e-Patient Dave

Power to the Patient!

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e-Patient Resources for Parkinson’s Disease

I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.

Here’s an example of why – a true story from tonight’s email.

Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:

This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem.  He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is:  is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.

He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!
Blew my mind. We have a long way to go, Dave.

———- Forwarded message ———-
From:
Date:
Subject: Biking PD study
To:

I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?

http://www.msnbc.msn.com/id/3032619/vp/26510952#26510952
ABC Good Morning America story with Dr. Jay Alberts

[Read more…]

Facing Death – With Hope

Click to enlarge

Update: during my trip to the Mayo Clinic as Visiting Professor in 2015, their “Healing Words” in-patient TV program invited me to an interview and reading about this subject. Post and video here.

An updated edition of the “Facing Death” chapter from my first book, with a new prolog

______

This book is for people who are staring death in the face and are wondering, “What on earth do I do now?”

Every day in America, 4,000 people learn they have cancer. Other patients get other mortal diagnoses, and still others learn their cases have worsened. They all come face to face, for the first time, with the question: “Am I going to die, now? Has my time come?”

In 2007 it was me: I learned I was almost dead with Stage IV cancer, and I stared into that abyss. The story of that diagnosis, drama, treatment and success is in my first book, Laugh, Sing and Eat Like a Pig. It includes a chapter on facing death. I’m self-publishing an updated version now, stand-alone at a minimal price, in the hope it will help others on their journey.

The title talks about hope, but this book does not say “Think lovely thoughts and you’ll live forever.” To the contrary, it says:

People who’ve faced imminent death share a certain awareness. If you’ve just joined those ranks, welcome. You should know, some of us live through it, and some don’t. You will be one or the other.

In the end we’re left with the question: What could be said that would make any difference?

There are no guarantees. It’s not scientific to expect extraordinary results; but neither is it scientific to deny hope. This booklet’s about being awake to life, for as long as we have it.

Details

Release Date: September, 2011.

Table of Contents

  • Prolog: Discovering the Cancer, Discovering the Odds
  • Facing Death
  • “Prepare Yourself  to Follow Me.”
  • Radical Acceptance
  • “I don’t know.  But we will try.”
  • About hope
  • Being scientific  about the unknown
  • Reality is what it is – whether we know it or not
  • “We came to give you hope”
  • “An incredible life force”
  • Epilog

Size: 5×8,” 38 pages

ISBN-13: 978-1466302891

Why print something that was already blogged?

I want everyone who wants this message to be able to have it, so the body of the book (the reprinted chapter) was published last year on KevinMD’s blog, where anyone in need can read it free.

But a lot of people like booklets, especially for a topic like death, where support groups meet, churches give handouts, etc. Plus, this edition includes a new prolog, which provides context. It makes this a standalone, self-sufficient book.

And in the process, I needed to add a (short!) recap of my story, for newcomers. And I saw several things I wanted to add.

About the Price ($5.00):

I’m self-publishing this using Amazon’s “CreateSpace” system, which is pretty amazing in its automation. (My career was in graphic arts technology, so I have some sense of what it means to do it well.)

The CreateSpace pricing system is pre-defined and not bad at all! I used every option I could to keep the price low without selling at a loss.  And at 38 pages with color cover, it’s cheaper than copying it at Kinko’s.

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Costco magazine’s debate for June: “Should you seek medical information online?”

Update June 8: I’ve edited this text in an effort to make it more constructive and informative. I did this after getting feedback from several people that it came across as more negative than I had intended. Thanks for the feedback! Everyone I know agrees that healthcare would improve if we all listened better, and I guess that includes bloggers…

As a longtime loyal member of Costco, the warehouse shopping club that sells nothing but great quality at amazing prices, I gladly said yes when they approached me to participate in their monthly “Informed Debate” feature, because the topic was seeking medical information online.

The feature is in the June edition, here. (It’s page 16 in the print edition.) I didn’t get to compare submissions with my “opponent,” so it wasn’t really a debate; we just submitted our thoughts. I’ll paste in my 400 words here, and then I’d like to address the concerns expressed by the others.

So: should you seek medical information online?

My response: Yes.

Here’s my response as I submitted it. The version that went to print was edited for style and length.

[Read more…]

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The “Sing” in “Laugh, Sing, and Eat Like a Pig”

Front coverTime Video has just published a video (below) that rocked me on this Sunday morning. It’s time to talk about something that used to be an important part of my life, and will be again: barbershop harmony.

Readers of my first book Laugh, Sing, and Eat Like a Pig know that before, during and after my disease, a huge part of my support came from the men in my chorus, the Nashua Granite Statesmen. At the time they were the northeast champions of the Barbershop Harmony Society, formerly known as SPEBSQSA. They’re the “sing” in the book’s title: shortly after learning I had cancer I asked my physician (Dr. Danny Sands) if I should stop going to rehearsals to save energy, and he said no: at times like this it’s not good to start dropping life activities that you love.

Amen. And I told people that my cancer Rx included singing – “Could be worse!” [Read more…]

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2011 Major Projects: Opportunities and Challenges

My first year full time in healthcare completed on February 28. It’s been terrific, and I’ve been left with a huge number of fascinating project ideas – too many to sort out by myself. So I’ll do the modern thing: discuss it on social media with my peeps! (That’s “people,” for you non-Web-2.0 peeps.)

Some of these are public service ideas, some are purely my business. The point is that there’s clearly an audience for patient engagement, and a big agenda has emerged. I’m open to all ideas for how to make every bit of this a reality in 2011. (Yes, this year!)

Discuss in comments, or contact me via my contact page.

Project 1: “A Million Errors Fixed” [Read more…]

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Unboxing “Laugh, Sing and Eat Like a Pig”

For reasons I’ll never understand, “unboxing videos” are a big thing these days: some geek will turn on a camcorder while they unpack some cool new gadget they just received. Examples: Unboxing the iPhone 4 (simplistic, unedited, 1:29), Xbox 360 Unboxing and Review (slick, fancy, edited, 5:58).

Well, my friend Mark Graban, author of the excellent healthcare improvement book Lean Hospitals, just received his copy of my new book Laugh, Sing and Eat Like a Pig (Amazon), and he was so excited he decided to do an unboxing video of it.

Enjoy. :–)

For more information see the book’s web pages. Thanks, Mark!