MGK Radio: Ben Heywood, Patients Like Me

If you’re new here, you may want to subscribe to my RSS feed. Thanks for visiting!Ben Heywood  from PatientsLikeMe.com joined us this morning for a far reaching interview that covered ALS (aka Lou Gehrig’s disease), his brother Stephen’s struggle with the disease which ultimately lead to the creation of the outcome based patient data website [...]

Share and Enjoy:
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • MySpace
  • Kirtsy
  • Digg
  • StumbleUpon
  • LinkedIn
  • email
  • Tumblr
  • Ping.fm
  • Reddit

Stuff That Caught My Attention

by Steve on 8, February, 2010

News Stuff

Science Stuff

Autism Stuff

Parenting Shortcuts, Tips & Tricks Stuff

Share and Enjoy:
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • MySpace
  • Kirtsy
  • Digg
  • StumbleUpon
  • LinkedIn
  • email
  • Tumblr
  • Ping.fm
  • Reddit

Post to Twitter Tweet This Post

Ben Heywood  from PatientsLikeMe.com joined us this morning for a far reaching interview that covered ALS (aka Lou Gehrig’s disease), his brother Stephen’s struggle with the disease which ultimately lead to the creation of the outcome based patient data website www.PatientsLikeMe.com and in a larger sense what REAL health care reform looks like.

Never heard of them? Here’s a brief description of the business take from their website:

Founded in 2004 by three MIT engineers whose collective experience spans from running the world’s only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig’s disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We’re committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen’s care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have led to PatientsLikeMe, a new system of medicine by patients for patients. We’re here to give patients the power to control their disease and to share what they learn with others. We’re here to help you.

Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we’ve created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you’re interested in working together to achieve our goals.

Our operating costs will be covered by partnerships with healthcare providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure.

So, how does a topic like this relate to our mission here at MyGreatKid.com?

It’s really three fold and covers much of what we hold valuable here:

  • Their story is, at it’s most basic level, a love story.  Not the classic boy meets girl / girl meets boy love story but a family love story involving three brothers and a family facing off against a terrible disease.
  • It’s a story about sharing and openness.  Rather than turtle up in the corner crying “whoa is me” they mustered their resources, network and creativity to fight for their brother’s health and well being and in the process are literally changing the lives of ten’s of thousands of people.
  • Finally, it’s a story about the remarkable power of technology and it’s amazing ability to drastically change our lives – both now and into the future.

By combining all three of these areas, what started as a quest to help their brother, broadened to a quest to help other’s in a similar battles and is now branching out to changing the entire health care industry.

We talk a lot about the future on our show and on this website because when we’re talking about our kids and how best to prepare them for successful futures you’ve got to live within one foot in the present and a second one in the future.  The challenge with trying to do that of course is that the present is changing so fast that the future becomes more and more difficult to predict.

What is undeniable though is that that the Internet and technology are opening up new pathways to every area of our life from how we gather knowledge, what kind of information we’re able to gather, how we can share that information, how we can network and build relationships with others and at a very real level how we live and experience every moment of our lives.

Folks like the Heywood brothers are pioneers on the leading cusp of that change and that’s why we were so thrilled to introduce them to you.

In addition to the PatientsLikeMe.com website the brother’s were also involved in a documentary  - So Much So Fast – about Stephen’s journey and ALS.  The movie was well received by critics and recognized at numerous independent film festivals.

FRONTLINE: so much so fast | PBS

FRONTLINE: so much so fast: ben heywood’s new web site | PBS

So Much So Fast – Official Film Site

FRONTLINE: so much so fast: “guerrilla science” | PBS

“Given my status, what is the best outcome I can hope to achieve, and how do I get there?” - Jamie Heywood on the role and purpose of healthcare

Share and Enjoy:
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • MySpace
  • Kirtsy
  • Digg
  • StumbleUpon
  • LinkedIn
  • email
  • Tumblr
  • Ping.fm
  • Reddit

Post to Twitter Tweet This Post

You’ve probably heard a lot about the study that came out recently about the amount of time that kids 8-18 are consuming electronic media.  I’m reading the full study now and will probably comment on it later but wanted to share this PDF summary presentation from the study.  Interesting stuff (especially if like me,  you like being able to visualize what numbers and facts look like), great stuff.

Generation M2 – Media In The Lives of 8 to 18 Year Olds

Full Study: here

Share and Enjoy:
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • MySpace
  • Kirtsy
  • Digg
  • StumbleUpon
  • LinkedIn
  • email
  • Tumblr
  • Ping.fm
  • Reddit

Post to Twitter Tweet This Post

MGK Radio: The Out-Of-Sync Child

by Steve on 3, February, 2010

Play

Itchy tags.

Doesn’t like socks.

Won’t sit still.

Always fidgeting and moving around.

Sensitive to sounds.

Sensitive to light.

Difficult time properly using pens, pencils, etc.

Could it be you’ve got an Out-Of-Sync child?

These days it seems like there’s a condition for everything under the sun.  If your child (or you even) does anything short of sit still and follow directions there’s got to be something wrong with them, right (of course if they do just sit still and follow directions that probably indicates a problem too, something like “Passive Follower Disorder”)?

So what does being “Out of Sync” mean?

It’s actually another way of saying “Sensory Integration Dysfunction” or the more recent name “Sensory Processing Disorder” ~ yeah I know I was just complaining about giving every childhood quirk a “disorder” label.  Honestly,  since I’m not a doctor / psychiatrist / therapist I don’t really like using the whole “disorder” / “dysfunction” labeling at all …. but it’s what they call it so you have to at least understand that’s the official name.

Enough name calling ….. so what is it?

Long definition short, it’s simply that your sensory systems (touch, vision, hearing, taste, smell, position and movement) are not processing the wealth of information coming into your body and brain in a way that allows you to make the “proper” responses.  This could be because your system is hypersensitive ( ex. – a soft graze of a feather on your hand feels harsher, stronger and more abrasive) or hyposensitive (ex. –  pressure that someone else would feel barely registers with you).

Why some kids have systems that are processing differently is a subject of much debate, however, the fact that it’s occurring is not.

For someone who questions the validity of this kind of thing or says it can’t really happen the way I’m describing I frequently explain it this way (it’s a good way to end the argument).

“You’ve probably experienced an Out-Of-Sync system and actually probably even experienced both extremes.”

Blank stare or denial generally inserted here.

“Okay, we’ll start with Out-Of-Sync to the hypo end first.”

“Have you ever been to a party and seen someone who’s drunk?  They stumble around uncoordinated,  talk too loud,  have trouble understanding what’s going on around them,  pretty impervious to pain, etc. – right?”

Most people agree they’ve seen this.  Some as you talk you can tell are even reliving it.

“Well,  that’s an example of a sensory system that’s been made hyposensitive – via a drug – but still hyposensitive.”

“Now, for the example of a hypersensitive system ….. check with that person in the morning.”

Now, is being drunk the same same as having a legitimate challenge with your sensory system ~ no, but similar.  The difference of course is that being drunk is something that YOU’RE doing to your system and it wears off.  Having a legitimate sensory processing challenge is something your system is doing on it’s own.  However, either way your sensory system is not operating within the confines of what is classified as “normal”.

Being normal is vastly overrated, however, in the case of someone facing challenges caused by a sensory processing challenge these sensory differences drastically impact their lives and their ability to be productive.

We interviewed Carol Kranowitz because, while she didn’t invent these terms or discover these challenges, her series of books, starting with “The Out-Of-Sync Child” have probably done more to help parents and teachers facing these challenges than just about anything else out there.  Her methods and tips for helping children facing these challenges have also improved both the atmosphere in many a household and the productivity in many a classroom.

Bottomline – if you have a child (or you are) facing Sensory challenges you can’t ignore her books.

Oddly enough, there’s many tips, techniques and approaches that you’ll find work amazingly well for folks who don’t have these challenges formally, but do sometimes feel overstressed and overwhelmed because of everything going on around them in their lives.

A quick story to illustrate that point.

Sensory challenges have been a frequent and long lasting challenge for my son (I don’t call them disorders because I don’t know that they are for a lot of kids – they’re just differences which in certain scenarios pose challenges).  In his classroom two easy, cheap but amazingly productive tools that help keep him “calm” and more “in sync” are a Theraband strap wrapped around the bottom of his chair and a “wiggle” cushion on his seat.  Both give him more sensory input while also allowing his wiggling to be less disruptive.  The funny thing is that he’s never had a classroom yet where the other children in the class aren’t always trying to swipe them and use them for themselves – not to be mean but because THEY like the way it makes THEM feel.  One classroom finally ended up putting Theraband straps around the bases of all the chairs in the classroom and the teacher was SHOCKED at home much calmer the class was and how much better they were able to sit and concentrate.

Which reinforces the point that I make frequently which is that many of the things the schools label as being “special education” tools and resources are only special because they don’t let all the kids in the school use and benefit from them…..but that’s a post for another day.

Enjoy the interview.

Some great links ….

Share and Enjoy:
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • MySpace
  • Kirtsy
  • Digg
  • StumbleUpon
  • LinkedIn
  • email
  • Tumblr
  • Ping.fm
  • Reddit

Post to Twitter Tweet This Post

Play

How can you beat the story of a Mom that starts a business to do research on how to find quality, safe, fun toys for your kids?

Our interview with Marianne Szymanski from “Toy Tips” gave us some really great information on finding toys that are safe for our kids bodies and brains while still being safe on our wallets.

Share and Enjoy:
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • MySpace
  • Kirtsy
  • Digg
  • StumbleUpon
  • LinkedIn
  • email
  • Tumblr
  • Ping.fm
  • Reddit

Post to Twitter Tweet This Post