How Are Women with Parkinson’s Different than Men?

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The new image of Parkinson’s DIsease

What image comes to mind when you hear someone has Parkinson’s Disease?  I am sure it is not what you would have seen in Houston at the Women and PD TALK National Forum last week.

In a little over 2 years from concept to fruition, the Parkinson’s Foundation’s Women and PD TALK initiative held 10 regional Forums in the past year, and a final National Forum in Houston last week. Three years ago, at the Parkinsons Disease Foundation’s (now Parkinsons Foundation) Women & PD Initiative conference that I was privileged to attend, one of the key take-aways was that there are disparities in research and care between women and men with PD.  To date, there had not been any studies to look seriously at these disparities and we wanted to know what could be done to improve the care and treatment of women with PD.   A year later, Ronnie Todaro, VP at the Foundation who had led the Women & PD Initiative, applied for a PCORI (Patient Centered Outcome Research Institute) grant to help fund Women & PD TALK.

Because the grant required patient involvement, I was honored to be named a co-lead on the project, along with Dr. Allison Willis, Assistant Professor of Neurology, Perelman School of Medicine, University of Pennsylvania.  We worked with Megan Feeney, M.P.H.
Manager, Community Engagement at the Parkinson’s Foundation to put everything in place for this initiative.

There were 10 regional forums, with sites chosen to represent large urban areas as well as more rural areas.  Each  forum leadership team included a Woman with Parkinson’s, a Movement Disorders Specialist or Neurologist and an Allied Health Professional.   About 40 participants, both women with PD and Health Professionals attended each of the full day events.  Breakout groups at the forums gave valuable information on Risk, Symptoms, Treatment and Care.

50 people, about a third of them women with Parkinson’s Disease, gathered in Houston at the National Forum to go over the findings from the 10 forums and begin to set some goals and create recommendations and action plans.  There is too much to report here now, but there will be some specific recommendations to improve the care and treatment of women with Parkinson’s in the final report.

Meeting with such strong women, both people with Parkinson’s and health professionals, makes me proud to be a part of the PD community and inspires and empowers me to do more.      Kelly W

What was most interesting to me is that while there are definitely differences in symptoms and reactions to medications, many of the disparities were more cultural and social.  Just a few examples:

  • There are a significant number of women with PD who are caregivers, taking care of children, elderly parents or sick spouses and there is no one to take care of them.
  • Women tend to go to their doctor’s appointments alone, while men do not.  In fact, women go alone to most things related to PD.
  • Women do not go to support groups as often as men.  Some reported that when they went, they were asked who they were taking care of.  No one believed that they were the one with PD.
  • Being treated dismissively by doctors. Told it was all in their heads, and in many cases, especially for younger women, it was because of hormones.
  • Women need to connect to other women with Parkinson’s. There was a lot of talk about the need for mentors to be paired with the newly diagnosed, to make the disease less frightening and be there for them when needed.
  • Exercise, Exercise, Exercise!!!! We can’t say it enough.
  • And finally, can we get rid of that awful caricature of a man hunched over with PD and replace it with the photo above of 11 amazing women with Parkinson’s?

Thank you  Ronnie, Megan and Dr. Allison for giving me the opportunity to be an integral part of this team.

A full report will be issued, with specific recommendations and strategies to improve the lives of women with Parkinson’s Disease, sometime in the spring of 2019.     I am looking forward to sharing it with you.  In the meantime, click here for the link for the press release about Women and PD TALK.

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

Image result for billie jean king wooden tennis racket
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.

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!

Thank you Alan Alda

I decided to let people know I have Parkinson’s to encourage others to take action. I was Diagnosed 3 and a half years ago, but my life is full. I act, I give talks, I do my podcast, which I love. If you get a diagnosis, keep moving!

Watching Alan Alda’s interview on CBS this morning was inspiring and uplifting.  Mr. Alda could possibly be the best celebrity spokesperson, after Michael J Fox, for getting the word out that Parkinson’s is not a death sentence.  In a 7 minute interview, he covered so much of what my fellow bloggers and I have been writing about, and the most important message he gave is to “keep moving.”  I can’t repeat that message often enough, because it has worked so well for me and many other Parkies that I know, for the last 10 years.

Watch his inspiring video here:

https://www.cbsnews.com/video/alan-alda-reveals-parkinsons-disease-diagnosis/

Alda insisted that his doctor test him for Parkinson’s after reading an article about how one of the early signs of Parkinson’s is acting out dreams, which he was doing.   One of his first symptoms a short time later was a twitch in his thumb.  His reaction was not fear.  He wanted to help his family understand the disease and stressed that each person with Parkinson’s experiences the disease differently, even from day to day.

He sees PD as a puzzle to be solved.  You have to figure out the pieces of the puzzle that work for you to carry on a normal life.  It is a challenge that you must meet and you have to find a way to approach it.  He enjoys solving puzzles, something that I enjoy as well.

Alda approaches life with enthusiasm and hopefully will inspire others to do as he does:  keep on moving.  He boxes 3 times a week, plays tennis twice a week, and marches to Sousa music.  He says that marching to music is very powerful for PD.

Most importantly, he wants to get the word out that Parkinson’s Disease should not be feared and that there are things you can do to live well with PD.

“… I think because I’m sort of well-known, it might be helpful to people to hear the message that there are things you can do. You can learn about things and not follow quackery, but find out what real science is coming up with. That helps. It helps to keep moving. It helps to move rhythmically,”

I hope that Mr. Alda will consider coming to the World Parkinson’s Congress next June in Kyoto.  His message of hope is powerful and it needs to be shared with the Parkinson’s community and with the world.