Category Archives: Media & Trends

Sequestered Gratitude

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!

A Very Different Parkinson’s Awareness Month!

In just a matter of days, our world has been turned upside down and around by an invisible and deadly invader. Many of us have turned to an online life of Zoom or Facebook Live. Whether it is for schooling, our occupation, support, workouts, weddings, births, or even funerals. Our life, from start to finish, has become a digital experience.

If we were a lonely planet before the COVID-19 virus’s rampage, our sequestering for our health doesn’t help our mental state. Socializing and getting to know our neighbors is improving and uniting us in ways not seen since WWII.

April is Parkinson’s Awareness Month! As COVID-19 continues to impact the world, it frightens me that all of us who have Parkinson’s disease are more at risk to the virus. Many of us have weakened immune systems and are susceptible to respiratory complications.

 

This Parkinson’s Disease Awareness Month Has Changed

This is a Parkinson’s Disease Awareness Month like no other! As our message of awareness may get muffled in the shadow of the threat of this virus, it’s important to continue to share information. Normally, awareness about Parkinson’s would be focused on informing those unfamiliar with Parkinson’s about:

  • History of Parkinson’s

  • Diagnosis

  • Prognosis

  • Parkinson’s Medications

  • Research or Therapies

Rather than offer an awareness about Parkinson’s, we should consider a more timely tact to provide an awareness about protecting ourselves from this dangerous Coronavirus! Please stay strong and maintain your physical and mental health by staying active. So, here are a few sites to keep you informed and up to date:

Please don’t take unnecessary risks. Be safe! Be careful! Be Well!

Some things to watch on Netflix at this time.

If you have Netflix, here is a list of some suggestions to consider:

As we restrict ourselves from human interaction and search for binge-worthy material to entertain ourselves, I thought that I would share some of the programs that you might have missed. I tried to select mostly positive subjects or at least those that had upbeat outcomes:

Upbeat and Positive Shows to Binge on Netflix #1

No preference by order

The Repair Shop – A British reality show that is touching and heart-warming.

The Kindness Diaries – Another British show that makes you feel good.

Amazing Interiors – Surprises of the creativity that we humans think up!

Heal – Powerful and eye-opening!

Tidying Up – Marie Kondo transforms living spaces and lives.

Street Food – Behind the story of a few nation’s popular street foods.

The Story of God with Morgan Freeman – Thought-provoking.

Grand Designs – Some interesting builds!

The Game Changers – Look who is changing their diets and why.

The Andy Griffith Show – Good old-fashioned standby!

Hugo – Follow a boy’s magical journey!

Jeopardy – Compete with friends and family with the classic game show!

The Who Was Show – Humorous look at historical characters.

The Universe – Great visuals and a fascinating look at space.

The Twilight Zone – A treasure trove of sci-fi and great stories. (Not for young children.)

The Mind Explained (There is 9-11 footage so be careful, if you have kids-use parental judgement.) Explore the brain!

The Bodyguard-Follow a British Officer’s rise to Bodyguard. (Violence/Action)

Sherlock-not for kids – Modern day British genius solves mysterious crimes. Benedict Cumberbatch is brilliant in the role of a younger Sherlock. (Violence/Action)

Locke and Key – ( Mystery) I have just started it, but I am intrigued! Mysterious house and curious keys to explore.

Daredevil-violent Marvel series about the blind vigilante superhero! (Violence/Action)

These are just some shows that I am watching or have watched. Karl Robb 

Getting What You Need-Support

 

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.

 

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.

Season’s Greetings from Karl Robb at asoftvoice.com

Wishing all ASoftVoice.com readers a very Happy Holiday Season!

 

From Karl Robb:

 

Rock Steady Boxing is making a difference in my Parkinson’s disease!

Rock Steady Boxing and my coach, Alec Langstein (https://rocksteadynova.com/), have made me stronger, fitter, and quicker. There is a definite and noticeable improvement in my mobility, agility, and balance. When I am hitting a heavy bag, I will hit it hard but when given the chance to hit with someone wearing focus mitts, I always hit harder, faster, and with more intensity. There is just something about the human interaction that makes me want to step it up a little and to put in even more effort. My coach and my boxing mates motivate me to do my best and to push myself to excel.

Rock Steady Boxing, three days a week, has made a very noticeable difference in my stamina, my overall condition, and my life. I am in the best shape of my life, if you don’t count the Parkinson’s disease—it sounds hard to believe, but it is true.

Finding What Works For You

Motivating words and cuing from my coach, my care partner/spouse, or even a concerned bystander can help me to work harder and find strength that I didn’t know was there. Music moves me, makes me box harder, focus better, and picks up my spirit, all at once. Digging deep down for strength has taught me that if I push myself, just a little more, I may be able to do a little more than I thought.

I encourage everyone with Parkinson’s seeking inspiration, motivation, and an exercise program to check out Rock Steady Boxing in their area. Finding that right exercise, therapy, or practice that feeds your spirit, is so important. Don’t wait or stop trying to find what works for you—time is precious!

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.

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.

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