When I was first diagnosed, the neurologist in 1991, coldly and in a matter of fact tone informed me that I had “a reptilian stare”! I don’t know if this is an official piece of medical terminology or the vernacular, but I most assuredly must express my thoughts of using such a crude comparison.
Doctors can be outstanding resources for data gathering and possible new treatments, but often fizzle when it comes to bedside manner, hand-holding, support, thinking outside the box, or just sharing compassion. I know that there are some of them out there and I hope that your doctor or doctors are of the compassionate qualification—but if he or she is not, what do you do?
Here lies the $64,000 question (old reference-sorry), of asking what it is that you expect to receive from your physician and how it is delivered?
Is it so difficult to reach your doctor that you can’t get a 24-hour response? Any response?
Navigating the labyrinth-like phone system of most medical providers is a test of resilience and sheer willpower. I think that it might just be an exercise to see just how committed their patients are to the practice. I would compare calling doctors’ offices a close comparison to my childhood game playing of that ever so frustrating, never-ending game of Chutes and Ladders—almost as annoying as pick up sticks. Ahhhhhhhhh, the good old days.
Some doctors’ offices think that they have joined the 21st century by installing these “portals” that are misnamed, closer to a black hole, are often unread on a timely basis, and overly buggy or confusing to maneuver around—other than my issues, they are great!
I don’t have any insight into defying the complexities of the phone systems or portal projections, but you might express your frustrations to your doctor and any staff who will listen. Be sure and share the good stuff with your doctor’s office as well, when this might happen.
This is my first real attempt at an inspirational film. I hope you enjoy it and share it.
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!
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.
The World Weeps for Geoffrey—A Part of our childhood has gone!
Without trying to sound like an old man reminiscing, when I was a boy we had real toy stores, 5 and dimes, candy stores, nut stores, and many more magic shops than we have now! Sure, the web is great– and Amazon has everything, well, almost, and now, if you know what you want, they can probably just ship it to you directly.
The occasional trip to the toy store was this former kid’s highlight. Rock’em Sock’em Robots, Battle Tops, Shoots and Ladders, Monopoly, Clue, besides the creations from Atari, Wham-O, Hasbro, Mattel, and the multitude of toys that most of us grew up with. Is online fulfillment to be the only toy store chain replacement? Are the days of the toy store long gone?
March 14, 2018’s announcement is a tragic blow to those of us who learned patience, concentration, manners, etiquette, cooperation, character, and sportsmanship, all just from board games, alone. Toys teach sharing and bringing friends together to learn proper play. Toys R Us, rather than just thinning the losses of a few chosen select toy superstores, has announced to soon shutter ALL of their toy superstores as well as Babies R Us!
While this may not mean much to some, I know that in my life, the toy store inspired me to invent and look beyond what could be! It expanded my imagination of who I could be or at least dream to be. A toy is really a child’s first tool! Tools can make us better, more productive, and diverse. Toys keep us young. They keep us active, initiated, and sometimes even, enchanted!
Losing the incredible mind of Stephen Hawking, after his contributions to space and science is a huge loss to dreamers everywhere (but what a contribution to the science, disability, and humanitarian fabric of our lives) — more of my tribute to Professor Hawking, very soon.
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:
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!
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
Keep an open mind to relinquishing some of the responsibility for the good of lowering your stress level and improving your mental health.
Do what you can, while you can! Whether you are healthy or have illness in your life, consider that our control is limited.
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.
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 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.
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.
Winter is cold and Winter is icy,
The days are dark and the roads are dicey,
Snow can be pretty when it is new,
As it gets older it looks like burnt stew,
As I get older, the cold gets less tempting,
From occasions galore, I find myself exempting,
Okay, I admit my blood is quite thin,
Blame it on age, it isn’t a sin,
Ice and sleet, I really don’t like,
It probably goes back to being a tyke,
Starting today, I’ll stay inside,
I’ll sit by the fire with cocoa and hide.