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

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.

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!