Five or More with Todd Sherer, CEO of The Michael J. Fox Foundation

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

Five or More…

My thanks to Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) for contributing to my question/get to know you experiment.

Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not.

Required questions:

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?

Italian – See next answer

 

What do you like on your pizza?

I’m a New Yorker.  Plain cheese, bent with the oil dripping onto the plate

 

Of the four seasons, which is your favorite time of the year?

Spring because baseball season starts. Go Mets!

 

How many World Parkinson Congress events have you attended?

3 – DC, Scotland, and Montreal

 

What are you looking forward to most in Portland, site of the WPC 2016?

Unfortunately, I am unable to attend this year but am looking forward to hearing all the reports from the MJFF team.  I always love the interactions on the exhibitor floor and hearing what people are really interested in and concerned about.

 

Optional:

Tell us something about yourself that we might not know about you that you would like to share.

I’m extremely scared of heights.

 

Where would you like to go, that you have never been before?

Hawaii – how about they have the next WPC there so I can go?

 

What is the Michel J. Fox Foundation working on that you would like to tell us?

We are working really hard to develop better diagnostic tests and ways to monitor disease progression through our Parkinson’s Progression Markers Initiative (PPMI) .  These measures are critical to allow the field to test new disease-modifying treatments – with the potential to slow the disease.  I’m excited that all the data from this study is made available to the research community in real time at http://www.ppmi-info.org.

 

 

Saying Farewell To My Dear Feline!

Her picture says so much!

Her picture says so much!

I realize that I am off the topic of Parkinson’s Disease, but I feel this should be shared–my next posting will be back on topic–Thank You!

It is National Dog Day but I am writing for my cat, Shadow, who has left us. For 15 years, she looked after us. She taught us trust, patience, determination, and displayed a sense of grace, right up to her death. She lost an eye to Cancer almost 6 years ago and bounced back an hour after a life-altering surgery. Resilient. Resilient. Resilient.

She returned every bit of love that we ever gave her. Her confidence and ability to adapt never ended, even when she faced her final struggle.

She willed be missed, but never forgotten. Rest in peace, Shadow, dear.

Five or More with Carol Walton, CEO of The Parkinson Alliance

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

Carol J. Walton, CEO of The Parkinson Alliance has been a long-time friend (I met her not long after my diagnosis) on my Parkinson’s journey. I am pleased to have Carol on the blog, today, to share her answers to my questions. Here are eight questions to get to know Carol. Five of them are strongly encouraged that she responds to. The remaining three questions are by choice.

Thanks to Carol for participating!

Required questions:

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine? Totally Italian

What do you like on your pizza? EVERYTHING except anchovies—my favorite is Hawaiian Pizza—ham & pineapple!!

Of the four seasons, which is your favorite time of the year? FALL—unless I am in California—then I love them all!!!

How many World Parkinson Congress events have you attended? All of them

What are you looking forward to most in Portland, site of the WPC 2016? Networking…so many people will be there from the US—already have 10 meetings set up!!!

Optional:

Tell us something about yourself that we might not know about you that you would like to share.

Where would you like to go, that you have never been before? Africa

What is the Parkinson Alliance working on that you would like to tell us? Our work in patient surveys and patient education. Margaret Tuchman has had PD for over 37 years and had DBS in 2000. She is now dedicating her life to educating the PD community about DBS therapy…..great if you are the right candidate. We do this through patient surveys and have completed 22 surveys…over 16,000 responses. Our last survey on Cognition had 1551 participants….and about 1/3 had DBS. Very good information and totally free. We hope people stop by The Parkinson Alliance booth at WPC—we also will have a poster on NUTRITION!!!

Many thanks to Carol!

Five or More Questions with Polly Dawkins

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

 

Introducing, Five or More…, a series leading up to the World Parkinson Congress 2016 in Portland–meet some of the Executive Directors and leaders in the Parkinson’s Community as they answer a range of some required questions and some optional: Polly Dawkins of The Davis Phinney Foundation, was kind to agree to go first.

Here are eight questions. Five of them are encouraged that you answer. The remaining three questions are your choice whether you want to provide an answer or not. Thank you for being the first to try this experiment!

I have known Polly since she started at The Davis Phinney Foundation and she has been a loyal follower of the blog.

Required questions:

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?

Do I have to choose?  Love Asian food and my favorite is Japanese.  Since that’s not the on list…if it’s a great Mexican place (like the food in the Yucatan Peninsula), that’s the food I’d choose.  The spicier the better.  And, Thai would be a close second.

What do you like on your pizza?

Grilled fennel, roasted garlic and mushrooms on an olive oil and light cheese base, topped with fresh arugula and shaved parmesan.

Of the four seasons, which is your favorite time of the year?

Summertime is the only time of year for me.

How many World Parkinson Congress events have you attended?

Montreal was my first Congress and Portland will be my second.

What are you looking forward to most in Portland, (site of the WPC 2016)?

Meeting with members of the Parkinson’s community in person, seeing old friends with whom we have worked, creating new partnerships/collaborations in the community and spending time with the Davis Phinney Foundation Ambassadors.

Optional:

Tell us something about yourself that we might not know about you that you would like to share.

I have the best job ever.  You probably already knew that.   I love to swim and ride my bike.  You probably knew that, too.  Something new and different?   I love spending time in Latin America and speaking Spanish.

Where would you like to go, that you have never been before?

Chile, Argentina, New Zealand, Norway (when it’s warm) and Botswana.

What is the Davis Phinney Foundation working on that you would like to tell us?

In addition to working on bringing The Victory Summit to Sacramento, New Orleans, SW Florida, Nashville, Durango and other locations yet to be announced, we are currently working on developing new content and launching a new website for the Davis Phinney Foundation, which should be up and ready by the time we’re all gathered together in Portland.

As well, we are really proud of the quality of life research we’ve funded and what that has meant in terms of changing the way people approach living with Parkinson’s.  As well, we are considering ways in which we can invest in quality of life research that have more direct impact on our programs and the Parkinson’s community as a whole.

Thanks again, Polly!

 

 

Trying to understand stress as it relates to Parkinson’s disease.

The role stress plays!If you are a frequent reader of this blog or have read my book, you know that I talk a great deal about the impact that I believe stress plays on Parkinson’s disease and the related symptoms of the illness.  Make note, I am neither a doctor nor am I a clinical researcher. I have recently found this fascinating research showing signs of scientific evidence to validate more of what I have experienced and believed to be true – stress may have a significant role in Parkinson’s.

 I have seen benefit and strongly believe that if you are able to lower your stress level, you can improve your symptoms of Parkinson’s disease. There has to be a logical reason why when many of us go on vacation or get deeply involved in a project that engrosses us, we sometimes see improvement in our condition.

How often do you find that when your stress is lower you have unused medication at the end of the day because you found that you didn’t need it?

Does this happen to you when you go away to a place less full of stress, like the beach or the mountains?

If stress does play an important factor in neurological disorders, and it looks very possible, then the science of stress needs deep exploration—quickly.

 I encourage you to read this paper online and judge for yourself. I think that you will find some observations that need further investigation.

To read the paper for yourself, go to http://jnnp.bmj.com/content/85/8/878.long

Friday nature photo!

Awareness.

Awareness.

Uncovering Messages From Two Tough Guys

The great philosopher, Popeye, said “I am what I am and that’s all that I am.” At first glance, maybe that statement doesn’t appear to be all that deep, but if you look a little deeper, it means so much more.

We have our limitations, some we never explore and some may test us constantly. Our identity fluctuates with the role and position for the tasks needed to be fulfilled at the time. Trying to be all things to all people isn’t practical, easy, or healthy. Popeye knew his place in the world, in the end, he always fought the bully and won, got the girl, and took back his self-respect. In nearly every episode this average iron deficient occasional spinach-eater ended as hero.

Dirty Harry said “a man has got to know his limitations”. Between Harry and Popeye is the lesson of finding our balance. Icons, heroes, pop culture, and advertising bombards us with expectations and limitations that they alone try to put on us. As if daily living isn’t stressful enough, living by anyone else’s idea of how to live seems like an added pressure, that I don’t need.

Finding your target and keeping yourself challenged but not over-tasked, just might be the right balance. Each of has our own unique skills and abilities that distinguish us. Comparison isn’t fair or necessary when setting our personal goals. To each his or her own. Targets are made to be raised or lowered after several attempts of successes and near misses.

Keep aiming high! Passion and persistence can prevail!

Trust in your path!

Stay on course and don't stop seeking answers!

Stay on course and don’t stop seeking answers!

Keeping Positive!

Keep Positive!

Keep Positive!

Pillbox option with a tech connection!

Pillbox creators are getting more adventurous and creative. With a large aging population and more of us on medication, it only makes sense that in our tech-filled lives, our medications could piggyback with the technology.

It’s creative and unique–but that doesn’t mean I’m going to use it. It may be an option for you if your phone never leaves your sight and you only need to carry a few pills with you.

attaches to your phone!

attaches to your phone!

There are some very cool pillboxes out there!

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