What helps you to live well with Parkinson’s Disease?

You must do the things you think you cannot do. – Eleanor Roosevelt

Since March is Women’s History Month, I will be including some quotes from some amazing women who have made a difference.  Look for more scattered throughout the blog posts this month.

And speaking of women,  I submitted an abstract to the World Parkinson’s Congress about a survey that I posted on a women’s Parkinson’s Disease Facebook group.  My abstract was accepted and I will be showing the results on a poster in the Poster Display  during the conference.

As a blogger who writes about living well with Parkinson’s, and having been a co-lead on the Parkinson’s Foundation’s groundbreaking study on women with PD last year, Women & PD TALK*, I was curious about what other women with Parkinson’s think contributes to their continuing to live well with Parkinson’s.

I asked the following questions  in November, 2018.

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example:
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD.
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

I now want to open the survey to anyone who is interested in participating.  The difference is that this time I am asking you to choose 3 things from the list of the most common responses that I received last time.  And of course, there will be room for additional comments at the end.

This survey will self destruct, in about 10 days so that I will have time to look at the results and write a summary and create a poster for the WPC which starts on June 4.  Being the Parkie that I am, I need the pressure to get this done.   So please respond quickly so that I don’t have to scramble like Cinderella to get to the ball!

Be kind, have courage and always believe in a little magic.
― Cinderella

And the survey says……..click here to participate

 

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  • Watch for the Women & PD TALK outcomes here in the next few weeks!

Looking back at 2017 and forward to 2018

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year.  It has been an adventure for me.   I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer.  Hard to believe that it has been that long.  I am doing quite well, with my symptoms mostly relieved by medication and exercise.  Of course there are ups and downs, especially while living with Parkinson’s.  But for the most part, nothing holds me back.  Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

  1. The best part:  The continued growth of this blog has been a blessing beyound description.  The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words.  Let’s continue to read and comment  and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.
  2. The most curious part:  The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden.  The dichotomy seemed to resonate with a lot of people.  Sex and the PD Woman came in a pretty distant sixth place.  Not sure what that means.  (Maybe an update with pictures in 2018?)
  3. The most humbling part:  Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.
  4. The most exciting part:  Working with the Parkinson’s Foundation to create the study Women & PD TALK,  which grew out of the Women & Parkinson’s Initiative two years ago.   Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI),  Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways.  Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s.  It has  been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations.  The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

  1. The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT.   This will be the 3rd of the 10 forums being held around the US.
  2. The anticipated report and recommendations from Women & PD TALK  for improving care and outcome for Women with PD.
  3. Working with the World Parkinson Coalition to get ready for Kyoto in 2019
  4. Watching for, and sharing with you, the latest news on PD .  We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage.  Will this be the year for the big breakthrough?
  5. Oh, and we are expecting our 4th grandchild in May.  So there’s that, too.happy-new-year-2018-animation-fireworks-6062126467.gif

Much Ado about Parkinson’s

As we celebrate the 200th anniversary of Dr. James Parkinson’s groundbreaking essay of “The Shaking Palsy”, there seems to be a flurry of announcements of possible breakthroughs in diagnosis and treatment of Parkinson’s.  Eight years ago, when I was first diagnosed with Parkinson’s, the prevailing theories all stated that PD was a disease that started with “dopamine-producing cell death in the brain.”  Sometimes the cause was genetic.  Other times exposure to pesticides or other chemicals were to blame.  But most of the time, there was no apparent cause.  Just 6 months ago, at the World Parkinson’s Congress, we began to hear about  different ways of looking at PD.

We have known for years, that Parkinson’s is a designer disease.  The progression can be very different for each person.  But now doctors and researchers are looking at PD as a group of syndromes, not just a single neurological condition that caused movement disorders.   Many other symptoms and diseases not typically considered Parkinson’s were now seen as part of PD.    There have been a lot of studies of possible treatments that seemed promising, but the hope for a cure still seemed elusive.  In fact, one of the speakers at the WPC, whom I believe was Tom Isaacs, quipped that the cure was always 5 years away, no matter what the research said.

But something has changed since then.  In the last few months, researchers are coming out with reports that Parkinson’s does not start in the brain, but may actually start in the gut.  Many say the culprit in some cases may be microbiomes in the gut. WOW!  If this is true, scientists at Caltech say it may mean that PD can be detected much earlier and drug treatments can be designed to remove those nasty little bacteria that are causing problems in our gut and our brain.  This treatment may also be more effective because medications

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Credit:  Caltech

can easily be absorbed in the gut, unlike treatments for the brain, which is protected by the blood brain barrier.  There has been much written about this, and it is probably confusing for most of us who are not researchers.   I am not a biologist, or a scientist, but I do understand that treating the cause much earlier, if it is in fact in the gut, is much easier that treating the damaged neurons in the brain, especially since symptoms don’t appear until it is way too late to reverse the damage.

Here is a quick look at some of the other announcements over the last few weeks:

  • Biomarkers  can be used to used to define disease subtypes.  “This precision-medicine approach will likely yield smaller, but well-defined, subsets of [Parkinson’s disease] amenable to successful neuroprotection.” according to Alberto Espay, MD, who conducted a study titled “Precision Medicine For Disease Modification In Parkinson Disease.
  • Last week the FDA approved Xadago   (Safinamide) for people with Parkinson’s disease (PD) who are taking levodopa but experiencing “off” episodes.
  •  Also last week, researchers from the University of New Brunswick    found that an extract from the brown seaweed Alaria esculenta can prevent this conversion and, therefore, could be useful in avoiding the onset of the disease or delaying its progress.”  Ok.  Does this mean we should eat more sushi?
  • A new study published in the Annals of Neurology suggests that redheads may carry a gene variant that increases the risk of both Parkinson’s disease (PD) and melanoma. Researchers have long known that having either PD or melanoma heightens the chances of developing the other condition, but it’s been unclear exactly why.  What if you are blonde and have had both, like I have???  I think this means I am in trouble….
  • The Food and Drug Administration finally gave approval for 23andMe to sell to consumers genetic tests and their accompanying health risk reports for up to 10 diseases, including late-onset Alzheimer’s and Parkinson’s.
  • And finally, the New York Times declared that exercise is good for us old people.

All kidding aside, it seems that the big breakthrough may just come in less than 5 years, which would make all of us very happy.

100 and counting

Wow, it has been an interesting journey!  I started writing this blog in March, 2015, as a way to share my experience with Parkinson’s Disease with others.  I never imagined that I would still be writing almost 2 years later, with this my 100th post!  15 people read that first post when it was published.  Now my subscribed readers number several hundred, with many more just checking in, coming from 76 different countries.   I want to thank all of you for your support over the last 2 years.

Looking back on the past year, there have been many exciting findings in Parkinson’s research.  The most important is the change in thinking about how Parkinson’s gets started.  Research now points to changes in the microbes in the gut as the trigger for setting off Parkinson’s symptoms.*  What this means for us:  a possibility for earlier detection with a screening test, and new treatment options that begin before damage to the brain occurs.  To learn more about it, register for Michael J Fox Foundation’s next webinar  on January 19, titled  Gut (Bacteria) Check on Parkinson’s: Role of the Microbiome.   Maybe this will be the year………

There has also been a world-wide effort to change the image of Parkinson’s from the stooped over, shuffling person to someone who is actively enjoying life with PD. Photographer Anders Leines‘ photo exhibit at the World Parkinson’s Congress was highly successful.  There is also a Facebook page, Many Faces of Parkinson’s that is working to change that image.  The World Parkinson Coalition has just published a book Faces of Parkinson’s: Global Reflections of PD which can be ordered through their website.

Exercise has also been a positive force this year for PwP.  Many studies have shown that exercise can be more beneficial in relieving Parkinson’s symptoms that anything else. See Exercise May Be Real Medicine for Parkinson’s Disease.  Yoga, boxing and tennis keep me going.  If you are not exercising, 2017 is the year to get moving.  There are so many options, either in group exercise classes, online videos or just walking.  Just check with your doctor before beginning any exercise program.

I was fortunate to attend the World Parkinson Congress in Portland in September.  This amazing conference brought together over 4300 people from around the world, People with Parkinson’s and their caregivers, doctors, scientists, and many others in related fields for 4 fabulous days. I am so glad that I met many of you there.  I hope that we can all meet in Kyoto in 2019 at the next WPC!

My Parkinson’s resolutions for 2017:

  1. Keep on moving:  exercise every day.
  2. Keep a positive attitude.  Look in a mirror and smile – it will brighten your day.
  3. Participate in PD research.  PwP’s are an important part of finding the cure,
  4. Get more sleep.
  5. Hug my grandchildren as much as possible for they are the best medicine! (Thank you Linda B for saying that).

Have a wonderful and healthy 2017!

Some photos from 2016

 

 

 

Exercise and PD

The Poll Results are in!  Thank you to all who responded to this most unscientific poll.

There have been 52 responses so far to the question:

What is your preferred form of Exercise for Parkinson’s Disease?

Walking                                                  10

Swimming                                               7

Boxing                                                     6

Dance                                                      7

Yoga                                                         5

Pilates                                                     4

Tai Chi                                                     2

Tennis                                                     2

Cycling                                                    3

Strenth/Weight Training                       3

Running                                                  1

Elliptical                                                  1

Sandduneusa (what is this?)                 1

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On Tuesday I will be traveling to Portland for the WPC.  I am looking forward to meeting up with friends from around the country, hearing about the latest research and learning about living life to the fullest with PD.  I will try to post a summary everyday and will write more in depth after I return home.

I will be volunteering in the Parkinson’s Foundation booth on Wednesday from 11:00-1:00. Stop by and say hello if you are there.  In addition, if you would like to tell your Parkinson’s story, to be published in this blog at a later date, I would love to meet with you.  Either stop by the booth, or contact me so that we can arrange to meet.