Category Archives: Uncategorized

Dyskinesia Isn’t A Dance and It Really Isn’t Funny!

Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”

Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.

BellPeople who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.

Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.

I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.

Collaboration with PatientsLikeMe

Karl Robb and Angela RobbI am so excited to announce that Angela and I will be guest blogging for the site, PatientsLikeMe.com. I look forward to sharing stories, insights, and information through my blog posts and joint posts with my wife and partner, Angela. Here’s a link to our first post, a Q&A session: http://bit.ly/2iJb0Ex

If you are unfamiliar with this website, here’s a quick description from the PatientsLikeMe About Us page:

We’ve partnered with 500,000+ people living with 2700+ conditions on 1 mission: to put patients first

Imagine this: a world where people with chronic health conditions get together and share their experiences living with disease. Where newly diagnosed patients can improve their outcomes by connecting with and learning from others who’ve gone before them. Where researchers learn more about what’s working, what’s not, and where the gaps are, so that they can develop new and better treatments.

It’s already happening at PatientsLikeMe. We’re a free website where people can share their health data to track their progress, help others, and change medicine for good.

Summer Reprise – “Motivation”

What keeps you motivated?

What gets you out of bed every day?
What makes you happy?
What inspires you?

Every day may be about small victories.

They count.

Be proud of your achievements.

Don’t discount yourself or what you accomplish.

SaveSave

SaveSave

Summer Reprise – “Trying to Understand Stress as It Relates to Parkinson’s Disease”

I will be re-releasing this and a few other posts from my archives that I think are worth revisiting:

If you are a frequent reader of this blog or have read my books, you know that I talk a great deal about the impact that I believe stress plays on Parkinson’s disease and the related symptoms of the illness.  Make note, I am neither a doctor nor am I a clinical researcher. I have recently found this fascinating research showing signs of scientific evidence to validate more of what I have experienced and believed to be true – stress may have a significant role in Parkinson’s.

 I have seen benefit and strongly believe that if you are able to lower your stress level, you can improve your symptoms of Parkinson’s disease. There has to be a logical reason why when many of us go on vacation or get deeply involved in a project that engrosses us, we sometimes see improvement in our condition.

How often do you find that when your stress is lower you have unused medication at the end of the day because you found that you didn’t need it?

Does this happen to you when you go away to a place less full of stress, like the beach or the mountains?

If stress does play an important factor in neurological disorders, and it looks very possible, then the science of stress needs deep exploration—quickly.

 I encourage you to read this paper online and judge for yourself. I think that you will find some observations that need further investigation.

To read the paper for yourself, go to http://jnnp.bmj.com/content/85/8/878.long

Healthline Selects ASoftVoice.com Three Years in a Row as a Top Blog for Parkinson’s Disease!

Healthline Best Blogs Parkinson's Disease 2017I am so honored, humbled, and proud to announce that for the 3rd year in a row, Healthline has recognized my blog, http://www.Asoftvoice.com, as one of the best Parkinson’s disease blogs!  I enjoy blogging and sharing my experiences and thoughts with my readers. It means a  great deal to me to know that my site may help in some small way! Thank you for reading my posts and coming to my site! I hope that I can continue to offer the content that you enjoy and find to be of assistance.

News May Have An Impact!

Hyperbole on television, the evening news, politics, the Internet, and especially late night shows, is more common than ever. Our exposure to the dramatic and the end all be all is becoming a standard occurrence. Every day we wake to a new dilemma that involves “the greatest”. “the best”, “the most tremendous”. It is a contagion that gets ratings, sells newspapers, and is the marketer’s tool of choice. Watch any infomercial pitch and you are sure to hear hyperbole.

Hyperbole is ingrained in today’s messages. Usually, the message is louder and more shocking. Drama ensues.

A few years ago, I tried an experiment to catalog the many messages that I received from viewing 2 hours of one of the cable news channels. What follows are most of the crises discussed by the news team. I’m sure that I must have missed a couple. You’ll notice that most of these topics are not of the positive nature. I think that this proves that the daily messages that we are exposed to may very well have a direct connection to our thoughts and our feelings.

Here they are:

Train bombing, Missing Dolphins that were raised in captivity, Heavy rain, City Workers Steal Donated Items for Hurricane victims, Earthquakes, Sexual Abuse of a sports star, NASCAR Fight, New Orleans Health Care Crisis, Rising Oil Prices, Missing college student, Metro fire, Hurricane evacuation, Drought, Murder, Kidnapping, Corruption in government, Sex offenders, Train derailment, oil prices, poverty, inflation, drowning, mold and spore death, robbery, plane crash, home destroyed, stock loss, computer hacking, balcony collapse, contaminated water, abandoned animals, Cancer, lack of potable water, terrorism, taxes, forest fire, thunderstorms, Space shuttle disaster, and nuclear weapons.

If this is what you hear and see in 2 hours of reporting, imagine all the exposure your brain and entire emotional system are forced to process.  If your system is compromised the negativity of these stories could have even more impact.

It might be an experiment worth attempting. Try shielding yourself from the barrage of news that is unavoidable and mostly unchangeable, to see if all aspects of your illness shows improvement. Consider a respite of time for yourself and those close to you. Maybe by doing something to counteract just one of these issues, a positive change might come.

Nothing is better than hyperbole-bad joke alert.

Positive Daily Living Sample Chapter from Dealing and Healing

The following PDF is an excerpt from our new book, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit.

We are excited to provide this collection of exercises and tools that we believe can benefit most anyone! Whether you are an individual, a support group, a social group, or a small informal group, we encourage you to try these exercises and to share it with those who you feel may benefit from it.

If you like this chapter and would like to purchase the workbook, it’s available for purchase online at Amazon.com and BarnesandNoble.com.

Dealing and Healing Chapter 29 Positive Daily Living

Chapter 29 Positive Daily Living

Remembering Those Before Us!

PD Tulip

As Parkinson’s Disease Awareness Month comes to a close, as one well too familiar with this illness, I am compelled to bring awareness to those who have left us in the struggle. I am so very grateful to have known them and to have shared their stories and their lives. Losing friends, whether it is from PD or not, is a pain that I dread. Yet, death is a fact of life that none of us likes to talk about or truly accept. I am so grateful for the friendship and acceptance that our PD community continues to share. I truly hope that all 12 months become months of Parkinson’s Disease Awareness–not just one!

Stretch and Grow-10 Keys to Maximizing Your Happiness and Growth

  1. Never lose the curiosity and desire to learn more about everything! Science, art, music, history, and the world around us can feed our quest for knowledge and understanding as we continue to learn.

  2. Try picking up a new talent or improving upon an old one. If you enjoyed playing an instrument, performing magic, shuffling and dealing cards, juggling, whistling, telling a joke, then think hard on what would bring you the greatest joy to add to your abilities, and explore it.

  3. As we age, keeping focus becomes more of a challenge. Work on maintaining focus with brain games, puzzles, reading, and even video games.

  4. Singing and keeping conversation are good for voice and concentration.

  5. Challenging yourself and enjoying yourself at the same time, is very satisfying.

  6. Music keeps me inspired, active, and makes my day so much more enjoyable.

  7. I love to-do lists and marking off my completions–it just feels good!

  8. Fear happens to all of us–when we can reduce our fear and anxiety, everything seems to get better.

  9. Giving back and focusing less on ourselves can result in helping everyone involved.

  10. Being bad can be fun–sometimes eating something that makes you smile, turning off the phone for a few hours, or having a late-night ice cream party can reignite the kid in us that we forget sometimes.

Health Matters!

It is April and that means it is Parkinson’s Disease Awareness Month!

Everyday ought to be Parkinson’s Awareness Day! For each and everyone of us who lives with this illness, we know that our awareness is real and constant. Now, bring that awareness to those who you encounter or who are less familiar with this illness. Too often, much to my amazement, I meet people completely unaware of what Parkinson’s is and what it can do. We have got to do a better job of telling the world about this illness, and what it is all about.

I refuse to mix politics and ethics. I try to keep my nose out of politics on this site and provide my readers with a perspective that informs and allows you to make your own decision.

I have seen the life-changing impact that Meals On Wheels has made and continues to make on lives. Just the thought of erasing a program as important as  this one, is heartless, cruel, and the sign of a system that is out of touch and totally unfamiliar with real human needs.

To reduce  funding for the FDA and the NIH reduces our hopes for a speedy breakthrough or drug development. Our health matters and many of the best minds in research and future developments come from these organizations.

The elimination of the EPA could cause numerous devastating changes and have even more repercussions on climate change and various environmental factors that impact genetically sensitive people. The future of the animal kingdom on this planet is in even greater jeopardy, than it is right now.

Speak up! Let your voice be heard!

It is so important to share your story and how governmental decisions impact you and those you love.

%d bloggers like this: