sclerosis

Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below. Hi Ashleigh! Tell us a little about yourself and your husband. Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated …

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Getting to know our Team of Advisors – Charles

We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors. About Charles (aka CharlesD): Charles has a diverse background. He served three years in the US Army 75th Ranger Regiment parachuting from the back of C-130 and C-141 aircraft. He built audio/video/computer systems for Bloomberg Business News. He worked as an application systems engineer in banking, as a computer engineer at the White House Executive Office of the President (EOP), and as a principal systems engineer for the US Navy Submarine Launched Ballistic Missiles (SLBM) program. He is currently a contractor providing document imaging Subject Matter Expertise (SME) to the IRS. Charles was diagnosed with MS in July of 2013. MS runs in his family on his mother’s Irish side – he has one uncle and two male cousins with MS. Charles on patient centeredness: With experience in website design, Charles believes patient centeredness is a lot like user centeredness when designing a web site or a portal: …

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Wrapping up Seeing [MS]: The invisible symptoms

Here’s a question we asked last year – how do you explain multiple sclerosis to those who don’t understand? And here are a few answers: “I’m burnt alive every day.” “A single bead of sweat can bring me to my knees.” “I can be struck down in just seconds.” Over the past year, we’ve been featuring quotes, pictures and videos from the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about visualizing the invisible symptoms of MS and raising awareness for the neurological condition. We’ve covered nine symptoms: blurred vision, pain, hot and cold, spasticity, dizziness, fatigue, brain fog, balance and numbness. If you missed anything, watch the video below for a full recap. While there may be no more Seeing [MS] photographs, there will always be more symptoms, experiences and knowledge to share to help raise awareness for all things MS. There are more than 39,000 people living with MS on PatientsLikeMe, and many have contributed their own symptoms to the Seeing [MS] forum thread. If you’ve been diagnosed with MS, visit the community today. And a very special thanks to the patients and photographers whose hard work made Seeing [MS] possible.

Seeing [MS]: The invisible symptoms – numbness

“When I woke up, my hands were gone.” That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and there is a barrier there.” Listen to Adriana speak about her symptom below: You are now seeing numbness Photographed by Nicholas Walton-Healey Inspired by Adriana Grasso’s invisible symptoms Adriana worked with photographer Nicholas Walton-Healey to portray her numbness in a picture and video. Their work is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing 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.

What can you do to challenge ALS in May?

It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped,  a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In the 2000s, familial ALS was linked to 10 percent of cases, and new genes and mutations continue to be discovered every year.1 In 2006, the first-of-its-kind PatientsLikeMe ALS community, was launched, and now numbers over 7,400 strong. And just two short years later, those community members helped prove that lithium carbonate, a drug thought to affect ALS progression, was actually ineffective. This May, it’s time to spread awareness for the history of ALS and share everything we’ve learned to encourage new research that can lead to better treatments. In the United States, 5,600 people are diagnosed with ALS each year,2 which means that well over 100,000 have started their ALS journey since 1992. And in 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was also diagnosed. They immediately went to work trying to find new ways to slow Stephen’s progression, and after …

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PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS

TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent presentation on patient-focused drug development with Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. Catch up on his journey below. Hi Tom! Can you share a little about your early symptoms and diagnosis experience? I think I was very lucky to have a knowledgeable general practitioner – my actual diagnosis only took three months to complete even though I had to see three separate neurologists. My early symptoms started in my right hand with weakness and the atrophy of the thumb muscle – I thought it was carpal tunnel syndrome. How has your ALS progressed over the past few years? Thankfully I have been in the category of a slow progressor: The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which …

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PatientsLikeMe study monitors walking activity in people with MS

           Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS patients. These data are being presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC April 18-25. “MS impairs the ability to walk for many people with MS, yet we only assess walking ability in the limited time a patient is in the doctor’s office,” said Richard Rudick, MD, vice president, Value Based Medicine, Biogen. “Consumer devices can measure number of steps, distance walked, and sleep quality on a continuous basis in a person’s home environment. These data could provide potentially important information to supplement office visit exams.” The study was designed to assess the feasibility of using a consumer wearable device to monitor activity among people with MS in a real-world setting. In it, 248 PatientsLikeMe members were provided with Fitbit One™ activity trackers. Of those who received them, 213 (82%) activated the device with the Fitbit website and authorized …

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Seeing [MS]: The invisible symptoms – balance

Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak about her MS below: You are now seeing balance Photographed by Andreas Smetana Inspired by Carol Cooke’s invisible symptoms To help others understand this, she worked with photographer Andreas Smetana to portray her MS symptom in the picture above. Her video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing 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.

“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS

That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic, and shared how technology has been simultaneously frustrating and extremely helpful. Learn about her journey below. When did you first experience symptoms of ALS? In August 2008, I was attending a Girl Scout event. As we recited the Promise, I noticed my fingers weren’t making the sign correctly. Over the next few months, I began to lose the fine motor skills in my right hand. Writing was hard, & I started using my left hand for most things. I thought I had some form of carpal tunnel. I had NO pain, so I wasn’t concerned. In December 2008, I went to my family doctor for my annual check-up. I told him my problems & he sent me for an electroencephalogram (EEG). That began the series of tests that eventually led to my diagnosis in April 2009. How did you feel after being officially diagnosed? And …

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Getting to know our Team of Advisors – Deb

You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana. This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her.  About Deb (aka ruby1357): Deb has spent most of her professional life as a freelance medical writer and editor. Over the years, she has worked with many health and medical organizations. Currently she works in cardiac surgery research for a major hospital system in the Washington, DC, metropolitan area. Deb’s primary professional interest has always been patient education. She believes that “knowledge is power”―that clear and accurate information can ease patients’ fear and uncertainty when faced with a serious diagnosis, that anyone is capable of understanding even the most complex research if it is presented appropriately, and that information doesn’t have to be dumbed down for patients to understand it. Deb was diagnosed with MS in 2009. Her passion is dressage, and she credits her horse, Gwen, and riding as the most important and effective “treatments” for her MS symptoms. Deb on patient centeredness: “I feel …

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