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Parkinson’s Disease Awareness Month 2019

2019 Parkinsons awareness month shirt 1

Parkinson’s Disease Awareness – Together WE are ONE

The month of April is upon us and this means a month of Parkinson’s awareness! There is an array of events, fundraisers, lectures, walks, and more that are planned for April, around the world. If you or someone that you care about is looking for an event in your area, you may want to Google:  local Parkinson’s events in my area, or visit your favorite Parkinson’s organization/charity website to see what they have going on, or consult your local support groups, hospitals, clinics, to see what you might attend locally.

We have updated our events page on this website for the speaking engagements that Angela and I will be presenting this month. If you are in the Northern Virginia area and have an interest in hearing us talk, please visit the 2019 upcoming events page and see what talk you think might interest you. We look forward to seeing you at one of the events on our list of future events!

Watch for more upcoming events and updates! You may want to subscribe to our site, to get the latest post fresh off the press.


In my 30 plus years of dealing with Parkinson’s disease and attending numerous events, conferences, walks, lectures, World PD Congresses, I have amassed an extraordinary collection of Parkinson’s disease related tee shirts which I will commemorate and share with you this April. This first tee shirt is sort of a mystery, but I believe it was created by my dear friend and Parkinson’s advocate, the late James Trussell. He was a dear friend and is greatly missed. He gave so much to the Parkinson’s community!

The shirt speaks of unity and strength–what a perfect message to start Parkinson’s Disease Awareness Month!

Watch for more tee shirts from my collection, this month!

Building blocks for a future for better health!

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.

Conference Nirvana and The Real World!

In 2003, I attended my first Young-Onset Conference in Atlanta where I met some great people and made lifelong friends. In 2004, I was asked to join the planning committee right after the Minneapolis meeting. In 2005, I would help organize and arrange conferences each in a chosen city until 2008: Phoenix, Reston, Chicago, and Atlanta.  Attendance was strong, and the Conferences brought in people from all over the world. The Conference for many of us turned into a large family get together.

The events were not only planned by the committee, but each member would present at the Conference as well. We were encouraged to live by example and to motivate the crowd. Our dynamic group of people with Parkinson’s covered an array of topics of how to live well with the disease.

When you bring hundreds of people together with Parkinson’s disease (PD) in one place, everything Parkinson’s seems normal and the world outside our hotel seemed odd. A peace came over us, where explaining ourselves to why we were doing what we were doing wasn’t necessary. Parkinson’s was the normal for this closed and safe environment and we all understood one another. A symptom of the illness or a drug side effect needed no explanation, but if it did it wasn’t drudgery to relate.  An overwhelming feeling of belonging and being part of something that was changing people’s lives provided us an amazing opportunity. When the final day of the event came around, parting was hard for us all.

The medical information was helpful, but the living knowledge provided to us was empowering. What really made the difference in most of our lives was the freedom that we felt inside those walls and the relationships that we would take away. It takes a special event to recall so many joyous encounters around what could have been a maudlin event—but it was not.

The unity of these participants was unlike any other that I had ever seen. The newly diagnosed were being encouraged by those who had a little more experience with the illness. For many of the attendees this was there first conference devoted to Parkinson’s as well as the first time meeting another person with the disease. This was an important moment for thousands of people with Parkinson’s disease.

This was an event sponsored by a large foundation, organized largely by a committee of 7 or 8 Parkinson’s patients, which focused on educating, empowering, and enriching those diagnosed with PD. Most of the lectures were from those living with the disease and not those attempting to treat this disease. Who better to advise on how to live with an illness than those living with the experience?

There is a place for medical conferences where the program is filled with medical expertise and experts related to the illness of choice. Far too often, I see conferences about living well or living better, but the conference organizers neglect to include the ones who are living with the condition. The ones who are living well with the disease are the experts, in my opinion.

A doctor can tell you about research, medications, studies, and possible medical procedures, but they can’t tell you what it is to live inside our bodies. They can speculate and imagine, but it just isn’t the same. A conference for people with a specific illness, like PD, ought to be planned by the ones who understand it the most.

Expression Choices

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.

 

Who is paying the price?

I found this quote that I wrote a year ago or so. I had put it aside to use for a later date, and now is the time to release it:

Adversity can bring us together, but it is love that can unite us.

Without love and compassion, there is no sealed deal. When both parties are empathetic of the other, there is understanding. Common ground and communication may commence when both parties identify a shared outcome. If one party is incapable of having empathy for the other party’s condition, negotiation becomes far more complicated.

There is far too much hate, anger, cruelty, pettiness, ignorance, violence, and greed in the world. Most of the world wants the same, or at least similar hopes for their future:

  •   Provide a safe place to live and maintain a household.
  •   Access to clean air, fresh water, good nutrition, health, education, and an opportunity to sustain those necessities.
  •   To provide for one’s family and feed, clothe, and educate them.

Some leaders and celebrities exposed to power find it intoxicating and become engulfed in the overwhelming high that comes with authority. At what cost and sacrifice do we make excuses for anyone in public who condones the torrent of hurt being inflicted on government workers, who are just trying to do their job? Our government is famous for negotiation, compromise, and making policy. A government shutdown is a breakdown in everything that the United States of America is based upon. Our mission has always been to try to be a model for the rest of the planet.

Hurting the poor, the sick, the elderly, and those workers living paycheck to paycheck only weakens our government and divides us even more. Creating controversy and misdirection hurts innocent families, be it democrat or republican, is a petty and a desperate act. I have yet to hear any understanding, compassion, or caring words to ease this humanitarian crisis.

 Love thy neighbor got lost somewhere and it is time to locate it quickly.

Perpetuate Kindness!

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:

  1. Share at least 1 genuine compliment with anyone you encounter in person or online.
  2. Do a little more for someone than what they asked, if you see that they are in need.
  3. Buy a homeless person a warm drink and a blanket on a cold evening.
  4. Keep an eye out for animals that may need medical care or shelter from the weather.
  5. Start a Go Fund Me page for someone in dire straits.
  6. Take time out of your day just to listen to someone who needs to be heard, without criticism.
  7. Offer your expertise to the less fortunate at a reduced rate or for free for your services.
  8. Join a non-profit board to help get an organization off the ground.
  9. Buy a cup of coffee, a morning sandwich, a side of fries, or a cookie for the person behind you in line.
  10. Give the person in line at the grocery store with 1-5 items, the right of way and let them go before you.
  11. Offer a stranger a smile, a laugh, or just a kind word of encouragement to make their day.
  12. Be a mentor, a friend, or just be a good listener to those seeking your counsel.
  13. Offering compassion and understanding to one in need is a wonderful experience.
  14. A phone call to alleviate a neighbor’s loneliness or sharing homemade cookies with the family down the block can change lives.
  15. 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.

 

 

 

 

It’s The Little Things That Aren’t So Little!

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!

Messages to Ponder for 2019

Inspiration can come in many forms, be it words, photos, audio, or video. In the coming year, this site will incorporate a wider use of these tools to add to the informational and entertainment aspects of this site. I truly hope that if you or someone you know is seeking information, support, inspiration, or a fresh perspective on Parkinson’s disease  and other chronic conditions, that you might consider sharing this website with those looking for articles on living with illness. The archives on this site contains nearly 400 articles to read on Parkinson’s and living with illness. If you are seeking more content, check out my recent articles on ParkinsonsDisease.net.

The following is a condensed video of many of my messages from my 12 Days of Christmas. I hope that you enjoy it and feel free to share it with anyone that you think might find benefit:

 

Our Holiday Card To You!

Only 2 Days to Christmas!

We must live in the here and now, plan for our future, and treasure joys of the past!

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