Blog Archives

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.

 

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What does Thanksgiving mean to you?

For me, the holiday resonates with special memories of the whole family watching parades, football, and eating my late mother’s exceptional cooking. Those memories are treasures that line the walls of my Thanksgiving box for the rest of eternity. Those days are long past, but I am still fortunate to make special new memories with dear friends who mean so much to me. Times change, life moves quickly forward, and I am forced to accept change.

I think a keystone of this holiday is about one thing only, gratitude. In the hustle and bustle of shopping, cooking, pre-Christmas preparation, and Black Friday sales, the meaning of Thanksgiving gets blurred.

This year, I have lost more dear friends, neighbors, and close Parkinson’s disease colleagues than I can count on my fingers. Loss of loved ones, both friends and family are so bittersweet as I rejoice in having been part of their lives, yet mourn that those days have ended.

As the year quickly ends, I am ever so grateful for my wife and best friend, Angela, my wacky and hilarious chocolate lab, Lily, my relatives all across the United States, my dear Reiki and Parkinson’s families, and you the reader/subscriber who takes time out of your busy day to read my latest blog post. I am grateful!

Thank You!

Happy Thanksgiving!

10 Tips to Improving Your Life with Parkinson’s Disease and Other Health Conditions

10 Tips to Improving Your Life with Parkinson’s Disease and Other Health Conditions

Parkinson’s disease is an illness that may require varying strategies. It may take new and different tactics to work with the ever-evolving changes that may pop up over time. Here are a few pieces of advice to consider as they may help you as they have helped me:

10) Intake Matters – Consider everything that you put into your body. Stay hydrated! Eat as cleanly as you can (local organic fresh vegetables, balanced diet, pay attention to your nutrition) and going easy on processed foods. Try reducing and even eliminating soft drinks. Avoid artificial sweeteners! Diet and Parkinson’s disease seem to go together; which makes complete sense, as reams of research seem to point to the gut as a possible culprit for the illness. Since going vegetarian, by vastly reducing my soft drink intake, increasing my water consumption, and reducing my reliance on processed foods, I have noticed digestion and medication absorption both, seem to have improved.

9) Keeping Social and Well – Informed – Creating and maintaining a social life keeps you involved, knowledgeable, engaged, and active. A social network and/or a support group is an opportunity to connect with other like-minded individuals who are dealing with your condition. Sharing information together provides you with a resource for experience and wisdom from those who are living with illness as well as those who are caring for loved ones. Having a sounding-board of experienced people can be very helpful when trying to learn about medications, navigate local resources, find therapies, and share stories about your health care providers. Seek support!

8) Lowering Your Stress Level and Keeping Anxiety Down – There are techniques and complementary therapies like massage, yoga, meditation, Reiki, and Tai chi, which can reduce stress anxiety, and calm the mind; these are but a few of the many therapies that you might consider trying. Several of these therapies can help teach breathing techniques and ways to lower anxiety. Finding that balance of your mind, body, and spirit can have a significant impact on your health.

7) Special Doctor – If you have Parkinson’s disease or another kind of movement disorder, find a neurologist who is specially trained as a Movement Disorder Specialist. They have extra training and an understanding in neurological disorders.

6) Keeping Positive – A positive attitude is contagious. Making the choice of staying positive and identifying the good instead of the negative is important to create a healthy and conducive environment. Remember that you have a choice!

5) Gratitude – Hold on to your joy for life and the gratitude for all that is in your life! Appreciate what may seem like small things but really are not, is a good start. Medicine, doctors, clean water and air, a good meal, friends, family, and just being alive are all to be appreciated. Add the awe of a sunrise, a sunset, a good laugh, great conversation, and helping someone else, are all acts to be cherished.

4) Doing What You Can – Do as much as you can, while you can, and maximize your good days! Take advantage of everyday and make the most of them!

3) Be Heard – Get involved in your community through advocacy groups, local organizations, and share your voice about your journey with illness. Educate those around you about your illness and encourage friends and family to learn with you on how to improve the Parkinson’s community.

2) Do Something – If you are in denial, apathetic, or depressed, it may be very difficult to motivate yourself to do what you need to do. It may be helpful to seek help from a counselor or someone who understands depression. This may take small victories and small steps. It may take learning about the disease in small chunks. Know this, that everyone’s journey is different and that you can’t gauge one patient by another. The more proactive and motivated you are, the more prepared you will be. Being flexible and staying open to new opportunities can be very helpful.

1) You are Not Powerless – Realize that you are in the driver’s seat to your healthcare! You must be your own best advocate and make sure that you are doing your very best. Be proactive with conventional medicine, skeptical but open to other non-invasive therapies, and a willingness for change. A little hope and faith can go a long way!

I really do believe that we have the power to help ourselves. We have the power locked inside ourselves, we just need the right key to unlock it. I think it is up to us to find that key.

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!

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

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