The Value of Openness: The PatientsLikeMe Blog

According to a December 2007 iCrossing survey cited by Jane Sarasohn-Kahn in her Health Populi blog “34% of Americans turn to social media for health research.”

Jane points to PatientsLikeMe and others as “proof of the reality of social media in health is alive and well and healing”, and observes that “increasing numbers of people are reaching out to others for more than the kind of support they might have found in the Compuserve health interest groups in the 1980s; they’re finding practical solutions to chronic health challenges”

Interesting reading, especially her response to one commenter that “In the case of info for PatientsLikeMe, the database on drug dosing, quality of life and outcomes throughout the MS cycle is probably richer than any other single source on the globe”.

Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate.

To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report.

In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS.

The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself - the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for relapsing-remitting MS than for secondary progressive MS.

If you have MS or are a caregiver to someone with MS, take a look at the report posted on PatientsLikeMe. Note: requires registration on the site.

Based on feedback, we will be integrating some of the elements into an new upcoming area on PatientsLikeMe. Stay tuned!

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

1. What are you thankful for?
I am thankful for being able to walk. That was my worst flare of them all. I woke up one morning and fell right down to the floor. As devastated as I was that my worst fear had come to be, I didn’t let anyone know that I was petrified at not being able to walk or do anything for myself. It was a horrible time for me, but I was determined that I was going to be able to walk again. I’m glad that I can walk even if I do still trip over my own feet. I’m also thankful for the family that stood behind me through that tough time.

2. What do you have in abundance in your life?
I have laughter. If you cannot laugh at yourself, then what are you going to do? I laugh at myself all the time, if I don’t I’ll cry over nothing. The stumbles, the forgetfulness and the anger at my body turning on me after I gave it the best cookie dough in the world, this is the thanks I get. See, you have got to laugh at stuff like a fork flying out of your hand at the most elegant restaurant and running out before the food fight starts. It’s the best medicine.

3. Describe a typical Thanksgiving in your family.
We usually travel home and visit everyone, but this year we aren’t able to do that due to certain problems that have arose (i.e. gas, car repairs), so we will have to have Thanksgiving right here at home (scary since I’m cooking). The highlight is usually seeing my son eat a turkey drumstick. We take a picture every year. I hope he’ll be able to eat one this year without an ambulance ride.

4. What are your interests and hobbies?
I truly, simply enjoy nature. I love watching birds and seeing the pretty ones. Until I lived in a rural place, I had rarely seen all the birds that I’ve seen in the past year. I also like photography. I haven’t gotten a real good grasp on it, but I usually take pictures of the birds that I’m spying on. This would go hand and hand with scrapbooking that I love so much. I don’t do it much now because it’s an expensive hobby. I would like to learn to do needle work like needle point, knitting and crocheting. I like to keep busy.

5. What accomplishments are you most proud of?
I’m most proud of just being a mother. It’s hard when I have bad days, but my son knows why I don’t feel well. This past month hasn’t been good for me going through Optic Neuritis. Having one eye is not easy.

6. What are your top three motivators in life and why?
Prayer, my family and friends (count as one) and the online group that I belong to, The Urban Multiple Sclerosis Alliance. Prayer helps keep me sane. I can’t make it without prayer. My family and friends are there for me no matter what, even though at times I just want to be alone. And the group, well they understand everything I’m going through. It’s a blessing to have someone around and not have to explain what “Coggies” are (cognitive problems). Don’t you just love that nickname?

7. Which PatientsLikeMe patients have you enjoyed getting to know?
I haven’t been posting here a lot so I hadn’t got to know anyone yet, but looking at the message boards, I love seeing someone post about something that I thought only I had to deal with. It’s a great comfort to know that you are not the only one who is not in control of your body or who can’t remember anything about the previous day. It’s great that there is always a place you can go where people just like you (or at least similar to you) exist.

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!

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 Joy, a one-star member.

What inspires you?
Everything inspires me. The very scale of life rocks and sways me. A sunset inspires me to find more color in my own life. A bird in flight invites me to find more easy joy and laughter. A tree inspires me to appreciate my roots and my ability to bend to survive and to realize that I only grow more beautiful with age. A flower inspires in me a consciousness of just how beautiful and fragile life can be. My granddaughter inspires in me a belief in the mystery of creation. And my dad inspires in me a belief in myself. My mother inspires in me strength and endurance. And my husband inspires in me a desire to love most deeply. My soul sister inspires in me a genuine and profound trust. My son inspires in me a purpose and reason in life. And my dogs inspire in me a desire to approach each day with excitement and a willingness to accept the gifts of the life graciously. Someone in need inspires in me a desire to give. And when a friend reaches out to me, they inspire hope. Every brush with life inspires me on to the next moment.

What’s the funniest thing that’s ever happened to you?
No one event jumps out at me as funniest. What I remember most are hundreds of moments of belly laughs in my life. The funniest thing that has happened in a while had to do with my underwear, my dog and our visiting kids (my son, my daughter-in-law and our granddaughter). I was folding clothes from the dryer, and my dog stole a pair of my underwear and made a game of ‘chase’ out of it. Everyone was yelling and running, trying to catch him with my pink underwear on his head and wrapped around one leg. “He went that way!” “WATCH out, he’s behind you!” “Wait, wait, I think I’ve got him!” It was funny and embarrassing, but we were all weak with laughter by the time the dog fell to the carpet exhausted. Game finally over.

What is your favorite place and why?
I love to be deep in the forest where it’s quiet and cool. I like to shop so the mall is interesting. Restaurants are a favorite place of mine too. My husband and I discuss the menu, and he orders for me. I feel like his queen when he does. But my most favorite place in the world is home. Home is where I find comfort, refuge and well-being. It is home where I am surrounded by love.

What do you like best about PatientsLikeMe?
I love the ability to graph out MS progression and keep track of all my medications and symptoms. This will come in handy for doctor visits. The graphs are also very revealing in that I can track exacerbations and connect the dots. What I love most about PatientsLikeMe though is the feeling of community and a sense of warm and open invitation to everyone. This is a wonderful time to say thank you to the administrators and support folks here. You work so hard and listen so well to our suggestions. Thank you to all the members and caregivers here too. You’ve made PatientsLikeMe our community.