was treated to the most spectacular rainbow! That made up for the bad weather.

In Other News

October 1 marks the return of Breast Cancer Awareness month. I have seen a big uptick of views of the blog post “ Breast Cancer vs Parkinsons“ in the last few weeks. What I wrote two years ago in that post still holds true. Bloomingdales was already pushing their promotion when I was there last week. And then I got an email the other day that the very popular game, Words With Friends, was jumping into the promotions as well. This October, they want you to join Words With Friends as you “Play Pink For The Cure”; if 6 million Pink Ribbon tiles are played before 10/21, Zynga will donate $100,000 to benefit Susan G. Komen.

This means that a lot of people will be playing the game and will be getting the message about supporting breast cancer research. That’s terrific, and I will support it because I am a Breast Cancer survivor. Maybe we can convince Zynga, the game company that produced Words With Friends, and other game developers to do the same thing for PD next April. Think of the possibilities!

In the meantime, you can support the Parkinson’s Foundation by signing up for a Moving Day walk near you this fall. If you live in the Los Angeles area and would like to walk with Twitchy Women on October 21, join our team. If you can’t join us, consider making a donation.

If you can, support both causes. These organizations are doing great work to help find a cure and to improve the lives of those who have Breast Cancer and/or Parkinson’s Disease.