Category Archives: Dealing and Healing Workbook
As much as Parkinson’s disease tests my day, it does not define my existence. My illness is a part of me, much like my hair color and my bushy eyebrows. It is always with me, but I do not embrace it– nor do I curse it—it just is.
The luxury of time and slow mild progression, if any, has allowed me to use Parkinson’s as a platform. For over ten years, the three-hundred plus blog posts in my archive of blog posts on www.asoftvoice.com continues to be a resource for information seekers.
What was once a straight-forward blog devoted to Parkinson’s disease encouragement suddenly evolved into a somewhat popular published book in 2012, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease, became a reality. For a self-published non-fiction book by a first-time author, the book was surprisingly well-received and graciously promoted by members of the Parkinson’s community. In 2016, our workbook, Dealing and Healing with Parkinson’s Disease and Other Health Conditions was released for anyone looking to make changes in their life (with or without Parkinson’s disease).
I would be remiss, incomplete, and a narcissist, if I failed to bring attention to the woman behind me and the driving inspiration that keeps me in some semblance of alignment. My wife, life-partner, carepartner, best friend, soul mate, and confidante, Angela made both books a priority and brought them to life. Her fortitude, dedication, and patience throughout the book editing process as well as our twenty-two years of marriage is a tribute to her angelic nature and ebullient spirit. She is the gift of a life-time! Michael J. Fox claims to be a lucky man, but I am far luckier.
The encouragement, love, and reassurance from the Parkinson’s community is a vital incentive and pillar to my strength and motivation to the continuation of my blog posts, lectures, future books, and upcoming surprises to come in the coming weeks, and the new year.
Many thanks to my loyal readers, the newly joined and those who have followed me for all these years! I appreciate you reading and sharing my words.
Heroes come in and out of our lives, often unrecognized and frequently under appreciated. On Monday, it struck me just how important heroes are and the amazing power that comes in looking up to a higher standard. Heroes make us better people. They give us something to aspire to and to be. Heroes inspire us to be more and to achieve more than we might, without them.
I was so struck with shock and sadness to learn of the death of Marvel Comics’ founder and genius, Stan Lee. His biography is almost as amazing as the prolific cadre of characters that he brought to life. There is no repaying the numerous gifts that he has given us, as well as the hours and hours of pleasure, excitement, and joy. As a lover of anything and everything Spider-Man, I would religiously watch those cartoons every weekday at 3: 00.PM, after school.
Spider-Man didn’t ask to be given his special abilities, they were thrust upon him and he made the most of what he could do with his unique gifts. Those of us who have Parkinson’s are in a not so different place, in that having this illness makes one hone, uncover, and expand our own powers. We didn’t ask for Parkinson’s disease to come in to our world, but just like Peter Parker, we incorporate those dramatic alterations and deal with them to the best of our abilities.
I have seen Parkinson’s bring out the best in many people. This illness, as awful as it is, can reveal sides of people that you’ve never seen before. From creativity, to artistic ability, to writing or other revealing abilities, sometimes, out of hardship comes new talents and new strengths.
I didn’t know early in my life that I was going to write books and blogs on Parkinson’s disease. It was Parkinson’s disease that caused me to share my journey of over thirty years with those who may be wondering how to navigate the terrain that I have already walked on. Like, Peter Parker, I have learned and adapted.
Heroes keep us upright and moving forward. They remind us that there is still good in the world, when we need it most. Stan Lee’s iconic heroes will most likely never be duplicated, but thankfully, his gifts of brilliance will live on and on.
Today, of all days is the perfect time to discuss the subject of change. Today, in the United States, millions of voters will have the opportunity to let their voices be heard with a single vote to impact their government. Millions of dollars will have been spent in campaign advertising to insult their opponent, praise or question the current or past administration, or just be terribly annoying, until the next election.
I, for one, cannot wait to see these divisive, bitter, mudslinging, name-calling, unbecoming, childish, messages turn into vapor and return to the barrage of those amusing pharmaceutical ads that we all enjoy at breakfast and dinner time.
If just a small percentage of this political advertising bounty were used to inform the public about the needs of the Parkinson’s world, we could educate the planet on identifying, treating, and caring for patients far earlier in their treatment and improving their care for a disease that has no cure. What could be a more noble use of funds than educating the masses about an illness that is so misunderstood and so poorly explored publicly?
Parkinson’s disease is the second most common neurological disorder in America with an estimated 6 million cases worldwide and approximately 1-1.5 million people in the United States. Even these numbers are suspect for lack of updating and availability to necessary data for making better estimates. For as far as we have come over the 52 years of my life and the 30 years that I have lived with Parkinson’s disease, I see a need for a similar buzz for change, much like the excitement that is in the air on this election day and eve.
In Norman Cousins’ book, Anatomy of An Illness, Cousins mentions a placebo study where over eighty percent of the Parkinson’s patients showed improvement. Participants in the study were told that they were receiving a powerful new drug. The pill that they were taking was not a new drug, but the expectation of benefits was strong enough to show improvement. If Parkinson’s is degenerative, wouldn’t you think that the placebo effect wouldn’t work anymore? How is this possible?
Two years ago, after having Parkinson’s symptoms for over thirty years, I experienced twenty-four hours without showing symptoms of Parkinson’s disease. I don’t understand, and I am not so sure that the medical community can explain such an event!
If those neurons that supposedly are dormant, dead, or erased, then someone needs to explain to me how a placebo effect and a Parkinson holiday are still possible! This is a tricky illness that manifests slowly and often very secretively. Often, the first symptoms may be constipation, loss of sense of smell, shoulder or wrist pain, or neck pain.
The latest research points to the gut as being the key culprit for the beginnings of this illness but is Parkinson’s more than one illness? By all the discussions that I have had with experts (many of those living with Parkinson’s and many working in the Parkinson’s disease field), who confirm their belief that it is very likely that we may be dealing with a variety of different illnesses.
A common saying in the Parkinson’s community is that “if you’ve met someone with Parkinson’s then you’ve met someone with Parkinson’s “, meaning that everyone with Parkinson’s is unique. The uniqueness of each and every case and how different each individual deals with a variation of symptoms keeps both patients and their neurologist guessing how to countermove.
Balancing the right diet, maintaining a challenging exercise regimen, and working closely with your neurologist for the right personalized plan are vital pieces to staying on top of my Parkinson’s. We all may respond to something completely different. The key is to discover what the something is that makes that difference for you!
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.
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!