PatientsLikeMe Newsletter Issue 31 - February 2010

MONTHLY MUSINGS

Ever wonder how the data you're sharing on PatientsLikeMe is shaping the future of medicine? Hear it straight from Co-Founder Jamie Heywood. His powerful video presentation from the TEDMED Conference, called "The Big Idea My Brother Inspired," takes you on a journey from the company's earliest days to the groundbreaking learning happening today.

Here's in the Parkinson's Community, we've been learning a great deal lately. We've been checking out photos of a DBS (Deep Brain Stimulation) surgery, discussing the benefits of vitamin B12, looking at the importance of exercise and sharing a number of strange facts about Parkinson's.

There is much more to learn - and even more ways to do it than when we began. What have you learned that everyone with PD needs to know? Share it with us today - and keep "the big idea" behind PatientsLikeMe going.

--Tim Horgan, Community Manager

JOIN THE CONVERSATION

Check out some of the hot topics in the forum. Then jump in with your own questions and answers!

How do you deal with going out?
Are you avoiding social situations because you're afraid your PD symptoms might kick in? Discuss coping strategies for going out to restaurants, parties and more.

Why depression shouldn't be ignored
Depression is common in PD, and research suggests that it may even be one of the first signs of the disease. Share your experiences and discuss when to seek treatment.

Stalevo or Sinemet?
Follow one member's decision process choosing between Stalevo and Sinemet. Which one did he pick? Also, is it better to try one before the other? Weigh in with your stories.

Taking flight with Parkinson's
What do you need to know before you get to the airport? Exchange practical advice for air travel as well as going through security with meds, a DBS implant, canes and more.

GETTING TO KNOW YOU

At PatientsLikeMe, we believe in getting to know the person, not just the "patient." That's why we interview patients each month to find out more about how they approach life. This month we are pleased to feature dede, a three-star member from Connelly Springs, North Carolina.

1. What's on your mind these days?

I am in my late stage of Parkinson's-plus. I understand where my path is leading. I have a desire to help others. I would like to encourage others. Help in any way I can. I'm sick with a terrible illness, but I still have a purpose in life.

2. What do you enjoy about winter?

There is not much about winter I like, especially the temperatures. But I have to admit when I see the snow coming down, sticking on trees and landscaping, it looks like a winter wonderland.

3. How do you keep perspective with your condition?

The way I keep my perspectives in my life is to have confidence in God's spiritual leadership to give me strength. I need to face what lies ahead. We are in the hands of God. I put all my faith and trust in him.

4. Share why you decided to make your profile public.

I think in being open and talking to people that are sick and going through the same thing I am, we could help each other to learn about this disease. Also, we could encourage and help each other deal and cope with what our future holds.

WHAT'S NEW AT PATIENTSLIKEME

• Today, PatientsLikeMe announced the acquisition of ReliefInsite, a pioneering online pain management company. More than 20,000 of the patients across our communities report experiencing pain, and we want to help you manage that pain more effectively. Over time, we'll be integrating ReliefInsite's technology to help you do just that. For more details about the acquisition, check out our press release

• Know someone with epilepsy? Last month, we officially opened the doors to our new Epilepsy Community at PatientsLikeMe. Read all about it in our press release and don't forget to invite anyone you know with epilepsy to join us today.

• Another year, another great round of publicity. In addition to all the recent buzz around Jamie Heywood's TEDMED video, PatientsLikeMe was featured last week in TIME magazine ("Group Therapy"). We also hit the airwaves when Co-Founder Ben Heywood gave a special interview on MyGreatKid Radio (WAAM 1600).

• Got a disease-related walk or run event coming up this spring? PatientsLikeMe will sponsor you! Check out our new webpage about the program and sign up today to have us outfit and sponsor your team. (For those who participated last year, we've given our walk/run sponsorship program a snazzy new name and logo - PatientsLikeMe in Motion). Put your team in motion today!

• Whether you are walking at a charity event or not, we know many of you have asked for tools to help you spread the word about PatientsLikeMe. Fortunately, new 2010 Tell the World flyers are now available for download at the Tell the World page (bookmark it!). Hand them out at your walk/run events, support group meetings and more. And if you're ready to go 2.0 in your efforts, we also offer PowerPoint slidedecks about PatientsLikeMe. A big thanks to all of you for telling the world who we are - and what we're trying to do.

THIS MONTH'S SITE IMPROVEMENTS

We are constantly working to improve our site. In this section, we'll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for February:

• Want to dig deeper into someone's past treatments? You can now view another member's treatment history by clicking on the treatment graph in their profile. As long as that particular treatment is not private, you'll be able to see the member's full history and experience with the treatment.

• Feed your profile with precision. We've now made it easier to find information on the feeds that appear on your Profile page. Click "Feeds" to see your latest updates, what your subscriptions are and who is subscribed to those updates. You can also see different views of your feeds (i.e. all, members, forum, treatments, your own.)

• Like our PatientsLikeMe Picks feature?  Well, it's even better now. We've combined it with the Forum Spotlight section, which means there are even more "don't miss" posts for your perusing pleasure. Find out which topics really grabbed our staff - not to mention our members.

• Get ready to chart a new path. Thanks to your suggestions, we are looking to make some major upgrades to PatientsLikeMe's profile charts. A number of improvements are being piloted in the ALS Community now, and once we test and refine them, we hope to roll them out to our other communities soon. Learn more about our new charting functionality in Co-Founder Jeff Cole's recent blog entry.

 

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