Tag Archives: health

It’s the birthday of TuDiabetes!!

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In March of 2008, we started TuDiabetes because we saw that too many people with diabetes were feeling isolated instead of benefiting from the shared experience they could have by connecting to other people touched by diabetes.

Today, Diabetes Hands Foundation‘s networks allow members to find support locally and globally. Our more than 23,000 members describe the TuDiabetes family as a lifeline, a source of guidance, a sanctuary, and even a college education! We proudly connect advocates, artists, dreamers, thinkers, and people touched by diabetes of all types so that all of us may live a more expansive life with diabetes.

I sit back and reflect on where we were five years ago and where we are now:

- I have learned to stay flexible, both about my diabetes (not pretending to be perfect) and in the way we do things on TuDiabetes and the Diabetes Hands Foundation (adapting to changing circumstances, challenges, and signals along the way).

- I am more hopeful than ever: I have had the opportunity to talk with (and share the conversations on video) with some of the world’s most brilliant minds working to make our lives better and one day have diabetes be a thing of the past.

- I have witnessed the power of social media beyond socializing: seeing how connected people touched by diabetes now feel better understood and more empowered. Who would have imagined this when MySpace was the big thing?

On our fifth birthday, please help us keep going strong in our mission to improve the lives of people living with diabetes worldwide.

If all members of TuDiabetes donate $5, we will raise more than $100,000. Our goal is less ambitious: we are seeking to raise $20,000 before the end of March. So we ask you to give us 5 dollars, or more if you can.

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Thank you for your support! And here’s to another 5 years!

Alzheimer’s: Complaints of a Dutiful Son

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I have been struggling for a little over a year now… well, I may have been struggling for longer than that, but the past 16 or so months have been a particularly uphill struggle. My mom is now 82 (she would kill me if she knew I was sharing her age online… again!).

In late 2010, she moved to the Bay Area, where I live with my family. Since then, we started noticing clear signs that her memory wasn’t completely working the way it used to. When you consider this was someone who had a memory that I almost wished she didn’t have at some points (if you know what I mean), this was a major change for me as her only child.

In 2011, things got to a point where a change was clearly needed: her memory lapses got too scary and potentially dangerous to her and to others. She stopped driving and eventually, we found her a great independent living residence within 20 minutes from us and got her an amazing geriatrics doctor, Dr. Ann Chodos. Since then, her memory hasn’t gotten better but we have learned little bits here and there of how to cope with it.

The excerpt of the documentary Complaints of a Dutiful Daughter below gives some hints of things you can do as a child of a person experiencing clear signs of dementia and/or Alzheimer’s.

Besides this excerpt, you cannot find any more of the movie available online for streaming. Also unfortunately, the documentary can only be ordered here.

Our diabetes networks go mobile!

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Last month, we announced the launch of the EsTuDiabetes mobile application for iPhone and Android:

(Download it for free at: http://road.ie/estudiabetes)

Today we’re announcing the launch of our TuDiabetes Mobile application for iPhone and Android:

(Download it for free at: http://road.ie/tudiabetes)

And next month we will be launching the HealthSeeker mobile apps for iPhone and Android…

We’re very excited about being able to give “legs” to our networks, so that they can be taken on the road by all the people who can benefit from them!

10 People to Follow in Social Media + Health

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Healthcare is a broad sector and social media is even broader. But it turns out that not too many people “get” the two and make it possible for others to do the same thing. So I thought I’d share ten people on Twitter who I think do a very good job in different ways of explaining how social media and health go together.

This is by no means a comprehensive list (it means, I am sure I left someone out so please don’t feel offended if I did) but it’s just a list of folks I particularly find useful to follow and read when it comes to Social Health, the intersection of Social Media and Health. I took the liberty of copying their Twitter bios as they stand today.

@jonmrich – Jonathan Richman, “Former pharma guy now preaching digital to every pharma & healthcare company that’ll listen. Happily spending my free time w/ my amazing wife & daughter.” I had the chance to meet Jonathan in 2009. Today, in my opinion, he is the go-to person for any group that seeks to “GET” social media and health.

@SusannahFox – SusannahFox, “Internet geologist. Health care gadfly. Social to a fault.” As Associate Director of Digital Strategy at Pew Internet, her title is nowhere near as cool and knowledgeable as she is to meet and listen to in person.

@KevinKruse – Kevin Kruse, “President, Kru Research & Editor, E-Patient Connections newsletter, focused on how to reach & educate digital health consumers. ePharma mktg, health 2.0.” I had the chance to meet Kevin in 2010. His ePatient Connections conference is a must-attend for all people interested in impacting this sector.

@whydotpharma – Silja, “Passionately believe pharma can create better patient-focus through social media Co-founder of#hcsmeu Healthcare and Social media in Europe tweet up.” I had a chance to meet Silja in 2009 in Switzerland. She gets it WAY from before the time she was helping others get it!

@swoodruff - Steve Woodruff, “The real-time, 360-degree Steve Woodruff. I interact here. Want pharma/healthcare?@impactiviti. Business? @connectionagent….” Not too many people listen as attentively as Steve. He really has mastered this art and turns it into lessons for all around him to learn.

@iftfhealth – IFTF Health Horizons, “Health Horizons at Institute for the Future scans for signs of change over the next 3-10 years for a deep understanding of global health. Creators of BodyShock.” I first heard of IFTF while I still lived in Palo Alto, where they are based. They are a brilliant think tank of people that think about the future.

@wegohealth – WEGO Health, “WEGO Health is home to Health Activists. These influencers, organizers, leaders and contributors are passionate about helping others lead healthier lives.” I first met Jack, their CEO,  in 2009. They provide an extraordinary space for health activists to do what they do best.

@boltyboy – Matthew Holt,” THCB, Health 2.0; Chelsea fan; husband; father in a few months.” I have known OF Matthew since 2007, when then the first Health 2.0 conference took place. I finally met him at Health 2.0 in San Francisco in 2008. I still struggle understanding when he speaks so I prefer to read him. :)

@EndoGoddess – Jen Dyer MD, MPH, “Stylish pediatric endocrinologist, researcher, former Texan who loves NYC, beginning foodie who believes in the power of balanced nutrition to prevent disease.” Not too many doctors (yet) get the importance of social media in healthcare. Jen is WAY ahead of the curve. She’s out there on Twitter and I was glad to meet her in 2010!

@shwen – Shwen Gwee, “Founder: Social Health (sxsh.org), Social Pharmer (SocialPharmer.com), Med 2.0 Blog (Med20.com)” As knowledgeable about this space as he is a nice guy to chat to. Had the chance to meet him at the 2010 ePatient Connections conference. Update (05/12/11): Shwen is joining the health practice at Edelman as VP of Digital Health.

P.S. Other than Jen Dyer, I have intentionally left out people from the DOC (Diabetes Online Community). I wanted this list to be useful to everyone, in the diabetes space or not.

Read a list of People With Diabetes to Follow on Twitter.

En Facebook también se juega para controlar la diabetes

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Hay que reconocerlo: Facebook es un gigante. Más de 550 millones de personas en el mundo usan la popular red social, y entre latinos e hispanos es el cuarto sitio web más popular. No sólo resulta útil para mantenerse en contacto con los amigos y familiares que viven en otras partes. Es fuente de distracción e información para muchas personas que usan la página incluso más frecuentemente de lo que revisan su email.

A fines del 2009, viendo esta tendencia y también observando la cantidad de personas en Facebook que participan en los llamados juegos sociales (La Granjita es uno de tantos juegos disponibles en Facebook), en la Diabetes Hands Foundation (DHF) nos avocamos al desarrollo de un juego en Facebook para ayudar con el manejo de la diabetes.

Hasta entonces, en la DHF nuestra experiencia había sido liderizando comunidades para pacientes con diabetes, como EsTuDiabetes.org y desarrollando programas para crear consciencia sobre la diabetes, como La Palabra en Tu Mano y La Gran Prueba Azul.

Con el patrocinio de la empresa Boehringer Ingelheim Pharmaceuticals y en colaboración con el reconocido Joslin Diabetes Center, de Boston, empezamos a darle forma al juego de Facebook llamado HealthSeeker, el cual fue lanzado en inglés en junio del 2010. Hoy en día está disponible en español para todos los usuarios de Facebook, visitando la dirección www.ExplorandoTuSalud.org.

HealthSeeker ofrece sugerencias a los jugadores para mejorar su estilo de vida y nutrición, y así controlar la diabetes. Uno puede invitar a sus amigos de Facebook (de hecho, es más divertido el juego cuando se juega con los amigos de uno) como fuentes de inspiración y motivación continuas para mejorar su comprensión y control de la diabetes.

El juego ayuda a hacer frente a dos de los factores de riesgo asociados a la incidencia de diabetes tipo 2: la falta de actividad física y los hábitos de comida no tan saludables que muchas veces tenemos.

¿Cómo funciona HealthSeeker?
 El juego motiva a los jugadores a que emprendan sencillos retos diarios como consumir pan integral en lugar de pan blanco o caminar alrededor de la manzana luego de la hora de almuerzo, con el fin de alcanzar las metas de su estilo de vida.

Las metas de estilo de vida incluyen comer en forma más saludable, alcanzar un peso óptimo, mejorar el control de la diabetes y disminuir los factores de riesgo cardiovascular.

El juego cuenta con misiones y actividades que los participantes seleccionan. Estas deben completarse para poder avanzar. La gran mayoría de las actividades del juego se completan en la vida real, no enfrente de la computadora. Esto tiene sentido, considerando que no se pueden quemar muchas calorías sentados sin mover más que los dedos sobre el teclado. ☺

A medida que los participantes completan sus actividades y vuelven al juego para informar acerca de su avance, reciben medallas o puntos y sus amigos de Facebook pueden enviarles elogios. También los jugadores pueden compartir sus logros en su muro de Facebook, en Twitter o retar a sus amigos a completar las mismas misiones y actividades. Esto forma parte del carácter contagioso del juego y es parte de lo que lo hace más divertido de jugar junto a los amigos que uno tiene en Facebook.

Hoy en día más de 5,000 personas juegan HealthSeeker y esperamos seguir recibiendo más jugadores. El juego está disponible en español de forma gratuita en www.ExplorandoTuSalud.org. ¡Espero verte a tí y a todos tus amigos de Facebook jugando pronto, para explorar tu salud y descubrir nuevos hábitos para una vida más sana!