PatientsLikeMe

PatientsLikeMe ALS Patient Spotlight: thornbal

ALS / By

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 thornbal, a two-star member. Where do you find joy? I find joy in my family and friends, especially my two daughters. I have really enjoyed every day this summer with my daughters home on break from school! We all enjoyed reading the latest Harry Potter book! Also, I find joy in everyday things like reading the chat board on PatientsLikeMe and watching my favorite soap opera General Hospital (one thing about a soap opera… it is never a repeat! LOL). During the school year when my daughters are at school and my husband is at work, I always enjoy watching movies, television shows, and reading books… all online. And, there’s always Starbucks! Or just looking out my computer room window at my little flower garden, watching the birds and listening to all the sounds of nature. What person do you admire most? I don’t think there is any one person I admire most. I admire everyone living with …

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PatientsLikeMe Update: August 2007

Patient Experiences / By

As you’ve probably noticed, the PatientsLikeMe homepage has had an extreme makeover! The purpose of the redesign was to make our site more personable and inviting. We wanted to put a face on PatientsLikeMe – your face. We also wanted to remove the barriers for those who prefer to take a look around before joining. The results are already indicating that we made the right call. In the week following the new homepage launch, page views increased a staggering 53%. Needless to say, we are very pleased with how this step has opened the doors to our site. A big thank you to everyone who has converted to a public profile – you’re already making a huge difference!

PatientsLikeMe Supports Team in Mid-Michigan MS 150 Bike Ride!

Multiple Sclerosis / By

In late June, PatientsLikeMe Head of Business Development David Williams received an email from his high school classmate Bill Ogden. Bill needed help, you see. He and his wife were preparing to take part in the Mid-Michigan Multiple Sclerosis Bike Tour, which covers 150 miles over two days. Bill explained that they were riding in support of one of his old friends John Rafter (pseudonym), who was diagnosed with MS in 2001. PatientsLikeMe donated $750 towards Bill’s fundraising goal. We salute everyone out there who steps up in support of patients they know and love, not to mention those they’ve never even met. See the picture of the team with their PatientsLikeMe t-shirts!

PatientsLikeMe MS Patient Spotlight: Joy

Multiple Sclerosis / By

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 Joy, a one-star member. What inspires you? Everything inspires me. The very scale of life rocks and sways me. A sunset inspires me to find more color in my own life. A bird in flight invites me to find more easy joy and laughter. A tree inspires me to appreciate my roots and my ability to bend to survive and to realize that I only grow more beautiful with age. A flower inspires in me a consciousness of just how beautiful and fragile life can be. My granddaughter inspires in me a belief in the mystery of creation. And my dad inspires in me a belief in myself. My mother inspires in me strength and endurance. And my husband inspires in me a desire to love most deeply. My soul sister inspires in me a genuine and profound trust. My son inspires in me a purpose and reason in life. And my dogs inspire in me a desire …

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PatientsLikeMe ALS Patient Spotlight: Bwana

ALS / By

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 Bwana a two-star member. What is your favorite time of day? My favorite time of day is late in the evening. I sit in my garden and listen to the sounds of nature and look into the sky and think about so many things. What makes you laugh? When I was diagnosed with ALS right before Christmas, my daughter-in-law gave me a baby book, and the title is “ALL ABOUT ME.” In this book, I can write stories of growing up and put photographs, and I’ve even put some DVDs of my favorite music, anything that would help my unborn grandchild know what kind of person I am or was. One of the stories was about my two brothers and myself. We had a cemetery behind our house that we used to play in, and one Mother’s Day, we had no money, so we took a bouquet of flowers off one of the graves and gave it to …

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Excessive Yawning or Constant Yawning in ALS/MND

24 Comments / ALS, Research / By

The first thing we experience about yawning is an urge to do so, one that can be so hard to suppress that we end up gulping down an extra serving of air when we’re trying to appear interested, or polite, or awake. But what if you yawned even if you weren’t tired, or bored? What if you got attacks of yawning six, seven, eight times in a row that you couldn’t stop? This can be a problem for some patients with ALS, and it’s made worse by the fact that due to weak jaw muscles they could dislocate their jaw.   That’s why I was particularly interested when a news report on PatientsLikeMe listed “increased yawning” as a symptom of ALS. It occurred to me then that we had in front of us the perfect way to investigate excessive yawning in more detail. The first step was to set up “excessive yawning” as a primary symptom in ALS, meaning that all new members would be rating whether they felt it was mild, moderate, or severe. Coincidentally, a paper had just come out which reported two patients (not with ALS) with excessive yawning after being prescibred an SSRI antidepressant drug. We …

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PatientsLikeMe ALS Patient Spotlight: Edwin

ALS / By

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 Edwin, a three-star member. What inspires you? For me, it is not what but who, and the answers are completely different now than they were before my MND diagnosis, because prior to my diagnosis I let materialism rule my life. God inspires me in more ways than I can possibly say. With today’s technology we have the good fortune to not only be able to appreciate and enjoy all of the magic, splendors, and wonders of our own planet, but those of the universe too. Every morning I wake up and thank God for my creation/existence, knowing that this lifetime is an opportunity for me to experience, learn, and give, and that it is just “a blink of the eye” of my eternity. Many of my fellow humans on the planet inspire me. I speak of those who, without any hidden agenda, give of themselves for the betterment of others. I still have much to learn from these …

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PatientsLikeMe Update: May 2007

ALS, Multiple Sclerosis, Parkinson's Disease / By

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other. We are also thrilled to announce the debut of two new communities for Parkinson’s disease and multiple sclerosis (MS). If you know people with either condition, invite them to join PatientsLikeMe. We want them to know what you’ve already learned – that when patients share their data, it empowers everyone.

PatientsLikeMe Receives Its First Scientific Award

Research / By

PatientsLikeMe, the leading treatment and outcomes sharing website for people with life-changing diseases, is proud to announce its first scientific poster award. Today, at the 20th anniversary meeting of the British Neuropsychiatry Association (BNPA), Dr. Paul Wicks, resident researcher at PatientsLikeMe.com received the Association’s first prize for the best poster presentation, entitled “Telesocial medicine for neurological disorders: PatientsLikeMe.com”. “This is the first time that PatientsLikeMe.com has been formally presented at an academic conference and it’s great that the site has received the recognition it deserves,” says Dr. Wicks. “Over the two days of the conference I’ve spoken to neurologists, psychiatrists, and patients, all of whom were enthusiastic about the concept and interested in the development of the site as it branches out to include conditions as diverse as ALS/MND, Parkinson’s disease, and multiple sclerosis.” The poster illustrates the power of PatientsLikeMe and how it can help patients with neurological disorders take control of their diseases and improve their understanding and knowledge of treatments.

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