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.

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

Responses to My Pity Party

We all need a day on the couch eating ( chips on my pity party days ) . Then we recharge and face it again with a brave face!!      Comment from a Facebook follower

Wow!  I never expected the response I got to my last post “It’s My Pity Party……”.  I try not to share the down-side of having Parkinson’s.  My goal is to write about living well with Parkinson’s.  However, the reality is that we all have bad days, so why not talk about them once in a while.  Apparently, it hit a nerve and the post was shared and shared and shared again.  The comments on Facebook prompted conversations among readers and it was fascinating to watch it unfold.  The power of the Internet never ceases to amaze me.

A few of the comments:

My hubby has parkinsons too, have to take each day as it comes, we are trying our hardest to carry on as normal, but some days it is very hard

My daily life exactly.

I am amazed that a complete stranger can feel my thoughts, pain and fears so intimately. Thank you so very much for sharing!  

This last comment almost brought me to tears.  I think that no one can describe accurately what it feels like to have PD (or any other chronic disease) unless they actually have it.  Although each of our experiences with PD is different, there are many commonalities which bind us together.

I would like to clarify one point that I made.  If you are overwhelmed by all the things that you HAVE to do, you are in charge of your life, so you can make changes.   YOU have the power to decide whether you want to do all the things you “have to” do, or if you can pursue the things you “want to” do.  Finding a balance between the two is difficult.  You may find that because of your Parkinson’s you either can no longer do some of the things you enjoyed before, or you have lost interest in many of them.  The experts say the best thing to do for your brain is to learn something new every day.  Why not take music lessons?  A painting class?  Take a class through the extension program at your local university.  You may find a new passion that will give you a reason not to stay in bed all day.   And, by the way, you can still eat your chocolate, too.




Taming the Sugar Monster

How often have you thought about changing your diet to see if it makes a difference for your Parkinson’s Disease symptoms?  And how long did it take you before you actually made the change?  It is so easy to take pills and supplements, to exercise, go to physical therapy.   The last thing many of us even consider is making a true lifestyle change and committing to a healthier diet.  And actually sticking to it.

When I was diagnosed with Parkinson’s 8 years ago, I swore that I was going to change my diet.  Of course, that never happened.  We travel a lot, so having the discipline for a healthy diet can be difficult.  However, several months ago, a 4 day long anniversary celebration in Chicago nearly did me in.  Too much food, especially carbs and sweet desserts, along with more drinking than usual (2 glasses of wine a week is a lot for me) hit me hard.  I paid for it for several days and decided that maybe now it was finally the time to make the change.

For the next month, my husband and I decided that sweets were off of our diet.  No more cookies, ice cream and other sweets   That was it for now.  No fancy diets, just good food, with lots of fresh veggies.   We did not eliminate all sources of sugar, just the obvious ones.  We ate fruit for dessert and handfuls of almonds if the munchies hit.  After a few days we didn’t miss the sweets and our snacking decreased.  We both felt better within a week and even dropped a few pounds.

I don’t know if this has helped my symptoms, but I do feel better overall. A month after we started this, we went on a weeklong trip to Ireland with friends.  We found that we were eating fewer sweets in general while on the trip.  Now that we are back home, we need to be more careful once again about what we eat.   Cutting out desserts is a small first step and relatively easy to do.

With all of the recent studies about the gut-brain connection for PD, there has been one consistent finding- sugar feeds the bacteria in the gut which in turn, may increase PD symptoms.  Some even say that there is a connection between Diabetes and PD.  Do an internet search and hundreds of articles will pop up immediately.  One thing most have in common is that PwP’s seem to crave sugar more than before PD.  Most recommend making a major change in your diet to cut back on the sugar.

I know that there are diet recommendations out there specifically for Parkinson’s Disease.   Has anyone tried a specific diet that helped relieve your symptoms or slowed the progression?  I am interested to hear what works for you.



It’s my Pity Party and I’ll Cry if I want to….*

Living with Parkinson’s presents many challenges in day-to-day living.  Most days, you get through just fine, in spite of  PD.  You rise to the challenges with a smile (or frozen smile) on your face.   But some days it becomes overwhelming.  You haven’t slept well for days, or maybe even weeks, your brain is fuzzy, your muscles are stiff.  And you feel like s**t.  Getting dressed to go to the gym takes too much effort.   Actually, the thought of getting dressed to go anywhere takes too much effort.  You know you will feel better after a workout, but you just can’t get motivated to go.  You’ve been up since 5:00 am and suddenly it is 9:00 am.  You have done nothing except check email and play games on you iPad, drinking cold coffee, and you have missed that class at the gym that you really needed.   So now what?

You wait for your meds to kick in, hoping that you don’t have to wait for the second dose of the day to feel better.  And you wonder what a day without Parkinson’s would feel like.  Wouldn’t it be great if you didn’t have to set the alarm on your phone to remind you to take those many pills you have to take throughout the day?  Even better would be to have a week, maybe even two weeks in a row, with no doctor’s appointments.  It seems that the majority of your time is spent taking care of yourself just so you can get through the day.  You can’t even remember what it felt like to to be “normal”.

Last week I had one of those days.  Coincidently, I happened to have an appointment with my therapist on what was a pretty bad day for me.  I was slow in recovering from a trip back east.  Too much food and too little sleep.   My mind and body were not working.  And it showed.  He told me that we should not feel guilty for staying home all day eating chocolate and playing games on our iPads, (or whatever it is that will make 200_syou feel better).  It’s ok to stay in your pajamas.  And furthermore, he said it is ok to NOT do the things you HAVE to do once in a while.  So what would happen if I put off that doctor’s appointment?  Skipped the gym once in a while?  More seriously, what if I didn’t take my meds one day?  That one I am afraid to do, but the decision to not get dressed and moving until noon occasionally is just fine with me.

So his advice to me was to go ahead and give in to it once in a while.  Have a “Pity Party” and cry if you want to.  Just don’t make it a habit.


*My apologies to Lesley Gore for mangling the name of her song.  For those of you who who have never heard of her, Lesley Gore had a hit song titled “It’s My Party and I’ll Cry if I Want To” in 1963.

Finding your Parkinson’s Community 

Today, two different people contacted me who were diagnosed with Parkinson’s in the last few weeks.  They are both shell-shocked by their diagnosis.   One of them said she is about 20% Parkinson’s and 80% fear at this point.  We have all been there.  Most people tend to retreat after their diagnosis. They don’t know where to turn; they do their best to hide the disease from others and from themselves.  Those with hand tremors try to hide their tremors by putting the hand in a pocket or holding it with their other hand.  As one Parkie friend says, they are doing “the hand thing” to convince everyone that they are ok.  

So what’s a Parkie to do?  One thing both of these women said was a priority was finding a way to get past the fear.   Finding a welcoming Parkinsons community is an important key to moving on and learning to cope with the disease.  This probably holds true for any chronic disease.  

 Right now I am about 20% Parkinson’s and 80% fear.  —  Dianne (diagnosed 2 weeks ago)

Last year  a woman was referred to me by a mutual friend. Before then, she had never even met another person with PD and she was afraid to come to the first meeting of a newly formed “women with PD” group we were starting.   We met privately after the meeting and she was surprised to see that none of us fit her own PD image bent over and shuffling old people.   We were all active and “normal” despite our various issues and limitations.   Encouraged,  she came to our next meeting and is now one of the most dedicated members.   And she learned an important lesson:   Stereotypes don’t apply to Parkinson’s.   Besides, most of us are really nice people to be with.

So how do you find your Parkinsons community?  Start by finding someone else with PD to talk to.   It really helps.  While your spouse, significant other or best friend may be there for you, they don’t — they can’t — really understand how you feel.   You need to find someone who is living well with PD who can be an inspiration to you.   If you can’t find anyone, ask your doctor to put you in touch with another patient who is open to talking to you.

Go online.  There are a lot of Parkinson’s blogs out there with many different points of view. Find the ones that “speak to you” and follow them.  Don’t be afraid to ask questions.   Most bloggers welcome the opportunity to interact with their readers.   Just beware of those that promise you the moon.   As of today, there is NO cure, but scientists seem to be getting closer so don’t’ give up hope.  There are also PD communities online where you can participate in chat rooms and conversations with people from all over the world. 

The best thing to do is to join a support group or attend exercise classes that are specifically for PwP’s.  There are dancing classes, boxing for PD programs, yoga, and much more.    Once you start going to the classes, you will find that the camaraderie in class is as beneficial to you as the exercise you are getting.    If there are no classes in your area, find someone qualified to lead a class for PwPs and start one.  You will be helping others and creating your own community at the same time. 

Some of my best friends have Parkinson’s.   We found each other through our PD community.   And best of all, when we are together, no one has to hide their symptoms and we have the freedom to just be ourselves.