Conditions

Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.

The “We Have MS Together!” video

Learning from each other can be addictive, and even fun at times. One of our more prolific (and outspoken and creative) MS members, Keeping On, decided to celebrate her 1000th post with a musical salute to some of the most humorous posts and posters in our MS community. So she got together with another witty member, sacleveand, to produce and star the video “We Have MS Together!”

Community Report: The composition and experience of the Multiple Sclerosis community

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 …

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PatientsLikeMe at the Toronto ALS/MND Symposium

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006, with Paul walking doctors and researchers through the site on a laptop. This year we decided to invest more in setting up an eye-catching booth which had people coming up to us to admire our space-age gadgets as much as to see the site! Over the course of 4 days we spoke to hundreds of conference delegates. Many doctors had said that they had been invited to join the site by their patients and were curious to find out more. We were able to use our new Google Mapping feature to show them where their local patients were, which had people queuing to see who they knew that was registered on the site! Several researchers were also interested in forming collaborations and we hope to be able to get our users involved in more research over the coming year.The most common questions people had for …

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PatientsLikeMe T-Shirts

As the holiday spirit finally came upon us we thought we should do something nice for our members. There are thousands of them (and many more every day), so it isn’t reasonable to thank every one (we may look like Santa Claus, but we’re not, sadly). So we decided to thank the “stars” of the community – our three star members- and send them a PatientsLikeMe package with a rare PatientsLikeMe T-shirt, and other goodies. Here are some of our members showing off their new shirts…. This is one of our longer-time MS members, jhcamero, who has recorded 12 years of treatment and symptom information on the site. You have to love the “Christmas Story” lamp and stocking in the background. This is Kakijade, who was diagnosed fairly recently, and has used the site to track her care since joining in August. Both of these members are frequent contributors to the site. Both are being treated with newer meds, and their sharing of their experience with these drugs is very helpful for other members. PatientsLikeMe is about patients sharing their experiences and outcomes with each other so they can all better manage their disease and make the best possible decisions. …

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PatientsLikeMe Update: November 2007

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change. ALS Community We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there! MS and Parkinson’s Communities Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community …

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Happy Thanksgiving! PatientsLikeMe MS Patient Spotlight: FeliciOlivar

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 …

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PatientsLikeMe Parkinson’s Patient Spotlight: Lynette1400

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 Lynette1400, a two-star member. What are you thankful for? A loving husband and family, wonderful friends, having had an interesting and exciting life, Social Security, Medicare, and pensions! What do you have an abundance in your life? A) Love and laughter. B) Time to do all the things I want to do but didn’t have time for when I worked. Because of this, I am busier than ever. What is your favorite holiday memory? There have been so many. When my three children were little, we spent Christmas Day at my mother’s. After dinner, she played the piano and my Dad and the whole family, including my three brother’s families, stood around the piano and sang Christmas carols while the children played with their new toys. It was like the Christmases in our family when I was a child. After the kitchen was cleaned up, the families would all sit around card tables and play card games. The …

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PatientsLikeMe Parkinson’s Patient Spotlight: chethk

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 …

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PatientsLikeMe MS Patient Spotlight: jtjackson

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 …

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PatientsLikeMe ALS Patient Spotlight: swhite.geo

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 …

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