5 posts from September, 2007

PatientsLikeMe at Health 2.0 Conference

Posted September 23rd, 2007 by

PatientsLikeMe attended the inaugural Health 2.0 conference in San Francisco. Congratulations to Matthew Holt and Indu Subaiya for putting on a great show. Ben Heywood participated in the Social Media panel along with other great health 2.0 companies, DailyStrength, OrganizedWisdom, Inspire, MedHelp, and Sophia’s Garden. The high quality of each company’s offering ensures that patients will continue to have many destinations to share their health situations, get support, and even answers.

health 2 conf

At the end of the social media panel, the 500 conference guests were asked which company they’d choose if they were an e-patient. PatientsLikeMe received 39% of the votes. While we appreciate this high praise from our peers, our mission is to positively effect patient outcomes through our site and to improve healthcare overall. We’re honored to be a part of this movement with other leading companies in the space.

PatientsLikeMe Parkinson’s Patient Spotlight: chethk

Posted September 15th, 2007 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature chethk, a two-star member.

Where do you find joy?

I find joy by being with my family, friends, co-workers, and customers; participating in life’s daily adventures and challenges; and giving 110% effort with every task I undertake everyday.

What person do you admire most?

My wife Kate for being the mother of my two children and putting up with me.

How have you evolved since your diagnosis?

I have had Parkinson’s for 14 years. It started as a nuisance, it is now a disability. I don’t believe a person evolves when facing a progressive disease; rather, a person either resolves to fight it everyday or give in to the symptoms and wither away. I have made the choice to find a way to overcome the ever-changing symptoms of Parkinson’s everyday.

What have you learned from PatientsLikeMe?

I have learned there are others with PD who have the same emotions, fears, anger, and resolve to fight this disease until a cure is found. We do not want others to feel sorry that we have Parkinson’s, but we do appreciate their acceptance of our outward symptoms and everyone’s financial donations to medical research that will lead to a cure.

PatientsLikeMe member amorton

PatientsLikeMe MS Patient Spotlight: jtjackson

Posted September 15th, 2007 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature jtjackson, a two-star member.

What is your favorite time of the day?
My favorite time of day is the morning, about a half hour after being up (between 6:30 and 7:30 a.m.), having my first cup coffee and thinking about what I can do today. I always have so much energy at this time and feel like I can conquer the world. Usually, reality sets in about 11 a.m. that I really do have MS and I need to slow down and rest (due to fatigue) so I am able to function enough to do the easy stuff.

What makes you laugh?
My two daughters (ages 27 and 17) really make me laugh (belly laugh) when they get to talking about themselves, their lives, people they’ve met – they literally do impressions of all kinds of people, from the abled to the disabled (they call them and me the “special” people), and watching them do their thing really makes me laugh… even at me!

What are people most surprised to learn about you?
Most people are surprised to learn that “what you see is what you get” when it comes to me. I’m down to earth, speak honestly and am pretty straight forward about me/you, my feelings about things, about the true positives of life no matter what cards one is dealt. I think most people are surprised that my life’s tune has really never changed, even though my circumstances have.

How has PatientsLikeMe improved your life?
PatientsLikeMe has improved my life by seeing many people who have similar or not-so-similar challenges “living,” I mean truly living, with this disease. Although I have only been diagnosed with MS for a little over a year, it has brought so many changes and challenges that I have dealt with pretty much on my own, and it is truly nice to have a place where I can share if I want to, or just read what everyone else has to share. I feel so “not alone.” Thank you all for being there!

PatientsLikeMe member amorton

PatientsLikeMe ALS Patient Spotlight: swhite.geo

Posted September 15th, 2007 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature swhite.geo, a two-star member.

What are your interests and hobbies?
Since my diagnosis, I enjoy helping others newly diagnosed and getting them on the right track. Then there’s the technological side; I’m always scouring the net for the next gizmo to help me overcome the challenge of life with ALS and keeping that glass half full. Being from Fayetteville, North Carolina, it’s hard not to mention the military, ACC basketball and summer trips to the beach, the mountains and Carowinds. But ALS certainly puts its own twist into all aspects of what we previously called life.

For instance, my love for getting out and hitting that little white golf ball around has transformed into just being able to watch Tiger win another tournament. Other interests have been gardening, racquetball, tennis, beach volleyball, tinkering with the cars and going to any live sports event or concert. I’m also taking full advantage of the free movie admittance at the local theaters weekly.

What accomplishments are you most proud of?
My time in the US Air Force has been both the most rewarding and selfless aspect of my life, but I feel I gained so much from those 21 years that I came away from it with the upper hand, even though the reason I had to leave was medical retirement thanks to “Uncle Lou!” Other than that, I’m proud that I completed the “bible-in-a-year” reading, sung on-stage with Karen Carpenter, and that I’m a melanoma survivor.

What are your top three motivators in life and why?
I think the first would have to be what my boys, Shane and Vance, get from seeing how I deal with the challenge that is living with ALS. Second, I owe my life to Jesus Christ, who pulled me from the ruins of an immoral, mortal existence. Thirdly, to learn as much as I can in the time I have left, and to transform that into something I can give back.

What other PatientsLikeMe patients have you enjoyed getting to know and why?
This is the hard one, as I’ve taken something from each one of them and made it a part of me. I was so sad to hear of the passing of David Abell, who was so instrumental in moderating the Living with ALS Yahoo! Group. He was a mentor of sorts, and my wife has had several very educational conversations with his dad, Jerry.

Specific to PatientsLikeMe, BobbyB is about as reliable as they come, but then there’s the twisted humor of Super Dave, always controversial, and others like carylnjay, my overseas penpal Petra, SheilaT, an author, and just anyone who teaches me a thing or two or makes me smile, and those are many!

PatientsLikeMe member amorton

PatientsLikeMe Update: September 2007

Posted September 15th, 2007 by

The buzz about PatientsLikeMe is growing! In August, Business 2.0 magazine and CNN.com recognized PatientsLikeMe as one of 15 companies that will change the world. To be selected, a company must have “the potential to rewrite the rules of existing industries or open up entirely new markets.”

We couldn’t agree with this assessment more; after all, we began with that exact mission. But what’s amazing is that we’re already starting to achieve it. Thanks to the participation of thousands of patients like you, we’re well on our way to creating “a fast bypass around restrictive privacy rules that tie scientists in red tape.”

As part of the implementation of this sweeping objective, we’re pleased to announce the upcoming launch of our HIV community, which we feel is an important addition to our coverage of life-changing diseases. If you know anyone affected by HIV, please send them an invitation to join PatientsLikeMe.

PatientsLikeMe member dwilliams