Category Archives: Education & Support

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!

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!

A Day of Parkinson’s Education in Williamsburg

Last Saturday, my wife, Angela and I had the great privilege to address over 300 people with Parkinson’s and their carepartners/caregivers in beautiful and historic Williamsburg, VA at the American Parkinson Disease Association (APDA) Virginia Education Day.  This event was hosted by the APDA Hampton Roads Chapter and the APDA Richmond Metro Chapter.

Knowledge is Power - A Soft Voice.com

Angela and I participated in a couples talk with Charlie and Cammy Bryan, who are well known for their state-wide work, writing and advocacy. We really enjoyed working with them! The moderator, Don Bradway, knows both couples and did a masterful job of getting us to talk about our lives, perspectives on Parkinson’s disease, and our philosophy on living well with Parkinson’s. We got to meet so many amazing people who are living well with Parkinson’s!

Neurologists from around Virginia did an informative panel on understanding, managing, and living with Parkinson’s disease. My friend and fellow advocate, Bob Pearson did a talk with a neurologist on the importance of clinical trials and his experiences in participating in these studies. A clinical dietitian, Ms. Ka Wong from Hunter Holmes McGuire Veteran’s Affairs Medical Center in Richmond did a very informative talk on inflammation and diet.

The final breakout, held concurrently with the caregiving session, was a panel introduction to the benefits of a variety of therapies including PWR!, Rock Steady Boxing, Yoga, LSVT/BIG and SPEAKOUT!, and Tai Chi! My wife attended the caregiver session which was a panel discussion with three family caregivers. This panel shared their experiences on a variety of caregiver issues, provided informational tips and offered resources.

What was unique about this conference was the variety of people sharing their knowledge with our Parkinson’s community – those living with Parkinson’s, the medical community, allied health professionals and more. This event happens every other year and brings Virginia’s Parkinson’s community together to review the developments in Parkinson’s disease, to inform, to inspire, and to educate.

2019 APDA Education Day in Williamsburg VA this Saturday 9/28

Online registration is still open until 9/25 for the 2019 APDA Virginia Education Day being held next Saturday 9/28 (9am-4pm) at the DoubleTree Williamsburg. April Is Disease Awareness Month!

Registration is only $25 for this day long event which includes speakers on a variety of important topics including:

-People who have Parkinson’s discussing how they live well with Parkinson’s

-Neurologists discussing how to people can live well with Parkinson’s

-Caregiver discussing tips and tricks

-Exercise panel discussing PWR!, Rock Steady Boxing, Tai Chi. Yoga and BIG

-Parkinson’s Research

-Brain Fitness

-Nutrition

and much more!

Click here for more information and to register!

 

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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