sclerosis

Seeing [MS]: The invisible symptoms – spasticity

Australian comedian and public speaker Tim Ferguson said it the best – “Seeing [MS] is all about helping everybody, in society, right across the world, get their heads around this mysterious and sometimes scary condition.” He’s living with multiple sclerosis (MS), and he spoke about his spasticity in the video below.   You are now seeing spasticity Photographed by Matt Hoyle Inspired by Tim Ferguson’s invisible symptoms He worked with photographer Matt Hoyle to visualize his spasticity as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign. It’s all about shining a light on the invisible symptoms of MS and raising awareness for the neurological condition – check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below. What went through your mind when you were diagnosed with RRMS back in 1994? I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life. It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community? I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that …

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“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called “Motor Neuron Disease Made Easier.” Steve spoke with us about the decisions that come with a MND diagnosis, the inspiration for his film and “how adaptable one can be in the face of adversity.” Read more about Steve’s story below and head to his blog to watch his film. Looking back over the last 7 years since your diagnosis with ALS/MND, is there anything you’d like to have known sooner that has helped you along your journey? I think I was fairly pragmatic about researching the condition from the outset, so there haven’t been many surprises apart from the fact that I am still here 7 years later (and I just realized it’s actually 7 years to the hour as I write). One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. There is so much equipment, …

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Seeing [MS]: The invisible symptoms – hot and cold

Dimitri is living with multiple sclerosis (MS), and he experiences dramatic changes in his body temperature every day. These swings can aggravate his other symptoms and leave him feeling suffocated. As he puts it, “a single bead of sweat can bring me to my knees.”   You are now seeing hot and cold Photographed by Jamie MacFayden Inspired by Dimitri’s invisible symptoms He worked with photographer Jamie MacFayden to portray his hot and cold sensations as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which we also posted about on the blog in July (blurred vision) and August (pain). It’s all about raising awareness and showing everyone the invisible symptoms some people are living with because of their MS. Stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

MS members share about their PatientsLikeMeInMotion™ experiences

PatientsLikeMeInMotion™ is a way to celebrate our three star members (super health data donors) and sponsor them at events so that they can raise awareness for their condition. If you’re passionate about advocacy and you’re participating in a walk, run or other fundraiser on behalf of your condition, learn more and sign up right here.  We caught up with three MS community members who are active participants in PatientsLikeMeInMotion. They shared about the events they’ve been a part of over the years, why advocacy is important to them and several ways PatientsLikeMe has helped them manage their MS. Scroll down to read what they had to say.  Ajcoia  “Since being diagnosed in 2002, and after my sister was diagnosed in 2001, I have participated and captained every event the Greater Delaware Valley MS Society chapter has offered. This includes the one-day walks, MS150, Muckfest MS and Challenge Walk MS. My favorite event is the Challenge Walk MS, in which I have participated all 12 years. I have met so many wonderful and inspiring people through this event, which brings me back year after year. Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding …

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“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge

Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009) took on the challenge, and we caught up with him to find out why. Steve shared about his own diagnosis experience, what he thinks about the ALS community on PatientsLikeMe and what he hopes to see come out of the IceBucketChallenge. Don’t forget to follow Steve on his own blog, too. He calls it Bachblog.  Can you tell us a little about yourself and your diagnosis with ALS? I first noticed an odd cramping in my left hand sometime during the summer of 2009 when I was 49 years old. That fall, I realized I no longer had the strength to use fingernail clippers with my left hand. At the time, I was playing pickup basketball two or three days a week. I began to notice that after one hour of basketball I was “wiped out” and that I was having difficulty taking longer shots. …

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Nola’s new bathroom

It’s rare that we’re surprised by the power of connection in the PatientsLikeMe community—we see members connect everyday and transform their lives through the exchange of information. This story extends beyond shared knowledge, though; it displays the powerful bonds of internet friends who offered truly life-changing support from opposite coasts. Below, listen to them tell their amazing story to our community moderators Sarah and Jeanette. Click to learn how Gary helped Nola regain her independence, her ability to clean herself, and most importantly, her dignity. Nola (6.02x10e23) lives with progressive MS in California. In the past ten years, she’s gone from walking to slightly limping, to using a cane and then a walker. Now, she’s in a wheelchair and cannot use her right arm. “I had to keep adjusting slowly how I did any little thing. How could I write a check? How could I make something to eat? Or get something to drink? Or just get to the bathroom and back? It’s constant change and you have to accept the change and learn how to adapt and try to still be able to get things done that you want done. You’re going to have do it in some very different ways that …

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Seeing [MS]: The invisible symptoms – pain

“I’m burnt alive every day.” That’s how Stephen Papadopoulos, an Australian living with multiple sclerosis (MS), describes the level of pain he experiences on a daily basis. Pain is the second of nine symptoms portrayed in the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] awareness campaign, and Stephen details his experience in the video below:   You are now seeing pain Photographed by Garth Oriander Inspired by Stephen Papadopoulos’ invisible symptom   We’re highlighting pain this month in an effort to reveal the invisible side of living with MS. You can also read other posts on pain – of particular note, Tam’s story about her private, intense pain. Share this post on twitter and help spread the word for MS.

Putting the spotlight on ALS

If you follow PatientsLikeMe on Twitter or Facebook, you might be wondering why our staff decided to dump ice water all over their heads this past week. Well, here’s what’s up: it all about raising awareness for ALS. It began in 2012, when local Boston College alumnus Pete Frates was diagnosed with amyotrophic lateral sclerosis (ALS) at the young age of 27. ALS is a motor neuron disease that affects the nerves that control voluntary movement. As the condition progresses, patients are eventually unable to walk, talk, eat or communicate on their own. We’re all too familiar with ALS at PatientsLikeMe – in 1998, Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with the neurological condition, and his journey sparked the journey that became PatientsLikeMe. Ever since his diagnosis, Pete’s been working to raise awareness about ALS, and when his friend Pat nominated him for the ice bucket challenge, he posted a video encouraging others to “Strike Out ALS.” So in Stephen, Pete and everyone with ALS’s honor, we decided to accept the ice bucket challenge.   We also challenged a few of our friends: Global Genes: Susannah Fox: http://instagram.com/p/rXuZaQqcqC/   Even Stickman made an appearance …

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“MS doesn’t define anyone” – PatientsLikeMe member Anna shares about her journey with MS

We’ve had the pleasure of featuring many PatientsLikeMe members on the blog, but never one with a nickname quite like this. Anna is living with MS and we caught up with her to talk about coping, finding support, her motorized scooter and where the name “Mad Anna” comes from. Read below to see what life with MS means to her along with a poem she wrote not long after being diagnosed. Thanks for sharing, Anna! Will you tell us a little about yourself? I’m 56, mad as a brush (but responsible in the necessary ways). Love nature and the great outdoors. Used to walk (had dogs) and cycle loads. I’ve mostly worked with vehicles/transport after a start in office work, which I hated, so I moved on to chauffeuring, bus driving, driving instruction (cars, buses and lorries), agency lorry driving while I ran down my driving school in readiness for…tube train driving. Fate playing its hand in getting me from a self-employed status to employed by a company (London Underground) who doubled my 10-year pension with them and medically retired me when I was too crocked to stay there. That move also enabled me to leave a bad marriage, but …

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