Blog Archives

A Time For More Compassion!

Today, I have a slight deviation to my usual positive message for an expression of frustration and a plea that I strongly feel needs to be expressed. Consider this my contribution to advocacy:

Congratulations if you are watching and reading the world news and can remain calm. I for one, am unable to digest the vitriolic, bombastic, childish, unproductive, hateful, remarks coming out of our nation’s capital.

When I was a child in the 1970s and 1980s our greatest fear out of Washington was the threat of nuclear war. The fear generated countless classic Hollywood blockbusters and the story slowly faded in the background, until now. The threat was probably there the whole time, but it did not remain on the front page and now, in addition to the chaos of the Trump White House, the threat of climate change, and the shake-up celebrity marriages, it makes one ponder just what to do?

If you are dealing with Parkinson’s or any disease, this is the last thing that you need on your plate. Healthcare, doesn’t mean much, until you need to access it. Our Congress, Senate, and President are entitled to full lifetime health coverage for little or no cost. It is more than a nice perk. They don’t need to vote on a healthcare plan for themselves, they’re just fine, thank you.

As for the rest of us, who actually, could use affordable healthcare, many of us are left dangling in the wind and waiting for a solution. It isn’t pretty, sexy, or exciting, but it sure is needed. I have never seen our government at such a standstill as it is at this time. A stagnant Congress and a President in turmoil leave the millions of people in need of affordable care under undue duress and the inability to move forward.

I know of many friends and fellow people with Parkinson’s who have to make the decision to cut back on their grocery bill to be able to pay for this month’s medication bill. It shouldn’t have to be that way. Sacrificing from your already reduced food budget to eke out enough for some or all of your medications is a sad and scary trade off.

Therapy caps have created a huge problem in limiting coverage for appointments for those of us who benefit from occupational therapy, physical therapy, speech therapy and rehabilitation. These outpatient services keep many of us out of the expensive doctor’s offices, crowding hospitals, and keeping patients active in their community.

I wish I had an answer. I wish I wasn’t so frustrated. I wish someone would hear our voices!

Little Things Aren’t Always So Little

Living with an illness is a constant reminder that every day is precious and full of meaning. Signs and opportunities present themselves, if you stay aware to recognize these opportunities.

Here’s a recent example about a small gesture that made a big difference in someone’s life, as well as my my own.

A doctor friend in Ohio had asked us to teach him reiki. We don’t normally drive a few hundred miles across the country to teach one person reiki , but this was an experiment that we needed to try.

When first arriving into town, we checked into our hotel and found a place for a late dinner. The restaurant, a college bar and pizza hangout, was lively and rocking. Our waitress was very friendly, hard working,  personable young lady.

When the bill came, and it was time to pay, I felt compelled to reward her for her service and her hard work. I paid the bill at the table and slipped out to the parking lot to get back to our hotel around the corner. Just as we were about to get into our vehicle, we saw our waitress darting out of the restaurant, bolting towards our car. She had a huge smile and was beaming from ear to ear.

Quickly, the young lady, began to tear up as she told us of how her rent money had been stolen from a break in to her car. She said that her rent was due and that the tip that we had left her was going to make a difference. You could see it in her face how appreciative she was. For what I thought was just a kindly gesture and recognition of someone doing a great job, meant so much more to her.

What we perceive as one thing can be very different to someone else. I didn’t set out to make an impact on another, but I did. I received so much more from her story than I could have imagined.

Something that seemed so small at the time touched another and left a impact that I would have never expected. I feel so lucky to have had this experience.

I hope you too will try this experiment in rewarding and acknowledging those people who you encounter either with a kind word, an act, a smile, a gift, or a gesture. It is so important to recognize those around us and show our gratitude.

Book Review: Parkinson Voice Project

Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

My many thanks  to my friends at the Parkinson Voice Project in Richardson, Texas for this generous review of our second book!

Book Review by LOUD Crowd® Member Carol Brandle

TITLE: Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook
for Body, Mind, and Spirit
BY: Angela and Karl Robb

Having a workbook to accompany the best-selling Parkinson’s book, A Soft Voice in a Noisy
World, provides an excellent wellness tool for individuals or group discussion. Questions in the
workbook are closely paired with chapters in the book. Additionally, some questions shine light
on new ideas, such as complementary therapies like Reiki, massage, acupuncture, and
reflexology.

Karl Robb brings the same positive attitude, hope, and strength to this workbook as to his
book, A Soft a Voice in a Noisy World. Exercises which reduce stress and reaffirm strength can be
done as individuals or in communication groups, such as The LOUD Crowd® groups at Parkinson
Voice Project. A caregiver or partner might use the questions to strike up meaningful
conversation with the affected person, whether Parkinson’s is the health concern, or some other
health conditions. Either format will help you balance the connection between mind, body, and
spirit.

It’s apparent that Angela and Robb write from a wealth of experience as they direct
questions to sensitive issues, such as “What are you willing to do to help yourself?” and creating
a timeline to improve communication with a health care provider. Angela was honored in 2015
as a White House Champion of Change in Parkinson’s Disease. She and Karl also author an award winning
blog, http://www.asoftvoice.com


Angela and I have been fans, friends, and Board members of the Parkinson Voice Project for several years. We encourage anyone unfamiliar with this organization to learn about the wonderful work that they do.

Nature Heals!

I have just returned from a working vacation in the mountains of North Carolina. The experience proved to be nothing short of amazing, as I saw an improvement in almost all my symptoms! Strength, stamina, balance, gait, sleep, cognition, and productivity were all improved and recognizably noticeable.

Nature has a healing property. Just to be surrounded by the abundance of flowering, fluttering, and stirring plants and creatures can reunite you with your connection with the planet. In this modern world, we begin to lose that connection with earth and sky, only to focus on flat screens, texts, and our on-screen accounts.

Once leaving the bucolic beauty of the lush green forest and coming back to city life, I find myself wondering if this is my healthiest decision. Returning to the sights and sounds of nature re-invigorated me–I found it to be a struggle to return to civilization, albeit, at this time, a necessity. Don’t forget to garden it, walk in it, swim in it, or just be in it–don’t lose your connection to Nature.

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.

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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

6 Warnings of Parkinson’s and Summer!

Be aware of the sun’s intensity and extreme heat!

  1. Enjoy A Beautiful Sunset!

    Protect everything! If you are taking Sinemet, exposure to the sun may cause you to burn more easily! Wear a hat and sunscreen everything that you don’t want to burn.

  2. Stay hydrated! Staying hydrated is not just good for the body, but your pills may function better as well.

  3. Hot or cold Many PD patients, me included, can easily overheat on very hot days. For some reason, we don’t always self regulate our body temperature at peak performance. Pay close attention to your sweating and thirst.

  4. Watch your salt–Too little salt may cause orthostatic hypotension (dizziness when getting up or lying down) and too much can cause high blood pressure, find a balance and ask your doctor.

  5. Most of us are low on vitamin D! Have your vitamin D level checked. Sun helps with D, but sun ages and burns. Dairy has D but be careful with protein and your meds.

  6. Moderation and body awareness will help keep you sun safe. Be sun smart and careful out there! Talk to your doctor about these issues. I am not a doctor and these are suggestions, not medical advice. Be well!

Comfortable Routines

A comfortable routine  is not always a bad habit.

Cats love it! The only real problem with routines is when you sacrifice an opportunity to maintain the routine. If the cycle that you are in is working for you, then by all means keep it, and don’t let go, but if the routine has gone stale or you see a need for correction, it might be time for a new tack.

Preserving the Smile

Parkinson’s Disease can take away the very basic but vital skills that we treasure and sometimes take for granted. Facial masking, or loss of obvious facial emotion can make identifying a Parkinson’s patient’s state of emotion very hard to read, by observation. Due to muscle tightness and rigidity in the jaw and facial muscles, some patients find it difficult to smile.

Just taking the time on a daily basis and scrunching your face in the mirror, wiggling your tongue back and forth, and squinting your eyes and face can be a great way to keep the face a little more limber. That’s what I do!

A smile is not to be wasted nor forgotten. Use your smile and share it with the world. Sometimes we forget to smile and the power that comes with it. If those facial muscles are a challenge for your smile, do what you can to work to keep those facial muscles as limber as you can and keep that bright smile. A smile is a viral gift that often comes back, when shared with others.

We shouldn’t have to, but Parkinson’s disease may make us have to practice smiling, instead of just doing it naturally.

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.

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