In the spirit of the New Year, here are some highlights from our recent newsletter.  Read what patients like you have to say about what they’re most interested in learning from other patients this year.

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	(Amy) What are you most interested in learning from other patients this year?
	(bradley25 – Mood Conditions Community)I find I offer advice to patients more often than I listen. Offering advice helps me; it makes me think about what I am suggesting. More often than not, I find I offer good advice that I do not necessarily follow myself. Hearing the words come out of my mouth can cause me to think about why I may not be doing what I am suggesting and to make changes in my own life.
	(mrskidneysurvivor – Transplants Community)There is not any one thing that I can say I am most interested in learning from other patients like me because I gain knowledge and insight from all patients who have had a transplant or who are waiting for one.  We all have experienced or are still experiencing similar situations and take similar medications and cope with our day-to-day health, and I learn from that. Mine has gotten so bad that I have regular grand mal seizures from time to time, and sometimes it’s hard to carry on a conversation without looking weird.
	(prelado – Parkinson’s Disease Community)Of course, how they’re doing with their medicine, mainly if it is the same as mine.
	(irishtxn – HIV Community)How to keep unwanted stress out of my life! It’s hard enough being one of six siblings living in the same town, much less [being the one living] with our mother. I’m not getting any real support from them as I’d like. My siblings do take care of my mother’s prescription costs, but they rarely offer to come in and get my mother out for while. I might rephrase that [it would be nice] to ask her to their homes.  She rarely ventures away from the house unless it has something to do with the church.  Never gets to see the other children unless it is a holiday such as Christmas.
	(slicky – ALS Community)I am like any other patient.  I have not experienced everything.  There is always something new to learn, and I think the best way to learn is to ask other patients on this site.  The doctors can tell you what they know from reading books or other doctors, but getting knowledge from patients firsthand is the best way to learn how to cope or [determine] the best equipment to use, or the best treatments. I am not saying every comment on PatientsLikeMe is right, but most of the information you get on this site really is valuable to all patients and their caregivers.  The best thing is you can choose to try it for yourself or ignore it.  It really is amazing to see all these patients come together to help one another.  There is no stupid question.  If you want to know, just ask and you will get a response. And the best thing is it is from people all over the world, so some countries may have different studies or trials or meds we do not have here in the U.S.  I have talked to people all over the world who have asked me how I have had ALS so long and what do I do to keep going.  I tell them my regimen.  I also tell them I can only tell them what seems to work for me, as most everyone knows ALS affects each of us differently, so what works for one person may not work for another.
	(sunnyt – Fibromyalgia/CFS Community)When I discovered PatientsLikeMe it was a God-send! It was so good to know I was not alone in this. Most people do not believe what we go through. It is so hard to explain the pain and tiredness of this. I know, I was once one of the doubters. This year I would very much like to learn how other deal with this, for one. And what treatments others use also, more alternative treatments. The list goes on…like how to cope everyday with not knowing how you are going to feel, where you will hurt or how tired you will be. I am sure of one thing, I will probably find other answers to questions I did not even know I had! I can not thank PatientsLikeMe enough for the support and information I have gotten in the past year.
	(suevand72 - Epilepsy Community) I don’t really know what I plan on learning this year. I really haven’t given it a lot of thought since I am so busy at home with family and work, and now I am going back to school part-time. I know everyone is just trying to get back to normal after the holidays. But I live in a family where nothing ever slows down. Believe me, you want it to, but it won’t. I do learn more about seizures (epilepsy) each year.
	(Sapphyr – MS Community)As usual, tips for living with a disability that have actually worked.

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  This week on the blog, we’re highlighting some interviews to help you get to know some of the people here just like you.  Here’s an interview with member “angela_b,” a member of our PatientsLikeMe Parkinson’s Community who was interviewed for one of newsletters last year.   Read on to learn more about what puts a spring in her step, how she copes with her Parkinson’s, and what’s she’s learning from other patients.  Enjoy!

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	(Amy) What puts a spring in your step?
	(angela_b) That would have to be my new love for crafting. I didn’t realize how many ideas I had hiding away in my head until just recently. Now, you cannot even mention a shower or party, and I’ll start planning what favors to give.
	(Amy) How do you like to spend holiday weekends?
	(angela_b) I am a hostess by nature – that I get from my momma – so I love to have picnics/parties at the house. Plus it’s easier for me to give the party than to go to one. I have four kids, ages 11, 8, 3, and 1, so you never know what the moods will be!
	(Amy) What is helping you to cope with your condition?
	(angela_b) I have a humongous support system. My family, friends. It’s pretty awesome. Plus, my husband and I just started our own non-profit (Running for Parkinson’s) to raise money and help fund Parkinson’s related issues within our community. We run (he runs, I try very hard to…LOL) and this helps keep me motivated!
	(Amy) What have you learned recently at PatientsLikeMe?
	(angela_b) I’ve learned a lot from lurking. I’ve found many answers, like my cramping when I run is dystonia, and a lot of people have the same sleep issues. I’ve found that we all have a lot of “non-parky” things in common, such as career choices, crafting, running. We are all in this fight together. It’s great to know that I am not alone in this, but surrounded by great, loving, caring people.
	(Amy) Thanks, angela_b!

We’ve been learning about how connected our patients are this week in our blog series called “One for All.”  In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue.  Today, we sit down with one of those members, Diamondlil58.   A true “diamond” in the MS community, she has left more than 16,000 comments to  welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58.

	(Liz) How and why did you start welcoming people?
	(Diamondlil58) I was welcomed to PatentsLikeMe by two lovely ladies – JHCamero and Greeneyes.  Their messages made me feel welcome. I wanted to give back to the MS Community.  I didn’t feel that I knew enough about the disease and the effects it had on others to offer advise in the forum.  But, greeting people is something that I felt comfortable doing.
	(Liz) What type of responses do you get from people you welcome?
	(Diamondlil58) I have received many nice replies from new patients.  Some tell me their experiences,  others ask questions or request help setting up their profile page.  Some want to know my view on therapies and treatments.  I continue to welcome because it has been rewarding to me.  I understand first hand how scary the MS diagnosis can be; how friends and family can’t possibly understand what it’s like to feel the way we do; how we can be perceived as lazy; or the fear of parking in a handicap parking spot and hoping no one verbally attacks us.  Welcoming give others an opportunity to view a profile and helps them see what they can do with theirs.
	(Liz) Do you keep in touch with people you welcome?
	(Diamondlil58) I do keep in touch with so many people that I have welcomed through this site.  Some through Facebook, others in email.  I’ve even met several in the past year or so.  I have built some wonderful friendships here and make more everyday.
	(Liz) What is one thing you’ve learned from looking at new member’s profiles?
	(Diamondlil58) That we have all different backgrounds.  That we are not all the same but we all share one thing in common and that gives us something to build on to support each other.
	(Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
	(Diamondlil58) Absolutely!  I wouldn’t do it if it was negative or wasn’t rewarding.  It’s my way of giving back to the MS Community.  I have a great appreciation for the founders of this site, the staff, and the caregivers that join us.  This site has been therapeutic for me in more ways than one, and I am so grateful that I came across it three years ago surfing the internet looking for information on my symptoms.
	(Liz) We’re glad you did too.  Thanks so much for keeping the wagon rolling, Diamondlil58.  You’re an inspiration.

In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it.  Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others.

One method of reaching out to another member on PatientsLikeMe is by leaving a comment on their profile page.  Often, you exchange comments to inquire about specific data on someone’s profile or to thank them for sharing.  However, one of the most common uses of the comments functionality is for existing members to welcome new members to the community.  This is has been affectionately coined the “Welcome Wagon,” and it is most prominent in our MS community.  Today, more than 71% of members in that community get a comment within the first 2 days.  Receiving a comment from a veteran PatientsLikeMe member when you first join the site is a great way to “welcome” you aboard and make you feel a part of the community.

A large part of the effectiveness of the MS Welcome Wagon can be attributed to a member named Diamondlil58.  Of the 150,000 comments that have been left on PatientsLikeMe, Diamondlil58 has left a staggering 16,000 of them, addressed to over 15,000 different members.  The graph above shows just how extensively Diamondlil58 has connected with the community through commenting.  In the graph, the dots represents patients in our MS community, and the lines represent a comment between them.  Diamondlil58 is the large green dot near the center.  Notice how she has touched both the inter-connected network of patients (on the right), as well as sent out a huge number of comments to others who aren’t yet as well-connected (the moon-like diagram on the left).  A large portion of these comments were part of the Welcome Wagon.

While the Welcome Wagon was started in the MS community, it has definitely caught on in other communities.  Here is a look at how Babsie, an active member in our Fibromyalgia community, has reached out to welcome new members.  Like Diamondlil38, Babsie has helped create a network of dialogue and connection between patients like you.

It’s inspiring to see how one person can touch so many.  Members often tell us how beneficial it is to have a way to find “patients like me.”  (In fact, we cited a few examples yesterday from our research study that shows just how valuable that can be to one’s health).  However, that “find” functionality alone is not what makes this community what it is today.  It’s the people who are using it.  It’s the people who are willing to openly share with one another; the people who reach out to make those connections (sometimes initiated by beacons, like Diamondlil58); it’s people like you who make the most of being a member of PatientsLikeMe.

The next two blogs in this series will include interviews with Diamondlil58 and Babsie.  Stay tuned as we climb aboard the Welcome Wagon and hear what they have to say.

With 13,000+ members, the Multiple Sclerosis (MS) community is currently the largest community at PatientsLikeMe. Many of our members are just as active online as they are off. There are a countless number of ways for people to get involved in supporting research for the disease, and many patients choose to participate in the thousands of walks and runs that take place year round. At PatientsLikeMe, our members have a voice in research by sharing data about their condition.  However, we also support patients’ decision to take their involvement offline.

Earlier this year, PatientsLikeMe introduced a program to support and sponsor Walk/Run teams. We are encouraged by the success this initiative has already seen since its inception. To date, hundreds of people across all our communities have participated in teams sponsored by PatientsLikeMe, with many of those teams from our MS community.

Want to see some of our patients in action? Head on over to the PatientsLikeMe YouTube page at www.youtube.com/PatientsLikeMeMS and check out some of your fellow patients on the move.  All the pictures from the video and more are also in our Facebook photo album, so check them out (and while you’re there don’t forget to friend us either!) Thanks to all who participated in the program and gave us the material for this first video. Keep on walkin’ everyone!

(Special props to our summer intern, Shane, for editing the video and producing the music for it!)