Expression and making our voice heard is hard enough but if you throw in a neurological wrench like Parkinson’s disease, a whole host of challenges can arise. Some of us speak softly while others may find it difficult to form words or sentences. Our words are often judged be it vocabulary or elocution. But, real expression goes beyond the boundary of words as the transcendence of understanding relates to us through the mediums of photography, oils, pencil, music, film, video, and a host of other outlets.
How we interact with the world is only limited by our imagination. Through the medium of painting, viewers and appreciators experience the work at a gallery or museum, but this is limited access. Paintings gather deep and powerful feelings and yet limit a very particular sector of the overall population. Whether you are a viewer or creator of art, our understanding of the medium and the message make a difference in the impact. There is no doubt that the artistic personality of anyone stifled by illness is at a loss without the therapeutic reward of a creative medium.
Just as a dancer feels the urge to leap and twirl, those with limited mobility and restricted movement may need to express themselves in a manner beyond their media of choice. Bottled creativity may be wasted and untapped. The frustration and built up anxiety of sustaining our message or messages, only adds to feeding the powder keg. When done right, awareness and understanding can come about, through our expressions. Finding an outlet for any sensory message and making one’s “voice” heard is a human necessity, like breathing.
Photography, for over 40 years, besides the written word, has been a favorite medium of choice. Every photo that you see on this site, for the past 10 years was taken by me. Capturing a moment in my life or nature through photography is gratifying and almost Zen-like. When I find myself in a mountain valley or a sun-drenched beach, my focus becomes nothing but the beauty around me.
Those of us with limited options for expression must delve into exploratory mode to uncover the medium that we think fulfills the message that we mean to convey. This is art therapy. Offering creative solutions or even simple solutions can make a difference in a life.
Recently, I have been the recipient of kind acts from those who I don’t know. I am grateful. It warms my heart that an Etsy store owner gave us a beautiful serving spoon as a gift when we bought a book from her. Unprovoked, out of the blue, it was simply a kind act that touched both me and my wife.
Touching other’s lives, whether it is directly or from afar, can change the direction of one’s day or one’s life, depending upon how long you hold on to that feeling. Kindness begets kindness and perpetuates goodwill. It feels good to know that you have made another human being feel good. Kindness comes at anytime and can be displayed anywhere. Here are 15 ways to consider passing on kindness and making those around you and those not so close a little happier:
- Share at least 1 genuine compliment with anyone you encounter in person or online.
- Do a little more for someone than what they asked, if you see that they are in need.
- Buy a homeless person a warm drink and a blanket on a cold evening.
- Keep an eye out for animals that may need medical care or shelter from the weather.
- Start a Go Fund Me page for someone in dire straits.
- Take time out of your day just to listen to someone who needs to be heard, without criticism.
- Offer your expertise to the less fortunate at a reduced rate or for free for your services.
- Join a non-profit board to help get an organization off the ground.
- Buy a cup of coffee, a morning sandwich, a side of fries, or a cookie for the person behind you in line.
- Give the person in line at the grocery store with 1-5 items, the right of way and let them go before you.
- Offer a stranger a smile, a laugh, or just a kind word of encouragement to make their day.
- Be a mentor, a friend, or just be a good listener to those seeking your counsel.
- Offering compassion and understanding to one in need is a wonderful experience.
- A phone call to alleviate a neighbor’s loneliness or sharing homemade cookies with the family down the block can change lives.
- Be kind to yourself and share that feeling with those around you.
Sometimes just being a good listener is enough. Just helping one other can create a chain reaction of goodness. When we assist others, we help ourselves in the process. Be creative in how you make a positive impact in another’s life.
We must live in the here and now, plan for our future, and treasure joys of the past!
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.
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!
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.