Stanford Medicine X, Quantified Self & Connected Health at Doctors 2.0

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Here’s a few more Video Interviews I was able to conduct at the recent “Doctors 2.0 & You” in Paris, France.  They run the gamut from chatting with the Executive Director of the “sister conference” of Doctors 2.0, namely Stanford Medicine X (Dr. Larry Chu) to gaining a hands-on understanding of Connected Health and Quantified Self (Christian Funk), the two (2) “hottest” fields in “disruptive healthcare.”  In that context, “disruptive” is a POSITIVE TERM in that it represents efforts aimed at changing and improving the healthcare “patient experience,” which obviously has much to improve upon.  I’ve also included interviews with two  (2) extraordinary people who are singlehandedly making major impacts on methods of effective Patient Advocacy (Seth D. Ginsberg) and Lifestyle/Preventative Medicine  (Dr. Liana Lianov).

I’ve also included a fascinating Interview with Crohn’s Disease patient and frequent Keynote Speaker, Michael Seres.  Michael stands out because in 2011 he was only the eleventh (11th) person IN THE WORLD to undergo a small bowel transplant and the 6th to succeed.  His contemporaneous blogging of the transplant experience (his blog is “Being a Patient Isn’t Easy!,”) was so accurate and inspirational that it is now considered a Patient Manual and Required Reading by the global Intestinal Transplant Association.   Finally, this Blog entry would not be complete without an interview with Thomas Lee of Symplur about “The Healthcare Hashtag Project” which is so instrumental in helping shape the health care social media discussion. Somehow, Thomas and Symplur make Twitter healthcare “analytics” fun and more importantly, these analytics help hardworking, dedicated healthcare entrepreneurs, disease experts and advocates most efficiently target their message to its intended audience.

 

This is an Interview with Dr. Larry Chu about digital health and this year’s Stanford “Medicine X,” taking place September 5, 2014 through September 7, 2014.  Dr. Chu is the Executive Director of Stanford “Medicine X,” a leading healthcare conference which explores how emerging technologies advance the practice of medicine, improve health and empower patients to be active participants in their own care. It is the formal “sister” conference to Doctors 2.0 & You.  Dr. Chu is a practicing physician who runs the Anesthesia Informatics and Media (AIM) lab at Stanford University. He is an Associate Professor of Anesthesia on the faculty of the Stanford University School of Medicine.

This is Interview is with Christian Funk, project manager for the Germany-based company, Medisana, about Connected Health & Quantified Self.  Christian Funk has been a prolific creator in the area of mobile health but four (4) years ago he started helping to develop and market Medisana’s award-winning “VitaDock” series of Connected Health and Quantified Self devices and applications.  As a result, he is considered an Expert in these fast emerging Global Healthcare fields.

This Interview is with Seth D. Ginsberg, President, Global Healthy Living Foundation, Inc., about Online Patient Communities and Organized Patient Advocacy. Seth Ginsberg is often referred to as “America’s Patient Advocate” and a special adviser to tech start-up companies that are engineering solutions for today’s healthcare- and education-related problems. He is not only the president and co-founder of CreakyJoints, the arthritis advocacy organization and world’s most popular arthritis community, he is also a member.

This Interview is with Dr. Liana Lianov and delves into Lifestyle & Preventative Medicine. Dr. Liana Lianov is a Senior Medical Consultant at the California Department of Health Care Services and the Immediate Past President of the American College of Lifestyle Medicine. She is Board Certified in Preventive Medicine and Internal Medicine, completed a Psychiatry fellowship, and is a national leader in the Lifestyle Medicine movement. Lifestyle Medicine promotes healthy living not only to prevent, but also to treat, chronic diseases. You can learn more about Dr. Lianov’s efforts at Healthtype.com.

This Interview with ePatient Michael Seres is about Life as an engaged ePatient with a Small Bowel Transplant. Our recorded conversation at 2014 “Doctors 2.0 & You” included his account of his unique patient blog journey, his thoughts on what constitutes a successful blog, how he continues to advocate despite formidable day-to-day medical struggles inherent in any transplant or chronic disease situation [i.e., Crohn's Disease] and he also offered his fascinating insights regarding the subtle differences between this Medical Conference and its “sister” Conference, Stanford Medicine X, held each year at Stanford University in Palo Alto, California.

This Interview about Healthcare Social Media Analytics & the Utilization of Twitter Healthcare Data is with Thomas Lee, Co-founder of both Symplur, L.L.C. and “The Healthcare Hashtag Project.”

By way of brief background, Mr. Lee is also Managing Partner of The Fox Group, LLC, an internationally-based healthcare consulting firm.  Mr. Lee’s nearly four decades of experience in the business of healthcare includes special emphasis on business start-ups, new program development and leveraging web. His current passion is the role social media plays in the evolving healthcare landscape, and in the emerging field of healthcare social media analytics.  Thomas also teaches university level courses and has been a frequent guest lecturer to doctoral level students on the subject of healthcare start-up businesses and entrepreneurship.

Crohn’s Disease & IBD – Interview w/ an Expert

USE Chapman Blog Pic July 9 2014

Chronic patients must adapt to different doctors

As a 30-year Crohn’s Disease patient, I’ve met every conceivable type of physician and encountered them on probably their (and my) best and worst days.  With such a complex and seemingly “personalized” disease, I’ve learned there’s rarely a doctor-patient “comfort zone” such that they “take you at your word” when you articulate your symptoms, as rare or strange as they may be, or when you convey your surgical scarred-substantiated veteran thoughts.  But that’s the gig with a chronic, incurable, autoimmune disease like Crohn’s so you must learn to adapt to the different personalities you meet along the way in order to quickly and effectively communicate to obtain the best possible medical care.  When you are diagnosed at the relative young age of 21, the process of adapting also most assuredly includes difficult school, work, family or life relocation decisions which translates into even more “new” doctors with whom to meet and get along with.  This was all true for me but unbeknownst to me at the time, I was lucky; my first Crohn’s doctor turned out to be “THE” Crohn’s Disease doctor.

Sometimes the “first” doctor is the “best” – who knew?

Ironically, it was my first gastroenterologist, Dr. Mark L. Chapman, who instilled in me the necessary courage and confidence to leave his “care jurisdiction” by making those life relocation decisions strictly “on the merits” and not in any way, shape or form influenced by the fear of having to find another Crohn’s Disease doctor with whom I could communicate so intimately; all because we had developed such a uniquely mutual trusting rapport.  By necessity, I tried to re-create this relationship in different parts of the United States, at different times of my life, and its been 30 years, but I’ve never found another Crohn’s or IBD doctor like Dr. Chapman who is so adept at being able to identify and treat so many of the Crohn’s “curve-balls” which initially make me bend at the knees but then wind up painting the corner of the plate as painful, frustrating or disabling strikes which disrupt my life and make me take notice of their potentially pervasive effect on my life or lifestyle.

*“From Tuscon to Tucumcari, Tehachapi to Tonapah” – “Willin’” 

Even though my life’s journey has thus far included prolonged residence in, and visits to, wonderful cities like Boston,  Los Angeles, Portland, Oregon and Paris where I encountered compassionate and expert doctors, and in my travels I’ve had bizarre Crohn’s Disease obstruction complications from the high altitude of South Lake Tahoe, California, the almost perforating pressure inside a small airplane ride from Dothan, Alabama to Atlanta and in Portland I woke up with a Delayed Anaphylactic Reaction to my last infusion of Remicade in New Jersey, I always wound up seeking Dr. Chapman’s advice because no one else could scientifically explain what had happened to me.  I also frequently encountered rare complications from my Crohn’s Disease and unprecedented side effects from the Biologic Drugs and each time they too ultimately led me back to Dr. Chapman because he was the only GI doctor with a global track record of effectively identifying such problems and devising successful treatments.   Mind you, I would extensively research these Crohn’s Disease issues trying to seek a second such opinion but the road always led back to Dr. Chapman. **“Send lawyers, guns and money.  The shit has hit the fan.”  He’s THAT doctor.

Treating severe Crohn’s Disease is a number’s game

My 100% belief in Dr. Chapman is based on logic because obtaining an accurate diagnosis and successful treatment for a challenging and incurable disease like Crohn’s whose “medical textbook” treatments for the most severe of flare-ups often causes even worse side effects is akin to a “number’s game” and the New York City Gastroenterology (GI) Practice in which Dr. Chapman is a Founding Partner has likely treated more Inflammatory Bowel Disease (IBD) patients over the past 30-50 years than any other private GI medical practice in the world.   Moreover, Dr. Chapman’s GI medical practice is the type people turn to from all over the world when the complexities of their case befuddles their local then regional then national IBD experts.

Even when TV asked, I recommended Dr. Mark L. Chapman

I always thought Dr. Chapman resembled the great character actor Brian Dennehy and for some strange reason which has nothing to do with science, that brought me great comfort whenever I was hospitalized and saw him approach my room during morning Rounds.  We would joke about it but then in 2001 when my book, “Confessions of a Professional Hospital Patient,” landed me on NBC’s “Today Show,” MSNBC contacted me about producing a “patient segment” and they wanted to interview my Crohn’s Disease doctor.

Book July 9 2014

They said I could choose any doctor in the United States.  While it does suck to have Crohn’s Disease, it was an incredibly cool feeling the morning Dr. Chapman had to shut down his very busy New York City GI Practice so he could talk about treating ME for Crohn’s Disease to an MSNBC Reporter under the  lights with the pre-Interview makeup ritual which he seemed just a tad too at ease with.

That’s the superficial background on Dr. Mark L. Chapman’s credibility as a Crohn’s Disease and IBD expert. So when a few well-intentioned but rather intense people on a Crohn’s Disease Facebook Group once challenged me on some Postings I made about a Documentary my Charity is producing about Crohn’s and IBD, I thought the best and most efficient way to answer their “comments” was to go directly to the “Source.” That Source is Dr. Mark L. Chapman and he was kind enough to indulge me in my attempt to share his Crohn’s/IBD wisdom in healthcare social media.  To that end, below is Part One (1) and Part Two (2) of my September 10, 2013 Interview with New York City-based Gastroenterologist, Dr. Mark L. Chapman, arguably one of the world’s foremost authorities on Inflammatory Bowel Disease (“IBD) based on his 50+ years of practicing Gastroenterology in one of the world’s busiest and most well-respected GI medical practices.

Note:  This is NOT Medical Advice

Part 1 – In this portion of the Interview, Dr. Chapman provides succinct explanations for the differences between diagnoses of Crohn’s Disease, Colitis, Ulcerative Colitis and even “Crohn’s Colitis.”  Dr. Chapman also explains the serious symptoms associated with having “Severe Crohn’s Disease.”

Part 2 – In this portion of the Interview, Dr. Chapman opines on the role played by the somewhat controversial medical specialty of “Pain Management” insofar as treating Crohn’s Disease and Ulcerative Colitis.  Dr. Chapman also explains what many patients believe is a strange phenomenon regarding their disease flare-ups occurring at the same time of the year; year after year; inferring some type of environmental factors might be involved with triggering Crohn’s Disease flareups.

 

*“Willin’” – lyrics by Lowell George

**“Lawyers, Guns And Money” – lyrics by Warren Zevon

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Google Glass & Surgery, Medicine & Healthcare Innovation

I’ve heard many smart technologically-obsessed healthcare professionals speak at Conference after Conference about how Google Glass will revolutionize the practice of medicine for both patients and doctors but it’s hard to take them seriously when they look like Jacques Cousteau wearing some custom-made contraption just before submerging to explore the depths of some faraway ocean which I will never visit. However, my mind was recently changed at “Doctors 2.0 & You” in Paris, France, when Google Glass Surgeon and “Explorer,” Dr. Rafael Grossmann, was kind enough to share a few minutes with me and explain what every medical expert seems to be sure of, i.e., Google Glass could be a powerful tool for “disruptive innovation in healthcare.”

By the way, the term “Google Glass Explorer” is actually a “term of art” in that these people sign up with Google to purchase Google Glass and then share their stories from using it. I applaud Google for being such a “thick-skinned” corporation focused strictly on making the best product possible and I am eternally grateful to the Medical Google Glass Explorers who are bringing to fruition all that Dr. Grossmann alludes to in this 8-9 minute Interview. Enjoy.

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Crohn’s Disease Patient Reporter back from “Doctors 2.0 & You” in Paris, France

Healthcare “Serious Games” & “Simulation” at Doctors 2.0 & You 2014

Anderson Cooper, look out!

It’s no secret that I try to “cope” with the comprehensive and systemic life-changing effects of 30-years with Crohn’s Disease by advocating for raising global awareness about this auto-immune, chronic, “broad spectrum severity” and often misunderstood disease.  I even started a 501 (c) 3 Charitable Foundation called the “Crohn’s Disease Warrior Patrol” [CDWP] to organize and implement a Patient Care Strategy to help newly diagnosed patients based on the simple adage: Patients helping other Patients is often the Best Medicine.”  In that regard, things are going well with some major announcements soon to come including the CDWP finally commencing a patient-driven Documentary aimed at raising global awareness about the potential severity and pervasive effects of Crohn’s and Inflammatory Bowel Disease [IBD].  But as I do whatever I can, whenever I am physically able to do so, I often interact with ingenious, tireless, dedicated people using innovative and entrepreneurial applications of Digital Healthcare to fight their fight against a disease, a broken healthcare system or to improve the delivery of healthcare and make it accessible to more people.  Accordingly, I can’t help but use this Blog to “report” on these people and experiences so that others not so exposed to such extraordinary circumstances can learn about them and be similarly energized and motivated.  With this mindset, I recently traveled to the 4th edition of “Doctors 2.0 & You” held in Paris, France.  I was also invited to Doctors 2.0 & You to speak about Crohn’s Disease and the CDWP as they relate to the Quality of Patient Data available in Healthcare Social Media.

Healthcare “Serious Games” Designer Evert Hoogendoorn at Doctors 2.0 & You 2014

Doctors 2.0 & You 2014 | Interview with Tal Givoly, CEO, Medivizor

Trials & Tribulations of a traveling Healthcare Reporter with Crohn’s Disease

I’ve been to many of these seemingly “cutting-edge” Healthcare Conferences but sometimes they don’t focus enough on the “Patient Perspective” when they tackle the fast-changing landscape of digital healthcare.  That oversight seems patently counter-intuitive and thus negatively skews the quality of my experience and thus it’s always of concern to me prior to attending.  My biggest concern, however, is always my health, especially with respect to Doctors 2.0, because just the mere travel to Paris, France made me very nervous as it was only a few months after my Hip Replacement Surgery and not too distant from the intense chemotherapy I underwent to treat a still-undiagnosed severe breathing/lung problem likely caused by Biologic medications I took to keep my Crohn’s at bay.  Additionally, during my last cross-country excursion to the wonderful “Medicine X” at Stanford University in California, the air pressure inside the airplane caused my bowel to obstruct mid-flight such that the first few days of “Medx” (and the remaining portion of the flight!) were very painful for me.  Then, immediately after Medx when my Crohn’s had quieted down, I tried to take advantage of being out West and visited some friends in Lake Tahoe, CA.  But within a few hours at such a high altitude (i.e., 6,500 feet above sea level), my “insides” blew up and I looked like “The Michelin Man” and knew I had again obstructed and was forced to drive to lower ground to avoid a certain hospitalization. 

Doctors 2.0 & You 2014 | Interview with Stanley Lee of DXY.com in China

Since I was scheduled to fly back to New Jersey from Reno, Nevada, I drove there to a nice, secluded well-respected chain hotel near the airport but quickly learned the hard way that Reno, Nevada is 4,500 feet ABOVE sea level and as far as my bowels were concerned that meant I was still at the top of Mt. Kilimanjaro.  So, at 5 AM, back into the rental car I went, headed toward lower ground while struggling with intense abdominal pain, all the while praying my bowel wouldn’t perforate.  Somehow I safely made it to Sacramento, CA, which is only 13 feet above sea level (I was SO thankful for technology and my ability to quickly research the closest city to Reno, NV which is at or near seal level), and I soon began to feel some relief.  My trusted, longtime New York Gastroenterologist, Dr. Mark Chapman, then over the phone instructed me to stay there for AT LEAST five (5) more days as my body would require that much time to re-acclimate itself.  As always, he was correct as it took two (2) days for the associated joint pain, extreme fatigue and, at times, severe abdominal pain to subside to the point I was able to get out of bed with energy and three (3) more days for me to feel comfortable with the thought of flying again.   

“Connected Health” w/ Uwe DIEGEL, iHealth CEO @ Doctors 2.0 & You 2014

Being amongst “THE” Global Healthcare Leaders at Doctors 2.0 & You

Going to Doctors 2.0 & You also meant my first international travel with a very expensive video camera which I would be relying upon to capture over twenty-five (25) Interviews with fascinating Doctors 2.0 & You Speakers and Attendees.  I was concerned about damaging the camera during travel and/or somehow erasing whatever footage I was lucky enough to record.  Then there was the international electricity situation which I had to rely upon to charge the camera after Day One of the Conference.  Would it damage the camera?  Would it damage the footage?  Would I damage myself trying to figure it out?!  I researched all of these issues prior to the trip but as many of you can already guess, nothing went according to plan, BUT everything worked out.  My health even cooperated although upon my return to the United States I was EXHAUSTED.  As a result, I came back from Doctors 2.0 & You with even more respect for Anderson Cooper! 

More importantly, the people who organized Doctors 2.0 & You were extremely helpful and they did a tremendous job in designing the different “Sessions” and selecting the different Speakers and Panel Moderators.  I truly felt as if I were amongst “THE” Global Healthcare Leaders as I learned about healthcare terms and topics which had never been so thoroughly discussed before at prior Conferences.  These new technology-driven terms and topics included Connected Health, Quantified Self, Preventative Healthcare, a Utopian Data Feed, Personalized Medical Research, Serious Games, Simulation, Lifestyle Medicine and Medical Gamification. I tried to take advantage of the situation by interviewing as many of these Healthcare Innovators as was humanly (and electricity-wise) possible.  Thankfully, everyone I approached kindly consented to an interview and embedded in this Blog Post are five (5) such concise interviews which I think demonstrate everything that was absolutely wonderful about the 4th edition of Doctors 2.0 & You held in Paris, France on June 5-6, 2014. 

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The EVENT that is “Doctors 2.0 & You” in Paris, France

1-Doc 20 and you May 24 2014

 

To encourage attendance at a Healthcare Conference or Event, especially one which requires substantial travel and represents itself as “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O,” the Organizer must ensure it: informs and inspires attendees; provides meaningful and reasonably intimate discussion forums pertaining to new and/or more effective, efficient healthcare delivery and access methods and modalities; and organically generates a comfortable networking environment and a cerebral spectacle which at the same time both validates one’s attendance and also challenges it.

Orchestrating this nuanced recipe requires successful experience in putting together similar healthcare conferences such that long-established and globally diverse contacts and leaders in fields such as medicine, patient advocacy, technology, pharmacology, business, healthcare social media and hospital administration are eager to participate and up-and-coming healthcare entrepreneurs can’t wait to attend and demonstrate their latest innovations.  Perhaps most importantly, all of the foregoing must make both a pragmatic and creative impression on everyone so they leave “Doctors 2.0 & You” THINKING PROACTIVELY about implementing in their own organizations and lives (and in the lives of people they care about) all they’ve seen and heard during their 2-day stint in Paris, France regarding their opportunities with these new ideas, methods and technology.

Why I’m Psyched for Doctors 2.0 & You 

In preparation for writing this Blog post and with the aforementioned high success threshold for Healthcare Conferences in mind, I reviewed the forward-looking Agenda for the two (2) days [i.e., June 5th and 6th] of “Doctors 2.0 & You” taking place in Paris, France AND I perused through the voluminous Bios supplied by the globally diverse and extraordinary lineup of Speakers and Moderators.  Suffice it to say, I am excited to be a part of “THE international event in Healthcare Social Media, Mobile Apps & Web 2.O” organized by Basil Strategies, a digital health consultancy.  Denise Silber is the President of Basil Strategies and 2014 is the 4th iteration of “Doctors 2.0 & You” during which the focus is on the evaluation of digital health.  (Note:  This Blog Entry is of my own volition and in no way was it recommended or required by Basil Strategies.  I simply want people to know about “Doctors 2.0 & You” and why my attendance and responsibilities there will likely prevent me from updating my Blog for a while.)  

What I will be doing at “Doctors 2.0 & You”

My participation in “Doctors 2.0 & You” is two-fold:  1. I am one (1) of the Presenters at the June 5th Session, “ePatients and the Quality of Data,” supplied by, for example, Crohn’s Disease patients in which I show how to maximize the quality, and thus value, of such patient-generated data simply by diversifying both the healthcare social media platforms I rely upon as sources and the methods I use in obtaining that data; and 2.  I will be conducting succinct Video Interviews with as many of the fascinating folks in attendance as possible during the two (2) days so that I can help document the “Event” and then share my experiences and what I’ve learned with everyone who was not able to attend this year’s “Doctors 2.0 & You.”     

The Theme of this year’s “Doctors 2.0 & You”

Day One (1) of the 4th edition of “Doctors 2.0 & You” focuses on the evaluation of digital health. Day Two (2) gets more specific and seeks to address “what we’ve learned and which new areas are most promising.”  In that regard, set forth below are the scheduled Session Topics for each day.

Day 1: – Three (3) Session options for each 60-90 Minute “Session”

SESSION ONE

 Start-up Pitches – This start-up contest brings together seven (7) companies from five (5) Countries, working on diverse aspects of digital health, quantified self, mobile apps, etc.

Evaluating “Connected Health” – “Quantified Self” devices and Apps

“Connected Health” is a healthcare delivery model that uses technology to provide healthcare remotely.  Its objective is to maximize healthcare resources and provide efficient and effective opportunities for consumer patients to engage with clinicians while at the same time better self-manage their care.

 “Quantified Self” is essentially telling stories with data.  It occurs when patients self-track everyday life activities in order to improve their quality of life.

With the advent of technology, the proliferation of smartphones and the increased usage of Wearable Measurable Devices, these are emerging healthcare fields which warrant attention now.  Therefore, various aspects of both will be discussed by users and manufacturers and the Session will also explore what works and what doesn’t – as seen by one of the largest  Connected Health objects manufacturer in the world.

ePatients & Quality of Data – How reliable is patient-generated data in social media?  IS it more reliable coming from individuals or from online disease-specific communities?  Is there a method to maximizing the quality, and thus value, of this patient-generated data? What about patient reviews of hospitals and healthcare professionals?

SESSION TWO

Informal “Unconference” Google Glass Interaction – Diverse Google Glass healthcare pioneers briefly share their experiences and then participants get to try out using Google Glass in an informal setting.

“Disrupting” the practice of medicine through Digital?  The term “disruption” within the healthcare continuum can take on different means depending upon who’s speaking and what they are doing digitally to help manage their healthcare.  The Speakers specifically address Lifestyle Medicine, Telemedicine and the resulting NEW more collaborative Patient-Physician relationship is explored.

Impact of Social Media by Patients for Patients – Several experts explain how they established disease-specific social media communities from scratch and how social media is being used to help with rare diseases.

SESSION THREE

“Gamification” and “Serious Games” – Insights into the Dutch experience and the applications of each and both in Healthcare, for both professionals and patients, young and oldThe Dutch speakers explore important insights into the many facets of the Serious Game and Gamification such as techniques in hospitals and those used in continuing education for physicians.

Advanced eMarketing Pharma Workshop – “The workshop will examine recent digital advances in the patient journey; the pros and cons of where we are now; together with what needs to happen next such that the future ambitions of all those involved [patients, providers, practitioners, Pharma, payors and caregivers] can be realized.”

Social Media Curation (or selection of health web resources) with one of the most influential online physicians and “medical futurists,” Dr. Berci Mesko.  Dr. Mesko teaches health web curation to a variety of audiences (e.g. medical students) and he will adapt his teachings to the enrolled attendees.

SESSION FOUR

New Data on Physician and Patient Engagement – Analysis of never-before presented proprietary data on web conversations and behavior in both healthcare professionals and patients around the world.

Evaluating Digital Pharma Case StudiesDiscussion of three (3) different facets of Pharma’s digital involvement: European perspective on remote detailing [i.e., electronic visits with Pharma sales reps]; continuing education; and use of major social media networks.

Educating physicians in online communities – Exploration of techniques which enable physicians to learn best in online communities such as: in a Pharma-supported training program in an Australian online physician community; in a Pharma-supported Russian “gamifying” online physician community; and in an online physician network in Switzerland which focuses on improving skin cancer detection with an electronic dermoscopy device.

SESSION FIVE

Spanish Meet-up “Unconference” Session – Spanish speakers and conference participants are invited to meet at the end of Day 1 to share perspectives on the different sessions they’ve attended.

Twitter Demo: New Launch Tool – The company behind “The Healthcare Hashtag Project,” Symplur, will demo a new and exciting social tool.

Personal Blogging: What works, what doesn’t?   Uniquely successful, candid and prolific UK blogger, Michael Seres, whose personal blog leading up to his recent rare small bowel transplant due to Severe Crohn’s Disease is now the OFFICIAL patent blog of the Intestinal Transplant Association for patients to read before such transplants to help prepare them for the plethora of personal, physical, emotional, psychological, familial, social and professional issues, shares his perspective on which platform, which subjects, how to market a blog, integration with mainstream media, etc.

Day 2

Caregiver Perspective – Meet the parents who developed SUBSTANTIAL social media awareness about the devastating effects of pediatric stroke after their son was so stricken. “Hear the power of their message.”

Understanding the seemingly never-ending NEW digital healthcare tools - The bounds of patient and physician imaginations are being stretched with new modalities driven by the surge in both the entrepreneurial spirit and technological capabilities.

Integration of Google Glass for Surgery? Pharma? Payers? – Experienced Google Glass Explorers share their learned perspectives and Pharma and Payer perspectives are also addressed.

From Data to BIG DATA: Good for Whom?  There’s more data and more mediums than ever before so how do we make use of it to improve healthcare?  “Are we making use of it to improve healthcare?”  Relevant analysis of the #Doctors20 Twitter hashtag is provided by Symplur using latest visualization techniques.

Can Social Media Stop Colon Cancer?  Spreading the word through social media campaigns about preventative steps to stop colon cancer has concrete results and numbers.

Physician engagement, Community and Pharma – Online physician engagement is taking different forms and including diverse online communities and tools, such as China’s Weibo, a hybrid of Twitter and Facebook which is the most popular site in China, including  partnerships with Pharma. Pharma’s relation to all of these global communities and tools are examined.

Quantifying “Quantified Self”! – An examination of both the rise of mobile apps and connected objects, such as different wearables, and a prognosis of the future regarding them.  The groundbreaking speakers will: compare and contrast the United States and European perspectives; examine the interest of Wellness programs for Pharma; and contrast the Spanish and international perspectives.

Digital Pharma, Hospitals, Patients and Patient Drug Research – The effect of, and opportunities provided by, the new digital age and fast-changing healthcare technologies is examined from the perspectives and experiences of the different healthcare stakeholders. Pharma expert provides his perspective from within the industry about this digital convergence.

Mobile Health Best Practices – With the proliferation of mobile health, there are many questions about its “Best Practices.”  An extraordinary panel of experts provides their thoughts, ideas and answers.

MOOC [Massive Open Online Course] on Mobile Health: does it work?  Currently, more people have access to a mobile phone than they do to clean drinking water. Simultaneously,  health systems around the world struggle to deliver cost-effective care.  But with the advent of FREE MOOCs open to anyone with an Internet connection, there lies great promise.  The developer of the successful MOOC, “Mobile Health without Borders,” in which 10,000 students from all over the world participated, reports on his experience.

Serious Games: What results? – The founder of Games for Health Europe shares specific examples and his visionary perspective on the emerging sector of “Serious Games” and simulation for health.

A Look into the Future with @Berci – One of Europe’s most connected physicians and the world’s most notable “medical futurist” provides a fascinating look at the future of digital health.

Adieu

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“Facial Difference” & “Facial Reconstruction” – An Extraordinary Patient Advocate

The plight of the extraordinary woman, Vanessa Carter, speaks for itself in this 15-minute Video Interview regarding her 10+ year Facial Difference/Reconstruction Journey in Johannesburg, South Africa resulting from a 2004 Car Accident and offers advice for other patients facing “Facial Difference” issues.

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PLEASE Support Crohn’s Disease by shopping at AmazonSmile

Amazon Saves

 

SMILE.AMAZON.COM

 

 Because when you shop at AmazonSmile, Amazon will donate 0.5% of the purchase price from your eligible AmazonSmile purchases to the “Crohn’s Disease Warrior Patrol.”  Thank you.

Just cut and paste THESE LINKS into your Web Browser and then you will be on AMAZON.com – except you will ALSO be participating in the AmazonSmile Program.

http://smile.amazon.com/ch/46-1971577 

http://goo.gl/0cswWx  (Short Link)

Why help the Crohn’s Disease Warrior Patrol? Because we are a 501 c 3 Non-Profit Charity dedicated to Raising Awareness about the Potential Severity and Pervasive Nature of Inflammatory Bowel Diseases (“IBD”).  Here are Four (4) examples of Social Media interactions I’ve had JUST this past week which justify the need for Charities like the Crohn’s Disease Warrior Patrol.

Is Crohn’s Disease a mental disease?  A young but inquisitive newly diagnosed Crohn’s Disease patient posed this question on a Facebook Group as if his doctor had told him HE WAS TO BLAME FOR HIS MEDICAL TROUBLES.  I felt terrible for this teenager because that is EXACTLY what I went through during my “diagnosis journey” when a Shrink I had been seeing at the age of 22 or so called me in the hospital after I had suffered an Intestinal Obstruction and was hospitalized for 10 days and placed on extremely powerful narcotic painkillers.  After confirming I was now feeling better, he said, “DO YOU SEE WHAT YOU DID TO YOURSELF NOW?”  I pulled the phone out of the wall and once I was healthy I went back to the Shrink and got ALL OF MY MONEY back under the rationale that he was not qualified to treat a patient suffering from Crohn’s Disease.  It’s been almost 30 years, 20 surgeries and 200 hospitalizations later with my case of Severe Crohn’s Disease and I can attest to the fact that it can be a severely painful autoimmune disease which can also be disabling and so pervasive in one’s life that it has mental, emotional, financial, social, familial and professional effects. Almost forgot, it is also INCURABLE.  Accordingly,  Crohn’s Disease CAN cause a variety of mental disorders because coping with it proves to be isolating, lonely and too often misunderstood even by those who love you most.  For example, this is how I lost a close friendship shortly after being diagnosed just past my college days:   “I can’t believe you can’t come to my wedding on Sunday; we were out partying LAST NIGHT and you looked FINE, now you are in the hospital?  I don’t believe it.”  When that disbelief or “but you look fine” repeatedly occurs in different forms, in different forums, over and over again, despite you crying in pain and being left destitute from medical bills, it can make you go F’N CRAZY. 

Overheard conversation from one girl to another in a high school bathroom by a Crohn’s Disease patient named “Jane” as she was busy attending to her urgent bodily functions in a stall in the same bathroom:  “Don’t use that stall after ‘Jane’ because she has ‘that’ disease and it is disgusting.”  I recently came upon this also in a Facebook Group and it broke my heart but as I wrote the girl who shared this incident with us, these types of stories quickly reveal the character of the ignorant people who don’t understand that in Life, no-one comes away unscathed by disease and adversity.  To have Crohn’s Disease in high school is certainly challenging but it does make the person wise beyond their years and they learn to use their Crohn’s almost like a “BS Detector” when they encounter male and female relationship issues as they get older.  I’m lucky like that because I have a core group of friendships most of which are 30 to 40+ years in the making.  “Lucky” and “Crohn’s Disease” in the same sentence seems like an oxymoron but that’s what these horrific “bathroom stories” teach you when you are fortunate enough to find friends like mine.  But ignorance is rampant in the Crohn’s Disease and IBD worlds as even in dating, I have heard stories from beautiful, smart and funny women about men who were turned off by their Crohn’s Disease because they thought it was CONTAGIOUS.  It most certainly is not but it shocks me how such a potentially SEVERE AUTO-IMMUNE DISEASE can be SO MISUNDERSTOOD.  In any event, Crohn’s Disease patients spend their lives turning lemons into lemonade, physically and mentally.

Television’s Dr. Oz did a rather in-depth segment on his TV Show and emphatically concluded “Irritable Bowel Syndrome” (“IBS”) is caused by STRESS when any science-based physician or institution like THE MAYO CLINIC will beg to differ.  Stress can make ANY medical condition worse and it can also trigger a condition which a person is scientifically vulnerable to but STRESS DOES NOT CAUSE IBS; it is a REAL SCIENTIFIC MEDICAL CONDITION.   For those who are wondering, the difference between IBS and “Inflammatory Bowel Disease” or “IBD” is that IBD involves INFLAMMATION and is an INCURABLE AUTO-IMMUNE DISEASE such as Crohn’s and Ulcerative Colitis whose treatment medications counter-intuitively come with side effects as challenging as the IBD itself.  I am not aware of the scientific numbers but it may be reasonable to assume that some or many people initially diagnosed with IBS go on to getting IBD simply because it can be a natural progression and/or the more serious IBD was misdiagnosed initially.  That said, people suffering from IBS nevertheless can suffer GREATLY.  But whether it is IBS or IBD, it doesn’t help the global understanding of these VERY PAINFUL conditions/diseases when a popular Television Doctor trivializes constant diarrhea, painful constipation and paralyzing, agonizing distention.  It is bad enough when a patient’s own doctor tells him or her that THEY ARE CAUSING THEIR IBS or IBD that syndicated broadcasting of such a falsehood only makes patient mental coping problems more prevalent.  Thankfully, however, there are WONDERFULLY KNOWLEDGEABLE and COMPASSIONATE Gastrointestinal DOCTORS who make Dr. Oz look like a shyster driven by a fame agenda.

A 51-year old woman I know who’s suffered from Crohn’s Disease for approximately 35 years (i.e., “Sandra”) was recently hospitalized via the emergency room near her home in Biloxi, Mississippi.  Her condition was so serious that she was transferred to a better-suited hospital in New Orleans.  She apparently had a few VERY PAINFUL “strictures” around her J-pouch and required surgery ASAP to fix them.  I met this lovely woman on-line in some IBD-related Facebook Group a few years ago when she was trying to help other patients with answers to their Crohn’s questions based on her vast experience.  But the more I got to know her, I learned that she had no family and she lost her home and belongings (including all of her medical records) in 2005’s Hurricane Katrina which virtually wiped Biloxi, MS off the map.  Now disabled, this woman has thus far been unable to obtain Social Security Disability (“SSD”) even though she worked and paid into it for over 20 years because she cannot afford to go for the doctor appointments and diagnostic tests needed to medically substantiate her current SSD application.  So when I heard she was all alone in a New Orleans hospital facing surgery, I turned to the power of Social Media and with the help of her friend Kathleen Fox Polizzi within a FEW HOURS a tremendously compassionate volunteer (i.e., Robin Kingham) with the Louisiana Chapter of the Crohn’s and Colitis Foundation of America (“CCFA”) had visited her twice and people from around THE WORLD were sending her “good luck” texts and whatnot.  Then I tracked down Robin Kingham and asked her if she would be so kind as to drive Sandra from New Orleans back to her home in Biloxi, Mississippi, when she was discharged from the New Orleans hospital?  Robin beat me to the punch and explained she already planned on doing that 2-3 hour drive as a surprise to Sandra.

So, with the help of people like Kathleen Fox Polizzi and Robin Kingham, the Crohn’s Disease Warrior Patrol is making progress.  To sign up to be a Warrior  or a “Patient-in-Need,” please visit our website.

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Contrasting Neurologists – The Ridiculous to the Sublime

Neurology April 13 2014

When stricken with a challenging medical condition, most people seeking the opinion of a referred-to medical specialist, such as a Neurologist, assume each will reach the same conclusions, conduct the same exams, and apply the same thoroughness and attention to detail in treating the patient with dignity, compassion and respect. Au contraire, as my recent experience proves with respect to Consultations with Two (2) Neurologists my Mom and I recently interacted with to treat my Mom’s condition of “Left Homonymous Hermianopsia” (“LHH”) which was correctly diagnosed by a Neuro-Optometrist while my 78-year-old Mom recuperated in a Rehabilitation Facility (“Facility”) from Double Knee Replacement Surgery.  In laymen terms, LHH is the loss of half of the field of vision on the same side in both eyes.  Therefore, in both of my Mom’s eyes, the left side is seriously compromised and this causes “blind spots” and/or she doesn’t always see or recognize things which quickly approach her like a close relative coming over to kiss her hello.  Apparently, it occurs as a result of a stroke or a traumatic brain injury from a fall and it also includes tormenting, but seemingly very specific, cognitive difficulties with respect to the judgment of “spatial” relationships.  As a result, my Mom’s “depth perception” is not calibrated correctly and this affects her ability to perform many daily tasks such as driving, cooking (and in her day she was a GREAT Cook!!) and even walking 10-feet from the car to a favorite local store I always drive her to in order to complete simple household errands.

The day-to-day effects of “Left Homonymous Hermianopsia”

I live with my Mom so I have known for 2 years or so that something was “off” about her as her depth perception at times seemed odd and she suffered occasional “spatial incidents.”  Those spatial incidents included suddenly falling down when the gradient of a concrete walkway increased by only an inch, going to the car’s rear door when I would pick up her at the supermarket when she should have opened the front passenger door, and being unable to sign her name on, or often even near, a designated line.  Then there is the short-term memory loss which starts out as forgetting where keys are left and soon includes the inability to work the TV Remote Control.  Mind you, my Mom has remained competent throughout this time and I still enjoy talking to her more than anyone else on the planet.  But, at unpredictable times, it has been frustrating to have an engaging and profound conversation with her about politics one minute, only to witness her complain the next minute about a beautiful functioning Dresser being broken because she was unable to “slide” a dresser drawer into it perpendicularly instead of horizontally.   Accordingly, if you spent 10 minutes with my Mom, you’d think she is a firecracker for her age with a quick wit to match but any additional time with her would surely reveal this tantalizing problem with “spatial relativity.”

 Diagnosing “Left Homonymous Hermianopsia” in my Mom

All along I thought her depth perception problems logically had to be attributed to her vision so during her recent knee surgery and subsequent physical rehabilitation when several nurses at the hospital and then at the Facility asked me if I knew my Mom had vision problems, I asked the Facility’s eye specialist to exam her.  Apparently, within only a few minutes, he was able to diagnose a rather large “Cut” in her Left Field of Vision and suggested a Brain MRI to confirm his suspicion of LHH based upon additional anecdotal information he had acquired from me, other members of my family and the staff at the Facility.  I then contacted my Mom’s long-time Ophthalmologist to obtain all of her medical records and he told me we needed to see a Neuro-Optometrist to confirm a diagnosis such as LHH.  Coincidentally, the Facility’s eye doctor was also a Neuro-Optometrist.  Therefore, the family treatment plan was to compare the new Brain MRI to another from approximately a year ago (as we tried to look into this depth perception problem then but the MRI was basically normal “for her age”) at this Neuro-Optometrist’s  office shortly after her discharge from the Facility.  We did all that and the diagnosis was confirmed by this Neuro-Optometrist with his adamant referral to a neurologist as to “Why” this happened and “How” it could be treated.  We never witnessed my Mom having a Stroke, but it is possible she had one.  We had seen or been around her when she fell, but no particular fall seemed worthy of an emergency room visit, which we were told was generally the benchmark for such a fall to cause LHH.  We left this Neuro-Optometrist’s office feeling good about at least having a Treatment Plan to help my Mom and consulting with a Neurologist was obviously the focus of that Plan. 

The Comfort of a Formal Diagnosis

As explained in previous Blog Posts of mine, “Diagnosis Journeys” can be arduous, expensive and emotionally challenging.  Knowing this and how my Mom must have been struggling the past two (2) years or so, it was comforting to have a formal diagnosis and then even my Mom came on board and began admitting her silent struggles whereas up until this point she was reluctant to seek a diagnosis for fear of something much worse being discovered.  More specifically, she had been married to my Dad for over Fifty (50) years and he passed away in 2008 from a confluence of serious heartbreaking medical conditions which culminated in Sleep Apnea-induced Dementia such that the combination of heart and lung problems from two (2) bouts with Lymphoma, Chemotherapy and Radiation had done such damage that the Dementia destroyed his quality of life.  His systemic physical and psychological pain was simply too much for any man to withstand especially when he was unable to love his healthy loving wife and best friend of over 60 years in a manner consistent with the way he felt about her.  My Dad was one tough customer and I thank him for passing onto me his resiliency trait but there was no consolation for my Mom and that’s why she was reluctant to learn what “Father Time” had possibly done to her mind and/or body.

 Looking for the “Right” Neurologist

While LHH sounds rather tame in terms of medical conditions to live with, I can tell you from living with my Mom that someone must be around her during most of her waking hours to make sure her condition doesn’t cause unexpected physical harm to her.  This may not be true with other LHH patients but when she’s 100% healthy, I like to refer to my Mom as being “frequently wrong, but never in doubt” and it is this determination and confidence which worries us about leaving her alone.  It is also one of the many reasons why I love her so much.  So, we began looking for the “right” Neurologist for her.  But how does one do that these days with so much more additional information available via the Internet such that one need not necessarily rely upon Word-of-Mouth recommendations?  Moreover, the Neuro-Optometrist who correctly diagnosed my Mom had suggested a few neurologists in his absolutely thorough treatment of her. Those things being said and also living in Northern New Jersey with relatively easy access to New York City doctors, there is always the temptation to find “the best” and those doctors are usually located in major cities such as New York City.

Having much experience myself with a variety of serious medical problems for the past 30 years due to my battles with the chronic, autoimmune and incurable Severe Crohn’s Disease, I decided to contact one of the smartest, most professional, kind and compassionate doctors I knew and asked her whom she would send her mom to if she were stricken with this condition.  Thanks to this pulmonologist, we quickly got the name and contact information of that neurologist and took the soonest available appointment which was approximately 3-4 weeks away.  For the sake of making this Blog Post about the underlying problem and not about a specific neurologist, let’s refer to this female doctor as “Neurologist #2.”  But the day-to-day stress of managing the LHH was intense and taking a toll on everyone so other family members had similarly qualified a few different neurologists located in the Metropolitan New York/New Jersey area so I began looking them up on the different Physician Rating websites.

We figured my Mom would need two (2) neurological opinions anyway so it made sense to pursue a second neurologist.  Sure enough, one of the doctors recommended by a family member had GREAT ratings on these Physician Rating websites and they were also similar to the ratings of Neurologist #2 who we were seeing in a few weeks.  That seemed to signify the end of our neurologist search so we called this other neurologist (“Neurologist #1”) and he had an appointment available only a few days away.  We took that appointment figuring it would at least provide some psychological comfort and we would learn more about my Mom’s condition prior to our appointment with Neurologist # 2 whom we figured would become her Treating Neurologist based upon her affiliation with a very prestigious institution and by virtue of the manner in which we were referred to her (that is, by my excellent and compassionate pulmonologist).

The Appalling Neurologist #1 Experience Begins

 Excited to get some answers, we got to the doctor’s offices early.  They say you don’t get a second chance to make a first impression and he failed that test when my Mom, still recovering from her Double Knee Replacement Surgery and relying on a cane or a wheelchair, when necessary, had to navigate a STEEP uphill parking lot with just her cane and leaning on my shoulder because it had no close handicapped parking and no accommodating wheelchair access was available, as it usually was at the doctors’ offices my Mom frequented.  Please also note that I am slowly recovering from Hip Replacement Surgery so my Mom’s reliance on me to traverse this “hill” was almost too much for ME to bear. I thought this steep uphill patient parking lot was odd especially since as a highly touted neurologist, much of his patient population had to be older people or disabled patients who desperately needed these physical accommodations.  However, not wanting to “judge a book by its cover,” we proceeded into his “office” which was a cheaply converted house with MINIMAL patient amenities.  The walls were old, the floors seemed ignored for years and the doctor’s office was more appropriate for a civil employee at a local, quiet municipality.  But, the man was highly praised on-line as a neurologist so I kept encouraging my Mom to be positive.

Neurologist #1 – “So why are you here?”

After exchanging pleasantries sitting across from the doctor in his medical office/exam room yet devoid of any medical equipment such as an x-ray illuminator, impressive medical textbooks or even a patient exam table, I politely explained my Mom’s diagnosis of LHH and simultaneously handed the doctor the CD results of the two (2) aforementioned MRIs as well as their respective written ONE (1) PAGE diagnosis reports along with the detailed written analysis and diagnosis from the Neuro-Optometrist.  After giving this CRUCIAL information no more than a cursory “acceptance” acknowledgement, the doctor placed the information “package” on his desk as if I had given him yesterday’s newspaper and looked at my Mom and I and said something substantially to the effect of: “So why are you here?”

I was surprised by his question given that we were explicitly told to see a neurologist and I was also annoyed at his dismissive attitude which indicated we were somehow bothering him by our mere presence in his office/exam room.  After all, I thought, he accepted the appointment knowing my Mom’s diagnosis and I assume he was going to accept payment from Medicare for the services rendered during the appointment so you’d think he’d at least exert some effort to earn his money?  My skepticism aside, I could also feel the “hope” slowly leak from my Mom’s face as if this extremely cold interaction was indicative of the beginning of the end of her active life and charming personality as she knew it to be but I ignored my instinct to physically “school” this doctor on the proper way to treat patients and I quickly and succinctly explained the essence of the information I had given him.  He listened but each time my Mom interrupted me to elaborate on her own story to better demonstrate her symptoms, he literally gave her “the look” as if to say, “It’s bad enough I have to deal with your son talking at me, lady [a/k/a “his PATIENT”], so why don’t you keep your mouth shut so we all can get out of here sooner?”

Neurologist #1 – Treatment Plan: “Same Time, Next Year”

When I was done speaking, he told us that all we could do was schedule an MRI in a YEAR and then come back to see him so he can ascertain whether or not the LHH had gotten worse.  He did not say what he would do if that happened; he just flippantly suggested we do this despite my Mom and I telling him about her day-to-day challenges with this condition and how a doctor specializing in diagnosing this condition had been adamant that we see a neurologist to understand why the condition occurred and how it could best be treated to at least improve my Mom’s quality of life.  That’s when I started feeling more than a little patronized by this doctor who should have retired to play golf if he had no interest in HELPING or LISTENING TO HIS PATIENTS.  I remarked that I found it strange he took our appointment knowing my Mom had LHH but asked us why we were there and also told us the ONLY TREATMENT was to have annual Brain MRIs and then pay to see him again for what amounted to, no medical advice.  I was thinking I could have had the same experience visiting my friend Eric, and he’s an attorney, or my friend Rich, who runs an Office Painting business.  Call me crazy, but such a qualified referral from a Neuro-Optometrist who had been DEAD-ON in diagnosing my Mom with a very complicated condition warranted a more substantial Treatment Plan from a neurologist than the mere scheduling of an annual encore performance of NOTHING.

Sensing my FURY with his complete CONDESCENDING BULLSHIT, Neurologist #1 reluctantly started explaining the science behind LHH and that my Mom must have had a Stroke in order to be in this condition.  We explained that we witnessed no such event nor did she fall so severely so as to cause such a traumatic brain injury.  Without inquiring into my Mom’s lifestyle or history of falls, and thus based on nothing but a coin flip in his mind, he maintained she “had a stroke.”  I asked if there were any additional diagnostic tests to prove that, and more importantly, I respectfully inquired if there were any tests or medications to help prevent her from having another stroke, if she had one in the first place?  With not one muscle changing in his face, he just said, “No.”  I responded, “Is there ANYTHING to be done to determine her present state of mind?”  He looked at me as if I had just ruined his tee time and went on to administer the most unscientific spur-of-the-moment Dementia Test I had ever heard of or witnessed and I was somewhat familiar with them from my days of practicing law and representing “alleged mentally incompetents.”

Neurologist #1 – Dementia or “Left Homonymous Hermianopsia?” – Flip a F’n Coin

Again, the doctor did not move from behind his desk nor did he refer to any paperwork when he started asking my Mom fairly simply questions to test her memory retention skills.  He asked her to remember 3 simple words in a specific order and continued asking her “time and place” questions.  She did well with her answers and she also was able to recall the three (3) words without any problems but then he drew a simple rectangle on a piece of paper and placed it in front of her and asked her to replicate it.  Since my Mom was an artist at one point in her life and could paint beautiful landscapes and portraits from scratch, in my mind, this was a significant test.  She drew a 1-2 inch straight line and kept going over it with the pen thinking she was creating a rectangle when all she was doing was drawing a very BOLD 1-2 inch line.  Based on our detailed conversations with the Neuro-Optometrist who diagnosed her with LHH,  this was evidence of how severe her LHH problem was with respect to spatial issues such as drawing a rectangle and making sure the overall shape was correct and the opposing lines were generally parallel with one another.  Despite my Mom’s obvious poor performance on this spatial part of the spontaneous test, the doctor was un-phased and then said something to the effect of, “Okay, so we are done here, right? You’ll contact my office in a year or so and we’ll do another MRI of your Brain.”  He then began to get up from his chair.

THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS

My Mom thought she had just witnessed the movie trailers with a film feature sure to follow but the doctor got up to leave giving off the impression of finality similar to end credits as they begin to roll down the screen.  She started to verbalize more specific examples of her experiences with LHH and he turned around and looked at her like he had heard enough as if she had been a loser on a TV Game Show who wouldn’t leave the contestant’s chair when asked to do so.  For a few seconds, I felt very sad as I could feel my Mom’s world coming apart at the seams but my outrage took over at this doctor’s disgusting behavior toward his patient, my Mom, and how that repulsive behavior could unfairly affect my Mom even though all she had really witnessed and experienced was THE WORST DOCTOR CONSULTATION I HAD SEEN IN 30 YEARS with my chronic, incurable and severe disease which has caused me twenty-plus (20+) surgeries and two hundred (200) or so hospitalizations.

As the doctor left the room and my Mom and I were left to pick up the medical information we had brought to help facilitate the doctor’s understanding of my Mom’s situation, I quickly changed my focus to my Mom and concentrated on making sure she forgot about this douchebag as soon as possible knowing there was nothing I could do to make this doctor act like a professional physician.  I apologize for my choice of spicy language but there are no other words to accurately convey what occurred with Neurologist #1 or to describe him in his professional capacity.  We left the office but as I carefully traversed down the parking lot hill with my recently replaced left hip to pick my Mom up at the top, near the entrance to the office, I was getting angry that this doctor was going to be paid by Medicare for what had just taken place when he should have been reported to the New Jersey State Board of Medical Examiners for both his inept Treatment Plan and the condescending manner in which he had treated his patient.

After helping my Mom get back safely into our car, I went back into the converted home office and saw Neurologist #1, already dressed to leave, joking around behind the counter with his Office Manager. They looked at me as if I had come back to find lost eyeglasses and I said firmly, “My Mom’s diagnosis is, what it is, but all you did in that excuse for a Consultation was remove all Hope my Mom and I had built up in anticipation of this meeting with you.  Your Treatment Plan makes no sense and if someone treated your mother in the same patronizing manner as you treated mine, you’d be incensed.  How you received positive reviews on Physician Rating websites is beyond me.”  I then turned around and returned to the car and comforted my Mom.   Thankfully my Mom is perceptive enough to realize what she had just experienced so we proceeded to “turn the page” and waited for her appointment with Neurologist #2.

Neurologist #2 – Finally, a THOROUGH and Compassionate Professional

While we were not set to meet with Neurologist #2 for 2-3 weeks, when I made the appointment I had asked the Office Manager to call us for an earlier appointment if another patient cancelled.  Almost like a sign from above, we received that phone call 3 days after the above “Consultation” with Neurologist #1 and were scheduled to meet with Neurologist #2 the next day, Saturday.  Wait, a doctor who works on Saturdays?  As I said above, you don’t get a second chance at making a first impression but this time that first impression was of a dedicated and compassionate doctor who tried to be available when she was most needed by her patients.  I again gathered together all of the diagnostic information referred to above and brought it to the Consultation.  We parked in a handicapped parking spot (my Mom has a Handicapped Placard) and since the entrance to the doctor’s office was a bit of a walk, we easily got a wheelchair for my Mom and wheeled her to the office via the wheelchair ramp.  For this Consultation, I did not need a Walking Stick just to get out of the parking lot.

Neurologist #2 to Neurologist #1  – “From the Sublime to the Ridiculous.”

After filling out various medical and insurance forms while this doctor reviewed the same exact diagnostic information I had given to Neurologist #1 only to watch him cast it aside to ask us what we were doing at his office, Neurologist #2 gently came into the Exam Room and introduced herself to my Mom.  She immediately demonstrated her specific knowledge of my Mom’s condition and then sat down and listened to me, my sister and my Mom succinctly describe her LHH condition.  She asked questions to verify different facts and then she proceeded to conduct a thorough “sensory” exam of my Mom by literally evaluating her nerves’ reactions from head to toe.  Whenever she came across what appeared to be an abnormal reaction, she noted it in my Mom’s chart but then a few minutes later retested that part of her body to make sure of any abnormalities.  Neurologist #2 was gentle with my Mom in both the way she touched and listened to her.  Compared to my Mom’s experience with Neurologist #1, this experience was sublime and the other ridiculous.  Now I know the true meaning of the phrase: “From the sublime to the ridiculous.”

Neurologist #2 – The Exam AND Consultation

At the appropriate time, the doctor was kind enough to entertain questions from each of us and her answers revealed her intentions to perform a COMPLETE WORKUP of my Mom to determine the cause of the LHH and simultaneously start Occupational Therapy to help my Mom combat the day-to-day challenges caused by the condition just in case that is her only recourse or a part of the ultimate Treatment Plan.  In response to our concerns about the culprit being a Stroke and us wanting to prevent future such occurrences since we never witnessed it, the doctor immediately, politely and compassionately “ordered” my Mom to take a Baby Aspirin every day.   She then explained the various diagnostic tests she wanted my Mom to have and asked me to make sure she hadn’t already gone for these tests within the past year since Medicare would not pay for the test under those circumstances.  Those tests are an Echocardiogram and a “Vasc Carotid Duplex, Full.”  The doctor also tested my Mom’s blood for various minerals, B12 and B6 and made sure we were going for a more comprehensive blood test regarding her cholesterol and sugars for which she would have to fast.  My Mom’s Internist had prescribed such a blood test and I had indicated we intended to go for it on Monday.

Immediate Post-Exam Follow-Up with Neurologist #2 / #1 – Nothing

We must have spent more than 30 minutes conferring with Neurologist #2 then left with a laundry list of tests, procedures and occupational therapy prescriptions to follow-up on whereas the Consultation with Neurologist #1 consisted of a 15-minute conversation and the only follow-up required was calling back in a year to schedule another Brain MRI.  I almost forgot, we also left the office of Neurologist #2 with HOPE and SMILES.  More specifically, as we checked out of the office of Neurologist #2, I stopped by the Office Manager’s desk and she handed me several documents.  One was the prescription for Occupational Therapy and another was a 4-page “Clinical Summary” of my Mom’s exam which specifically enumerated both the “Health Issues Reviewed” during the Exam and the currently proposed “Treatment Plan” which included the list of the aforementioned prescribed tests and activities.  When we left the office of Neurologist #1, all we had to do was remember to contact him IN A YEAR TO SCHEDULE ANOTHER BRAIN MRI.  He did not prescribe Baby Aspirin to help prevent another Stroke, if, in fact, one had occurred; nor did he express any interest in examining my Mom’s nerves, heart or Carotid Artery.  Neurologist #2 also scheduled a follow-up exam for approximately one (1) month later at which time she planned to conduct the Cognitive Test which, according to the Office Manager, is standardized and based on written questions and observations used by the doctor each time she conducts such an evaluation.  Neurologist #1 “made up” his Cognitive Test of my Mom on the spot.

Conclusions

Some Doctors Suck & Some Doctors Don’t Care – just like in other Professions

Just like in ANY profession, some doctors are bad at their job and some simply don’t care.  For traditional reasons and because of rote human nature, we don’t expect this in the practice of medicine but as the above proves, it does happen.  Healthy people having to suddenly address a medical problem after many years having never gone to a doctor, or having never been hospitalized, typically don’t ever expect doctors to be lacking in humanity or humility, so for THEM, Physician Rating website grades provide valuable information from which to make choices of physicians.  I pity them because as the above proves, GREAT physician website grades do not make an even good physician.

Word-of-Mouth Physician Referrals are more Reliable that Website Ratings

The fact that Neurologist #1 received GREAT reviews on several Physician Rating websites is exactly why I think such Doctor Rating websites are unreliable.  There are too many unknown variables to render such Doctor Ratings accurate.  Who knows, Neurologist #1 may have received terrible personal news immediately prior to my Mom and I walking into his office and/or he simply didn’t like me?  Maybe Neurologist #1 had phony patients provide the aforementioned Ratings?  I don’t know the answer to those questions but I do know that in my experience as somewhat of a “professional patient,” rating doctors on an objective scale is like devising a rating scale for male or female “attractiveness” or “good-looking-ness.”  Different characteristics carry different weight to different patients just like a woman who is a “9” to me might be a “4” to someone else, and vice versa.  Accordingly, please be wary of Physician Rating websites and try to use social media to network for “Word-of-Mouth” physician referrals because the elaboration of subjective discourse regarding a physician-patient “transaction” will enable you to determine whether or not that physician is appropriate for what you seek and/or need.

Be mindful of the Psychological effects of exposing Patients to Apathetic Doctors

As for the “extraordinary” work performed by Neurologist #2, it is actually commonplace amongst the many WONDERFUL Physicians who listen to their patients and actually care about them. It only seems “extraordinary” when compared to the listless, arrogant, patronizing and condescending work ethic of Neurologist #1.  In that regard, please always keep in mind the psychological effects of exposure to apathetic professionals like Neurologist #1. It’s one thing to remain unemotional to ensure that a patient receives the best possible care but it is an entirely different matter when a neurologist is so indifferent he forgets to “prescribe” something as simple as Baby Aspirins when a patient with LHH presents with the propensity to have Strokes.

Pay attention to the “Little Things”

Please also pay attention to the little things like Neurologist #2 seeing patients on Saturdays or Neurologist #1 not caring about his patients’ safety by building a parking lot more suitable to mountain climbers than to patients with Double Knee or Left Hip Replacements.  (By the way, it is my understanding Neurologist #2 routinely sees patients two (2) Saturdays every month and has been doing that for some time.)

The “right” Physician for a Patient isn’t necessarily the “best” Physician

Finally, the “right” physician for a patient is not always the “best” because in my Mom’s case, for example, I know she wants a doctor who will listen to her and who will be compassionate with her.  For whatever reason, she also prefers a female because at her stage in life she thinks it is more probable she will obtain such care from a female physician.  I know my Mom’s hypothesis is WRONG and that she can receive gentle, compassionate care from a male physician but this is what makes her comfortable and provides her with the “hope” she now needs to battle a very complicated medical condition.

I trust Names are not necessary in this Blog Post to appreciate the learning points of my recent experience with these Neurologists

This was an emotional Blog Post for me to write and I did not feel well while writing it but I think it is important to share what can be learned by comparing and contrasting my REAL experiences with these two (2) VERY DIFFERENT Neurologists.  While I have not named Neurologist #1 in this Blog Post, I usually believe in comic Jay Mohr’s edict to “put your name on it” whenever making complaints but I don’t want to compromise my Mom’s care with Neurologist #2 by purposely “outing” Neurologist #1 when I could just as easily communicate the learning points from these experiences without divulging names.  I hope readers can understand that.

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Adjusting to Ostomy through physicality of playing Hockey

1-Berlcak and Weiss 1

 

April 4, 2014

I recently had the privilege to conduct a Video Interview with the soon-to-be-announced winner of the 2014 “IBD Heroes Award,” Mr. Andrew Berlack.  This Award is being funded by my Non-Profit Foundation, “Crohn’s Disease Warrior Patrol,” [The "CDWP"] because we want to highlight POSITIVE stories about people with Crohn’s, Colitis and any other Inflammatory Bowel Disease to provide much-needed INSPIRATION living with IBD requires on a daily, hourly and often minute-by-minute basis.  There will be more 2014 IBD Heroes because we want it to be dynamic so that when we find a great story we can share it and showcase that “IBD Hero.”  It looks like the only limitation will be my ability to edit and post the video interviews with the winners!!!!   

I don’t want to spoil the formal announcement of Andrew Berlack’s remarkable story but I think its message is SO INSPIRATIONAL on several different levels that I couldn’t resist providing this “teaser”:

Andrew Berlack WAS a Federal Law Enforcement Officer (he carried a weapon, etc. and was a real Police Officer) and then he got Crohn’s Disease and ultimately had his entire rectum removed and had an Ostomy put in its place.  When he was still working as a Police Officer, but suffering terribly from the unpredictable hospitalizations and bouts with Crohn’s Disease, his fellow police -men and –women donated to him some of their vacation days to cover the growing amount of his sick days to stave off their accumulation from disqualifying him from being a Cop – that’s how special this guy is.  And it gets better …

He was nevertheless forced into filing for Federal Disability and spent the next 4-5 years learning to live with his ostomy before he considered his next step in life.  Most people do this by experimenting with going to different public places with friends or by eating diverse foods.  Not Andrew.  He chose to assimilate to the world of being an Ostomate by PLAYING ICE HOCKEY.  It turns out the “physicality” of hockey tested his ostomy to the extreme and those positive experiences of once again “feeling normal” gave him enough confidence to move forward with his Life Plan (he also got MARRIED during this time period) such that he began working a few hours a week and kept a fire burning for one day returning full-time to Law Enforcement.

Being “consistent” and holding down a physically-demanding job with the ostomy took a few years for Andrew to adjust to but those worries paled in comparison to those which required him to sharpen the tough and reactionary mindset required by any law enforcement position.  When I interviewed him, I got the feeling his ubiquitous visualization of 100% positive ostomy outcomes on the physically-demanding hockey rink helped him overcome any such worries but there were practical obstacles which couldn’t be scaled with the help of a slap-shot.  The most significant of which involved the weight and snug fit of the typical uniform belt worn by law enforcement officers as it conflicted with the space needed for his ostomy to lie still and uninterrupted. But one night, completely by chance, Andrew saw a policeman on television wearing all his necessary gear on his suspenders.  It took me a while to grasp the visual he was describing but suffice it to say, horizontal was no good and vertical was life-altering for Andrew as it fulfilled whatever gear requirements he had to carry while preserving the necessary space for his ostomy so as to avoid any messy accidents.

The fire burning inside him was satiated at first by working a few hours each week in Retail Shopping Centers in “Loss Prevention” policing shoplifters.  But once he learned of the different way to “wear” his belt,  he was transformed back to a life of potential normalcy.  In that regard, Andrew most recently got a job as an “Armed Protective Agent” for a private security company where his various law enforcement assignments include protecting government witnesses and the like.  He is not “back” on the police force YET but he is back working and helping enforce the law and living out his dream of protecting people which he thought was lost due to his Crohn’s Disease and the ostomy.

Using our Minds to Teach our Bodies

I am presently organizing some National Hockey League (NHL) surprises for Andrew as his “IBD Hero” Award and you will hopefully hear about it through various promotional efforts but I found the power of his mindset as strong as any medication I have ever taken in my 30 years with Crohn’s Disease.  I was also amazed he got married during the middle of his acclimation to the ostomy and while being technically “Disabled.” That proves there’s hope for fools like me who stop dating when “the shit hits the fan” for fear of harming what otherwise might be “the relationship” I’ve been seeking my entire life.  That got me to thinking how Andrew’s story is inspirational on a variety of levels and thus I defer to readers of this Blog Post to take from it what you need in order to overcome the obstacles of Inflammatory Bowel Disease which you face and resume your life pursuits.  The life dream may be a little different after a diagnosis of IBD but the fire can burn a long time when we use our minds to teach our bodies.  leave a  comment  BUTTON

4 Tips for Helping You Cope with Breast Cancer

Breast Cancer March 28 2014

This guest blog on breast cancer help was written by ShareCancerSupport.org, a non-profit organization dedicated to helping women facing breast and ovarian cancer. For more information, visit their website.

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A breast cancer diagnosis can be scary, and it rightfully should be. If you or someone you know just got this heartbreaking news, you may be wondering how you will go on, and what to do from here. Cancer and its correlating treatments can bring about both emotional and physical changes, and here are a few ways to help you cope with these changes and the thoughts, feelings and emotions which often accompany them.

 Talk About It

Whether it’s to a friend, family member, a pastor, rabbi, co-worker, or your own personal God, talk about what you are feeling and going through. Don’t struggle and keep your thoughts, feelings and emotions to yourself because it will make you feel “healthier,” or at least more “normal,” if you let them out, and get them off your chest. In that regard, scream, cry or do whatever you must in order to get those sensations out. Keeping them inside your body will do you more harm than good, and by sharing these thoughts, feelings and emotions you will be giving your loved ones their desired opportunity “to be there for you.” It will also get rid of a great deal of anxiety when you share your feelings with someone who listens to you.

Live Life One Day at a Time

With all that lies before you, it can seem overwhelming trying to think about what will happen in the future. Therefore, take time each day to do things that make you happy, and be around positive people who love you. Focus on making it through one day at a time, and not trying to think about what will happen next week, month, or year.  Just put “one foot in front of the other” to get through difficult days.

There will also be days when you can’t do anything but cry; and you need to understand that’s “ok” due to the overwhelming nature of your diagnosis.  This reaction is a perfectly normal response to coping with something so huge.  More importantly, never be ashamed to let people see you cry. You are human and have emotions like everyone else.

Take Care of Yourself

If you feel like going to a movie and going shopping do that! If you feel like curling up on the couch with a good book, that’s great too. Take advantage of offers you get for help around the house, with childcare or a meal. Eat a healthy diet, and take all your medications as prescribed. If you are tired, make sure to rest, and never try to push yourself to do something you truly aren’t up to doing.

Remember You Are Not Alone

Last, but not least, always remember that you are not alone in this. Thousands of women every year get this terrible diagnosis, and there are support groups everywhere which can help you find people to talk to.