Category Archives: Philosophy

Saying It Gracefully Through Poetry—Robin Morgan’s TED Talk

Eloquent and Poignant Descriptions

Robin Morgan’s TED talk in 2015 is an eloquent expression of her poetic epiphanies from years with Parkinson’s disease. Her gentle cadence and masterful verbiage put her finger on many of the concerns, frustrations, and unknowns in dealing with a most mysterious illness.

Poetry has always puzzled me. I read it—I write it, but rarely for public consumption. Ms. Morgan’s poetic prowess builds upon 4 of her poems that walk the listener, or this case, the viewer into what Parkinson’s disease is, on a very personal level.

A Better Understanding of Parkinson’s Disease

I found it to be fortuitous and coincidental that Ms. Morgan expresses the very same attitude towards the need of expression that I profess. My blog post from yesterday speaks of urgency for communication for a series of obvious reasons when it comes to an unpredictable neurological disorder such as Parkinson’s disease.

Sharing More-Hearing More

Not everyone with Parkinson’s is as comfortable and as candid as Ms. Morgan is in expressing themselves. Exposure from the growing, blogs, books, and videos, are opening the eyes of both those familiar and unfamiliar with revealing insights. Education and demystifying the layers of Parkinson’s disease can only lead to better understanding, communication, and therapies.

Ideas For The New Year

 

Fresh Starts Aren’t Always Necessary

It’s a new year and the thought of those resolutions on the club napkin are but distant memories. Seriously, resolutions can be wonderful intentions yet only to create a burden that wasn’t the intention in the first place. If you are truly goal-oriented, resolutions are simply extensions of those goals that are nagging you the most.

Making Priorities

My biggest battle with my body and mind as I age with Parkinson’s disease is prioritizing:

  • Contending with what I should do and what I don’t want to do.
  • Weeding out projects that I really want to do but know I shouldn’t do.
  • Identifying what I can let go of.
  • There are things I must let go of just to get better.

 There are sacrifices for one reason or another that we all must make. Illness doesn’t always influence our important decisions, but it can most assuredly be a contributor to the making of those decisions.

Drive

Illness provides a perspective for many of us, due to a pushing drive and a boosted sense of urgency. The only solution to quelling the nagging feeling, is fulfilling that drive to produce.

Trimming and Expanding

Most resolutions includes weight loss, health, reading more, less television, or a making more of or a reducing of something. Wanting to improve ourselves is the right direction to go, but if we go overboard, it may have a reverse effect and cause us stress, anxiety, and or tension. We must be careful to ensure that we aren’t doing ourselves a disservice by taking on too much. Knowing our stress level and not exceeding it is crucial to our well-being. Keep your stress level in mind as you monitor your health regimen and overall wellness. Be kind and forgiving to yourself whether you fall off the diet, or not. Stay committed to your projects of 2020! Best of luck!

Feeling Grateful-Happy Thanksgiving!

Being Thankful

On the morning of this chilly windy Thanksgiving day, I want to express my thanks for the support and sincere gratitude that I feel for the readers around the globe that take the time to read my writings on both this site (asoftvoice.com) and (www.parkinsonsdisease.net). I am so appreciative for family and friends. Gratitude is definitely the word of the day!

Thanksgiving reminds us that the things that we may take for granted and discount as small things in our lives, are really not so little at all. I hope that today is special for you. Please know that as I send this out to you in hope that it brightens your day. I wish you a day full of joy!

Yum!

Karl

It’s National Family Caregivers Month-Here are some thoughts!

CarePartner/Caregiver Appreciation

Those of us living with Parkinson’s disease and have a caregiver or care partner to assist us, may overlook or take our helpers for granted. Take the time to show your love and gratitude for all that your caregivers do for you. Show your support and make them aware of your appreciation and the changes that they make in your life. This is a thank you to all those selfless people who make life easier for those who need assistance.

 

Here are some tips for you and your carepartner/caregiver:

  • Caring-Taking care of another can be a rewarding and spiritual adventure that can bring our relationships closer. In any relationship, there are caregiving challenges that will require patience, understanding, compassion, empathy, and possibly, even more patience.
  • Stay Vigilant-You, the caregiver, are the cheerleader, coach, and trainer, all in one, for a team that may or may not show up. It is your responsibility, as a caring helper to be observant and to ensure that you not over tax yourself. You must see that you take respites and time for self-refreshment.
  • Appreciation-My wife, Angela, is the most caring, most selfless, most generous, and most thoughtful person that I have ever met. Acknowledge and do your best in thanking those making a difference in your life. It’s so vital that those caring for us know that they are valued.
  • Limits-If carepartners fail to monitor and maintain their own health, it is vital that those who care about them step up and say something.
  • Watch for Burnout-Continuously caring for another takes a toll on body, mind, and spirit. If a caregiver overextends themselves, they are likely to face health, sleep, and stress related illnesses.
  • Self-Care-Caretaking for yourself, even for a small part of your day can be calming, centering and help to keep you healthy. Keeping your identity and getting time for yourself is a health must for you and those around you. Just a few minutes a day can rejuvenate the entire body.
  • Taking Your Time-Pay close attention to any changes in how you interact and communicate. If you find yourself on edge, quick to react, and overly sensitive or emotional, take a few moments to scan yourself and the situation. Just finding a quiet spot like an office nook to try some deep relaxing breathing may quiet things down.
  • Knowing your Limits-This requires knowing one’s self. Monitoring your condition is as important as the patient’s status. As a team, if the caregiver can function well, the patient sees those benefits as well. Taking care of yourself is the best gift that you can give to those that you love.

It’s hard to take care of others well, if you aren’t well. Take care of yourself and thank you!

Washington Nationals Win MLB World Championship!

Adversity

Washington Nationals Fight Finished @Nationals

Image by: Washington Nationals World Series Champions @Nationals

Epic sports comeback stories are reminders for us all that sometimes the underdog wins. When in the face of adversity, when pressed, the team that you discount will surprise you and overcome the odds. Sports teams, like the Washington Nationals Baseball Team proved so many supposed experts and sports journalists wrong. The Nationals won the wild card series and went on to take the World Series from the Houston Astros in game seven.  The Nationals (@Nationals) future looked bleak after the Astros won game five. Somehow, what looked like an unfathomable task, turned around.The team rallied to fight back and won to go on to the definitive game seven and win away from home.

Sports emulates life. Washington celebrates the accomplishments of the Washington Capitals hockey team, the Washington Mystics women’s basketball team, and now the Washington Nationals. All three have brought the DC area great excitement and energy. This remarkable baseball team found a win just when it needed it and thrived when their backs were to the wall. Like magicians, they somehow manifested what they needed at just the right time.

“Sometimes, it’s fun to do the impossible.”

We all face challenges in our lives that look insurmountable but if we hold on to the inspiration and belief that we can do something amazing, we may very well go beyond our limits. Walt Disney said, “Sometimes, it’s fun to do the impossible” and that’s what the Nationals achieved last night.

Congratulations to the Nationals for their amazing win!

Remembering The Best Part of Ourselves

Photo by Karl Robb

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.

Alike but Different!

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.

Does the Parkinson’s Profile Exist?

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.

World Parkinson Congress (WPC) 2019 in Kyoto!

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.

The Mysterious Future

 

Ben Franklin is quoted to having said:

Do not anticipate trouble or worry about what may never happen. Keep in the sunlight”.

This quote speaks to me when discussing Parkinson’s disease or any illness. Living our best life now, prepares us for a better life in the future. For many of us who try to live in the moment but sometimes slip into predicting the future, we create unnecessary worry, fear, and anxiety. Procrastination for taking care of ourselves now, only delays our future wellness.

There are actions that we can take to prepare for our future physical health, financial health, mental health, and spiritual health. Some future planning can be very helpful in reducing future anxiety.

Our creative and active imaginations can run away with innumerable variations of what our future self will look like. Put a hold on that thinking and focus on the now. Our futures are variable, undetermined, and largely up to the decisions that we make, right now. Fate, destiny, karma, and the universe are most likely going to intervene as well, so let the winds blow and hope for the best, but don’t fret over the outcome, especially if it hasn’t happened, yet.

The quote also refers to the ‘sunlight’, something we all need but many of us with Parkinson’s are susceptible to skin problems. Due to the way our medications may impact our skin to sunlight, it is so important to  apply  sun protection to our skin, avoid direct sun exposure, monitor your skin, moles, and marks for any changes that might be a red flag to rush to your Dermatologist.

Franklin was focusing on staying positive and keeping a positive attitude for the future, in his quote. This is a message for us all to remember when we look to the future. The unknown isn’t to be feared but should be a fresh opportunity. The future may be different than we expect it to be, but it doesn’t have to be negative just because it is out of our control.

%d bloggers like this: