Trust, faith, hope, and diligence are four key components to seeing your way through any health challenge. Personally, they have made my 30 years with Parkinson’s disease more than just sustainable. Living well with Parkinson’s disease takes a variety of skills that must be honed and used. Before I get to trust, let me express the essential weight that faith and hope play when facing illness.
Without faith and hope our internal drive shuts down and leaves us vulnerable to only worsen our condition. We all need to visualize a path for our future, whether it is a leap or a small step. Your path is yours alone and only you can determine the scope of your vision.
When I speak of trust, I mean the belief in oneself as well as believing in others. Trusting that if we follow our gut, listen to our inner voice, and do what we know in our head/heart is a big part of making a good decision. There is much more, though. When it comes to making an informed decision about your medical condition, it is best if you’ve done the research as well. You may want to consult those around you for their opinion.
Trusting your doctor’s decisions, his or her pharmaceutical suggestions, surgical outlook, or any other decision will require your educated consent. You have the free will to reject or accept your doctor’s suggestions. Trust can only go so far when questioning your doctor. You must weigh the pros and cons of the proposed medicines and possible procedures. Providing cogent reasons and facts for why you are adamant about going against a doctor’s wishes needs to be thought out and be thoroughly researched. Depending upon the severity of the recommendation, a second or third opinion may be needed, despite the trust.
Diligence means making use of your time and taking care of yourself. There are things that you can do for yourself that even your doctor can’t. Maintaining a healthy lifestyle and keeping a schedule take discipline but can be very helpful when structuring your day. If you take medicines every day, structure is crucial to stay on time when administering medicines.
There was a time when we didn’t question our doctor’s advice, but with greater access to information and a better understanding of therapies, nutrition, exercise, diet, meditation, reiki and more, there is real opportunity to work with your doctor. As a constant seeker of information about improving your condition, you become a resource for your doctor and are empowered with knowledge that may unveil new options for your future.
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.
I had a conversation the other day with a good friend who had a hard time seeing eye to eye with me about this tragic government shutdown. I say tragic because during this time, those who are living paycheck to paycheck and those in need of medical care, families trying to pay their rent or mortgage, those who are unsure whether they can pay this month’s heating bill or pay their cat’s vet bill are struggling to get by only because our politicians are unable to relate to the families that they are hurting . For anyone just trying to put food on the table, the shutdown can only make life harder.
Appreciating those calm moments of the day, a good laugh, or even a brief nap, may seem simple daily occurrences that are the good stuff of life that we too often take for granted. Too often, we are waiting for something big to land in our lap, but while we are waiting, we miss some of the crunchy goodness. Simple pleasures are often the best.
Playing with your dog in the first snowfall of the season or watching a seagull soar are just two of the magical moments to savor, treasure, and truly appreciate. These are moments that cost nothing and are beyond any kind of currency.
There is a great deal of kindness out there out but much of it gets silenced by louder voices. Many of the soft voices may not get heard, at first, but in time, with commitment, can lead positive change. Loud and noisy can only do so much, but one soft voice only needs to spark one other person to go viral. When the mission is right, everything can fall into place. Kindness isn’t in short supply, it just may need to be cultivated.
Hardships, shocks, tragedies, disasters, illness, deaths, and life tests will be with the human race as long as we occupy the planet Earth. The question for all of us is how often do you take the time to recognize those not so little moments of your life? It’s so easy to get caught up in daily life and forget to be grateful for those simple and little things. Practice gratitude today!
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.
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.