Twitchy Women get Creative

On Sunday, our Los Angeles Women’s Parkinson’s group, now known as Twitchy Women, met to explore creativity in People with Parkinson’s.  Many of us have found new creative outlets since our diagnosis, doing things we never thought we were capable of.  This has been documented many times in the Parkinson’s literature.  So we thought it would be an interesting way to spend a Sunday morning.

We began with drumming.  One of our members, Naomi, has been going to Japanese drumming classes.  She brought many improvised “drums” which were distributed to the group.  She begain by using sticks and tapping them to “Hello, my name is Naomi”.  Each person introduced herself in the same way.  And then the fun began. starting with one person tapping a background beat, and others joining in one by one with their own beats.  According to Naomi, the benefits of drumming can be physical, especially if you use big Japanese drums, and mental as you mirror other drummers, repeating their beat sequences and creating your own.

Amy Carlson has been making videos as a creative outlet.  And, she has been dancing.  As someone who never danced before, she was surprised that modern dance was something that she could now do, and do well.  So well that her dance instructor invited her to participate in a show, which Amy thought was a recital.  It turned out that the show was actually a professional show.  She showed several videos of herself dancing, and using her PD movements as part of the dance.

I talked about writing, something I never enjoyed doing before PD.  It began when my Psychologist suggested that I write my narrative.  I explained to the group that when you start, just write what you feel.  Don’t worry about what you learned in 8th grade grammar.  Just write.  You can always go back and make changes.  Writing can be very therapeutic and you can learn a lot about yourself.  I tend to write stream-of-conciousness when writing for me.  It is a way to write quickly and with a purpose.  There is no set structure, but editing later can pull the pieces together into a cohesive narrative.  I shared with the group an article that I found about writing your narrative that works well for this type of activity.

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Jen and her card

A mini-art workshop was led by Clara, who has been making art during her sleepless PD nights.  She shared some of her artwork with the group and then we got to work making our own greeting cards, using many different things that Clara brought for collages.

Finally, Tricia Lowe has been writing poetry about life with Parkinson’s.  I will leave you with her poem:

May you always have enough

Enough happiness to keep you content

Enough faith to keep you strong,

Eoungh hope to keep you happy

Enough failure to keep you humble

Enough success to keep you eager

Enough friends to give you a sense of community

enough wealth to meet your needs

Enough truth to banish depression

Enough determination to make each day comple

Even better than last week

Writing your Parkinson’s narrative

Life is changed in an instant.  The ordinary instant.”  Joan Didion

One thing that helped me immensely to accept my diagnosis and to understand what was happening to me was writing my story.  With the encouragement of my psychologist, I sat down at my computer and started to write.  And write.  And write.  Me – the person who hated to write.  Once I started, I could not stop. 7 pages and 3100 words later, I was finished.  For a little while at least.

I started by writing stream of consciousness.  Eventually I went back and organized my thoughts and the narrative started to make sense.  It also helped to put everything into perspective.  It was an eye opener for me.  And it was the first step towards a healthier attitude about living with a chronic illness.  Writing down your thoughts can help separate the imagined from the real.  It is therapeutic to say the least.  And I wish I had done it much sooner after my diagnosis.

As you write, you will probably recognize the 5 stages of coming to terms with a chronic disease in your narrative.

  1. Shock.  I have what????
  2. Denial.  Not me.  It must be a mistake
  3. Anger.  It is not fair
  4.  Fear.  What will happen to me?
  5. Acceptance.  Ok let’s get on with my life.

Start at the beginning.  Your life was changed the minute you heard those words “you have Parkinson’s Disease”.  Actually, it changed before that when things started going wrong.  Writing your story, your narrative, can help you identify those subtle changes that just didn’t make sense at the time.  It can also help you determine where you are in the process of coming to terms with your diagnosis and help you progress to Acceptance.  You may back track at times.  Anger and Fear tend to pop up regularly as new symptoms appear.  Write down your feelings as you document the changes.

Not only will it help you to cope, sharing it with your doctor or therapist can be valuable as well.  How many times have you walked out of your doctor’s office and realize that you forgot to tell her something important?  If nothing else, you can make a list of concerns and questions for your doctor’s visit based on what you have written.

Some tips I found for writing your narrative on the internet from Hope for Women Magazine

  • Write Quickly
  • Write with purpose
  • Write privately
  • Write without rules

You may decide not to share your narrative with anyone,  but it will be there for you whenever you need it.
journal

It’s the little things…..

It’s the little things that are a constant reminder…..

The pill boxes next to my bed, in the kitchen, in my purse

The stiffness in my ankle when I get up in the morning

The shaky foot when driving

The arm that doesn’t swing properly

The sleepless nights

The smile that isn’t quite right

The internal tremors

The foot that doesn’t lift quite enough to clear the steps

Losing my grip on the tennis racket mid-swing

The anxiety that builds up when sitting still too long at the dinner table, at a meeting or even watching tv.

The difficulty just writing an address on an envelope.

It’s those little things that are a constant reminder that Parkinson’s is still there, even though my meds are working well.  It’s those little things that are not necessarily “just getting older”, but may be signs of changes in Parkinson’s.  It’s those little things that remind me to cherish every day and enjoy life, because someday those little things may become bigger things unless a cure is found soon.

200 years after James Parkinson defined the “Shaking Palsy”, we are still looking for The  Cure.  Let’s not wait another 200 years.  Current research seems to be getting closer to more effective treatments, and maybe even the elusive cure.   This month is Parkinson’s Awareness Month.  Do your part and get the word out, advocate for PD research, educate others about living with PD.  Together, we can help to find the cure.

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#UniteForParkinsons           #Together4PD

 

 

Thank you James Parkinson

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On April 11, we will celebrate the birthday of James Parkinson, M.D., who published his groundbreaking essay 200 years ago in 1817 on what was then known as “the Shaking Palsy.”    His narrative reporting of six case histories is as readable as a 19th-century British novel, and has been called a “gem of the neurologic literature.” You can read the entire text here.

Last October, during Breast Cancer Awareness Month, I posted “Breast Cancer vs. Parkinson’s” to highlight the differences in approach to publicising these two diseases.  I am repeating it here because Parkinson’s Disease affects so many of us, yet does not get the PR that a “sexier” disease like Breast Cancer does.  We can and must do more to educate people about Parkinson’s, especially since the numbers of people affected are expected to climb rapidly in the coming years.

As a footnote to the blogpost, last month my daughter and I walked in a 5K for the Michael J Fox Foundation.  We had a great time, but the number of people who came and walked was probably less than a 10th of the number who walk for Breast Cancer.  And the same for corporate sponsors.  We need to do much better.

Breast Cancer vs. Parkinson’s

Almost eight years ago, I was diagnosed with Parkinson’s and Breast Cancer in the same week.  Obviously, it was a week when I wished I had just stayed in bed and hid under the covers.  How do you react to the news that you have not one, but two major health issues that will be with you the rest of your life?

Much of the next six months remains a blur to me.  I underwent a lumpectomy and radiation for the breast cancer.  A neurologist put me on ever increasing doses of Requip, and my estrogen patch was taken away from me.  All of this meant that I slept all day, was plagued by hot flashes all night and pretty much walked around in a fog all of the time.

Somehow I was able to come to terms with having breast cancer immediately.  My mother had it, my sister had it.  It is the disease that most women fear most.  And it is the disease that is talked about everywhere.  October is Breast Cancer month and there are a lot of stores that celebrate by producing Pink Products, or should I say Pink Profits?  It doesn’t matter how useless the Pink Products are, we buy them anyway because it makes us feel like we are doing something positive.   Celebrities talk with pride about recovering from breast cancer.  There are rallies and walks to raise money.  I even corralled my friends to walk with me as a team for the Revlon Breast Cancer Walk that first year.  We wore our Pink boas with pride as we finished our 5K walk and entered the field at the Los Angeles Coliseum where the Olympics were held.  We were Champions in Pink!  Breast Cancer is fashionable.

But Parkinson’s is another story.   It was hard to come to terms with 4884e7c347f2b13936d46ca87475e3b6that diagnosis.  I wasn’t that old (57), I wasn’t a man, I didn’t shuffle, and I didn’t know anyone else with PD in my family or circle of friends.  It was something my friend’s parents had, but they were much older and didn’t move very well.  There were no Parkinson’s products for sale in the department stores during Parkinson’s Awareness Month.  I didn’t even know there was a Parkinson’s Awareness month until this year.  Parkinson’s events were not well publicized.  After all, who wants to go to an event where everyone is shaking, drooling and shuffling?  Parkinson’s is definitely not fashionable.

I was active, playing tennis, going to yoga, traveling and enjoying life as much as possible.  I didn’t have time for a chronic degenerative disease.  I just had a tremor, so I tried to hide it.  And I kept trying, but after a while, people started to notice.  I thought that if I didn’t say anything, it didn’t exist.  So I did what my friends and I call the “Parkie hand-hiding strategy”.  You know the one where you hold your shaking hand, sit on it, stick it into a pocket or purse, or do some other strange maneuvers just to prove that it isn’t shaking.

But of course, that didn’t work and I was only fooling myself.  So why couldn’t I admit it to myself?  Why couldn’t I tell others?  It took a lot of therapy and writing my personal narrative for me to confront what I called the “Elephant in the room”.  Once I started to write my narrative*, which only my therapist was privileged to read, things started to change.  I started to write about life with PD.  But only for other Parkies.  The rest of the world still didn’t need to know.  And then one day, I made a mistake.  I posted something meant for my Twitchy Woman Facebook page on my public Facebook page.  And the world didn’t come to an end.  Wow!  I was outed.  And it was okay.

So now I have embraced my PD.  There is a wonderful world of people in the Parkinson’s community that I have met.  The time I spent last month in Portland at the World Parkinson Congress was an eye opener.  I was able to meet some people who I have corresponded with through this blog.  I talked to doctors, therapists and researchers who valued my opinion.  I  spent time with new friends and old friends, looking for answers and camaraderie.   We have a common bond and we understand each other.  And we don’t all shake, drool or shuffle.  In fact, we spent a lot of time working to dispel that image. We all have the Elephant in the room, reminding us that life is not the “normal” that it used to be.  But that elephant is getting smaller and smaller, and one of these days, hopefully very soon, it will be banished from our lives.

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With my friend Clara, looking good with PD in front of Anders M Leines mural “This is Parkinsons”

A letter to my daughter about living life with Parkinson’s

Dear Out of Town Daughter,

One of the things we love about you is your ability to see below the surface and voice your concern about what you see.  While we were with you last weekend, I could hear in your voice how worried you are about my Parkinson’s Disease.  As the only one in the family who lives away from LA, you see me less frequently than your sisters do, which gives you a different perspective of changes over time.  I know it can be difficult to see your parents showing signs of aging.  I went through that with Grandma and you saw how difficult that was for me.

Let me assure you that most days I feel great.  In fact, the only reminder on those days that anything is wrong is the alarm on my Fitbit reminding me to take my meds.  My life is filled with activity, little of it modified because of PD.

The days I don’t feel so great I can usually trace overdoing it or to a bad night’s sleep.  Like most people with PD, I have difficulty sleeping through the night.  You know how you feel the next day when the baby has a bad night, waking you up several times during the night.  Look at my insomnia as having the same effect, except that I don’t bounce back quite as quickly as you do.

So what does it feel like to have Parkinson’s?  Some days, as I said, are fine.  I am fortunate in that I have a slowly progressing type of PD.  It started as Tremor Only, which is usually the best case scenario.  After 5 years, I finally started Sinimet, the magic pill for PD, which immediately calmed down my tremors.  My hand hardly ever shakes anymore.  My foot is more of a problem and usually acts up when I am driving.  Other bothersome symptoms can be constipation, stiffness and slowness of movement.  Oh yes, and that thing you keep mentioning – that I look stooped over.  I try to stand straight, and yoga really helps.  My Movement Disorders Speciaist (PD Neurologist) says my posture is fine.  When I am tired, I tend to hunch over more.  You or one of your sisters used to complain that I looked angry all of the time.  That is what they call the Parkinson’s Mask, or frozen face.  That has actually improved since I began the Sinimet.

One other interesting side effect is compulsive behavior.  It can take the form of excessive gambling, compulsive shopping and even game playing on the iPad.  The compulsive behavior is often attributed to some of the PD meds.  I don’t go near a casino and try to keep my shopping limited.  But I do play a lot of games on my iPad and it can be difficult to stop.  I am not sure what your father’s excuse is, he is not taking my meds as far as I know.  I think he just likes games.

You also asked about my memory, or cognitive behavior.  I have been participating in a study through the Alzheimer’s center at UCLA.  So far, I have passed the cognitive test twice with flying colors, scoring as a 30 year old!  One of the things that happens as we get older, is that it sometimes feels more difficult to retrieve things from memory.  Think about your brain as your computer.  As you have more things stored in your brain over time, it can take a little longer (milliseconds maybe) for your brain to find the information it is looking for.   So when I am trying to remember something, it might be buried in some remote part of my brain that is difficult to access.  When your computer’s memory is full, it gets slower, too.  It can take many more commands (and time) to get the info that you need.

You asked if anyone went with me to my appointments.  Since I am such an independent person, I never really thought about it.  As I told you, your father usually goes about once a year to check in.  He also participated in one of the studies with me last year and had to answer a lot of questions about me in private.  I have no idea what he said.  I never thought of asking your sisters to go with me, but it is probably a good idea that each of them goes once so that they can ask any questions they have.

I am not going to go into the scientific explanations of what Parkinson’s is.  There is a lot of literature out there that explains it much better than I can.  I will recommend some reading for you.  For years, the thinking has been that PD starts in an area of the brain called the Substantial Nigra, and that by the time you are symptomatic, you have lost more than 70% of the brain cells in that area .  Recent discoveries are now saying that it is a problem that starts in the gut.  If this is true, early detection will be easier, perhaps with a blood test.  Also, because it is difficult to cross the blood-brain barrier with medicines that can be effective, this is seen as very good news for developing better treatments.

So I am feeling hopeful.  I am hopeful that my disease will continue to progress very slowly.  I am hopeful that a definitive test will be found that can identify those with PD much sooner.  I am hopeful that new treatments will either cure or stop progression of PD. I want to dance at your children’s weddings and I am hopeful that the new direction that PD research is taking is going to give me that opportunity.

Love,
Mom