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

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!

Remembering 2016!

2017! The Parkinson’s Disease (PD) Community lost 2 of its best known iconic figures in 2016. The most recognizable figure on the planet, the boxing legend and humanitarian, Mohamed Ali and Janet Reno, the first  US female Attorney General. Thanks to both of them for their awareness and advocacy in spreading the word on PD and the importance of educating the public, our government, and the medical world. They were very public faces who helped to express the needs of this community.

This year I have been to far too many funerals of dear friends who have succumbed to the symptoms of PD. It is a tragic reality– one, that I dread sharing with you.

It is my hope for 2017, that we see more cooperation from all parties involved in drug manufacturing, drug regulation, and drug research to lead to some understanding of just how our brains work. Someone, somewhere, sometime in the not so distant future is going to recognize a common element or link that may very well break open the mystery of Parkinson’s disease. Until that very special day, when the brain reveals itself, it is our duty to ourselves and our loved ones, to do all that we can for ourselves and our conditions.

I wish all of you, my friends and readers, a very healthy and happy New Year!

Happy Holidaze!

 This time of year it’s hard to be right, some sing carols or Silent Night.

There is but one phrase to cover your back, whether you’re Jewish or Christian, it’ll cover the slack.

Politically safe and correct is this phrase, wishing you well by saying Happy Holidays!

Thanks to all of you for reading my writing. I’d love to hear from you, if you have comments or suggestions for future posts.

Back soon,

                                            Karl

Motivation

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.

Out of Control

Out Of ControlParkinson’s Disease agonist medications (Requip and Mirapex) have been shown to cause compulsive behavior for some users. Some users have been shown to be prone to gambling addiction, sex addiction, shopping addiction, food addiction, and gaming addiction may occur. Compulsion may even entice users to go beyond legal limits to feed their desire or lose sense of time.

If you find yourself facing any kind of compulsive behavior that may be taking you away from friends and family, or is disrupting your life, tell your neurologist and someone close to you about breaking the cycle. Communication is so vital to your well-being. Carrying secrets only fuels the tension and stress on the mind and body. Letting go and making a change (with your neurologist’s help) might just be the right move forward.

Winter Can Be Cruel

Cold WinterAs a child, I used to love winter. I would sled and ski and didn’t give the bitter cold a second thought. Now, I am less oblivious and less tolerant of the cold. My body functions and just moves more freely in warmer climates. Cold seems to cause greater constriction of the joints and even the muscles.

Winter doesn’t just bring on change of the physical body but with light changes and shorter days, the changes may impact your mood. Keep a close eye on your daily attitude and if you experience thoughts or feelings that you need to express (sadness, possible depression, or anger) consider getting help and stay on top of it, before it manifests into something you can’t control.

11 Wishes for Doctors’ Offices!

Dream

Welcome to my wishlist of what could be, in a future world. Come dream with me:

11. I wish doctors had the same epiphany as Jerry Maguire: Fewer clients/patients and more personalized care.

10. I wish that every doctor in the practice sat in the lobby for a minimum of 2 hours to experience the uncomfortable furniture, the noise of the waiting room, and the need for a more soothing environment.

9. I wish that doctors would call their own switchboards to hear how difficult it is to try and navigate the bevy of options to choose from, wait in the cue for 25 minutes, and then get dropped, forcing you to either give up or start all over again.

8. I wish doctors evaluated the whole experience from phone call to waiting room to appointment from the patients’ viewpoint and took that into consideration.

7. I wish it weren’t so impossible to reach a doctor, when needed.

6. I wish doctors and staff listened better than they do.

5. I wish doctors’’ offices were more warm, inviting, bright, and welcoming.

4. I wish there were a separate waiting room for anyone with a contagion.

3. I wish doctors at least provided coffee or water to patients.

2. I wish doctors actually called their patients to check on them.

1. I wish telemedicine becomes an option for everyone, so that we can save time, money, stress, gas, gridlock, and frustration!

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