Mood conditions

“Mind your health” – Recognizing mental health in May

This May marks the 65th anniversary of Mental Health Month, which has been observed by Mental Health America (MHA) since 1949. The MHA’s 2014 monthly theme is “Mind your health,” and it’s all about building public awareness for mental health and wellness while learning about the complex connections between the mind and the body. According to the National Institute of Mental Health (NIMH), 26% of Americans ages 18 and older are currently living with a diagnosable mental health condition.1 That’s about 1 in every 4 adults. In fact, NIMH says that mental health conditions “are the leading cause of disability in the U.S. and Canada.” They can cause mood swings, anxiety, personality changes and more, and many times, the subtler emotional symptoms can be very tough to describe. The mood community at PatientsLikeMe is more than 33,000 strong, and in addition to tracking symptoms and donating personal data through detailed health profiles, members are sharing their experiences in the PatientsLikeMe forum. People are talking about everything from sleep habits and mood research to favorite emotional movies, and they’re also sharing photos symbolizing how they feel. If you’ve been recently diagnosed, connect with others who are experiencing the same and know what …

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Canine Caretakers: How Service Dogs Can Help Many Types of Patients

Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog. What are the benefits – both expected and unexpected – of a four-legged assistant?  We asked some of our members to talk about their service dogs’ best qualities. The Uncanny Seizure Predictor “[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” – Mandysmother (Epilepsy patient) The Sensitive Tear Licker “He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.”  – Some1Special (Mental Health and Behavior patient) The Good-Humored Mind Reader “[My service dog Mali] was the best decision I ever made. With her I now have some of my independence …

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Mood Patient Interview: How Far I’ve Come

We continue our series from last week of getting to you the person, not just the “patient.” Here’s an interview with member “Bradley25,” a member of our PatientsLikeMe Mood Community who was interviewed for our January newsletter.   Read on to learn more about how comparing his condition over time has helped give him hope as well as his goals for 2011 .  Enjoy! * * * (Amy) Where do you find hope? (bradley25) I find hope when I look at my continued progress. When I look back and compare the severity of my condition over the years, I am amazed at how far I have come. Fifteen years ago, my life was a complete wreck. I was in and out of the hospital and had trouble holding a job for more than a few months. Ten years ago, I had many of the same problems but life was improving from a treatment plan that I held. Within the last five years, I have found a good doctor and am properly medicated. Although life isn’t perfect today, bipolar disorder no longer controls my life, and I find it interferes less and less with my job, social life and daily routine. …

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Share and Compare: A PatientsLikeMe Year in Review (Part II – R&D)

The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011.  Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010. The R&D team published and presented some unprecedented insights based on what you shared with us this year.  In addition to attending and presenting at some noteworthy conferences in 2010, we also published a series of blogs and podcasts pulled together just for you. Based on your feedback, the R&D team also implemented some changes to the medical architecture that will help improve the research we do, as well as your experience as a patient on the site.  Ultimately, we are working to develop tools that help you answer the question: “Given my status, what is the best outcome I can hope to achieve and how do I get there?” Today and tomorrow, we’ll be highlighting some of the work we’ve done in 2010 focused on various communities.  Today, we start with the following (listed from newest to oldest community): Organ Transplants Researcher Catherine Brownstein MPH, Ph.D. presented a poster at the American Society of Nephrology (ASN) …

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Overcoming Obstacles – Newsletter Highlight 2010

Last week, we posted highlights from our December community newsletter interviews. As we close out 2010, we want to spotlight another question asked this month – one that is relative to all members, all patients (no matter the condition).  What obstacles have you faced and overcome this year? To review all of our newsletters, you can visit our archives page here. * * * (Amy) What obstacles have you overcome this year? (ellieGADsufferer – Mood Conditions Community) First of all, I became well enough to leave my local psychiatric hospital after having been an inpatient for six months. My anxiety means that all new things – even getting on a bus to go somewhere new – make me have severe panic symptoms. I now make sure I am out of bed by 0700hrs during the week and make myself go out at least three times per week, whether it is meeting friends for coffee or attending appointments. Otherwise I will return to “avoidance,” whereby I cut off all contact with friends and family, including calls and text messages. (kidneygirl1198and0505 – Transplants Community) I have had to deal with and overcome the struggles that come with tardive dyskinesia. Reglan has been …

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Sharing and Learning with PatientsLikeMe

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions. We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month. To review all of our newsletters, you can visit our archives page here. * * * (Amy) How has PatientsLikeMe helped you learn and share this year? (Tommy Maker – ALS Community) PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most …

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Share and Compare: How are you feeling? Find out with InstantMe!

Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context.  Today, we’re introducing a new tool in all of our communities called “InstantMe.”  Want to chart how you’re feeling day in and day out?  Now you can. All you need to do for InstantMe is answer this simple question – How are you feeling now?  You can answer this question as many times in a day or week as you’d like. InstantMe will appear on your profile to add more context to the other experiences you share there, as well as on your Doctor Visit Sheets so you can communicate more effectively about how treatment changes have impacted the whole you.  You can even sign up for a reminder and answer InstantMe right over email. Why InstantMe?  Many of you already use the measurement tools we have in place to put your experiences in context  – for example, there’s the mood map, quality of life scale, or clinical rating scales (e.g., ALS functional rating scale). These instruments (which you typically fill out weekly or monthly) measure the severity and impact of medical …

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Mental Health Awareness: What do you know about Mood Conditions?

In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on! DID YOU ALSO KNOW… You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more. In a PatientsLikeMe research study recently published in the Journal of Medical Internet Research, we revealed: 26% of responding mood community members agreed or strongly agreed that using the site had reduced thoughts about self harm 23% agreed they had decided to start therapy or counseling after interacting with others on the site 22% agreed they needed less inpatient care as a result of using PatientsLikeMe.  (See our “Patient Voice” report, video and member interview on inpatient therapy). Members’ experiences on the treatment Amitriptyline was used in an award-winning paper presented at Medicine 2.0 last year. How are our members treating their condition? Patients are using more than 1700 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more. The …

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Mental Health Awareness: Interview with Mood Community Member, Marathoner452

Last week was Mental Illness Awareness Week.  Did you know there are more than 18,000 patients in the PatientsLikeMe Mood Community?  Stay tuned for another blog tomorrow with some interesting tidbits about this community.  To warm us up, here is a recent newsletter interview we did with three-star member  – marathoner452.  Read on to find out what she recently told our very own Amy Morton about what brings her joy, returning to teaching, and what she has learned from the PatientsLikeMe Mood Map. * * * (Amy) What brings you joy? (Marathoner452) My two-year-old niece and four-month-old nephew make me so happy. During my most recent depression, my niece and her parents (my nephew wasn’t born yet) lived at my house and just waking up in the morning and knowing that as soon as I made it downstairs she’d be chanting my name and wanting to sit on my lap at breakfast and pop the bubbles in my cereal was enough of a reason to live another day. You don’t remember much from when you’re almost two-years-old.  I wanted her to remember me.  When she gets old enough to understand, I intend to tell her how she helped save my …

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The Patient Voice: Interview with Mountabora (Mood Conditions Community)

Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience.  Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization.   Here’s what she had to say: (Maureen) You note in your member profile that you have been hospitalized a few times. What were those experiences like? (Mountabora) Being in a psychiatric hospital is kind of like being at summer camp. You’re away from home, living in close quarters with strange people, and participating in structured group activities which may or may not have a purpose. There are a lot of rules, and you lose privileges if you don’t follow them. You have to get up way too early in the morning and eat three meals a day at the cafeteria. There’s a lot of emphasis on learning coping skills, typically through classes and worksheets. There’s also a lot of emphasis on medication; most patients are on at least two or three psychoactive drugs. You go to therapy and you see a psychiatrist, but much more often than you …

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