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Some Parkinson’s events and sites to make you aware of this #ParkinsonsAwarenessMonth 2018

This, as is every April, is Parkinson’s Disease Awareness Month—it is a time to learn about an illness that touches millions of lives across the globe. Help spread the word to anyone you know who may have a need for assistance in getting more of an education on the complexities of Parkinson’s disease.

This #ParkinsonsAwarenessMonth there are so many events going on online and locally.  Here are a few of the many Parkinson’s disease related events that I want to point out –there are far too many to mention (check your local community for special events close to you), along with some online resources that I encourage you to visit.

April is Parkinson's Awareness Month

April is Parkinson’s Awareness Month

April 14, 2018 12pm -5pm
Pints for Parkinson’s – Hosted by Rock Steady NOVA
Tysons Biergarten – Tyson’s Corner, VA
Come out and meet others in the Parkinson’s community along with getting information about Parkinson’s resources in the area.  A portion of the proceeds will go to Parkinson’s non-profit charities.

April 14, 2018- 10am CT
Parkinson Voice Project – Parkinson’s Awareness Month Celebration

Streamed live this Saturday 4/14 at 10:00am (CT) home page and Facebook page
Speaker: Stanley Fahn, MD – Founder of the World Parkinson Coalition
Special performance by: The Intentional Singers

April 16, 2018 11am-1pm
Cafe Alexandria – Parkinson Social Network
The Parkinson Social Network launches their Cafe in Alexandria, Virginia!
Visit https://parkinsonsocialnetwork.org/ for more details and directions.

April 28, 2018
Parkinson’s Unity Walk – Central Park, New York City
24th annual gathering in Central Park to bring awareness to Parkinson’s Disease.

Online Resources 

At ParkinsonsDisease.net, there are 17 Parkinson’s Disease community advocates who share their voices from all parts of the Parkinson’s Disease community. To find the community voice that resonates for you, use this link:  https://parkinsonsdisease.net/community-advocates/

The following are articles that were written for 2 websites that I hope that if you don’t know about that you might now take some time to visit. They are good sources for those dealing with Parkinson’s disease! Education, knowledge, and awareness is so important.

Karl Robb Found a New Purpose Through Parkinson’s – Davis Phinney Foundation

Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship – PatientsLikeMe

A Video To Inspire!

This is my first real attempt at an inspirational film. I hope you enjoy it and share it.

My First Inspirational Video!

I hope that you find this thought-provoking and calming! These are some of my many original photos mixed in with some thoughts. You may have to watch more than once to read everything. Thanks!

April Is Parkinson’s Disease Awareness Month!

Stephen Hawking Went Far and Beyond Thus Excelling Limits, Barriers, and Boundaries!

In the past week, I mentioned the loss of Toys R US, which is a sad memory for all of us who loved our toy stores. The toy store, while an important piece of our past, isn’t nearly as crucial as the loss of Theoretical Physicist, Stephen Hawking.

Stephen Hawking besides being an amazing scientist and one of the greatest visionaries of our time, was a handicapped man who far exceeded his outwardly apparent limitations. Through Hawking’s work in space and time, he gained respect and accolades for his contribution to science, the world, but especially to those of us living with neurological challenges.

Hawking was known for his brilliance but also for his wit and incredible sense of humor. When you looked at Professor Stephen Hawking, his wheelchair and voice communicator became a part of his being. What Hawking wrote and thought has left an impact far louder and more important than his ALS. We looked beyond what most would label as a disability. Hawking lived far longer than ever expected, made a huge contribution to science, and proved that one can truly overcome the adversity of illness.

As a writer, inventor, author, and someone with Parkinson’s disease for over 30 years, I always admired Stephen Hawking. Not until his passing, did I really understand the dignity and awareness that he projected for all of us dealing with chronic health conditions. He showed a strength and tenacity that is an inspiration that I will never forget.

AsoftVoice.com celebrates a decade of blogging on Parkinson’s disease!

It is official—this blog, www.Asoftvoice.com, is 10 years old!

With over 300 archived posts pertaining to Parkinson’s disease and living well, it has been a labor of love! Here is to the next 10 years and with luck, a continuation. I hope to hear from more of you, so that I might address topics of interest.

I am happy to report that I don’t have a problem with procrastination—in fact, I’m good at it! Call it a talent, call it a mastery, and to think that I have no training! I am a Master Procrastinator! I admit it—I procrastinate more these days, to stay creative and fluid. I like to work odd hours, sometimes. I write when inspiration calls. So, here are some thoughts to share with you that I hope you can use:

  1. Parkinson’s disease is a strange and quirky illness with a host of awkward and annoying symptoms. I don’t make light of the seriousness of this illness, but if you keep too rigid, you will surely snap. As hard as it may be, hold on to smiling and laughing–as best as you can– it is so important to monitor and maintain a sense of humor. Humor and a positive attitude can go a long way, with any illness! Laughter really is a great medicine!

  2. Parkinson’s disease is a wonderful excuse to break convention— you may find that you enjoy living outside the regular everyday box. It may take time. I’ve had over 30 years to adjust, so forgive me if I make it sound easy. Living with Parkinson’s is anything, but easy.

  3. The fact is that structuring your day and schedule to accommodate your on-times as well as your off-times can make your days far less stress-filled and less dramatic.

  4. The label of Parkinson’s disease covers a broad range of symptoms, some apparent and some unseen by public eyes. No two of us is exactly alike and therefore, our symptoms, medications, progression, and helpful therapies may differ.

  5. If Parkinson’s teaches us anything, it is to slow down the rapid pace of life, look around and enjoy it, to eat slower and savor what we are eating. Parkinson’s is an unusual teacher that forces us to slow down whether we choose to or not. See this new pace as an opportunity.

I don’t know what the next 10 years will bring, but I plan to continue to share and expand my voice through this site, maybe a 3rd or 4th book, and maybe a few surprises (good ones) along the way. I hope that you’ll join me for the ride!

Building a Plan for Your Parkinson’s Disease and Your Health

Without some sort of plan or framework, it is very easy to get lost along the way. Whether you have Parkinson’s disease or not, just having goals may not be enough, as unexpected obstacles can arise at the most inconvenient of times. There is so much in our lives that we can’t expect, but must just accept and move on, as best we can.  Our perspective and flexibility can impact how we deal with adversity.

The following few tips are some thoughts and suggestions that you may want to consider. I hope that these tips might trigger some revelations for you.

  1. Consider building a series of plans from your personal medical team, your support network, your health team (trainer, physical therapist, massage therapist, speech pathologist, etc.). Some of these networks may overlap and vary as your providers may change over time.

  2. Keeping current on developments and timely releases about your illness is not only empowering but beneficial to both you and those who you choose to enlighten.

  3. If you have early onset Parkinson’s disease, I strongly suggest for you to consider finding a Neurologist who is a Movement Disorder Specialist, as they have special training dedicated to this illness.

  4. Don’t compare or contrast your Parkinson’s to anyone else’s. We each have our own flavor of Parkinson’s and we each have our own unique journey.

  5. Timing our medications is a crucial component to making the most of our day. Maintaining and strictly adhering to a timely regimen where your medications can work at their best, takes experimentation and some trial and error.

  6. Try not thinking of illness of any kind as a war, a battle, or a win or loss. Consider illness as an obstacle or an obstruction that must be worked around. No one wins a war. War is dark and violent. Maybe, a new perspective towards illness can take some of the anxiety out of it.

  7. Explore the numerous therapies outside of western medicine to see if you can find one that offers benefit or relief. Get good referrals from friends and family.

  8. Keep an open mind to relinquishing some of the responsibility for the good of lowering your stress level and improving your mental health.

  9. Do what you can, while you can! Whether you are healthy or have illness in your life, consider that our control is limited.

  10. While there is definitive change in our lives and the options may vary or seem more limited, we must recognize that we have more strength and control than we realize.

Nature on Netflix To Wake To, Sleep To, and Enjoy

Bring a bit of peace and beauty into your home! If you are a nature lover and need a calming force that mesmerizes, might I suggest you turn on the captivating vistas of NatureVision TV now on Netflix. Season 3 unveils about 10 hours and 10 episodes of natural world diversity from ocean to jungle.
Whether you meditate with the video and soothing music softly playing in the background or choose to mute the sound just to appreciate the awe of the bounty of creatures and places, this video collection would be great for parties and get togethers. Try using this marvelous collection just as TV art, instead of your TV just being a blank canvas.
If you are a Netflix subscriber and want something unique and attractive to play throughout the day, like moving art, or just want peaceful television to wake and go to bed to, consider this wonderful collection of our planet’s gifts.
I will report more, soon, on other Netflix finds, both nature-related, and not, very soon.

The Magic in Magic!

The Magic isn’t gone, but it is fading fast. The art of magic will never die, but it may become blurred, as new technology replaces the beauty and purity of performance magic. Live magic is just that—it’s magical. When performed correctly and the magician has done his job, the participant feels that the impossible is, possible. Some magicians embarrass or make their audience feel stupidly duped. The magician is meant to impress but not to break the bond between audience and performer. Magic is for everyone: young or old, there is a place to appreciate the grace and fluidity of sleight-of-hand. One should appreciate the trickery of the eyes and misdirection. Cleverness is worth recognition!

The sad reality is that the neighborhood magic store has rapidly gone away for good, only to be replaced by the video game. This dying art has a long history, reaching back to ancient Egypt and possibly even longer. To lose the joy that this art has sprung on so many, and for so long truly is a tragedy, indeed.

I hope that as generations and technology continue to evolve, that the creative minds of those drawn to magic can continue to update and improve upon the wonders of magic. Magic can be reinvented and re-introduced to new audiences in novel ways as materials and new innovations appear.

Keep the Magic Alive!

I have written about the benefit of video games and Parkinson’s disease, but had a deficit of articles on the benefits of performing and practicing magic. I think that aside of the many years of enjoyment of entertaining myself and an occasional audience, magic has given me numerous gifts that I will quantify:

-Magic makes you think in order and organized linear steps.

-Magic forces the performer to communicate, socialize, and be more outgoing.

-Magic helps improve eye-hand coordination and joint flexibility.

-Magic is universal. Magic is entertaining. Magic is sheer fun.

-Magic doesn’t feel like therapy, but maybe it is!

Walt Disney is quoted to have said, “It is fun to do the impossible!” Magic is about making the impossible, possible, even if it’s just for a moment.

 

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My Holiday Card!

My card to you for these holidays,

Is one of appreciation, in so many ways,

My focus is Parkinson’s but I’ll try to write more,

My goal is to share insight and options to explore,

As the holidays near and you may take on more stress,

Be kind to yourself, and worry less on the mess,

Enjoy your family and your treasured friends,

Keep the spirit, long after the season ends,

Thank you for reading and joining my site,

To all of you readers, I wish you a goodnight!

Thank You!

Healing Becomes a Prime Time Show

Healing Becomes a Prime Time Show

The world is shifting faster and even more progressively to complementary medicine, than I would ever have imagined. While late-night television channel surfing, I found a program that appears to be both informative and comforting. This new show is on a channel that I rarely watch. Home to numerous reality and family related dramas, TLC is not a station that usually offers programming that thrills me. I will admit that this show really interests me.

I came across a new show called, The Healer. Let me say that as a Parkinson’s patient and a reiki master, I use the term “healer” very rarely and very carefully. I had to see what TLC was doing with someone who had the ego and gift of restoring one to health. To use the word “healer” takes on a serious responsibility.

Charlie, an Australian entrepreneur, has been using his “gift” for several years and seems to deliver results with varying success. Charlie admits that results may depend upon the malady and the severity of it. I respect that he takes his gift so seriously. He freely admits that some illnesses may not respond well to his energy work, while some may react better. I also like that he shares his gift at no charge.

Doctors on the show are amazed, without explanation, yet appear to be willing to make the mind-shift that energy work may have merit. They are witnesses of the inexplicable. The doctors don’t deny that after Charlie’s treatment, something substantial has just occurred for their patient. Skepticism is understandable from the medical community, but when they see results from complimentary therapies, they should be willing to acknowledge them. One of the biggest dilemmas facing energy workers and the medical community is that if they both worked together, the patient may very well see surprising new results and at minimal cost.

I have seen slightly over one episode so far. I am an energy worker. I find the delving and unveiling of energy work on prime time television as a huge leap in the right direction! Shows like this demystify and shed light on the benefits of touch. This television program helps to show that hands on work has much to offer. In the United States, patients are less likely to pursue energy workers. In my opinion, the reason that many doctor(s) discount or don’t understand the potential benefit of working with energy practitioners is that little to no research has been funded.

Not until seven years into my diagnosis of Parkinson’s disease, at the age of 32 was I introduced to Reiki. From day one, I went from skeptic to believer, immediately. After experiencing what I had so easily discounted, it turned out to be something life-changing. Reiki hasn’t healed me to where I am void of symptoms.  I do know, not scientifically, that Reiki has made my life considerably better, increased my quality of life, and slowed my Parkinson’s progression over these last 20 years!

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