Blog Archives
It was just Halloween—so let’s talk about it! WHAT SCARES YOU?
What scares you?
If you are anything like me, you probably don’t need a raging lunatic with a butcher knife and a hockey mask to get scared. Maybe a speedy roller coaster or a week or more without sunlight would fit in the category of frightening! Okay, this is pretty much a blog on Parkinson’s disease and I will admit that this illness can be very scary, but it doesn’t have to be terrifying.
Some of our fears are truly justified and are there for a reason. Fears can be mechanisms that remind us not to get too close to a fire or to avoid approaching the lion’s den, but then there are those fears that perpetuate themselves and may get away from us. Fears, like wildfires, can get fanned and grow into severe anxiety, causing more and more negative emotions. Fears of the unknown or visions of our mind that manifest from our sub-conscience may just arise. When anxiety, frustration, and stress lead into depression or despair, we have a huge problem to resolve, quickly!
Fear is that four letter word that can motivate us or hold us back from fulfilling our destiny and our dreams. People share with me how impressed they are that I wrote a book. As much as I appreciate the praise and well wishes, I tell them that anyone and everyone can write a book. Overcoming the fear to put your story or viewpoints on paper or the web takes some gumption and willingness to be completely frank, yet vulnerable. Just like writing, public speaking is frightening, exhilarating, exhausting, and empowering, all in one.
Some fears are ours to conquer. Some fears are meant to be respected and accepted. Most of us know deep down, which ones are which, but it is when we choose the wrong fear to meddle with, that may cause problems, danger, harm, or insult.
Overcoming our fears is a step-by-step piece of our growth to becoming stronger individuals. A big part of learning and improving ourselves is to expand our knowledge base and to find the tools that may assist us in calming our fears.
Understanding Parkinson’s!
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?
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!
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!
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!
Keith, Mike, Lisa, Linda, Angela, and me in Portland!
Author, lecturer, John Baumann, my GoPro, and I!
Exploring the WPC2016 book nook and finding my book!
Ran into my friends– fellow author, Jackie Hunt Christensen and her husband, Paul!
Ran into my friend, blogger,humorist, and author Bev Ribaudo (YumaBev – http://parkinsonshumor.blogspot.com/)
Sharing a seat with my friends and authors Michael and Gretchen Church and behind us fellow authors James and Helen Buell Whitworth!
Great to see my friend, Adolfo Diaz!
