Revisiting Breast Cancer vs. Parkinson’s Disease

Each October, we’re met with a wave of pink ribbon products raising awareness and support for organizations fighting breast cancer.

Charity Navigator

October is Breast Cancer Awareness Month. Every year, Bloomingdales partners with several Breast Cancer organizations to raise money for research and treatment with its Give Pink Get More promotion. For $15, you can register your Bloomies card and recieve a gift card at the end of the month for a percentage of your purchases. A win-win for all involved. Even the Bloomingdales logo has a pink ribbon in place of the “L” for the month.

Throughout October the store sponsors events related to Breast Cancer Awareness Month. On Saturday I attended a yoga workshop at my local Bloomingdales before the store opened. The event was extremely well attended by women of all ages. For $10 you could attend the session and take home a pink yoga mat and other goodies.

Almost exactly 10 years ago, I was diagnosed with breast cancer (12/08) and Parkinson’s (saw doctor for symptoms beginning 10/08, diagnosed a year later). As I have written previously, it was much easier for me to come to terms with a breast cancer diagnosis than a PD diagnosis.

Why? There is so much support for women with Breast Cancer that it is almost a badge of honor. Many stores are pushing their “Pink” promotions. I even got an email from Charity Navigator with the following statement: “Each October, we’re met with a wave of pink ribbon products raising awareness and support for organizations fighting breast cancer. With so many organizations vying for your attention, it can be hard to know which ones are worthy of your support.”

Charity Navigator also comments on the fact that many companies are using charities as a marketing tool because it works.

Here are some findings from a 2013 Cone Study on cause-related marketing:

  • 89% of consumers would be likely to switch brands (if quality and price held constant) for one that’s affiliated with a charity, compared with 80% in 2010 and 66% in 1993.
  • 54% of consumers bought a product with a social and/or environmental benefit, compared with 41% in 2010 and 20% in 1993.

For diseases like Parkinson’s and many other “rare” diseases, there is little or no product marketing to raise awareness of the disease. April is Parkinson’s Disease month. Were you aware of that? Not many people are. We have our Parkinson’s walks throughout the year, not just in April. The one in Los Angeles this year is in November, not April. Why are we doing it now? The end result is that our message gets muddied and lost among the many other worthy causes.

Perhaps it is time for all of the PD organizations to work together to create a consitent and timely marketing plan. There is the Unity Walk in NY each April, but as far as I know, that is the only one of its kind in the US that encourages all of the organizations to participate together in April. Yes, it is difficult to coordinate multiple events in the same month, especially in large urban areas that may have walks in 3-4 different locations. So maybe we take the advice from the Cone study and find reputable partners to work with the PD organizations in April to get the word out about Parkinson’s Disease. A green yoga mat with tulips would be a great start! Are you listening, Bloomingdales?

Yoga mat by Bghnifs available at Amazon

Breast Cancer vs. Parkinson’s – a second look

Last October, I wrote about the differences in how Breast Cancer and Parkinson’s Disease are perceived in the general public.   Unfortunately, not much has changed in the last year.  Since October is Breast Cancer Awareness Month, I would like to revisit the topic.

This past April, during Parkinson’s Awareness Month, it was once again, very difficult to find anything outside of the Parkinson’s community that made people more aware of Parkinson’s Disease.  Even though April marked a major milestone for Parkie’s, the 200th anniversary of James Parkinson’s groundbreaking paper on the “Shaking Palsy”, PD still remains the disease that no one wants to talk about.  Yes, there is the occasional feature on tv news, usually of a boxing class for people with Parkinson’s, but not much else.

Breast Cancer, on the other hand, is still the “sexy” disease.  Numerous people participated in the Revlon 3-Day walk in September, complete with silly costumes.  My guess is that some of them joined for the fun, not because they or a loved one has Breast Cancer.  Everyone wants to find a cure for Breast Cancer, so these people support it because it is a good cause.  I can’t imagine anyone without a connection to Parkinson’s doing the same thing.  In addition,  I am waiting to find out what pink items the department stores will be featuring next month.  After all, these are things I must purchase to find a cure.  They can’t do it without me!  No one asked me to buy anything to find the cure for PD last April.  Someone needs to come up with a campaign to improve the image of those of us suffering from Parkinson’s.  We really do deserve it.

So here is my post from last year.  Do you have a similar story?  I would love to hear from you about your experience.

October, 2016

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

4884e7c347f2b13936d46ca87475e3b6.jpg
Is this really typical?  Do we all look like this?

that 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 talk-about-the-white-elephant-in-the-room.pngchange.  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.

 

Thank you James Parkinson

ShakingPalsy1

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.

20160921_095559
With my friend Clara, looking good with PD in front of Anders M Leines mural “This is Parkinsons”

Parkinson’s Awareness Month and More

There is much to share with you this week.

April is Parkinson’s Awareness Month.  Join the Parkinson’s Disease Foundation Team During Parkinson’s Awareness Month    Friday, April 1- Saturday, April 30 (Online & around the US)

What will you do to help raise awareness this April, Parkinson’s Awareness Month? Join the team to #EndParkinsons with PDF and help make a difference in the PD community!

Click Here to Learn More

Last month, my Movement Disorders doctor, Indu Subramanian, asked me to write about my experiences with yoga and PD for the Brian Grant Foundation’s Power Through Project.  She worked with a yoga instructor to produce videos for the website about the benefits of yoga for People with Parkinson’s.  My story and Dr. Subramanian’s videos are now up on the  Power Through Project website.

Sunday, we had another great meeting for Women living with PD in Los Angeles.  Invertigo Dance Theater’s Sofia Klass and Linda Berghoff (also a PWP) teach Dancing Through Parkinson’s in various locations around LA.  They led us through dance sequences IMG_0824designed specifically for people with Parkinson’s Disease.  Special thanks to the The Wallis Annenberg Center for the Performing Arts in Beverly Hills for hosting us.  I had the opportunity to interview 2 more women about their experiences with Parkinson’s.  This has been a great way to share our journeys with other women and to help all of us better understand this disease that is changing our lives.  I will post their interviews later this week.

Have a great week.

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