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

On “Being Mortal”

Sooner or later, we will all have to deal with the fact that having any progressive chronic disease, such as Parkinson’s, will require us to make major decisions about where we live, how we live and how much help we will need on a daily basis to live our lives the best way possible. As PD takes more away from us, will we be able to stay in our homes? And who makes the decisions?

I just listened to an amazing book titled “Being Mortal” by Atul Gawande. I had downloaded the audiobook because it had received so many accolades and was a best seller. Then conveniently forgot that I had it. The topic was too depressing and could wait. But then my friends started commenting on how good this book really is, so I decided it was time to bite the bullet and finally listen to it. And it was definitely worth it.

Throughout the book Gawande masterfully weaves stories of his patients with the hard realities of growing older and facing hard decisions about their care. The stories serve to illustrate how things can be handled better than they are in most of American society when it comes to aging and dying. We expect modern medicine to extend our lives, regardless of the quality of life. We treat our parents like children, placing them in nursing homes or other facilities, taking their lives away from them. In contrast, the extended families in many other societies care for their elders. The rise of nursing homes in the US gave us the option of no longer having to care for them ourselves, often leading to inadequate care and a terrible quality of life. Nursing homes became places where people went to die, not to live better when they could no longer take care of themselves.

Major changes in nursing homes began with a young doctor, hired to run a nursing home in upstate NY, who found it totally devoid of life. He was sure that something better could be done for the residents. Bringing children, plants and animals into the nursing home, especially 100 birds and dogs, in a hilariously told story, gave new purpose in life for many who had previously found little to live for.

On the opposite side of the country, in Oregon, the first assisted living facility was started by a woman who wanted to create a place as an alternative to nursing homes for her mother. A place where she would have her own small kitchen and bath where she could remain relatively independent, yet with many of the services provided by nursing homes available to her. Both of these visionary providers changed the way we care for our elderly.

Most importantly, Gawande shows that it is essential for us to listen to what those who are dying truly want as life grows more difficult. Shared decision making between the patient, doctor and the family has become much more common. Hear what the patient has to say and the choices you will ultimately have to make for them will become clear. Equally important, he talks about Hospice, whose sole duty is to make life more comfortable for the gravely ill, often increasing their quality of life and sometimes even prolonging their lives.

With his own father dying of cancer, Gawande asked what was important to him to live for after a difficult surgery. His father’s answer surprised him: he could not accept a life as a quadriplegic, he wanted to be in charge of his world and life. Later, after complications during surgery, the doctor came to talk to the family about whether to continue the surgery. What was the greater risk? Continuing the surgery or doing nothing. Gawande’s previous talk with his father had made it very clear how to proceed.

As I was reading this book, I started to think about how all of this would apply to a person with Parkinson’s. Eventually we will have to make decisions about where to live, what type of care is needed, and what decisions the family will have to make on our behalf. And most importantly, when a major medical decision needs to be made, what outcomes would be acceptable for us. Waiting to talk about it is no longer an option. We need to have an ongoing conversation with our families and care providers about our future now, not when it is too late to share in the decisions.

WEGO Health Awards

Back in June, several of my blogger friends had submitted applications to become a nominee for the WEGO Health Awards for Best in Show Blog. I had joined WEGO a few months earlier, but really did not know much about their Annual Awards. I submitted an application. Then we had 6 weeks to get votes and endorsements. So a group of us worked on endorsing each other and getting our friends to vote for us. The voting period ended in July and then the judging of all of the nominees began.

WEGO received over 6000 nominees in 15 categories, which ranged from Rookie of the Year, to Patient Leader Hero. The 5 finalists in each category included the top 3 vote getters and 2 others chosen by the judges. I had applied for just the blogger category, but some one nominated me for 2 others as well. I don’t know if that helped, and I know I was not a top vote getter, but last week, on the designated date, I received an email from WEGO that I was one of 5 finalists in the Best in Show Blog category. What an honor! As far as I can tell, I am the only Parkinson’s person in any of the 15 categories.

A short video of the Best in Show Blog Nominees
The winner was Kelly Cervantes who writes about her daughter with Epilepsy Inchstones by Kelly Cervantes

So what is WEGO Health? It is an internet company that believes in the value of Patient Leaders as an integral part of our health care system. Patients with many different illness are trained and given the opportunity to connect to health care companies, providers and others as patient experts.

From the mission statement:

“WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders. We are the world’s largest network of Patient Leaders, working across virtually all health conditions and topics.”

WEGO collaborates with startups, life sciences companies, non-profits, agencies, government and all types of organizations across health care. They offer enterprise and on-demand solutions that allow organizations to leverage patient experience and expertise in the design, development and promotion of their products and services.”

In other words, WEGO seeks to empower Patient Leaders and Influencers (sounds so much nicer than “Bloggers”) to work with the health care industry in a meaningful way. There has been a noticeable trend in the last few years to include Patient Leaders in the decision making process for drug trials, treatment protocols and more. Our experiences and our opinions do matter. If the trend continues, I think that we will start seeing a bigger change in how chronically ill patients, such as People with Parkinson’s, are cared for in the not too distant future.

In the end, I did not win for Best Blogger, but I can try again next year. Apparently it usually takes 2 or 3 tries to be named the winner in a category, according to several people I heard from. In the meantime, I get another cool badge to put on my website! That is if I can figure out how to do it. Woo hoo!

Do You Peloton?

pel·o·ton/ˈpeləˌtän/ noun

  1. the main field or group of cyclists in a race
  2. an exercise bike streaming indoor cycling classes to your home live and on-demand.

Mr. Twitchy and I acquired a Peloton bike a couple of years ago. A Peloton Bike is essentially a spin bike with a subscription service of unlimited live and recorded classes, accessible through a large touchscreen. The classes vary in length and difficulty. I try to get on the bike at least once a week, but it is not enough for me to really feel the benefits of it. It seems that the rides are getting harder and harder for me. Maybe it is just that I am getting older and all of the riders are younger than me? Or can I blame it on PD? I needed to find out how other Parkies do with the Peloton bike.

I thought that there must be some other Parkies out there who ride Peloton bikes. About a year ago, I started a Facebook group for Parkies who have Peloton Bikes so that I could find others and compare our experiences. So far we have 32 members in the group and we would really like to increase our numbers.

I loved when Hannah said to us ‘Parkies with Pelotons, YOU lead this ride’.

Amy

One of the women in the group, Amy Montemarano, proposed that we find a live class with Peloton that would be good for our group to join. Amy contacted Peloton and gave them the information about our group. The instructors always call out people and groups that are either in the studio with them or have signed up to join the class live, on-line, so this was a good way to get some publicity for Parkinsons at the same time. On Monday morning, 4 of us joined the 9:55 am class. We were all able to follow each other on the Leaderboard. One rider, Alice said: “That was fun doing a ride together! Lori , I broke a personal record trying to catch up with you.” Lori also broke a personal record because she was so excited to be riding with a group.

Loved riding with other strong Parkies

Lori

We hope to do this again, maybe on a regular basis. If you want to join our little group, go to our Facebook page Parkies with Pelotons. We are a closed group, so you must answer two simple questions: Do you have Parkinson’s and Do you have a Peloton bike? If you answer yes to both, we would love to have you join us.

Other exciting news from Twitchy Woman!

If you missed the PMDAlliance Inspire Me session last week featuring Twitchy Woman, you can watch it here.

And even more exciting, Twitchy Woman is one of 5 finalists for the WEGO Health Awards Best in Show Blog! Winners to be announced next week. Click on the photo for more information.

Parky Life Hacks and Inspire Me

Parkylife isn’t just a pack of cards with advice on, it’s a way of living positively with chronic illness

Matt Eagles

Happy Labor Day to those of you in the United States. I hope you are enjoying the last un-official day of summer.

Twitchy Woman is in the media. Two totally different things made my week more interesting!

What is a Parkylife hack? A tip or trick to help with everyday life.

First, a few days ago I was surprised by a tweet from ParkyLife. The amazing Matt Eagles, who was diagnosed as a young teenager and very active in the UK Parkinson’s community, has come out with a deck of cards he calls Parky Life Hacks. Each card has a quote from someone with PD on one side and an illustration on the other. I had seen a few of them in Kyoto, but this one was new and had a quote from, you guessed it, Twitchy Woman.

A press release from Havas Lynx Group in the UK, who worked with Matt to design the cards, says: Parkylife.com brings together a combination of stories, hacks, perks and profiles of inspiring folk who have achieved great things despite their diagnosis. It has been designed by ‘Parky’ people to provide a positive and optimistic outlook on adapting to life with the disease.

For Matt “Parkylife isn’t just a pack of cards with advice on, it’s a way of living positively with chronic illness. It’s unique, it’s never been done before and its changing the way people with parkinson’s view their lives.”

Go to Parkylife.com to see all of the cards and the t-shirt that was designed for the project. You cannot order them yet, but if you are interested, send an email to hello@parkylife.com

Inspire Me

The second thing happening this week is that Twitchy Woman was asked by the PMD Alliance (Parkinson’s and Movement Disorders Alliance) to take part in their Inspire Me series of online video discussions. I will be on this Wednesday, Sept 4 at 4:30 PDT. Registration is required to participate. Go to PMDAlliance to learn more about it and to register. I think the session will be recorded so that it can be watched any time afterwards. I will get back to you with the link for that.

So, what fun things have you been up to lately?
Mariette Robijn