Seeing [MS]: The invisible symptoms – blurred vision

Hidden – invisible – unnoticed. That’s what symptoms for many living MS are like. So how do you explain them to people who don’t understand? The Multiple Sclerosis Society of Australia (MSA) decided to stop just talking about them and start showing what it’s like to live with MS. Their project is called Seeing [MS] and includes nine photographers depicting nine invisible symptoms in a series of single images. And all of them are inspired by the experiences of people living with the condition – these photographs are what life with MS is like for them. We’ll be highlighting them all on the blog over the coming months to help expose the invisible side of disease. You are now seeing blurred vision Photographed by Toby Burrows Inspired by Emma Giunti’s invisible symptom   Emma Giunti talking more about MS and blurred vision. Share this post on twitter and help spread the word for MS.

“In my own words” – PatientsLikeMe member Tam writes about (your) life with MS

If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to try and help everyone better understand, PatientsLikeMe member Tam recently wrote a description of what life might be like for you if MS was a part of your day. Read her post below. The private, invisible pain of MS Let me take you on a journey; on my journey. I’m asking for a few moments of your time to take a glimpse at what I experience each moment of each day. I was given an example, which I will start with. We’ll begin at 8am on a Monday morning by clipping a clothespin on the end of each of your fingers. Not so bad, you may be thinking. Shower, do dishes, get dressed (fasten a bra, zip and button your pants, tie your shoes), make coffee, pick up a medication and take just the one pill you need to take … do all the normal things …

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Food for thought: July (chocolate) edition

Calling all dark chocolate lovers! Did you know there could be a benefit to eating it besides tantalizing our taste buds? A new study started to get some buzz in the MS community forum when a member posted about how it claimed those who regularly consume dark chocolate may enjoy improved walking ability. Here’s what people had to say: “I have been having problems with dark chocolate causing bowel urgency 🙁 So have had to be very judicious about my intake.” – MS member “Dark chocolate generates endorphins and endorphins are hormones that regulate T-cell proliferation in the immune system. Meaning…dark chocolate may help slow MS progression.” – MS member “I can get away with some dark chocolate most of the time, without stimulating an unexpected bowel motion. However, sugar I definitely have a problem with…and cocoa butter? I expect it is not great for us either.” – MS member   Members aren’t just talking about the study though; they’re sharing their favorite dark chocolate food recipes. Check them out. And if you missed our other Food for Thought posts, read the previous editions here. Share this post on twitter and help spread the word.

“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS

As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about what it’s like to be a mom living with MS, her volunteer work with Penn’s LEAPP program and the inspiration behind her MS blog Adaptolution. Read on for her full interview. A lot of MS members have shared that finding a diagnosis isn’t always easy – what was your experience like? For the first eight years of living with MS, the disease was not visible to those around me. However, I have not shied away from discussing my disease. If I can educate one more person about life with a chronic illness, then I could make someone else’s struggle just a bit easier because they will be encountering people who understand. Everyone around me has been supportive. It is a very private decision whether to discuss MS openly – for me, it has allowed others to come into my world a little more and chronic …

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“Just saying” – PatientsLikeMe member Shep talks frankly about his MS

The members of the multiple sclerosis (MS) community on PatientsLikeMe are very open when it comes to sharing about their journey, and shep0454 (aka Shep) is no exception. He recently spoke with us about his life with MS, and he pulled no punches when talking about his emotions after being diagnosed, the wonderful people he’s met on PatientsLikeMe and the difficulties in traveling and vacationing with MS. Read on to see his personal journey (and his great sense of humor).  Hi Shep! Tell us a little about yourself and what you’re currently up to. I’m currently up to about FOUR foot TEN since I’m now a member of the Power Chair Guild full time! “A little about myself….” huh!?!?!?! I have been on my MS journey since I was a little boy running into the side of Cadillacs while waiting for the school bus…NO!!!! really!!! Relapsed and remitted with balance and falling and gran mal and absent seizures and impaired comprehension and blurry vision and heat sensitivity and unexplained lapses of chronic fatigue for about fifty years with no confirmed diagnosis. After a heart attack about seven years ago, I began to proactively seek an answer to these enigmas that all of …

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What lies ahead – PatientsLikeMe member John shares his journey with ALS

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and outlook after being diagnosed with ALS. And as we speak, he’s traveling across the United States with his adorable dog, Molly (that’s her in the picture) to help raise awareness and funds for ALS through his artwork. Learn more about his efforts on the ART 4 ALS website and check out his full interview below.  When did you first start experiencing symptoms of ALS? What was your diagnosis experience like? I first experienced ALS symptoms early in 2012 as I was trying to wind down a career in metropolitan planning. At the time, I was also heading up the recovery group I helped establish in our hometown of Schoharie NY after the devastating floods from Hurricane Irene in August 2013. The flood had put 85% of all homes and 100% of all businesses in town out of commission. I’m proud of the response from the …

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Speaking up for hope during ALS Awareness Month

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers went to work trying to find new ways to slow his progression. But their trial and error approach just wasn’t working, and so they set out to find a better way. And that’s how in 2004, PatientsLikeMe was created. If you don’t know the story, you can watch the feature documentary of the family’s journey, called “So Much So Fast.” ALS is considered a rare condition, but it’s actually more common than you might think – in the United States, 5,600 people are diagnosed with ALS each year, and as many as 30,000 are living with the condition at any given time.1 ALS affects people of every race, gender and background, and there is no current cure. Even before PatientsLikeMe, Jamie started the ALS Therapy Development Institute (ALS TDI), an independent research center that focuses on developing effective therapeutics that slow and stop ALS. Now, …

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“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy and fundraising events with her now legendary team, Kim’s Cronies. She spoke with us about her diagnosis with relapsing remitting MS, the evolution and growth of her fundraising efforts and just how much the MS community on PatientsLikeMe means to her. You were diagnosed with relapsing-remitting MS in 2006 – what was that experience like? My experience with being diagnosed was probably like everyone else. “Shocked.” My symptoms started with visual changes. I had Lasik surgery done 3 years prior and thought that something was going wrong because of that procedure. I went to the eye doctor and he mentioned optic neuritis, and being in the health care profession, I knew that was usually in relation to multiple sclerosis. Already, my mind started racing thinking all about the negative things related to MS. Within a week, I went to see my MD and had an MRI, …

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PatientsLikeMeInMotion 2014: Celebrating 6 years of PatientsLikeMe members giving back to their communities and raising awareness

It seems like it was just yesterday when PatientsLikeMeInMotion was launched, but it’s been going strong for more than 5 years now – wow, how time flies! We’re celebrating the 6th year of PatientsLikeMeInMotion with a recap of 2013, the biggest year so far! We had the honor of supporting 1,611 members across 27 states who participated in everything from a JingleBell race and the MS Muckfest to a golf tournament and a motorcycle ride. These people raised money for their favorite nonprofits and rallied everyone to promote awareness for their health conditions. If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what a few members had to say: “I feel so fortunate every time my family and I can contribute, with [PatientsLikeMe’s] help, to the financing of research for the cure.“ “We love participating in the PatientsLikeMeInMotion program. It’s a wonderful opportunity for our cause to not only earn money, but we love having our volunteers sport the blue PatientsLikeMe shirts at our events! It’s a win-win for us!“ …

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Stand up and be counted during National Multiple Sclerosis Education and Awareness Month

  Here at PatientsLikeMe, every experience counts, whether you’ve just been diagnosed, are trying a new treatment, or managing your symptoms. This month, we’re standing up and focusing on Multiple Sclerosis (MS), a neurological condition that affects 2,500,000 people around the globe—including more than 400,000 in the United States.1 To help raise awareness about MS, the Multiple Sclerosis Foundation (MSF) and its partners have named March “National MS Education and Awareness Month.” Together, we can stand up and help those living with MS be counted. There are many different awareness activities you can participate in over the next few weeks. You can also submit a photo to the MSF as part of their “MS Awareness: Make It Count” contest. You’ll need three things: A camera (still or video) Lots of people wearing the color orange (here’s a picture of the PatientsLikeMe team) A homemade sign that says “SUPPORT THE MULTIPLE SCLEROSIS FOUNDATION – BECAUSE MS COUNTS!” If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts. And you could also join more than 33,000 people with MS at PatientsLikeMe – it’s one of the largest communities on the site, and there are always some great …

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