Blog Archives

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

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.

5 Tips Parkinson’s Patients Should Know

Nutrition matters

Summer color and flavor

Last week, I had the opportunity to speak to a wonderful audience with Parkinson’s and their care partners, in eastern Virginia. It was a marvelous exchange of information and emotions. Parkinson’s disease comes with so many unwritten rules. Trying to find all that you need to know about this illness, all in one place, may be frustrating to collect. There is so much to remember and so much that you might forget. Staying on top of Parkinson’s disease, symptoms, medications, and health maintenance, is a full-time job!

The following are 5 pieces of knowledge that you will want to remember:

  1. Is your neurologist a movement disorder specialist? If you have Parkinson’s disease and your neurologist isn’t a movement disorder specialist, you may want to see if there is one in your area. Movement Disorder Specialists complete extended training to focus on neurological disorders like Parkinson’s disease.

  2. If you are taking antibiotics, your medication’s effectiveness may be hindered dramatically. I can speak from experience that after taking antibiotics for my tooth infection, I saw a huge decline in the efficacy of my daily regimen of Parkinson’s medications.

  3. Don’t forget that if you are on Sinemet and you are protein-sensitive (protein in your diet may interact with your Levodopa), protein may decrease the full benefit of your dose. You may want try taking your protein later in the day or evening. Timing your medications for optimal benefit is part science, part art, and part luck.

  4. When I am able to lower my stress level, I have found that medications work better, I feel calmer and more peaceful, and see less of my symptoms.

  5. Eat smart and healthy! Talk to your doctor about how to improve your gut health.

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