Blog Archives

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.

 

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!

Season’s Greetings from Karl Robb at asoftvoice.com

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

 

From Karl Robb:

 

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

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.

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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