SSDI

What Do You Know About Multiple Sclerosis?

March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves. This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the best quality of life possible.  This means different things to different people as MS varies widely in severity, with approximately 15% of those diagnosed becoming severely disabled.  It could include adhering to a treatment regimen, eating healthy, keeping fit, developing a support network and/or maintaining good emotional health. It could also refer to nurturing hobbies and interests.  That’s why the MSF has launched the “Show Us Your Best” contest, which calls for creative submissions (such as poems, essays, photo collages, videos, songs and more) demonstrating how people are raising awareness of MS.  The deadline for entry is March 31st, and the grand prize winner will win a cruise for two on MSF’s 2013 “Cruise for a Cause” to Alaska. With 26,000+ members, the MS community at PatientsLikeMe is one of our largest.  Approximately 80% of the MS community is female (reflecting the fact that MS …

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One for All: A Cross View of Patient Sharing

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series). Today, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out. DID YOU KNOW… Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older. Approximately 31% (or 27,013) of patient members across all communities experience depression. How are you treating your condition? You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc. One of the top lifestyle modifications reported by our members is heat avoidance; and physical exercise is the #1 exercise cited. The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta). The top 3 supplements …

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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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Parkinson’s Disease: Real-World Data, Real-World Experiences

It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (“PokieToo”) giving her real-world experience of living with condition. WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)? Meet PokieToo.  A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.”   “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease. DID YOU ALSO KNOW… More than 1,500 of our patient members are 50-yrs old or older 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40. How are our members treating their condition? Patients …

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