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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!

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.

 

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!

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.

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!

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.

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.

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