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.
This was my first blog post 10 years ago–slightly updated!
When I was first diagnosed at the age of 23, I have to admit, the diagnosis of Parkinson’s Disease (PD )came as a relief. What I had convinced myself was a terminally malignant brain tumor was a chronic neurological deficiency of the neurotransmitter, Dopamine–that didn’t sound as bad. Sure, PD can be degenerative and rarely do people with PD get better, over time–but I will say I haven’t changed my medication for several years. I am lucky and fortunate that my symptoms show a slow progression.
We expect our loved ones, friends, associates, and colleagues to understand our struggle with this difficult ailment. Parkinson’s challenges us all in different ways. Rarely, if ever, do two PD patients share the exact same symptoms. Those who are healthy and untouched by PD are incapable of understanding what it is that we endure with this mysterious and troubling disease. As much as we would like for those who are close to us to understand what it is that we are going through, it just isn’t possible.
Even if we live or work with someone on a daily basis, there is only so much that we are capable of understanding about what it is that they are going through. The best that we can do for any one is to be present, understanding, compassionate, and supportive. Supportive doesn’t mean that you can’t encourage better living and reminding those who you care about to exercise, eat healthier, and to get proper rest.
I’d like to know about your experience with PD. I plan to address issues facing PD patients like doctors, resources, medicines, cooperative medicine, health ideas, what works and doesn’t , Support Groups, PD Conferences, etc.
I hope you find this interesting and helpful.
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!
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.
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!
This morning I received one of those nuisance solicitations from a charity that I had never heard of and still can’t even remember. The caller was clever enough to use a phony id tag of someone we had previously called earlier in the morning. What a devious ploy!
The first thing she said was nearly the most insulting! “Is this Angela?” To which, I replied “Does this sound like, Angela?” I am a 51-year-old male, who sounds nothing remotely close to that of my lovely wife. Either she wasn’t listening, or didn’t care. Not a good start to getting my confidence!
The lady (loosely used) on the call was what I believe to be a sophisticated robocall. The charity organization claimed to be a breast cancer charity (breast cancer was instrumental in my mother’s death) which is a cause near and dear to me.
The female voice on the other end adamantly requested for me to agree to pledge some random amount. Going from high to lower but never addressing my reservations, I was growing more and more angry with the handling of this call.
I asked the voice, “Just how much the charity took and how much went to breast cancer research?”: Her response was disappointing:
“That’s a good question! Fifteen percent goes to research and eighty-five percent goes to administrative costs. Can I put you down for twenty-five dollars?” I couldn’t believe that she thought that I could have been so gullible to say anything near of affirmative! Thus, ended the call!
This is the time of year that charities bombard us with end of year requests. Be empowered, be informed, and don’t be shy to ask what that charity is doing with your hard-earned money. Unless you have a long-established relationship and are familiar with the charity or charities of choice, don’t be afraid to ask the hard questions. You have every right to ask where your money goes and how it is to be used. You also have a right to answers that satisfy your curiosity.
Here are some suggested questions for the charity fundraiser:
Are you a registered 501c3 not-for profit?
Are you on www.charitynavigator.org?
How much of my donation goes toward the cause and not administrative costs?
Do you work for the charity or are you a paid solicitor? If so, you might tell them, “I will save the charity money and make my donation directly—but thanks for reminding me”.
Do not feel pressured that this call is your one and only opportunity to contribute to the cause. If a charity is pressing you for a donation, take another look at the charity and do some background work.
It is easy to be lured into a convincing charity charade that sounds honest and true to purpose. If you want to know what kind of research was funded by the charity, then ask them. They should be proud of their work, not secretive! If you need time for research and to get answers, there is no reason why you can’t ask them to call you back later.
You are in the driver’s seat to your charitable giving. Don’t feel pushed and pressured by paid solicitors! You should feel confident and enthusiastic about the charities to which you give. The best way to be confident about your charitable giving is to know who, what, where, and how your donation will be used. Don’t be afraid to make a difference, just do your homework to make sure you are educated and satisfied with where your donation is going.