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Parkinson’s is Still a Mystery!

In Norman Cousins’ book, Anatomy of An Illness, Cousins mentions a placebo study where over eighty percent of the Parkinson’s patients showed improvement. Participants in the study were told that they were receiving a powerful new drug. The pill that they were taking was not a new drug, but the expectation of benefits was strong enough to show improvement. If Parkinson’s is degenerative, wouldn’t you think that the placebo effect wouldn’t work anymore? How is this possible?

Two years ago, after having Parkinson’s symptoms for over thirty years, I experienced twenty-four hours without showing symptoms of Parkinson’s disease. I don’t understand, and I am not so sure that the medical community can explain such an event!

If those neurons that supposedly are dormant, dead, or erased, then someone needs to explain to me how a placebo effect and a Parkinson holiday are still possible! This is a tricky illness that manifests slowly and often very secretively. Often, the first symptoms may be constipation, loss of sense of smell, shoulder or wrist pain, or neck pain.

The latest research points to the gut as being the key culprit for the beginnings of this illness but is Parkinson’s more than one illness? By all the discussions that I have had with experts (many of those living with Parkinson’s and many working in the Parkinson’s disease field), who confirm their belief that it is very likely that we may be dealing with a variety of different illnesses.

A common saying in the Parkinson’s community is that “if you’ve met someone with Parkinson’s then you’ve met someone with Parkinson’s “, meaning that everyone with Parkinson’s is unique. The uniqueness of each and every case and how different each individual deals with a variation of symptoms keeps both patients and their neurologist guessing how to countermove.

Balancing the right diet, maintaining a challenging exercise regimen, and working closely with your neurologist for the right personalized plan are vital pieces to staying on top of my Parkinson’s. We all may respond to something completely different. The key is to discover what the something is that makes that difference for you!

We Can Work Through Pressure

Pressure hits us all. Some people thrive under pressure, while others just cannot deal with it. The varying degrees of pressure may depend upon where we are in our lives. When we are hit with multiple stress points in our life, like illness, family issues, concerns about loved ones, financial dealings, or just daily living, pressure will compound.

Unexpected events are going to pop up as we get older.  Factors totally out of our control will try to take a toll, but there are ways to be better prepared for the unexpected obstacles that we may encounter. These are not sure-fire solutions for dealing with pressure, but maybe one or two methods to offer a few moments of solace and peace.

  1. Focusing on your breathing and sitting quietly for brief periods can be calming. Clearing your thoughts from your mind and just focusing on yourself only for a few minutes may help to reduce the pressure.
  2. Relaxation, be it reading a novel, working on a jigsaw puzzle, or listening to your favorite music should not be forgotten or discounted. I am a big fan of music.
  3. Keeping a journal, drawing, singing, looking at photos, or watching your favorite comedy are all ways to relieve the pressure for a brief respite. These are but a few of the variety of options available to us.

Sometimes the pressure in our lives requires outside intervention and we need the help of family, friends, or even professional help. Don’t push away help if you truly need it. We all need help at some point!

What Every Person with Parkinson’s Needs to Know About Air Travel

Plane Travel!

Don’t be alarmed– but be aware, my fellow Parkinson’s disease travelers!

As if we didn’t have enough to worry about along our journey, it was released recently, that the Transportation & Security Administration (TSA) has a program called “Quiet Skies” that is noting behavior, looking for excessive fidgeting, perspiration, and cold stares by passengers. Supposedly, fifty passengers a day are identified.

We are being tracked and monitored both on the ground and in the air. Our habits, reading material, and reactions are noted and logged, if we bring any kind of attention to ourselves. The knowledge that anything out of the ordinary needs investigation is understandable, but when you are faced with a neurological disorder that can alter your walking, uncontrollable movement and body temperature regulation (both hot and cold), tremor, or balance issues- these physiological reactions are possibly red flags that could bring focus on those of us living with an illness.

Maybe, just maybe, through education and identifying ourselves as people with Parkinson’s and educating TSA agents about facial masking, dyskinesia, bradykinesia, as well as the numerous subtleties that can come with Parkinson’s, might be just what the doctor ordered. Instead of making the TSA wonder what we are going through, we need to create a teachable moment that might just lead to real changes.

People suspect and often fear what they don’t know about. Unless you live with Parkinson’s disease daily and are aware of the wide variety of symptoms and unpredictability of this illness, only through education and extra training will those unfamiliar with neurological disorders come to be educated.

Being Malleable Opens Potential Benefit!

Rigidity in thought and body may go hand in hand. Rigidity can be many people’s main complaint when they are first diagnosed with Parkinson’s disease. Keeping active, moving, exercise, and stretching are just a few of the tools to keep in mind when your body starts to stiffen up.

As we age, it gets easier and easier to become so convinced that there is only one way to do something. When we get to this mentality that there is only one correct answer, we may be shorting ourselves of new pathways and seeking new alternatives. The sooner that we accept the way we used to do a certain task may have changed, the sooner we can create a plan to identify and try a new method. Flexibility in body, mind, and attitude are necessary when considering what it is you want to tweak with your illness. Sometimes, it may take a slight increase in medication to improve your on-time and reduce symptoms of the disease. Sometimes, thinking outside the usual structure of traditional medicine can be fruitful.

Had I not incorporated reiki, massage, meditation, qigong, yoga, exercise, and reflexology, all in to my life, I honestly don’t know where I’d be. I can tell you this, at first, I was not a believer. It took a leap of faith and necessity to get there. Had I not gone outside my comfort zone, I would never have benefited from these various therapies

For those who question the true benefits of complementary therapies, I ask this: Don’t you think that these therapies might have some merit if they’ve been around for hundreds to thousands of years? Is skepticism holding you back from trying something new? Is it time? Is it money? What holds you back from exploring new options of helping yourself?

Adding a new practice, therapy, or routine to your health regimen takes some investigation, research, and commitment. Keeping positive and remaining hopeful are beneficial in whatever you choose to try.

Depending upon your choice of therapy, it may be important to confirm with your physician, neurologist, or specialist, just to be safe. I am not a doctor! I am a Parkinson’s patient of over 30 years that can declare benefit and relief from these therapies.

Here are some online live events you should catch this week!

From IStockPhoto

Be sure to attend the first live online Davis Phinney Foundation Victory Summit this Friday 8/10/18 at 10 AM PST or 1:00 PM EST! I have attended several of their summits and found them to be very educational and informative. Use this link to register today: https://www.davisphinneyfoundation.org/live-broadcast-registration/


This Saturday,8/11/18 join the Parkinson Voice Project for an online lecture from Sarah King, PT, DPT who will be discussing “How To Create Your Personalized Parkinson’s Plan of Attack“. Learn about this lecture and more speakers in their ongoing lecture series. The lecture begins at 10:30 AM Central Time or 11:30 AM Eastern Time. Here’s how to register and learn more about the lecture series: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=2141

Summer Reprise – Tips for Staying Positive and Proactive

This was created in May 2014, but I thought it was worthy of another appearance.

Mountain PeaksHere are some Tips for Staying Positive and Proactive:

  • Take care of yourself. The more you know about Parkinson’s, the better. You play the key role in your own health. Seek out therapies/modalities that work for you. Accepting your illness does not mean giving up.

  • Appreciate the good in every day. Focus on what you can do! Do not focus on what you can’t do! Savor and appreciate everything.

  • Stay flexible in all ways. A rigid pole often tends to break in the wind. A flexible pole will bend and give in the wind. Being more flexible will add a new dimension to your life.

  • A person with a good attitude is much easier to be around and is good for our well-being.

  • Being positive is a choice! When we label everything “good” or “bad”, we lose sight that we cannot savor one without the other. You cannot have the sweet without the bitter. This is life!

  • Explore the stressors in your daily life. Find an outlet to help you release your stress.

  • Procrastination, denial, fear, and apathy only delay the opportunity to begin our own self care. Don’t hesitate to ask for help when you need it.

  • If you don’t laugh every day, start! Laughter has all kinds of health benefits. Don’t take yourself too seriously. Don’t stop laughing!

  • Plan ahead for what you can and be aware and engaged. Always have a plan B, C, or more.

  • The best exercise or activity is the one that you like and you are willing to do. If Parkinson’s prohibits us from doing something we love, then we must find a replacement for that activity.

I hope these are helpful to you.

Karl

EverydayHealth.com Recognizes ASoftVoice.com Blog as One of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive!

EVERYDAY HEALTH logo www.everydayhealth.comRecently, EverydayHealth.com recognized ASoftVoice.com, as one of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive.

It is such an honor to be included with so many outstanding websites! Many of the chosen blogs on the list are included on our blog resource list. If you know of a blog related to Parkinson’s that we overlooked, please let us know and we will check it out! Thanks to EverydayHealth.com and to you, our readers! Congratulations to the other bloggers on EverydayHealth’s list and to every blog sharing their important story!

Accept Your Mission! It’s Not Impossible! Focus Your Energy, Wisely!

If you are embarrassed, sad, shamed, or lack self confidence about having Parkinson’s, I am here to tell you that you don’t have the energy or time to devote to such unproductive emotions. Stay strong! You have joined a community of amazing, caring, helpful people who are there to support you and encourage you. Spending time on activities that take you away from being your best will only deplete you more. Choosing to be positive and to be your very best can be a reality and not a mushy platitude!

It is up to you to make the first move. Admitting and succumbing to the realization that you need help is not weakness but new found strength. Helping oneself to learn about how others are surviving and thriving benefits all involved. This generous group of people with Parkinson’s and care partners are ready and willing to share their experiences of what has worked and what needs improving. There are tomes of great advice, educational videos, supportive medical experts, and organizations with helpful support groups and exercise programs! Be aware that your improvement and care all begins with your passion, diligence, and commitment to getting better.

I won’t say that being thrust into the world of Parkinson’s is easy and nor is it your first thought to just accept it and move forward. I had some dark days until I realized that my body, mind, and spirit were in jeopardy. My being is my responsibility. There is plenty of help out there, but you are your greatest resource. Now, build your team!

Parkinson’s is an illness that you do not fight, but work with, work around, and find solutions that work for you. In other words, Parkinson’s takes work! I, like you, am on a constant and continuous hunt for wellness or at the very least, some therapy, drug, exercise, or device to improve my condition. I wish you well!

AsoftVoice.com Recognized as one of the Best Blogs on Parkinson’s Disease for the 4th Year in a Row!

Healthline 2018 Best Blogs Parkinson's Disease

Healthline 2018 Best Blogs Parkinson’s Disease

I am so grateful and honored to announce that for the fourth year in a row Asoftvoice.com has been chosen by Healthline.com as one of the best blogs on Parkinson’s! I am elated to be picked with so many outstanding bloggers and such exceptional websites that I respect so highly! I congratulate all of my friends and fellow bloggers who also received this award!

Thanks to Healthline.com for including AsoftVoice.com as one of their 2018 Best Blogs Parkinson’s Disease and everyone who reads this blog! I hope that I can provide content that you will find to be interesting, educational, and helpful! Thank You!

 

Mother’s Day 2018

On this, the 8th Mother’s Day without her, I lit a candle and enjoyed her favorite flower in her memory! She encouraged my blogging, my writing, and ultimately my books! I am so grateful for her support!

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