If you are complaining about being sequestered at home, be grateful that you have a home and a place to reside through this craziness.
If you are arguing with your family member about who ate the last waffle, be grateful that you have the time to be with them.
If you aren’t terrified from this virus, then you aren’t alive.
If you are bored, then you have nothing to read, have nowhere to walk, made no attempt to expand your artistic acumen, are unable to access television, internet, radio, phone, or paper and pen.
If you have nothing to do while you are sequestered, then you know everything, have the perfect home, can do everything, and have achieved perfection. Congratulations!
If you are unable to just enjoy a few minutes of quiet time, by yourself, maybe you should ask yourself why this is?
If you aren’t grateful for this time with your family, dog, cat, or loved ones, it’s time, right now.
Take advantage of this precious time and savor your life at home!
Change to the highest degree is here with rampant speed. It’s a new normal for us all. Social interaction and daily life as we know it will most likely change, forever. Change can be uncomfortable and difficult to accept. Only time will tell what our new normal is going to look like.
Be Careful-Be Smart
As COVID-19 makes its way around the world, it is up to us to remain vigilant as we look after ourselves, our loved ones, our neighbors, and everyone on the planet. It is terribly ironic that a pandemic can confine us to our homes, but highlights just how connected we are to one another. Rich or poor, whatever your race, gender or nationality, we are all in this together.
It is my hope that we choose to share compassion and kindness, in this time of need. This is our opportunity to reunify our nations and the entire planet. Whether you choose to deny climate change or think the Earth is flat, there is no denying this virus and the havoc that it is causing.
Those of us with Parkinson’s disease may face an even higher risk than the rest of the population, so be extra cautious in your cleanliness, daily care, and exposure. Educate yourself with these important sites, in case you need more information about protection and care:
Virginia Department of Health – COVID-19
Centers for Disease Control (CDC) – Coronavirus (COVID-19)
World Health Organization (WHO) – Coronavirus disease
15 Ways to Improve the Lock-down
Music feeds my soul and if I miss a day of my music, the day just isn’t complete! Enjoy some type of music that connects with you! Whether the music moves your spirit, your energy, or your mood, play something that moves you.
Reality TV is as close as your nearest window. Too often, we overlook the inspiration of nature that surround us. It may be a brilliant sunrise, a running squirrel, or your neighbors’ dog. Appreciate the simple beauty of the day around you.
Discover a new talent on YouTube. Whether you want to learn to sharpen your knives or learn to juggle or dance, you’ll find it there.
Hone and expand your creativity by drawing, doodling, painting, writing, cooking, or learn a new language or musical instrument.
Forgive me. They are called books. They are low-tech but they still have a place.
Stay active and force yourself to keep active.
For stress reduction, try to meditate and check out the App called, Headspace. This is the one that I use and enjoy!
Use your technology to keep connected with family and friends.
Build a new daily routine.
Take special care of your animals. Don’t forget them!
Look after your neighbors.
Be kind, compassionate, and patient.
Don’t forget how to laugh.
I plan to organize my old photos and find a way to use them.
Streaming services like Netflix have great content for the whole family.
These are just a few suggestions to inspire moving ahead in this trying time. Be safe and take of yourself and anyone else that you can!
I hope these suggestions are helpful. My intent is to offer some positive thought.
If you are wondering where I have been or why ASoftVoice.com has had a month of dormancy, I can explain. I am finally capable of telling you just where I have been and the mystery, behind it. The mystery is not nearly as thrilling as this build-up, but it’s fun to write something different for a change. Writing a mystery has some appeal but this is neither the time nor place. I am happy to report that my tale is one of travel. Not too salacious, not too violent, but it does explain my absence.
I am back, after taking almost a month-long adventure-road trip to Key West and back to Northern Virginia. For about 3 weeks, Angela, Lily, the Chocolate Lab, and I explored the Southeast coast and sucked up the warm breezes, compelling sunsets, and miles of open road. Ripe with photo opportunities, my cameras were consistently clicking. Above is a sample and collage of just a few of the pictures that will be in my new gallery, on the website.
Unfortunately, somewhere along the way, we picked up a souvenir, called Flu-don’t pick it up. It is very unfriendly and may cause you to stop off at the Emergency Room on a Saturday morning. I did. A bad cough, a fever of 103.7, and body aches made for a hard-hitting attack. Slowly, I am on my way back and am feeling human, again.
The trip was great! Getting ill has been a setback, but I’m making my way back! Please subscribe, so you never miss the latest post.
For the first 7 years of being diagnosed with Parkinson’s disease, I didn’t see a need, nor did I have a strong desire to join a Parkinson’s disease support group. When I moved to the suburbs, my neurologist, at the time, encouraged me to see what support groups could offer. After attending meetings of a few support groups, my wife, Angela, and I envisioned what we wanted in a group. In a very short period, I went from avoiding Parkinson’s support groups to speaking at them and even starting one of my own. My wife and I ran our support group for a dozen years. I learned so much from so many amazing people. As much as I thought that I didn’t need a support group, it turned out, that I really did.
The reality is that a well-run support group offers camaraderie, information, and a wisdom that comes from so many, all in one place. A support group can show you what is working and what to avoid, doctor information and feedback, available classes that pertain to Parkinson’s, local therapists, caregiver support, Parkinson’s news, and speakers in your area. When you find a good group, it feels like another family and a place that you belong. A strong network of family and friends is crucial to your health and wellness, no matter what the illness.
Some support groups may not match your personality or may not be the kind of group that you feel comfortable with, right now. I wanted a group that focused on the sharing of information and left me more empowered than when I came in. We made a lot of friends, shared both the good times and the rocky times, and provided one-another moral support. Despite our age differences and unique situations, we all learned together and bonded together into a cohesive unit for most of the group’s longevity.
We Are All In This Together
Knowing that you aren’t alone, is so important. Something as small as telling someone that you are thinking of them or that they matter to you can save another’s life. Knowing that people are thinking about you and caring about you is so empowering. Just a simple quick text, an email, a phone call, or a good old-fashioned greeting card can make a huge impact.
Care-giving has its stressful moments. We all need a break. Taking time for ourselves is not selfish-it’s a precious necessity. Your self-care makes you a healthier more helpful contributor.
Helping Ourselves Helps Those Close To Us
Patient or caregiver, there is no shame in admitting that you need help. It takes a strong person to go outside his or her comfort zone. Tell someone close to you what you are feeling and to let them find assistance for you.
I am not an expert on mental health nor am I a doctor. This is not medical advice; it is only what I have seen for over the 30 plus years of having Parkinson’s disease. I have observed friends struggle, who may have benefited from this kind of help. If you see a friend in need, reach out and offer that help. You may be saving a life.
National Suicide Prevention Lifeline is 800-273-8255 or 988 in the USA. Go to https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines for an international list of hotlines.
Today, 9-11, marks an historic and tragic event that not only shook America but the entire World. The attacks of the World Trade Center, the Pentagon, and Shanksville, PA impacted the World, changing everyone’s lives. This day will forever commemorate the lives lost that tragic day and the heroism of the men and women who met the challenge of saving lives while risking their own. For a very brief period, I saw something that I had never truly witnessed, experienced, and appreciated.
On the frenzied morning of the fall of the Twin Towers, my wife and I were stranded in Atlanta where rental cars were nearly unattainable. Planes were grounded and we needed to get back to the DC area. The country seemed under attack and we were acutely alert, vigilant, and nearly paranoid–but, something beautiful rose out of the fear and chaos.
For about three weeks or so, a warm and loving blanket of compassion covered much of the World as citizens gave of themselves. In this time of immediate need, when so many were in shambles, volunteers ran to assist in various ways, just to be kind and of service. This is the best part of humanity–the caring, giving, sharing, and loving part that unites our citizen’s eternal hope and fortitude.
The acts of kindness like receiving a much needed rental car from someone that we barely knew, so that we could get closer to home, renewed our faith in doing good.The coming together and generosity reminded me that goodness still existed. An horrific event that took so many innocent lives brought us all together. I treasure the wonderful camaraderie of pride and love for humanity that shone for that gorgeous but ever so brief moment in time.
I have hobbies: I write, I read, I travel, I photograph, I do Reiki, and I collect shark’s teeth. Shark’s teeth are elegant, silky, shiny and smooth. They come in all shapes, sizes, colors, textures, and tones. Just like people with Parkinson’s disease, all the teeth are totally unique and full of character. The teeth are technically a waste product of discarded chompers that are fossilized over long periods of time. Some are black, brown, gray, speckled, multi-toned, sharp, dull, serrated, or pointed.
I can’t explain the connection that I have to these tiny but beautiful pieces of art. Nature and time have created a cornucopia of remarkable masterpieces. Some pieces are almost gem-like, worthy of display and adornment. Often, their beauty is overlooked, underappreciated, and cast aside because beachcombers fail to recognize what is right in front of them. They fail to identify the magnificence and uniqueness of the diversity of each and every piece. The teeth are results of wear and tear from years of natural forces, while being tumbled through swirling water and abrasive sand. The varieties of sharks combined with the range of conditions affecting the teeth, create a product that is easily underappreciated and often overlooked.
Diversity, it is to be respected and upheld, for without diversity, the world would be boring and tasteless. The splash of colors and striations throughout some of the teeth are due to minerals and variations from the water’s varying pH level. These imperfections in the teeth, add beauty and character, plus they make each tooth memorable and one of a kind.
It takes a fresh perspective to look at something so common, with new eyes. We must look deep and see what is there and not be influenced by what others may want us to see. Some will try to influence what we see. Most of us know what is right and what is wrong. Appreciating these teeth took realization and a level of understanding. I see their beauty even if some do not.
I have been fortunate to meet hundreds of people over these thirty plus years with Parkinson’s disease (PD) at numerous events. After a while, you notice more and more about yourself and those around you. It’s a question that I have been asking for years: Is there a firm personality profile, specifically for people who get or are more likely to get Parkinson’s disease (PD)?
Many of the neurologists that I have shared the idea with, have told me that there wasn’t a profile, while an occasional doctor thought that I might be on to something. I have always had a curious mind and having met so many people from around the world with PD, it has given me an opportunity to make some non-scientific observations and even a rough hypothesis. Here are a few of my thoughts: People with PD are mostly well-educated, professionals, type A, over-achievers, in high stress work, curious, creative, and are outgoing people. People with Parkinson’s are often risk takers and not risk averse. They appear to be determined and are driven to a result. From personal experience, people with Parkinson’s are rich in questions, have an insatiable curiosity, and are quite clever.
What if there is a Parkinson’s profile? What does it mean? Could it help lead us to helping people even before they begin showing symptoms? Parkinson’s disease affects people in so many unique ways that it has been discussed that it could be more than one disease. If PD is more than one disease, it could take several varying solutions to get this illness under control?
The complexity of the human brain and body is unimaginably daunting. It’s inner workings, connectivity with multiple systems, and the diversity of chemical reactions and maintenance is hard to fathom.
In the past thirty years, while I have seen numerous studies, trials, pharmaceuticals, surgeries, procedures, and therapies, however, I have yet to see a targeted individual plan that works for everyone with Parkinson’s. Maybe, if there were an understanding of what our universal link or links to this disease were, we could break it down and eliminate what it is that unites us all, illness-wise.
The brain and all its’ complexities have proven to be a formidable opponent in giving up answers. Parkinson’s disease is a mysterious and complex condition that is going to take multiple approaches to unraveling its’ secrets.
WPC Kyoto 2019
I have had the good fortune to attend 3 World Parkinson Congresses: DC, Montreal, Portland. The 5th Congress has been taking place in Kyoto, Japan #WPC2019. I have been listening to their official podcasts and highly recommend the first three days of podcasts: They are quite well done! The @WorldPDCongress brings the world of people together. This Congress brings together 55 different countries and 3000 plus attendees. I had the honor to be an official blogger for the 2016 Portland event. It is an amazing congregation of people with Parkinson’s, neurologists, researchers, care partners, sponsors, exhibitors, and demonstrations of what people around the world are doing to help themselves. For 4 full days, there are events presentations, panels, and discussions to inform, educate, and inspire. This podcast is hosted by Larry Gifford @ParkinsonsPod
Please take the time to listen to all the podcasts! This link starts with WPC Day 1 and the rest of the recordings will follow in succession.
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.