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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

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!

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.

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

Five or More with Todd Sherer, CEO of The Michael J. Fox Foundation

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

Five or More…

My thanks to Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) for contributing to my question/get to know you experiment.

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.

Required questions:

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

Italian – See next answer

 

What do you like on your pizza?

I’m a New Yorker.  Plain cheese, bent with the oil dripping onto the plate

 

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

Spring because baseball season starts. Go Mets!

 

How many World Parkinson Congress events have you attended?

3 – DC, Scotland, and Montreal

 

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

Unfortunately, I am unable to attend this year but am looking forward to hearing all the reports from the MJFF team.  I always love the interactions on the exhibitor floor and hearing what people are really interested in and concerned about.

 

Optional:

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

I’m extremely scared of heights.

 

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

Hawaii – how about they have the next WPC there so I can go?

 

What is the Michel J. Fox Foundation working on that you would like to tell us?

We are working really hard to develop better diagnostic tests and ways to monitor disease progression through our Parkinson’s Progression Markers Initiative (PPMI) .  These measures are critical to allow the field to test new disease-modifying treatments – with the potential to slow the disease.  I’m excited that all the data from this study is made available to the research community in real time at http://www.ppmi-info.org.

 

 

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.

Setting Aside Fear and Anxiety

One of the most common questions that I am asked when I address a crowd is what can I do to improve my condition with Parkinson’s disease (PD)?

A Window  view

A Window view

My short answer to this question is usually a lengthy list of complementary therapies to try and taking the time to experiment in finding what it is that your body, mind, and spirit are drawn to and react to. In this posting, I am focusing just on two components that make up PD, but I believe that these are probably the two key components to keeping PD in check and improving your overall quality of life.

Fear and anxiety feed one another and only exacerbate the symptoms of PD. When these instigators are controlled through breathing, relaxation techniques, and other mind/body exercises, something very positive can happen. A calmness and a sense that your body is prepared for anything lowers the stress that comes with fear and anxiety. Fear, anxiety, and stress, when dissected, are really self-generated weights that we unknowingly put upon ourselves.

Setting arbitrary deadlines for ourselves that are unrealistic or just unnecessary only adds to the pressure that we ought to be alleviating. Focusing on the stressors that trigger our symptoms are key in improving our quality of life.

Keeping Our Emotions In Check.

A pretty spot!

A pretty spot!

If you are dealing with Parkinson’s disease, then I suggest to cast away as much bitterness, anger, rage, denial, or torment that you might have towards it. Those emotions only point your energy in the wrong direction and conflict with your ability to focus on finding a solution to improving your condition.

Karl

A Twenty Year Old Speech Rings True

I was going through my files of paperwork and came across years of documents that I considered to be motivational, inspirational, and truly worth being read and reread. You might even remember it.

Although this following post is not specifically Parkinson’s disease related, I find it to be sound and practical advice for everyone. I hope that you enjoy it, find at least 1 of the 10 pieces of advice to be a morsel to take away, and may even share once again with others:

Palo Alto High School Speech by Guy Kawasaki 6/11/95

10. Live off of your parents as long as possible.
9. Pursue joy—not happiness.
8. Challenge the known and embrace the unknown.
7. Learn to speak a foreign language, play a musical instrument, and play no contact sports.
6. Continue to learn.
5. Learn to like yourself or change yourself until you can like yourself.
4. Don’t get married too young.
3. Play to win and win to play.
2. Obey the absolutes.
1. Enjoy your family and friends before they are gone.

If I were to add to this thoughtful list, I might add – Tell the people in your life and those you care about, just how much they mean to you, while you still can!

 

advice worth consideration

Advice worth consideration

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