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

Defined by her Art

Alison Paolini was an artist who happened to have Parkinson’s Disease.  Several months ago I was asked to contact her because she wanted tAlison Paolinio sell some of her artwork to benefit people with Parkinson’s Disease.  She had illustrated two books written by Kirk Hall several years ago titled  Carson and His Shaky Paws Grampa and Carina and Her Care Partner Gramma.  These stories are designed to help parents and grandparents comfortably talk about the initial symptoms of Parkinson’s and address common questions and concerns children may express.  Kirk had enjoyed working with her and spoke highly about her artwork.

A friend from my PD group and I met with Alison in July to talk about how we could sell some of her artwork at a reception for Women with Parkinson’s in the Los Angeles area.  We had been planning a tea to be held in November with Alison as our guest of honor.  However, on Friday I received the sad news that Alison had lost her battle with Parkinson’s.  

We were both impressed by her passion for art of all kinds.  Alison was a woman who graduated college at age 50, many years after  leaving school to raise a family.  She taught art in Northern California, participated in many art shows, led a support group for PD and belonged to a writing group.  We are sure that she has inspired many to follow in her footsteps.

In memory of this wonderful, multi-talented woman, we are hoping to continue with our plans so that her desire to benefit Women with PD through her art will become a reality.

 

 

 

 

A Fast Start

The new year started out at a very fast pace.  Michigan won big in the Citrus Bowl.  We watched as the LA Kings won their 5th straight hockey game giving them a 12 point lead in their division.  And then a letter to the editor that I wrote was published!

Last week, I  wrote a letter to the editor* of the Wall Street Journal in response to a column by Daniel Henninger titled “The Year Christmas Died”.  So, with a few minor edits from my husband, the writer in the family, I sent it off never thinking that it would get published.  Chalk it up to PD to encourage me to do something so unlike me in the past.  A year ago, I never would have even considered writing a letter to the editor, much less writing anything else of substance.  I would have talked about it, but that would be as far as it went.  But after writing this blog for the last 10 months, and gaining confidence in my writing skills, nothing is off limits anymore.

I read Henninger’s opinion piece and an accompanying piece titled
“Inclusive Holidays at Cornell” the day before Christmas.  I felt I needed to say something in response, so I sat down and started to write.  I could have responded online in the comments, but for some reason, I actually emailed it to the WSJ letters to the editor.  After I hit send, I was horrified!  What if they actually use it?  A week later, a letter was printed in response from someone else, so I was relieved.  Off the hook.  But Friday night, when the Saturday WSJ was posted on line, I took a look and there it was.  I looked again in the middle of the night and it was still there.  When I got the paper in the morning, it was there too.  OMG!!!  What have I done?

So, lesson learned.  Do not write something and send it immediately even though your PD is compelling you to do so.  Whether it is a blog page or a letter to the editor, sleep on it, let it stew for a day or two, and then send it if you still need to.  Another PD moment for the books.

Happy New Year!!!

 

 

 

Christmas Spirit Is Crippled, but Still Alive

Jan. 1, 2016 1:24 p.m. ET

Reading Mr. Henninger’s column and the accompanying “Inclusive Holidays at Cornell,” I am dismayed by how we have as a society, given in to the demands of the “cry-bullies” and whitewashed what was once an enchanting time of the year. As a Jew growing up in the Midwest, I never felt threatened by Christmas displays in town, and in fact I looked forward to seeing the Christmas windows at major department stores.

Walking through Los Angeles this December, I had to look hard for any store windows that would be enchanting for my grandchildren with the magic of Christmas, Chanukah or any other holiday celebration. In the cause of “diversity and inclusiveness” would we not be better off encouraging everyone to display signs of their religion, and actually celebrating our differences with each other? How sad that we have instead caved in to those who go out of their way to be offended by others’ differences and insist that religious celebration be hidden from sight. We can’t learn about, much less respect, each other and live together peacefully if we cannot celebrate our differences.

 

Sharon L Krischer

Beverly Hills, Calif.

 

 

 

 

 

Looking Forward to 2016

The cures we want aren’t going to fall from the sky. We have to get ladders and climb up and get them.

— Michael J. Fox

As 2015 comes to a close, those of us in the Parkinson’s community are excited about the many new  research discoveries regarding the causes and treatments for Parkinson’s Disease.  It seems that every week in the past few months, another discovery, whether it is a drug or therapy,  has shown to be effective in either slowing the progression of the disease or in some cases, even reversing it.  In the 7 years since I was diagnosed, I have never been so hopeful that maybe this year will bring the big breakthrough.

This is exciting news, especially since some of those drugs that show a positive effect in PD patients have already been approved for other diseases, thus reducing the time for FDA approval for persons with Parkinson’s.  Even salicylic acid, the main ingredient in aspirin, which we all have in our medicine cabinets, has proven to be effective for reducing the cell-death that leads to Parkinson’s.  Today there was even more good news.  Researchers at Scripps Clinic and Scripps Research Institute in San Diego are beginning trials on humans using stem-cells taken from the patient’s own skin.  Watch this video on KUSI News  Once the pilot project is approved by the FDA, the clinical trials should open up to multi-national research centers.  Researchers expect this to be a long term treatment for the movement disorders associated with PD.    FDA approval could be made in the next 24-36 months.

For me, 2015 brought about many changes.  My second grandchild was born in May, followed two weeks later by the passing of my mother.  It was a very tumultuous, emotional time for me.  I began writing shortly before my mother’s death, which eventually led to this blog.  This was one of the things that helped me to get through that very difficult time.  Thank you to all of my followers around the world.  It has been a very gratifying experience to share my “adventures with Parkinson’s” with all of you, making new friends because of our common bond.  I have almost 100 followers, so if you have not yet followed “Twitchy Woman” either here or on Facebook, please follow now so that we can get to 100 by December 31.

So looking forward to 2016:

A cure, perhaps?  Or at least a treatment that reverses the progression of PD.  Michael J. Fox said that the Michael J Fox Foundation has one mission – to find a cure – and once that cure is found, he will shut down his Foundation.  Let’s hope that 2016 is the year that he will close up shop.

For me, I plan to continue writing, enjoying this new-found creative outlet that I discovered after PD diagnosis.   Maybe I will end up like every other Parkinson’s patient with a blog and write a book.  OK, maybe a pamphlet.

Speaking of books, I hope to review a few more in the coming months, including the just published “Goodbye Parkinson’s, Hello Life!” by Alex Kerten, whose Gyro-Kinetics Center in Herzliya, Israel is a leader worldwide in treating clients with Parkinson’s and other movement disorders.  I have just started reading this and want to try some of his exercises for relieving PD symptoms.  Stay tuned.

I have become a PD Advocate for the Parkinson’s Disease Foundation after having spent a wonderful weekend with 25 other women with PD at the PDF’s Women & Parkinson’s Initiative conference last September.   I am looking forward to engaging with other women with PD living in Los Angeles.   On January 17, I will be hosting a meeting for women with PD to learn about the Women & Parkinson’s Initiative and to hear from a local PDF Research Advocate about getting involved in clinical research for PD.   If you are interested in this or future events for Women & PD in LA, please contact me directly.

IMG_0387I will continue to work on my boxing skills with Rock Steady Boxing NY/LA.  It is very hard work and great exercise.  Boxing has improved my balance and reflexes, and most importantly, my tennis game.   Besides, the men way outnumber the women in boxing classes, which makes it even more fun.  (Just don’t tell my husband).

Ommmmmmmmmmm……..yoga is the one calming activity that I regularly participate in.    It keeps me aware of my body, my balance and stretches my muscles.  I can still do a tree pose successfully most days, no worse than the others in the classes I attend.   Shavasana, Corpse Pose, at the end is better than a nap.  When I am done with class I am ready to take on the day.

Finally, I am looking forward to a year of new adventures with my husband, and not allowing Parkinson’s to take charge of me.  I will be in charge of my Parkinson’s and continue to enjoy life with my family and friends.

Wishing all of you a happy holiday and wonderful, healthy New Year.

Sharon

Hanukkah-And-Christmas-3  hdallpictures.com

Why do I write?

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200px-Musée_des_arts_et_métiers_-_Corona_typewriter

For those of you under 45, you probably never had to write without a computer.  I always hated the process of writing.  When I was in high school and college, the first thing you would do is outline what you wanted to say.  Then fill it out by writing, ON PAPER, whatever your assignment was.  Once you edited your paper, you would then type it on your manual typewriter.  If you made a mistake, you would have to either correct it by using White-out or start the page over again.  Needless to say, it was a long, tedious process and I hated it.  I briefly considered law school but decided against it because of the writing involved.

Fast forward 25 years.  I became president of my synagogue and then another organization.  Writing a monthly column for the newsletter was part of the job.  But now I had a computer and could write and edit as I went along.  Wow!  This actually became fun.  I no longer avoided writing.

Now I have Parkinson’s Disease.  One of the side effects of either the medications or the disease, can be increased creativity, along with obsessive behaviors.  And that unleashed the need to write.  First I started writing for myself.   Because I also have a need to research whatever ailment I have, (my OCD) I became a resource to others who were newly diagnosed with PD.  As a result, I started receiving calls and emails from people asking me if I would mind talking to their friend or relative who needed information.  That is when I started writing for others.  I actually wrote about this in a previous post called Creativity and Parkinson’s.

That was the reason behind starting the Twitchy Woman blog.  I could satisfy the urge to write and reach out to others at the same time.  It has been a wonderful experience and as a result, I have connected with others across the US and in many other countries who have PD.  We share our stories and information about the latest research and treatments, and hopefully help each other find our way to living well with Parkinson’s.