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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!

The Missing Month–Where Have I Been?

If you are wondering where I have been or why ASoftVoice.com has had a month of dormancy, I can explain. I am finally capable of telling you just where I have been and the mystery, behind it. The mystery is not nearly as thrilling as this build-up, but it’s fun to write something different for a change. Writing a mystery has some appeal but this is neither the time nor place. I am happy to report that my tale is one of travel. Not too salacious, not too violent, but it does explain my absence.

I am back, after taking almost a month-long adventure-road trip to Key West and back to Northern Virginia. For about 3 weeks, Angela, Lily, the Chocolate Lab, and I explored the Southeast coast and sucked up the warm breezes, compelling sunsets, and miles of open road. Ripe with photo opportunities, my cameras were consistently clicking. Above is a sample and collage of just a few of the pictures that will be in my new gallery, on the website.

Unfortunately, somewhere along the way, we picked up a souvenir, called Flu-don’t pick it up. It is very unfriendly and may cause you to stop off at the Emergency Room on a Saturday morning. I did. A bad cough, a fever of 103.7, and body aches made for a hard-hitting attack. Slowly, I am on my way back and am feeling human, again.

The trip was great! Getting ill has been a setback, but I’m making my way back! Please subscribe, so you never miss the latest post.

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.

 

Season’s Greetings from Karl Robb at asoftvoice.com

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

 

From Karl Robb:

 

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!

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.

Protect Yourself from Summer Dangers

Trust me, I am not a reminder service, nor am I a medical professional, but with the soaring heat of summer, it may not be a bad idea for a few reminders to help keep your life a little safer:

  1. If you are taking Sinemet, pay close attention to direct sun exposure. Make sure to wear sunscreen and protection from the rays, so as not to burn.
  2. Check your medications for sun exposure side effects and talk to your neurologist and dermatologist about any moles, rashes, burns or bumps that are irregular, uneven, painful, changing color, or simply suspicious.
  3. Some of us with Parkinson’s have the challenge of self-regulating our body temperature. It is so vitally important to keep cool and to monitor if the sun is having any impact on you.
  4. Keep hydrated! I had a friend who was only drinking a little more than 4 ounces a day. When I found out how little he was drinking and he came back to hydration, my wife and I were amazed to see voice improvement, better cognition, better balance, and I dare say, a healthier look to his skin.
  5. If you have a pet or child, never leave them in a closed car without cool air blowing and water access.
  6. Don’t forget that many surfaces like concrete, blacktop, decking surfaces, and even wood can get blazing hot, making it very uncomfortable for paws and bare feet. If you have poor circulation or neuropathy, this could be very important.
  7. Be aware of your surroundings and your comfort always. Keeping aware will avoid some of those sun hazards.
  8. People with Parkinson’s are notorious for being deficient in vitamin D. Sunlight is great to help replenish your vitamin D level but pay close attention to too much direct exposure. Choose your time of day outside wisely and monitor your local weather for the safest time to walk your dog or go to the garden.
  9. Don’t forget a hat and sunglasses!
  10. Be sure to remember to always crack open at least one car window so you don’t return to a blistering seat and stifling air!

 

Use good, safe, solid, logic about being in the sun at its least intensity and keep cool!

Upcoming Victory Summit in Philadelphia

On August 24th, in Philadelphia, PA, hundreds of people with Parkinson’s and those who care about them will be meeting together at the Davis Phinney Foundation Victory Summit.

I have attended four Victory Summits and find them to be informative, inspiring, uplifting, and empowering. Registration is free. If you are on the East Coast or within a few hours of Philly and are dealing with Parkinson’s disease, I encourage you to learn more about The Victory Summits and learn more about what the Davis Phinney Foundation does.

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.

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