We all need a catalyst at sometime in our lives to keep momentum.
For the next 12 days, I will be offering some words of thought and inspiration on a daily basis. I hope that you enjoy it!
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.
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.
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!