Category Archives: A Soft Voice book

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!

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.

An Interview with journalist John Williams on his Parkinson’s journey and the common term that he created.

The following are 5 questions for writer/journalist, John Williams, who I met recently, at a local Parkinson’s disease (PD) event, here in Fairfax, VA. We talked about how important it is to remain active and not to spend too much time on the couch! Learn about John’s well-known creation and his amazing career as a journalist.

Question 1: You have been a journalist for many years and are one of the foremost experts on disability. You are known for coining the term “assistive technology”. How and when did you come up with this iconic term?

In 1982 I was writing a story for the Washington Post on a blind business man using a talking terminal. I was trying to find a word to describe what the technology to help the blind man that would be immediately understood by the reader. I grabbed a pencil and tablet and started writing phrases. I don’t remember the phrases that I wrote down. After 90 minutes, the words assist technology were the last words I wrote. However, I did not like the term assist technology.  I wrote assistance technology and service technology. I did not like it. Then I came up with the phrase assistive technology. I liked the way assistive technology sounded. I used the term assistance technology in the article. The editor accepted it. So I used it again and again and again in articles.

The word assistive was not in any English language dictionary at that time. It is now.

Question 2: When did you realize how important your creation of the term “assistive technology” was, and that it was catching on?

In 1985, I started being invited to conferences dealing with technology for disabled people. The words “assistive technology” kept appearing in the conference titles. And I was introduced at conferences as the creator of the phrase “assistive technology.”  I did a lot of free-lancing in the 1980’s.  I wrote for newspapers, magazines, newsletters and assisted TV producers from Japan, Brazil, Canada, New York and Washington, DC and did documentaries on disability issues.

My regret is I have been told many times by lawyers that if I had copyrighted or trade marked “assistive technology” I would be a rich man.

Questions 3: Your long and impressive history in journalism has introduced you to a laundry list of American presidents, celebrities, politicians, and prominent people in the media. Can you share some insights about any of the behind -the-scene interviews that relate to your Parkinson’s disease? I know you talk about how you have fought stuttering for most of your life. Were those who you interviewed, patient and understanding when you interviewed them?

I never had a negative experience with any of the well-known people I have interviewed. I stuttered less when interviewing politicians, CEOs, scientists, writers, actors and other well-known people.

I had two negative instances regarding my stuttering in which I won awards for stories. In 1972, I was working for a company in Pennsylvania that was moving into the environmental area. The company had an office in Rockville, MD.  The article dealt with waste disposal in the North Sea. The article was published in January 1973. My boss received a letter from the corporate headquarters in Philadelphia, PA. The letter stated that I had won a journalism award for my article on waste disposal in the North Sea. The letter listed the names of the other winners. The letter said that I was not to go to the awards ceremony, and I should not be told I won the award. I should be on travel on the award night.

I learned from a colleague about the award. When I confronted my boss about the award and not being sent to accept it, he said, “Corporate knows there will be thousands of people at the ceremony and a lot of international press. The award winners will have to speak. Corporate office wants to avoid the embarrassment of you stuttering in accepting the award and the embarrassment of people knowing that we hired people who stutter.”

I was told that if I went to the ceremony on my own, I should not come to work the next day.

Six weeks later I walked into my bosses’ office and quit.

A similar situation occurred when I wrote for an international magazine. I won an award from the California Governor’s Committee for employment of disabled persons. My boss told me I won the award, and the company would send me to California to accept the award. The night before I was to leave to collect my award, my boss told me that my trip was cancelled. Why? Because the bosses  were afraid I would  stutter on camera or while being interviewed. The company would be embarrassed.

I could not believe what I had just heard. I had been with the company for 3 years, and I had interviewed Senators, congressman, Microsoft’s CEO Steve Balmer, and other well-known people.

I did not go to the ceremony. My award was mailed to me.

Before I interview a well-known person, I make sure I know the subject area well. Sitting before a mirror I make believe I am interviewing the celebrity. I memorize my questions, and I keep my questions short. I listen. When I can I use a portable, digital voice recorder and take notes. I keep eye-to-eye contact with the person I am interviewing.

In addition I have a Sony handheld recorder. I use the Sony to tape my questions and compare my current interview past interviews. I listen to my recordings to hear my stuttering.

Question 4: Technology and assistive technology (AT) has greatly improved and is more accessible to the masses than ever before. You have been active in making this a reality. What have you seen over time and what do feel is left to do for those needing help with their conditions?

A lot has to happen.  Manufacturers of AT products must improve their marketing programs. They need to advertise their products on TV, on the Internet and in publications. Local, state and federal governments must put more money and resources into assuring that schools have the AT products from pre-school through college

The Assistive Technology Industry Association has to broaden its outreach in schools and businesses.

The press must be educated on AT products.

More people with disabilities must get involved in their communities as leaders, politicians.

More corporate giants must work with AT manufacturers to develop better and less expensive products.  Microsoft, IBM, Verizon, AT&T, Apple and Amazon are doing this.

There should be a month titled Assistive Technology month and PSA run showing the contributions of people with disabilities to the world.

A history course should be developed for schools on the contributions of people with disabilities throughout history.

Question 5: You have written for Business Week and several well known publications. What was your experience like as you worked with colleagues and you slowly saw your Parkinson’s disease (PD) advance? Were they understanding, cruel, at ease, or none of these? Did the publications that you wrote for make it easy for you or did you face challenges from your employers? Sadly, there are still challenges with employers and those dealing with conditions. Do you have any advice for them?

When I worked for Business Week, I did not have Parkinson’s disease. I was diagnosed with Parkinson’s disease 8 years ago. Since I was told I have PD, six publications that I wrote for regularly have dropped me as a contributing writer. Editors stopped calling me to write stories as a free-lance writer. Editors stopped sending me to assistive technology conferences.

In 2016, I co-wrote a documentary script with Carol Bash, an independent producer-director for Home Box Office and PBS.  The script was a history of the Civil Rights movement in the U.S. At the time we wrote the script, my PD was out of control. I was having a tough time daily. Over six months I had three separate meetings with possible investors in the project. Because I could not guarantee the investors that I would be on the project from start to finish, they declined to put up the $200,000 to start the project.

I have also missed about a dozen deadlines in five years because of my PD. In several situations the editors were justified for not calling me again. Twice I sent in articles that had numerous spelling errors and poorly written.

My advice to employers interviewing a person with PD is learn about PD and what the person can do now. Give the person a chance to show their ability. Ask the person, “Can you do this task?” If the person says yes then ask “In the time allotted OK? or do you need more time?”

While Parkinson’s disease has slowed me down, I can still work and want to work, I can still do things on my own and will continue. I will keep my muscles moving. I am determined either to defeat Parkinson’s disease or fight it to a draw.

For more informtion about John and his work, visit his website by clicking this link.

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:

 

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