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

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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 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”

*More on the importance of writing your narrative in a future post.

Make your voice heard. A study for all People with Parkinson’s

Do not let what you cannot do interfere with what you can do.

John Wooden

One of the most important thing that we, as People with Parkinson’s can do, is to take part in clinical trials.  There are many trials that have very specific criteria for participants.  And often, these trials do not get enough people to participate in order to complete the study because they are so specific.

But there is one trial that anyone who is reading this blog can participate in.  The study is being conducted by Laurie K Mischley, ND, PhD, MPH, at the Bastyr University Research Institute and is titled Complementary & Alternative (CAM) Therapies in Parkinson’s Disease.  You do not need to leave your home.  You do not have to meet with a doctor, take medications or any kind of tests.  All you need is a computer with on-line access, an email address and basic computer literacy.  You do not need to use CAM therapies to participate.

I spoke to Dr. Mischley at the WPC about the study.  The goal of this PD study is to collect as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression.  The theory behind the study is that of “Positive Deviance”

“Positive Deviance is based on the observation that in every community there are certain individuals or groups (the positive deviants), whose uncommon but successful behaviors or strategies enable them to find better solutions to a problem than their peers. These individuals or groups have access to exactly the same resources and face the same challenges and obstacles as their peers.

The Positive Deviance approach is a strength-based, problem-solving approach for behavior and social change. The approach enables the community to discover existing solutions to complex problems within the community.” *

I have been involved in this study for about 2 years, so it was a pleasure to meet Dr. Mischley to talk about what she is doing.  She told me that so many studies look at what happens before a person is diagnosed with PD.  Her study seeks to look at PwP’s from diagnosis forward to see why some people do better than others.

Every six months I get an email from Dr. Mischley with 2 questionaires to complete.  It does not take more than 90 minutes to complete.  If you are interested in participating or would like more information, go to the website at http://www.CAMCarePD.bastyr.edu.

www.positivedeviance.org

 

A week later, after the WPC

 

The World Parkinson Congress was much more than just a convention.  It was an opportunity to meet and mingle with a diverse group of people who all have the same mission:  finding a cure for Parkinson’s.  There were so many options for all of us.  We could go to medical research sessions, even if they were geared towards reseachers.  Doctors came to exercise sessions with People with Parkinson’s (PwP’s).  Sessions were labeled by how technical they were, but they were open to everyone.  The exhibit hall had a huge variety of vendors, ranging from Parkinson’s organizations, to drug companies, speech therapists, a boxing ring and even one vendor touting a mattress to cure all ills.  There were hundreds of posters, a staple at medical meetings, which outline the latest research and studies from around the world.  Some were by researchers.  Some were by PwP’s.  Themed tours of the posters were offered for the curious.

So where am I a week later?  Still trying to digest all that I saw and heard.  Fortunately, the WPC app has links to the speakers and their slide presentations.   This is very helpful if you can’t quite remember the details, or missed a session that you wanted to attend.  The key thing is that now, thanks to the program guide which has info on every session and every speaker, I know where to go for more information on so many topics relating to PD.

The big take-aways from the WPC for me are:

  1. PD is a Designer Disease.  The symptoms and progression for each PwP is different. Doctors are now looking at other ways to alleviate symptoms, including alternative medicine, exercise and nutrition.  As we learn more about our genes and PD, the challenge will be how to move forward with that information to get the best treatment possible.
  2. We were inspired by so many:  Tom Isaacs, Brian Grant, David Leventhal and Julie Carter just to name a few.  They have all made our lives better in some way.  And of course, who was not brought to tears by May May Ali,when she recited her poem “Pearl”, in memory of her father Muhammed Ali.  Finally, we were inspired by so many People with Parkinson’s who made the journey to be together in Portland.
  3. None of us is alone on this journey with Parkinson’s.  There is support for us in so many ways.  Doctors and other health care professionals, therapists, trainers, caregivers, friends with PD, are all there to help.  I met people that I had corresponded with through this blog, finally putting names and faces together.  And I met people I had read about, all of whom were eager to share their wisdom and their help.
  4. This is a global community.  There were people from many different countries, including PwPs, Caregivers, Doctors and Researchers who are all working together to find a cure and make life better for PwP’s.
  5. Meeting authors and hearing about their books.  Jon Palferman, one of my favorites, spoke about Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, one of the best PD books I have read.  Alice Lazzarini talked about her transition from cutting edge PD researcher to Person with Parkinson’s in her book  Both Sides Now: A Journey From Researcher to Patient.  I am looking forward to reading that next.
  6. We must advocate for ourselves to get the best care that we can.  Everyone I met has a story about misdiagnosis, wrong medications and bad doctors.  We, as People with Parkinson’s do have a voice, and even if it is a soft voice, we can and should be heard.

 

Here are a few of the posters and some photos

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WPC Continued….Beware, this may “make you dopey”

Thursday afternoon I went to a very informative session on “Speech and Swallowing”.  There are several points that are worth sharing.  First of all, voluntary coughing is a good thing as opposed to a reflexive cough that occurs when you swallow wrong.  If you are having problems with swallowing , you should see a Speech Pathologist who specializes in PD for an evaluation.  There are many non-medical treatments that are available such as postural changes, diet modification and LSVT/LOUD training.  LSVT/LOUD trains you to speak louder and also strengthens the muscles in your throat that are involved in the swallowing reflex.  There are progams available on-line, but the speakers all recommended working with a Speech Pathologist and using the programs for practice.  The other interesting fact is that the Basal Ganglia in your brain gives the feedback to your speech.  In PD it does not function well and the perception is that your voice is louder than it actually is.  So when others complain that they cannot hear you, think about going for a speech eval.  Finally, sing!  Singing can have a positive effect on your speech.

We all know now that exercise is an essential part of any therapy for PD.  “Exercise as Treatment” reinforced the need for exercise of any kind.  Your brain becomes engaged when you exercise.  It switches from automatic functioning to more cognitive, which in turn can create resiliency/plasticity in the brain.  In other words, your brain is adapting and reconnecting, forming new pathways.  The more complex your exercise, the more effective it is.  A combination of more than one type of exercise is optimal.  If you are new to exercise, you need to work with someone who understands PD and can adapt an exercise program that works for you.  The biggest issue with studies for exercise and PD is that most studies only use people with mild or moderate disease.  People with more advanced PD need to be included to see if they can also benefit from exercise.

Finally, the standing room only session on Complementary Care (CAM) did not disappoint.  CAM care is not embraced by many doctors, but is very popular with patients.  And the research is beginning to prove that it does help in many ways.  Although he had no samples for us to try, Dr. Benzi Kluger spoke about the benefits of Cannibis and the different forms that are available.  Some of his slides are below for your enjoyment.  Dr. Indu Subramanian, who happens to be my MDS, talked about Yoga and its benefits for PD, challenging the doctors in the room to encourage their patients to give it a try.   Dr. Laurie Mischley spoke about her studies using Glutathione for PD, something which is definitely not on the radar of many doctors. The results of the few studies are inconclusive.  Some show benefit, others don’t.  Finally, after some technical difficulties, Matt Ford entertained us with music that we can all relate to, using it as therapy.  He began with “Staying Alive” from Saturday Night Fever and then showed a video of a man who could barely move until he put on some music.  You would never know that he had PD.  At the end, everyone was singing and dancing in the aisles.  He left us wanting more!!!

 

WPC Day 2

Well, I made it on time this morning and headed straight for a session called Synchronizing Breath & Movement for Body Alignment and Posture Integrity, a long name for what it calls in parentheses (IMG_0001.JPGChair Yoga).  I did not expect much after seeing “Chair Yoga” and was pleasantly surprised.  We learned a lot of breathing techniques, including one called “Box Breathing” which the yoga instructor, Aminta Romero St. Onge, said is great for helping with sleep problems.  I will try it and let you know if it works.  And we did some yoga too.  It was a well spent hour.

The morning plenary was was titled Genes and Mechanisms of Sporadic PD.  I missed the beginning, so I have no idea what Sporadic PD is.  Beate Ritz, of UCLA spoke about the effects of pesticides on Central Valley farmworkers (in California) and the increased risk for PD among this population.  Alice Lazzarini told about her transformation from PD researcher to PD patient, an ironic situation that is more common than one would think.  I know of several others.  Finally, Jason Karlawish talked about what you can do with the information that you get from genetic testing for PD, and for other diseases.  He raised many difficult questions about what to do with the knowledge that we will suffer from PD, dementia, Alzheimer’s or other degenerative diseases.  What are our options?  What are our responsibilites to ourselves and our families.

After the session ended, I proceeded to check out the many posters displayed in the exhibit hall.  I needed something more uplifting after that last talk.  There are hundreds of posters on display about research projects from around the world, foundations for PD, exercise programs, nutrition.  It was amazing.  Some of the pimg_0006eople were there to talk about their posters and explain what they are doing.  I have never seen anything like this before.  They actually have tours of the posters that you can sign up for.  Each tour has a different theme.  I did not sign up for a tour, but wandered through, talking to people about their work.   Here is the poster from the Parkinson’s Disease Foundation about the Women and PD Initiative that I participated in last September.  It describes the program and its goals, and the outcome one year later.  I am proud to say that I am represented in 2 sections of the pie chart, both in Media and Repeating events.

In the afternoon, I  bailed out on Sleep Difficulties and headed to Becky Farley’s PWR! Nexus program.  Becky is fabulous!  The room was packed with people eager to move after sitting all day.  And move we did.  Sitting, standing, getting on the floor.  Everyone had a great time.  Here is a 5 second short video of one of the moves.

I went to one last session on Speech and Swallowing and then back to the posters to see several friends do their presentations.  More on both tomorrow.