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.

Impulsive behaviors and Parkinson’s Disease

“What are you doing?” cried Mr. Twitchy.  “Is this because of the Parkinson’s?”  I was trying to clean out a closet, but my timing was awful.  Our kids were coming for early dinner so that we could go to Rosh Hashanah services.  And here I was emptying a closet, as if I had nothing better to do.  After writing about getting rid of the clutter a couple of weeks ago, I just had to move ahead on my promise to do so.  And nothing was going to stop me, except of course, Mr. Twitchy, who brought me to my senses.

In Parkinson’s disease (PD), ICDs most commonly include pathological gambling, excessive spending and hypersexuality.

So when do our actions become obsessive or compulsive?  And why?  According to the American Parkinson Disease Association (APDA):  “Impulse control disorders (ICDs) are behavioral disturbances in which a person fails to resist the drive to behave in ways that result in distress or impaired social and occupational functioning. In Parkinson’s disease (PD), ICDs most commonly include pathological gambling, excessive spending and hypersexuality. It is not uncommon for individuals to have more than one ICD concurrently or an ICD other than those listed above, i.e. impulsive eating, skin picking……It is the unusual extent and frequency of ICD behaviors that make them maladaptive and detrimental.”

Scientists have found a strong association between impulse control disorders and Parkinson’s meds , expecially the Dopamine agonists such as Requip and Mirapex.  However, a very small percentage of Parkies are afflicted by this.  Often a change in medications will reduce or eliminate the impulsive behavior.

That’s nice, but I think that the real reason is that those little “dopamine rushes” that we get from doing these things, whether it is going on a shopping spree and spending too much money, or sitting for hours in a casino, with each little win keeping us from leaving the table, are what is really driving us to continue following these impulses. It makes us feel good. And our dopamine deprived brains love it and keep us seeking more.

In my case, Mr. Twitchy often lets me know when I am focusing too much on the wrong thing, and he is usually right.  I could spend hours playing games on my phone, or doing something on my computer, totally losing track of the time.  The two hours in the morning before I have to leave for yoga often disappear and I find myself literally running out the door to get there on time (it is a 10 minute walk from my house).  When the impulse strikes, time management is impossible. But my brain is happy! So what’s the problem?

I suppose it could be worse.  I could be gambling or maxing out my credit cards somewhere.  But right now, I still need to clean out that closet.

Making A Clean Sweep?

“We should be choosing what we want to keep, not what we want to get rid of.” Marie Kondo

My kids have been bugging me to get rid of things in my house.  They tell me that I have too much stuff.  When I point out that some of it is theirs, they don’t want it either, but I should keep it here for them anyway, either because they can’t bear to part with it or they claim they don’t have room for it.

We have been inImage result for broom sweep our house for 30 years, long before Parkinson’s moved in as a permanent resident.  Raising three children and an assortment of dogs and hamsters kept us busy for many years.  The kids have all moved out, we are down to one deaf 14 year old dog,  and we don’t even notice all of that “stuff” until one of our daughters calls attention to it.  Where did it all come from anyway?

We are trying to go through things when we have a free hour or two.  Neither Mr. Twitchy nor I have the patience to do this for longer periods of time.  However, we do need to make a stab of cleaning out the house.  So I turned to my old pal,  Marie Kondo’s book:  The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing which was all the rage a few years ago.  Her basic philosophy:  When going through your things, hold each object and ask if it brings you joy.  If not, get rid of it.  And when you get rid of the object, say “thank you and goodbye”.

But Marie Kondo did not understand Parkinson’s.   We cannot choose what we want to get rid of.  Parkinson’s takes things away from us, no matter how precious they are.  Things that once brought “sparked Joy” are often reminders of who we were in a life before PD.  We don’t want to forget what we could do before, so we can’t let go.  Things we took for granted, such as driving, are challenged by the Parkinsons visitor in our homes.  Stairs become an obstacle course and tremors try to keep us out of the kitchen, away from sharp objects.   With Parkinson’s in the house, many things may not bring us joy anymore for a variety of reason’s, so do we just get rid of them?  It took us more than 15 years to part with the ski’s that we no longer used, because they reminded us of those wonderful times on the ski slopes with family and friends.  We knew we could not ski anymore, but year after year we put off giving them away.  The memories were just too strong to ignore.

And then there are all of those “souvenirs” from our travels around the world.  When our youngest went off to college, we started taking wonderful vacations and I often joined Mr. Twitchy on business trips around the world.  There was always something fun to bring home as a reminder of those trips.  Recently we realized, maybe we need to stop bringing back so much stuff.  It is taking over our house, as our daughters pointed out to us.

So the purge begins.  It often takes more than one time going through a closet or bedroom to determine what we no longer want.  Do we really need to keep all of those give-away t-shirts in ugly colors?  Oh, but that one was from the night Mr. Twitchy played guitar with his law firm band at the Whisky (where all of the famous rock stars played in the 60’s and 70’s).  So what if it is full of holes?  Or what about my calligraphy supplies from 20 years ago.  Many tubes of ink and paint are dried up.  Other things are missing.  It is difficult for me to write with Parkinson’s affecting my right hand.  But that is who I once was – a calligrapher who designed invitations.  How can I dispose of these things that remind me who I was before Parkinson’s?  This is the emotional aspect of “cleaning house”.  You know in your head, that you should get rid of those 4″ heels that you can no longer wear because of PD, but your heart just won’t let you.  How do you make that decision?  I just keep the shoes in my closet so that I can see them.  I can always dream, can’t I? (A certain Parkinson’s Diva I know would wear them anyway 🙂 )

Going through the things in my living room last week,  I realized that I really don’t need to keep everything out.  Some of it can be put away and rotated in from time to time, bringing new memories to replace the old ones.  The same goes for many other things that we have collected over the years, including books.  So many things that once seemed important no longer bring us “joy”.  With Parkinson’s living in our house, our priorities and our interests have changed.  It is time to let go of some of those things. but not all them.  We still need them around as reminders of who we really are, even with Parkinson’s.

A classic from George Carlin about “Stuff”.  Enjoy!

The World Parkinson Congress and why you should be there with me!

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The 5th World Parkinson Congress will take place in Kyoto, Japan on June 4-7, 2019. These meetings are unique and deserve both our attention and support.

It is not just that the meeting brings together doctors, patients, researchers, caregivers, and other allied professionals together for 4 days to talk about all  things Parkinson’s. It is also not just that there are a variety of session formats and sizes that will highlight new research, models of care, and collaborations that are changing the lives of those living with Parkinson’s today.

What really sets this meeting apart — and the main reason I am going for the second time — is that People with Parkinson’s (PwP’s) are centerpieces and not just observers.  We are welcome to participate in any sessions that interest us.  We are encouraged to lead a session, to submit papers,  posters, videos and other media and messages.  In other words, we are true equal partners and contributors in every sense imaginable.  (Full disclosure:  I am an official blogger for the conference and in that capacity, will be sharing my experiences there.  But having attended the 4th Congress two years ago in Portland and enjoyed and learned from it immensely, I would be going to Kyoto in any event.  And it’s a trip to Japan.)

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Parkie the Raccoon Official Mascot of the WPC

If it is even remotely possible that you can attend you owe it to yourself to seriously consider it.  What can you expect?

  • The opportunity to meet people from around the world who are making a difference for those of us living with Parkinson’s.
  • The opportunity to get to know other PwPs from around the world and to make new connections and, quite possibly, meaningful and close friends.
  • The opportunity to learn the most up-to-date news about all things Parkinson’s.

There is, literally, something for everyone including PwPs and their caregivers/family.   (I told  Mr. Twitchy not to attend Portland because I worried there would not be anything for him.  Big mistake.  So I asked him to come this time and he is very much looking forward to going.  Did I mention it’s a trip to Japan?)

Registration begins next week on September 10.   The website is https://wpc2019.org/ (or you can just click here).  If you are interested in volunteering, click here for more information.  If finances are an issue, travel grant applications will also be available in December.

One last personal pitch.  Before you go, or even if you cannot go, make sure to participate in our “messages of hope.”  Three women who became good friends of mine at the 2016 WPC– Naomi, Clara and Amy — were so inspired that they created a global project, Soaring with Hope 4 PD,  to promote hope for People with Parkinson’s Disease.  Their goal is to collect at least 12,000 messages of hope to be written on origami Cranes that will be part of an art installation at the Congress.  Let’s all take the time to contribute to that.

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* As an blogger, my “official” duties will be sharing my experiences.  But I hope to do more than that.  It would be wonderful to meet any of you who will be attending and also to create a photo gallery on the blog of as many of the PwPs I meet there as possible.  So please let me know if you plan to go.