Blog Archives

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!

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.

Five or More… with Robin Elliott, Executive Director & CEO of PDF

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

I am so pleased to have Robin Elliott, the Executive Director and CEO of the Parkinson’s Disease Foundation answering my questions on my blog today. This is right before the World Parkinson Congress  in Portland, Oregon, where thousands will congregate to discuss, share, convene, and educate one another on the latest research in this illness.

Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not. Thank you for participating.

Required questions:

 

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?

Mexican

What do you like on your pizza?

Sausage

Of the four seasons, which is your favorite time of the year?

Spring

How many World Parkinson Congress events have you attended?

Four (including this one in 2016)

What are you looking forward to most in Portland, site of the WPC 2016?

Riding a bus tour (if time allows) of the one major city in America that I have never visited

Optional:

 

Tell us something about yourself that we might not know about you that you would like to share.

I love to play the piano — preferably in private — and the church organ

Where would you like to go, that you have never been before?

Australia and New Zealand

What is the Parkinson’s Disease Foundation (PDF) working on that you would like to tell us?

PDF ‘s new program of research and education on the special problems that are confronted by women who have Parkinson’s Disease

Trying to understand stress as it relates to Parkinson’s disease.

The role stress plays!If you are a frequent reader of this blog or have read my book, 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

Stop Bickering and Do Something!

DC

DC

When you live in or very near our nation’s Capital, Washington, DC, American national news becomes your local news. The constant bombardment of fighting and badmouthing gets overwhelming. How do two parties, both made up of flesh and blood, elected to oversee, govern, and protect millions of fellow humans also made up of flesh and blood who are in a position to help so many and capable of making life better for others, so dormant and implacable? Time is of the essence.
Since 1995, almost every year since, I have consistently pleaded with my representatives about increasing the funding for more Parkinson’s disease research for the National Institutes for Health (NIH), implementing telemedicine, expanding better and faster drugs and devices, and made a loud cry for the importance of creating a national data collection system for neurological diseases. There were moments of fleeting successes, scattered over the years, but our current Congress shows little signs of budging, even on issues that could save immediate lives. This is about real people in need.

If the current estimate of 60,000 people are diagnosed with PD every year is nearly accurate, it is probable that many patients are either misdiagnosed or not at all. It took me 6 years and 9 doctors to get my diagnosis. I know many others who faced the same journey to a diagnosis.
No one should be forced to be faced with the decision to either afford groceries or their medications. No one should be homeless with Parkinson’s disease. Something is terribly wrong when it has come to this.

Whether one has an illness or not, for the betterment of the country as a whole and all those seeking progress, compromise must be acted, immediately.

Make Art–Help Out ForgingResilience.org

Checkout the artistic innovators at http://www.forgingresilience.org and assist them in creating art for the 4th World Parkinson Congress in Portland, Oregon this September 20-23, 2016.

Provide them with a photo and/or a quote for their art installation. A tree of resilience with thousands of leaves with each leaf representing a quote or photo. It will be on view. Share your story and be represented on the tree (see photo on their site) by providing your information by Friday, April 22. If you or someone you know is touched by Parkinson’s disease, please let them know about this project.

Visit their website for details about how you can be part of this event – http://www.forgingresilience.org

Join Us April 19 at 11AM EDT for our talk with eCareDiary.com!

Join me and my wife and carepartner, Angela, for a Q & A as we talk about our views on Parkinson’s disease. We are excited about this opportunity and encourage you to join us at 11 AM EDT on April 19th. Just click the link below to see how to enter our talk.  We hope that you can join us!

http://www.ecarediary.com/EFCRadioShow.aspx

eCareDiary.com webcast April 19th 11am EDT

eCareDiary.com webcast April 19th 11am EDT

April is Parkinson’s Disease Awareness Month!

Spread the word!

Spread the word!

If you didn’t know, April is Parkinson’s Disease Awareness Month!

Also, if you didn’t know, in September, the World Parkinson Congress 2016 (WPC) meets in Portland, Oregon where thousands of people with the illness, doctors, researchers, authors, and other experts in their fields will convene to meet and discuss what is new in the fight against Parkinson’s disease. If you haven’t looked into going, I would highly recommend that you do. This will be my third WPC event. For more information on the event, visit WPC2016.org

It Doesn’t Hover!

Be Careful!

Be Careful!

Sure it looks like fun, but watch the videos and you might be playing with a potential fire hazard, a product that is sending many to the emergency room, and a powder keg of possible problems. I totally believe that taking a calculated risk now and then keeps life exciting. If you are going to take any kind of risk, make sure that you have looked at all the angles! If the choice is to ride the incorrectly named “hoverboard”, at least put on a helmet, padding, ride on a semi-soft surface, and try to be prepared to fall, rather than expect to immediately master it.

If you have Parkinson’s disease and treasure the faculties that you have, this device, in the current state, may not be the right choice for you. If you desire the ER or an unexpected doctor visit, then spin the wheel, but I’ll wait for another more reliable iteration of these products. I prefer a less risky, less self-com-busting, more stable device that admits that it does not hover (it rolls). Here’s wishing you and yours a very Happy New Year and I will see you right here in 2016!

 

Karl

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