Category Archives: Parkinson’s Disease

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.

 

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Remember the Day!

The view was expansive. The calm of the site was not what I expected. I was torn whether to break the sanctity of the place and document my visit with a photograph. There is peace at this place of horrific loss of life. This place, Pearl Harbor, is a time capsule and monument to tragedy, heroism, and bravery.

The serenity of the harbor and the still glass-topped water are so deceptive as they hide the brutality that took place here.

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!

Monday Photo-Sharing A Beautiful Day!

This was a wonderful walk full of Fall color and raining leaves. The wind was lightly gusting with a slight hint of the chill of coming Winter.

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 Soft Voice In A Noisy World Book makes Healthline.com’s List of Books That Shine A Light on Parkinsons!

A Soft Voice in a Noisy WorldI was so surprised yesterday, when I came across this article from Healthline.com. I just discovered it, for the first time! They compiled a list of 11 Books That Shine A Light on Parkinsons. I am so honored to be on a list with such an amazing group of accomplished experts. This is a wonderful short list of really great books. Thank you, so much for adding A Soft Voice in a Noisy World to your list!

Enjoy #SingOut2017 Concert via Live Stream tomorrow 9/9 2pm CDT 

Watch the world’s largest Parkinson choir give a concert tomorrow, Saturday 9/9 at 2pm CDT. You can watch the performance either in person at Richardson High School

1250 W. Belt Line Road, Richardson, Texas 75080

-Complimentary Valet Parking

-Reception to Follow Performance

or watch the LIVE stream of the concert at the Parkinson Voice Project Facebook page.  For more information you can also visit: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1834

It’s so inspirational and moving to witness over 100 unified parkinson voices as one loud harmony! You need to hear it and share the triumph of these singers as they raise their voice in song. I encourage you to listen and experience this magical presentation.

Just so you know, I am a supporter and board member of the Parkinson Voice Project and have been for over ten years.

Dyskinesia Isn’t A Dance and It Really Isn’t Funny!

Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”

Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.

BellPeople who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.

Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.

I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.

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