Category Archives: Philosophy

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!

Spread Love, Compassion, Care, and Kindness-Not the Virus!

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.

Knowledge is Power - A Soft Voice.com

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.

Take Precautions

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

HOME-BOUND IDEAS

15 Ways to Improve the Lock-down

  1. 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.

  2. 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.

  3. 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.

  4. Hone and expand your creativity by drawing, doodling, painting, writing, cooking, or learn a new language or musical instrument.

  5. Forgive me. They are called books. They are low-tech but they still have a place.

  6. Stay active and force yourself to keep active.

  7. For stress reduction, try to meditate and check out the App called, Headspace. This is the one that I use and enjoy!

  8. Use your technology to keep connected with family and friends.

  9. Build a new daily routine.

  10. Take special care of your animals. Don’t forget them!

  11. Look after your neighbors.

  12. Be kind, compassionate, and patient.

  13. Don’t forget how to laugh.

  14. I plan to organize my old photos and find a way to use them.

  15. 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.

Trying to Process Shock, Loss, and Grief

I didn’t see it coming and the shock that I feel is one full of confusion and sadness. Saturday night, our 11-year-old Chocolate Labrador, Lily, jumped off the couch for her late walk, but her eyes were unclear, her head was unsteady, and her breathing seemed shallow. We think she may have experienced a seizure. When your chronically hungry lab turns down an offering of a treat or a hunk of cheese, your warning sign has been activated. Lily was a canine vacuum, so when she turned down anything close to being edible, there is an emergency pending.

Thinking that you are flexible and easy-going can be dramatically different until, you are challenged.  Life has a way of sneaking in unexpected setbacks that knock your feet out from under you.  We recently experienced the challenge after picking up the flu, following almost a month-long trek through the southeast. This strain of the flu knocked us on our butts, hard. It lasted far longer than we had expected. Our loyal lab, Lily, helped us mend and kept us company, the whole time. She was our nurse and companion through the coughing fits. She wanted to make everything okay. She was selfless!

Angela and I were in crisis mode. We rushed Lily to the 24-hour emergency veterinary clinic. It was early on Sunday morning. Tired and scared is a bad combination, especially when you are worried about the fate of someone you love.

Lily was an exceptional dog, with great intelligence, and a stubbornness for chewing sticks and sometimes eating them. We just assumed that a stick had lodged somewhere, causing her discomfort or a blockage of some kind. Other than this new development, Lily had shown excellent health and vigor for a dog of her age. She looked spry and active and never missed a meal or a treat.

Motivation

 

Lily was a sensitive and caring dog. At first encounter when you met Lily you would see her lip raise and her teeth would come out—some saw a snarl, but if you knew her and her nature, you saw her smile. She greeted everyone with her welcoming smile. Her smile brought so much joy to so many, especially us.

It was close to midnight on Sunday morning at the emergency vet, when Lily tried to smile at her doctor but was only able to make a partial lip raise. She really tried. Her tail wagged and she searched for a greeting, but the energy just wasn’t there.

Our emergency vet was a young man in his early thirties. He was a very gentle and accommodating doctor who bonded immediately with the ailing Lily and her anxious parents. We explained our situation to the doctor. He told us he would scan Lily to check her insides for any possible cause for her discomfort.

Ten minutes after he had left the room, he returned with devastating news that she was bleeding in her heart due to a cancerous tumor. Her options were not fair to her and we were left with no choice but to give her a peaceful sendoff. We would not be taking her home again. It happened so fast and at around 1:00 AM in the morning.

 Trying to comprehend the situation and the sheer rapid pace of information and decisions that were being flung our way took all our concentration and strength. Our energy was drained, and our emotions were overwhelmed. We were not prepared for what the universe was doing to Lily and us and the speed with which it was happening. Lily was gone by 4:15 AM. All that I can say is it was a peaceful death. She didn’t suffer.

Dealing with the death of those who are close to us doesn’t get any easier with age. We are still in shock. The pain may dissipate over time, but it will never go away entirely. There are at least half a dozen places in the world that I don’t want to go– one of the top places is the emergency vet in the very early morning /late night hours, or at all.

We are so grateful for the emergency vets’ efficiency, compassion, patience, and kindness. He made a very tough situation much easier when it could have been even more difficult. As hard as losing Lily has been, we see a positive in the wonderful care that she received and the tenderness that we all were shown. There was no way to prepare for this shocking experience but together we will support each other to get through this difficult time.

We miss her so much!

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.

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.

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