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!
Pressure hits us all. Some people thrive under pressure, while others just cannot deal with it. The varying degrees of pressure may depend upon where we are in our lives. When we are hit with multiple stress points in our life, like illness, family issues, concerns about loved ones, financial dealings, or just daily living, pressure will compound.
Unexpected events are going to pop up as we get older. Factors totally out of our control will try to take a toll, but there are ways to be better prepared for the unexpected obstacles that we may encounter. These are not sure-fire solutions for dealing with pressure, but maybe one or two methods to offer a few moments of solace and peace.
- Focusing on your breathing and sitting quietly for brief periods can be calming. Clearing your thoughts from your mind and just focusing on yourself only for a few minutes may help to reduce the pressure.
- Relaxation, be it reading a novel, working on a jigsaw puzzle, or listening to your favorite music should not be forgotten or discounted. I am a big fan of music.
- Keeping a journal, drawing, singing, looking at photos, or watching your favorite comedy are all ways to relieve the pressure for a brief respite. These are but a few of the variety of options available to us.
Sometimes the pressure in our lives requires outside intervention and we need the help of family, friends, or even professional help. Don’t push away help if you truly need it. We all need help at some point!
Don’t be alarmed– but be aware, my fellow Parkinson’s disease travelers!
As if we didn’t have enough to worry about along our journey, it was released recently, that the Transportation & Security Administration (TSA) has a program called “Quiet Skies” that is noting behavior, looking for excessive fidgeting, perspiration, and cold stares by passengers. Supposedly, fifty passengers a day are identified.
We are being tracked and monitored both on the ground and in the air. Our habits, reading material, and reactions are noted and logged, if we bring any kind of attention to ourselves. The knowledge that anything out of the ordinary needs investigation is understandable, but when you are faced with a neurological disorder that can alter your walking, uncontrollable movement and body temperature regulation (both hot and cold), tremor, or balance issues- these physiological reactions are possibly red flags that could bring focus on those of us living with an illness.
Maybe, just maybe, through education and identifying ourselves as people with Parkinson’s and educating TSA agents about facial masking, dyskinesia, bradykinesia, as well as the numerous subtleties that can come with Parkinson’s, might be just what the doctor ordered. Instead of making the TSA wonder what we are going through, we need to create a teachable moment that might just lead to real changes.
People suspect and often fear what they don’t know about. Unless you live with Parkinson’s disease daily and are aware of the wide variety of symptoms and unpredictability of this illness, only through education and extra training will those unfamiliar with neurological disorders come to be educated.
Rigidity in thought and body may go hand in hand. Rigidity can be many people’s main complaint when they are first diagnosed with Parkinson’s disease. Keeping active, moving, exercise, and stretching are just a few of the tools to keep in mind when your body starts to stiffen up.
As we age, it gets easier and easier to become so convinced that there is only one way to do something. When we get to this mentality that there is only one correct answer, we may be shorting ourselves of new pathways and seeking new alternatives. The sooner that we accept the way we used to do a certain task may have changed, the sooner we can create a plan to identify and try a new method. Flexibility in body, mind, and attitude are necessary when considering what it is you want to tweak with your illness. Sometimes, it may take a slight increase in medication to improve your on-time and reduce symptoms of the disease. Sometimes, thinking outside the usual structure of traditional medicine can be fruitful.
Had I not incorporated reiki, massage, meditation, qigong, yoga, exercise, and reflexology, all in to my life, I honestly don’t know where I’d be. I can tell you this, at first, I was not a believer. It took a leap of faith and necessity to get there. Had I not gone outside my comfort zone, I would never have benefited from these various therapies
For those who question the true benefits of complementary therapies, I ask this: Don’t you think that these therapies might have some merit if they’ve been around for hundreds to thousands of years? Is skepticism holding you back from trying something new? Is it time? Is it money? What holds you back from exploring new options of helping yourself?
Adding a new practice, therapy, or routine to your health regimen takes some investigation, research, and commitment. Keeping positive and remaining hopeful are beneficial in whatever you choose to try.
Depending upon your choice of therapy, it may be important to confirm with your physician, neurologist, or specialist, just to be safe. I am not a doctor! I am a Parkinson’s patient of over 30 years that can declare benefit and relief from these therapies.