Blog Archives

Guest Blogging for PatientsLikeMe #MoreThan Campaign

I am so excited to be part of the @PatientsLikeMe #MoreThan campaign! I recently wrote a blog posting for the PatientsLikeMe blog, which you can read here. I encourage you to tell the world about your #MoreThan story via your social outlets. Sharing your story can help inspire, motivate, and educate. Showing the world that we are #MoreThan our illness is a powerful reminder that those of us dealing with illnesses have families, hopes, dreams, and goals just like everyone without this additional challenge. There is something very powerful about one’s personal story along with a photo. Making your voice heard is crucial for awareness, unity, and community! Thanks to @PatientsLikeMe for this opportunity.

#MoreThan Parkinson's PatientsLikeMe - Karl Robb

#MoreThan Parkinson’s PatientsLikeMe

Appreciate Time!

Where has the month of May gone?

It seems like I just took this picture in Alaska, but that was 2 years ago. Time creeps up on us, silently and subtlety. The month of May is rounding the corner and heading for the finish. As one who loves this time of year, I let time get away from me. In my focus and devotion to my projects and writing, I lost my sense of time. While my time has been spent productively, somehow, I missed the progression of time, as it happened. As weird as it sounds, it sounds even stranger as I try to explain it. Maybe, I need to go back to living by my calendar!

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.

News May Have An Impact!

Hyperbole on television, the evening news, politics, the Internet, and especially late night shows, is more common than ever. Our exposure to the dramatic and the end all be all is becoming a standard occurrence. Every day we wake to a new dilemma that involves “the greatest”. “the best”, “the most tremendous”. It is a contagion that gets ratings, sells newspapers, and is the marketer’s tool of choice. Watch any infomercial pitch and you are sure to hear hyperbole.

Hyperbole is ingrained in today’s messages. Usually, the message is louder and more shocking. Drama ensues.

A few years ago, I tried an experiment to catalog the many messages that I received from viewing 2 hours of one of the cable news channels. What follows are most of the crises discussed by the news team. I’m sure that I must have missed a couple. You’ll notice that most of these topics are not of the positive nature. I think that this proves that the daily messages that we are exposed to may very well have a direct connection to our thoughts and our feelings.

Here they are:

Train bombing, Missing Dolphins that were raised in captivity, Heavy rain, City Workers Steal Donated Items for Hurricane victims, Earthquakes, Sexual Abuse of a sports star, NASCAR Fight, New Orleans Health Care Crisis, Rising Oil Prices, Missing college student, Metro fire, Hurricane evacuation, Drought, Murder, Kidnapping, Corruption in government, Sex offenders, Train derailment, oil prices, poverty, inflation, drowning, mold and spore death, robbery, plane crash, home destroyed, stock loss, computer hacking, balcony collapse, contaminated water, abandoned animals, Cancer, lack of potable water, terrorism, taxes, forest fire, thunderstorms, Space shuttle disaster, and nuclear weapons.

If this is what you hear and see in 2 hours of reporting, imagine all the exposure your brain and entire emotional system are forced to process.  If your system is compromised the negativity of these stories could have even more impact.

It might be an experiment worth attempting. Try shielding yourself from the barrage of news that is unavoidable and mostly unchangeable, to see if all aspects of your illness shows improvement. Consider a respite of time for yourself and those close to you. Maybe by doing something to counteract just one of these issues, a positive change might come.

Nothing is better than hyperbole-bad joke alert.

Positive Daily Living Sample Chapter from Dealing and Healing

The following PDF is an excerpt from our new book, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit.

We are excited to provide this collection of exercises and tools that we believe can benefit most anyone! Whether you are an individual, a support group, a social group, or a small informal group, we encourage you to try these exercises and to share it with those who you feel may benefit from it.

If you like this chapter and would like to purchase the workbook, it’s available for purchase online at Amazon.com and BarnesandNoble.com.

Dealing and Healing Chapter 29 Positive Daily Living

Chapter 29 Positive Daily Living

Parkinson’s Essay Turns 200!

Tomorrow,  James Parkinson‘s essay will be 200 years old. Since his discovery, modern  medicine has made strides with L-Dopa and Carbi-dopa breakthroughs that have become the long-standing gold standard of regimens. Not to diminish the importance of the Levadopa breakthrough, but that was over a half a century ago.
New drugs and procedures are slowly trickling out, but no one drug that I know of has impacted Parkinson’s disease as that of L-Dopa. To this very day,  since my 1991 diagnosis, I have found benefit from this most amazing life-changing drug. I am very lucky to report that my dosage, even after all this time, is a lowly 3 pills (25/100) a day. I aim to keep my pill consumption to the utmost minimum, but only time will tell.

I am hopeful but impatient as I plead with any pharmaceutical company, researcher, doctor, or anyone connected with creating new innovations to the neurological world that a huge need is there, right now, and an escalating problem that will impact so many. I would offer detailed numbers, but at this time, as we have no hard numbers, for lack of a registry devoted to Parkinson’s patients, the numbers just aren’t gathered, yet.

On World Parkinson’s Day (4/11/17), like millions around the world, I will be participating in #UniteForParkinsons. Please join us to spread awareness via social media to the world about Parkinson’s disease.  Visit https://www.worldparkinsonsday.com/#world-parkinsons-day for more information!

Respite

RespiteWe all need to pay close attention to our health. It is so easy to be encumbered and engrossed in our work and lose sight of ourselves. We owe it to ourselves, for the preservation of our clarity of thought and refreshing of the body to vacate from the office. Taking time for yourself isn’t a luxury–it’s a necessity! Just taking a few minutes more, every day, can make a difference in your mood, your creativity, and overall well-being.

Photo Creation — Orb 3D

I was experimenting with my phone camera and created this–I hope that you enjoy it! I call it Orb 3D.

If you think it’s cool, please share it. I am trying to keep active and creative and believe it is vital to staying well. Explore your creativity!

Taken by Karl Robb

Taken by Karl Robb

It’s not all in your head–is it?

It might all be connected.In the near 200 years, since the discovery of Parkinson’s Disease (PD), the theories of how, where, when, and why the illness develops varies over time. Science is proving and re-enforcing the belief that everything is connected. When I was officially diagnosed in 1991 with PD, there were only a few doctors who pondered the connection between the gut and the brain. Now, there seems to be a much larger contingent who agree that our gut plays a major factor in our brain function.

The body has a mysterious way of masking itself or maybe it is just due to the complexity of the brain. For several years, my right shoulder rotator cuff hurt and I was unable to find long-lasting relief or an answer to where the pain was coming from. I had seen doctors, taken X-rays, seen massage therapists, and done physical therapy, and all proved to do little, over time. I was sure the pain resided in the shoulder. I was wrong.

I had to go all the way across the United States to find relief. A knowledgeable and very intuitive massage therapist who really paid attention to my arm discovered a very sore spot close to the mid point of my upper arm. Once she released the extreme pain that had been stored in that one spot, the pain in my shoulder dispersed. I would call the results near miraculous. She found the cause of my pain where no one had even thought of looking.

I think that this is sound evidence that there is just so much about the systems of the human body that we just can’t understand, just yet. Over time, new discoveries and breakthroughs may very well reveal astounding relationships between our systems or even unveil how our bodies process certain chemicals and alter our central nervous system. Until the day comes that modern science is capable of unveiling an all encompassing cure, it is our responsibility for exploring our own systemic connections, the roles that stress and anxiety play in our lives, our diets, our sleep patterns, and even how we think, feel, and react.

Our mind, body, and spirit depend upon one another. Maintaining that delicate balance is the key to our health. Finding the missing pieces that might lead us to fulfill the balance may require exploration and investigation outside our comfort zone and even that of our complete understanding. What I thought originated in my shoulder was actually being manipulated by a sore spot in my upper arm, a spot about a half a foot away. Looking closely at ourselves, with a fresh lens can reveal a great deal.

Are you stuck?

In a rut?Is your ship at sea but can’t make it to port,
Do you play the game but your putt is just too short,
Are you stuck in a vortex that you can’t escape,
Are you stuck in minutia and wrapped in red tape,
It’s time to break free and break the trend,
Begin a new pattern and create a new message to send,
Take a fresh tact, chart a new path and go round the bend.

Change begins with one small step. That small step can feel like a huge leap, but sometimes to move ahead we must be willing to break out of our comfort zone.

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