Blog Archives

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.

You’ve Got To Be A Kid, Sometimes! Let’s Go To the Movies!

It isn’t often that I write a movie review.

Okay! In fact, I NEVER write movie reviews. I’m feeling nostalgic and re-connected with the past from a long-awaited 14 years. After 14 years, the sequel to The Incredibles is here! I saw it on Thursday, and it did not disappoint! I wish it hadn’t been over a decade and a half, but it was a blast!

If you loved the original, The Incredibles2 picks up right where the first left us—and that’s all you need to know about the sequel. Just know that the movie is full of action and humor. Enough said!

The geniuses at Pixar did not skimp on detail, sound, or music. This sequel is a fun house, chock full of gems including mid-century motifs of Knoll, Noguchi, Saarinen, Herman Miller furniture, clothing, cars, and architecture.

We had played hooky to go make time to see this movie, something we don’t do very often. The message here, as hidden as it may seem, you might want to:

1. Plan future events to look forward to
2. Treat yourself
3. Savor the little things
4. Avoid always being so serious
5. Laugh as much as you can
6. Work hard and play hard
7. Remember, it’s fun to act like a kid—when the time is right

Let your inner kid out, every so often and take it all in!

Words Matter In Medicine–Compassion and Kindness Are 2 To Focus On!

When I was first diagnosed, the neurologist in 1991, coldly and in a matter of fact tone informed me that I had “a reptilian stare”! I don’t know if this is an official piece of medical terminology or the vernacular, but I most assuredly must express my thoughts of using such a crude comparison.

Doctors can be outstanding resources for data gathering and possible new treatments, but often fizzle when it comes to bedside manner, hand-holding, support, thinking outside the box, or just sharing compassion. I know that there are some of them out there and I hope that your doctor or doctors are of the compassionate qualification—but if he or she is not, what do you do?

Here lies the $64,000 question (old reference-sorry), of asking what it is that you expect to receive from your physician and how it is delivered?

Is it so difficult to reach your doctor that you can’t get a 24-hour response? Any response?

Navigating the labyrinth-like phone system of most medical providers is a test of resilience and sheer willpower. I think that it might just be an exercise to see just how committed their patients are to the practice. I would compare calling doctors’ offices a close comparison to my childhood game playing of that ever so frustrating, never-ending game of Chutes and Ladders—almost as annoying as pick up sticks. Ahhhhhhhhh, the good old days.

Some doctors’ offices think that they have joined the 21st century by installing these “portals” that are misnamed, closer to a black hole, are often unread on a timely basis, and overly buggy or confusing to maneuver around—other than my issues, they are great!

I don’t have any insight into defying the complexities of the phone systems or portal projections, but you might express your frustrations to your doctor and any staff who will listen. Be sure and share the good stuff with your doctor’s office as well, when this might happen.

Some Parkinson’s events and sites to make you aware of this #ParkinsonsAwarenessMonth 2018

This, as is every April, is Parkinson’s Disease Awareness Month—it is a time to learn about an illness that touches millions of lives across the globe. Help spread the word to anyone you know who may have a need for assistance in getting more of an education on the complexities of Parkinson’s disease.

This #ParkinsonsAwarenessMonth there are so many events going on online and locally.  Here are a few of the many Parkinson’s disease related events that I want to point out –there are far too many to mention (check your local community for special events close to you), along with some online resources that I encourage you to visit.

April is Parkinson's Awareness Month

April is Parkinson’s Awareness Month

April 14, 2018 12pm -5pm
Pints for Parkinson’s – Hosted by Rock Steady NOVA
Tysons Biergarten – Tyson’s Corner, VA
Come out and meet others in the Parkinson’s community along with getting information about Parkinson’s resources in the area.  A portion of the proceeds will go to Parkinson’s non-profit charities.

April 14, 2018- 10am CT
Parkinson Voice Project – Parkinson’s Awareness Month Celebration

Streamed live this Saturday 4/14 at 10:00am (CT) home page and Facebook page
Speaker: Stanley Fahn, MD – Founder of the World Parkinson Coalition
Special performance by: The Intentional Singers

April 16, 2018 11am-1pm
Cafe Alexandria – Parkinson Social Network
The Parkinson Social Network launches their Cafe in Alexandria, Virginia!
Visit https://parkinsonsocialnetwork.org/ for more details and directions.

April 28, 2018
Parkinson’s Unity Walk – Central Park, New York City
24th annual gathering in Central Park to bring awareness to Parkinson’s Disease.

Online Resources 

At ParkinsonsDisease.net, there are 17 Parkinson’s Disease community advocates who share their voices from all parts of the Parkinson’s Disease community. To find the community voice that resonates for you, use this link:  https://parkinsonsdisease.net/community-advocates/

The following are articles that were written for 2 websites that I hope that if you don’t know about that you might now take some time to visit. They are good sources for those dealing with Parkinson’s disease! Education, knowledge, and awareness is so important.

Karl Robb Found a New Purpose Through Parkinson’s – Davis Phinney Foundation

Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship – PatientsLikeMe

Building a Plan for Your Parkinson’s Disease and Your Health

Without some sort of plan or framework, it is very easy to get lost along the way. Whether you have Parkinson’s disease or not, just having goals may not be enough, as unexpected obstacles can arise at the most inconvenient of times. There is so much in our lives that we can’t expect, but must just accept and move on, as best we can.  Our perspective and flexibility can impact how we deal with adversity.

The following few tips are some thoughts and suggestions that you may want to consider. I hope that these tips might trigger some revelations for you.

  1. Consider building a series of plans from your personal medical team, your support network, your health team (trainer, physical therapist, massage therapist, speech pathologist, etc.). Some of these networks may overlap and vary as your providers may change over time.

  2. Keeping current on developments and timely releases about your illness is not only empowering but beneficial to both you and those who you choose to enlighten.

  3. If you have early onset Parkinson’s disease, I strongly suggest for you to consider finding a Neurologist who is a Movement Disorder Specialist, as they have special training dedicated to this illness.

  4. Don’t compare or contrast your Parkinson’s to anyone else’s. We each have our own flavor of Parkinson’s and we each have our own unique journey.

  5. Timing our medications is a crucial component to making the most of our day. Maintaining and strictly adhering to a timely regimen where your medications can work at their best, takes experimentation and some trial and error.

  6. Try not thinking of illness of any kind as a war, a battle, or a win or loss. Consider illness as an obstacle or an obstruction that must be worked around. No one wins a war. War is dark and violent. Maybe, a new perspective towards illness can take some of the anxiety out of it.

  7. Explore the numerous therapies outside of western medicine to see if you can find one that offers benefit or relief. Get good referrals from friends and family.

  8. Keep an open mind to relinquishing some of the responsibility for the good of lowering your stress level and improving your mental health.

  9. Do what you can, while you can! Whether you are healthy or have illness in your life, consider that our control is limited.

  10. While there is definitive change in our lives and the options may vary or seem more limited, we must recognize that we have more strength and control than we realize.

Nature on Netflix To Wake To, Sleep To, and Enjoy

Bring a bit of peace and beauty into your home! If you are a nature lover and need a calming force that mesmerizes, might I suggest you turn on the captivating vistas of NatureVision TV now on Netflix. Season 3 unveils about 10 hours and 10 episodes of natural world diversity from ocean to jungle.
Whether you meditate with the video and soothing music softly playing in the background or choose to mute the sound just to appreciate the awe of the bounty of creatures and places, this video collection would be great for parties and get togethers. Try using this marvelous collection just as TV art, instead of your TV just being a blank canvas.
If you are a Netflix subscriber and want something unique and attractive to play throughout the day, like moving art, or just want peaceful television to wake and go to bed to, consider this wonderful collection of our planet’s gifts.
I will report more, soon, on other Netflix finds, both nature-related, and not, very soon.

The Magic in Magic!

The Magic isn’t gone, but it is fading fast. The art of magic will never die, but it may become blurred, as new technology replaces the beauty and purity of performance magic. Live magic is just that—it’s magical. When performed correctly and the magician has done his job, the participant feels that the impossible is, possible. Some magicians embarrass or make their audience feel stupidly duped. The magician is meant to impress but not to break the bond between audience and performer. Magic is for everyone: young or old, there is a place to appreciate the grace and fluidity of sleight-of-hand. One should appreciate the trickery of the eyes and misdirection. Cleverness is worth recognition!

The sad reality is that the neighborhood magic store has rapidly gone away for good, only to be replaced by the video game. This dying art has a long history, reaching back to ancient Egypt and possibly even longer. To lose the joy that this art has sprung on so many, and for so long truly is a tragedy, indeed.

I hope that as generations and technology continue to evolve, that the creative minds of those drawn to magic can continue to update and improve upon the wonders of magic. Magic can be reinvented and re-introduced to new audiences in novel ways as materials and new innovations appear.

Keep the Magic Alive!

I have written about the benefit of video games and Parkinson’s disease, but had a deficit of articles on the benefits of performing and practicing magic. I think that aside of the many years of enjoyment of entertaining myself and an occasional audience, magic has given me numerous gifts that I will quantify:

-Magic makes you think in order and organized linear steps.

-Magic forces the performer to communicate, socialize, and be more outgoing.

-Magic helps improve eye-hand coordination and joint flexibility.

-Magic is universal. Magic is entertaining. Magic is sheer fun.

-Magic doesn’t feel like therapy, but maybe it is!

Walt Disney is quoted to have said, “It is fun to do the impossible!” Magic is about making the impossible, possible, even if it’s just for a moment.

 

Follow my blog with Bloglovin

%d bloggers like this: