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Understanding Parkinson’s!

Faces of PD

Parkinson’s Disease (PD) knows no boundaries, when it comes to age.  Young, middle aged, or older, we are all susceptible to the throws of this illness. Parkinson’s is a complex illness that is still not fully understood as to why one person may get the disease but others do not. It may be that PD is actually  more than one disease, under a dome of many.

I don’t know that there is making any sense of this illness. The diversity of symptoms and effective medicines vary so much that it is rare, if ever that two patients share the same symptoms or find the same benefit from a similar regimen.

Unraveling the complexities of this mysterious illness or illnesses continues to be a challenge for medical science. New discoveries may require a new and less conventional methodology for explaining this most elusive and cunning illness.

Are you stuck?

In a rut?Is your ship at sea but can’t make it to port,
Do you play the game but your putt is just too short,
Are you stuck in a vortex that you can’t escape,
Are you stuck in minutia and wrapped in red tape,
It’s time to break free and break the trend,
Begin a new pattern and create a new message to send,
Take a fresh tact, chart a new path and go round the bend.

Change begins with one small step. That small step can feel like a huge leap, but sometimes to move ahead we must be willing to break out of our comfort zone.

Remembering 2016!

2017! The Parkinson’s Disease (PD) Community lost 2 of its best known iconic figures in 2016. The most recognizable figure on the planet, the boxing legend and humanitarian, Mohamed Ali and Janet Reno, the first  US female Attorney General. Thanks to both of them for their awareness and advocacy in spreading the word on PD and the importance of educating the public, our government, and the medical world. They were very public faces who helped to express the needs of this community.

This year I have been to far too many funerals of dear friends who have succumbed to the symptoms of PD. It is a tragic reality– one, that I dread sharing with you.

It is my hope for 2017, that we see more cooperation from all parties involved in drug manufacturing, drug regulation, and drug research to lead to some understanding of just how our brains work. Someone, somewhere, sometime in the not so distant future is going to recognize a common element or link that may very well break open the mystery of Parkinson’s disease. Until that very special day, when the brain reveals itself, it is our duty to ourselves and our loved ones, to do all that we can for ourselves and our conditions.

I wish all of you, my friends and readers, a very healthy and happy New Year!

Interview with The Shoe Maven – Tonya Walker and more from WPC2016

Tonya Walker on the cover of More Than Motion!

Tonya Walker on the cover of More Than Motion!

While in Portland,OR for the 4th World Parkinson Congress 2016 (#WPC2016), I visited several vendors and their booths. Here are some of the interesting products and people that I had the opportunity to encounter:

I had the pleasure of meeting and speaking with the creator and owner of the blog, The Shoe Maven (www.theshoemaven.com), Tonya Walker, at the More Than Motion booth. Tonya has been living with Parkinson’s disease since the age of 32. Not only is she a mother of a young son, a law professor, a wife, someone with Parkinson’s but also a clothing designer of her own cause-based fashion label (TSM Originals). I appreciate her strength, determination, and drive to make the community more aware. Her positive attitude and passion to make a difference shone through our discussion.

I spoke with Ms. Walker about her blog and her passion for sharing her journey, improving awareness about young-onset Parkinson’s disease, and her love for fashion. With over 120 pairs of shoes, I can say that Tonya blows away my measly 5 or 6 pairs. Tonya found benefit from DBS or Deep Brain Stimulation first by having the surgery on her left side in 2013 and then her right side in 2015. You can watch Tonya’s video at https://www.facebook.com/parkinsonsmorethanmotion/videos.

As I have shared with my readers for over 8 years, Parkinson’s disease requires a proactive pursuit to search for a combination/recipe of complementary therapies, medications, or medical procedures that work exclusively for you. No two Parkinson’s patients are exactly alike, and what may work for me, may not work for you.

Here are some useful tools that I found at the vendor exhibits that might be helpful to know about:

Global Kinnetics Corporation
Global Kinnetics Corporation just released The Personal KinetiGraph, a movement recording device to assist doctors in treating and managing their patients with movement disorders. The PKG Data Logger is a wrist-worn device that was recently FDA cleared for the recording of movement, associated with Bradykinesia, Dyskinesia and Fluctuations. The unit is a nice looking watch capable of providing important mobility information to your doctors. As of 2 weeks ago, the device was not yet approved in Virginia, but some states are currently using it right now. You may want contact them for information in your state at www.globalkineticscorporation.com.

LiftWare
I dropped by the LiftWare booth to try out their stabilizing handle and attachments for people having hand tremor and difficulty with a fork or spoon. The product worked well, appeared to be durable, and was comfortable to hold. If holding a fork or spoon is a challenge for you, due to tremor, I think LiftWare is worth investigating as an option. For more information go to www.liftware.com

LifeWalker
I dropped their booth to take their upright walker for a test drive. My first spin in the walker took getting used to, but I did see the benefit of this device. Unlike many walkers, the LifeWalker keeps the user upright and at eye level, allowing for face to face contact. I found the units well-built at first glance and well designed. To learn more go to www.lifewalkermobility.com.

These are not product endorsements. I encourage you to do the research for yourself and make your own decision. I hope that this was helpful!

Here are some more of my photos from WPC 2016:

A great crowd!

A great crowd!

lisalindatrolley

Keith, Mike, Lisa, Linda, Angela, and me in Portland!

johnbaumannwpc

Author, lecturer, John Baumann, my GoPro, and I!

karl-book-nook

Exploring the WPC2016 book nook and finding my book!

jackiepaulmewpc

Ran into my friends– fellow author, Jackie Hunt Christensen and her husband, Paul!

bevandmewpc

Ran into my friend, blogger,humorist, and author Bev Ribaudo (YumaBev – http://parkinsonshumor.blogspot.com/)

authorsoncouchwpc

Sharing a seat with my friends and authors Michael and Gretchen Church and behind us fellow authors James and Helen Buell Whitworth!

meandadolphowpcfixed

Great to see my friend, Adolfo Diaz!

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

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!

Keeping Positive!

Keep Positive!

Keep Positive!

World Parkinson Congress’s Video Is Ending Soon–So vote this week!

Pick your favorite video!

Pick your favorite video!

The top 12 videos have been selected, now it is the people’s choice to decide who will be crowned this years winner!

Be sure to see the videos and cast your vote by clicking  here: http://www.wpc2016.org/page/top12

Taking Flight!

Taking flight!

Taking flight!

It is far easier to succumb to the will of gravity and fall than it is to fly. Flight takes practice, focus, precision, concentration, and fearlessness. There is only one way up and one way down, but getting up rarely is as fast as the way down. We all fall down, it is the determination in getting back up that matters.
Today, the clouds and winds may not be accommodating for flight, but the winds may shift and the clouds will part for you to try again to take your place among

the birds.

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