Blog Archives

AsoftVoice.com celebrates a decade of blogging on Parkinson’s disease!

It is official—this blog, www.Asoftvoice.com, is 10 years old!

With over 300 archived posts pertaining to Parkinson’s disease and living well, it has been a labor of love! Here is to the next 10 years and with luck, a continuation. I hope to hear from more of you, so that I might address topics of interest.

I am happy to report that I don’t have a problem with procrastination—in fact, I’m good at it! Call it a talent, call it a mastery, and to think that I have no training! I am a Master Procrastinator! I admit it—I procrastinate more these days, to stay creative and fluid. I like to work odd hours, sometimes. I write when inspiration calls. So, here are some thoughts to share with you that I hope you can use:

  1. Parkinson’s disease is a strange and quirky illness with a host of awkward and annoying symptoms. I don’t make light of the seriousness of this illness, but if you keep too rigid, you will surely snap. As hard as it may be, hold on to smiling and laughing–as best as you can– it is so important to monitor and maintain a sense of humor. Humor and a positive attitude can go a long way, with any illness! Laughter really is a great medicine!

  2. Parkinson’s disease is a wonderful excuse to break convention— you may find that you enjoy living outside the regular everyday box. It may take time. I’ve had over 30 years to adjust, so forgive me if I make it sound easy. Living with Parkinson’s is anything, but easy.

  3. The fact is that structuring your day and schedule to accommodate your on-times as well as your off-times can make your days far less stress-filled and less dramatic.

  4. The label of Parkinson’s disease covers a broad range of symptoms, some apparent and some unseen by public eyes. No two of us is exactly alike and therefore, our symptoms, medications, progression, and helpful therapies may differ.

  5. If Parkinson’s teaches us anything, it is to slow down the rapid pace of life, look around and enjoy it, to eat slower and savor what we are eating. Parkinson’s is an unusual teacher that forces us to slow down whether we choose to or not. See this new pace as an opportunity.

I don’t know what the next 10 years will bring, but I plan to continue to share and expand my voice through this site, maybe a 3rd or 4th book, and maybe a few surprises (good ones) along the way. I hope that you’ll join me for the ride!

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.

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

Giving Shouldn’t Be Painful

This morning I received one of those nuisance solicitations from a charity that I had never heard of and still can’t even remember. The caller was clever enough to use a phony id tag of someone we had previously called earlier in the morning. What a devious ploy!

The first thing she said was nearly the most insulting! “Is this Angela?” To which, I replied “Does this sound like, Angela?” I am a 51-year-old male, who sounds nothing remotely close to that of my lovely wife. Either she wasn’t listening, or didn’t care. Not a good start to getting my confidence!

The lady (loosely used) on the call was what I believe to be a sophisticated robocall. The charity organization claimed to be a breast cancer charity (breast cancer was instrumental in my mother’s death) which is a cause near and dear to me.

The female voice on the other end adamantly requested for me to agree to pledge some random amount. Going from high to lower but never addressing my reservations, I was growing more and more angry with the handling of this call.

I asked the voice, “Just how much the charity took and how much went to breast cancer research?”: Her response was disappointing:

“That’s a good question! Fifteen percent goes to research and eighty-five percent goes to administrative costs. Can I put you down for twenty-five dollars?” I couldn’t believe that she thought that I could have been so gullible to say anything near of affirmative! Thus, ended the call!

This is the time of year that charities bombard us with end of year requests. Be empowered, be informed, and don’t be shy to ask what that charity is doing with your hard-earned money. Unless you have a long-established relationship and are familiar with the charity or charities of choice, don’t be afraid to ask the hard questions. You have every right to ask where your money goes and how it is to be used. You also have a right to answers that satisfy your curiosity.

Here are some suggested questions for the charity fundraiser:

  • Are you a registered 501c3 not-for profit?

  • Are you on www.charitynavigator.org?

  • How much of my donation goes toward the cause and not administrative costs?

  • Do you work for the charity or are you a paid solicitor? If so, you might tell them, “I will save the charity money and make my donation directly—but thanks for reminding me”.

  • Do not feel pressured that this call is your one and only opportunity to contribute to the cause. If a charity is pressing you for a donation, take another look at the charity and do some background work.

It is easy to be lured into a convincing charity charade that sounds honest and true to purpose. If you want to know what kind of research was funded by the charity, then ask them. They should be proud of their work, not secretive! If you need time for research and to get answers, there is no reason why you can’t ask them to call you back later.

You are in the driver’s seat to your charitable giving. Don’t feel pushed and pressured by paid solicitors! You should feel confident and enthusiastic about the charities to which you give. The best way to be confident about your charitable giving is to know who, what, where, and how your donation will be used. Don’t be afraid to make a difference, just do your homework to make sure you are educated and satisfied with where your donation is going.

Healing Becomes a Prime Time Show

Healing Becomes a Prime Time Show

The world is shifting faster and even more progressively to complementary medicine, than I would ever have imagined. While late-night television channel surfing, I found a program that appears to be both informative and comforting. This new show is on a channel that I rarely watch. Home to numerous reality and family related dramas, TLC is not a station that usually offers programming that thrills me. I will admit that this show really interests me.

I came across a new show called, The Healer. Let me say that as a Parkinson’s patient and a reiki master, I use the term “healer” very rarely and very carefully. I had to see what TLC was doing with someone who had the ego and gift of restoring one to health. To use the word “healer” takes on a serious responsibility.

Charlie, an Australian entrepreneur, has been using his “gift” for several years and seems to deliver results with varying success. Charlie admits that results may depend upon the malady and the severity of it. I respect that he takes his gift so seriously. He freely admits that some illnesses may not respond well to his energy work, while some may react better. I also like that he shares his gift at no charge.

Doctors on the show are amazed, without explanation, yet appear to be willing to make the mind-shift that energy work may have merit. They are witnesses of the inexplicable. The doctors don’t deny that after Charlie’s treatment, something substantial has just occurred for their patient. Skepticism is understandable from the medical community, but when they see results from complimentary therapies, they should be willing to acknowledge them. One of the biggest dilemmas facing energy workers and the medical community is that if they both worked together, the patient may very well see surprising new results and at minimal cost.

I have seen slightly over one episode so far. I am an energy worker. I find the delving and unveiling of energy work on prime time television as a huge leap in the right direction! Shows like this demystify and shed light on the benefits of touch. This television program helps to show that hands on work has much to offer. In the United States, patients are less likely to pursue energy workers. In my opinion, the reason that many doctor(s) discount or don’t understand the potential benefit of working with energy practitioners is that little to no research has been funded.

Not until seven years into my diagnosis of Parkinson’s disease, at the age of 32 was I introduced to Reiki. From day one, I went from skeptic to believer, immediately. After experiencing what I had so easily discounted, it turned out to be something life-changing. Reiki hasn’t healed me to where I am void of symptoms.  I do know, not scientifically, that Reiki has made my life considerably better, increased my quality of life, and slowed my Parkinson’s progression over these last 20 years!

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.

%d bloggers like this: