34 posts tagged “multiple”

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

Posted June 22nd, 2015 by

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 for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

Share this post on Twitter and help spread the word for MS and PTS.


Wrapping up Seeing [MS]: The invisible symptoms

Posted June 1st, 2015 by

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

Posted May 22nd, 2015 by

“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.


PatientsLikeMe study monitors walking activity in people with MS

Posted April 15th, 2015 by

          

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 PatientsLikeMe to access their data. Two-hundred and three of those who authorized sharing of the data synchronized the device with the service and produced tracking data. Participants synced an average 18.21 days of data over the 21-day study (87% adherence).

Paul Wicks, PhD, Vice President of Innovation at PatientsLikeMe, said that advances in wearable health technology have the potential to shed light on disease characteristics. “PatientsLikeMe is in a unique position to combine self-reported data with objective measurement and help patients and researchers learn more to impact self discovery and research.”

The three-week study had a lasting impact on its participants, who together took a total of 15 million steps and walked 6,820 miles, the distance from Boston to Beijing. “I got positive reinforcement to do more each day, and that really encouraged me,” said Annette Smiling, a PatientsLikeMe member and study participant who had never used a wearable activity tracker before. “The Fitbit also allowed me to track what I was eating and how I was sleeping. I made more positive choices as a result.”

After the study period, participants were surveyed to learn more about their study experiences and about their attitudes toward technology and physical activity tracking. Of the 191 participants who responded to the post-study survey, 88 percent reported the device was easy to use and incorporate into their daily routine; 83 percent agreed that they would continue to use the device after the study; and 68 percent believed that the device would be useful to them in managing their MS. Additional survey data is available at http://news.patientslikeme.com.

With more than 38,000 members, PatientsLikeMe’s MS community is the largest and most active MS research community online.

Study Design Methodology
A total of 248 PatientsLikeMe members living with MS were recruited to participate in a study deploying Fitbit One™ activity trackers. Information on patient demographics and level of self-reported functional disability were captured from the participants’ PatientsLikeMe profiles. Devices were mailed to participants with instructions on activation and authorization of data sharing between the manufacturer and PatientsLikeMe. As part of PatientsLikeMe’s member engagement framework, a live concierge service was available to participants to provide answers to technical and other questions. The study also took full advantage of the PatientsLikeMe platform and health tracking tools to engage participants with their data, and with each other. Study participants were able to track their physical activity levels on the PatientsLikeMe website and connect with each other in the MS discussion forum to talk about changing symptoms, benefits and issues. Data were collected for a period of three weeks, and patients were asked to complete a survey to provide feedback on their experiences with the device.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


Seeing [MS]: The invisible symptoms – balance

Posted April 8th, 2015 by

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.


Getting to know our Team of Advisors – Deb

Posted March 27th, 2015 by

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 fortunate that, because of my work, I have been able to see clinical research from the perspective of both the patient and the researcher. I have worked with and for many organizations, researchers, and physicians over the course of my career, and I have found that, ironically, the patients themselves are often invisible in the research process. If patients are thought of as “cases” rather than as real people, and if patients don’t understand what is being done and why, then the research effort has lost what should be its central purpose.

The story of how I came to be diagnosed with MS illustrates some important points that I feel are related to patient centeredness and the work of PatientsLikeMe’s Team of Advisors.

On opening day of show season in 2009, I found for some reason that I couldn’t ride very well. Everything was off, and my body felt very strange. Embarrassingly, that day I received the lowest scores of my riding career! Days later, I found myself in the office of a neurologist, who off-handedly ran down a laundry list of differential diagnoses, ranging from a pinched nerve or Lyme disease (the latter is common among horse people) to Parkinson’s or multiple sclerosis. After weeks of anxiety and a multitude of tests, the same doctor casually informed me over the phone that “it looks like you have MS.”

At age 52, I couldn’t believe my ears, especially since my ex-husband had been diagnosed with MS many years before, very early in the course of our marriage. Back then, there wasn’t an MRI machine around every corner. It took 5 years after his first attack for him to be diagnosed. At that time, I was working for a major medical specialty organization, so I went to the library (no one had computers yet) and found everything I could about MS. Then we both started reading. At a time when the official slogan of the MS Society was “MS: The Crippler of Young Adults,” we learned that having MS didn’t mean you would necessarily end up in a wheelchair. The information we gathered reassured us. He went on to lead a totally normal life during the 10 years of our marriage.

I see these two incidents as related in very important ways. Having accurate information about MS kept my ex-husband and me from fear and despair. And the casual manner of the neurologist who gave me the MS diagnosis served as a perfect example of how NOT to interact with patients. Both incidents relate to how important it is for both researchers (who publish their results, which eventually may make it into patient information materials) and clinicians (who should take into account how it feels to be on the other end of the conversation) to keep the “end user”―the patient―at the forefront of everything they do.”

Deb on being part of the Team of Advisors:
“Being a part of the ToA has been a profoundly rewarding experience. I have made friends that I know I will keep once our terms are over. Like my colleagues on the ToA, I am deeply grateful to have the opportunity to be heard, without condescension, as a person experiencing a disease and its effects, and to have an opportunity to have a say in how research is conducted.

PatientsLikeMe has as its mission nothing less than changing how research is conducted, and I am excited and honored to be even a small part of that. There is a long-standing divide between the researchers who conduct clinical trials and the practitioners who provide health care to patients. Too often, patients are lost in the middle. The research/clinical divide has long needed a third party to bridge the gap. That third party is the patients themselves. By starting at this common ground—the patients whose lives are affected by both research and clinical practice—PatientsLikeMe is making important strides in bringing together these traditionally divided camps for a unified purpose: to better the health and quality of life of real people.”

Deb on MS research:
“Like my fellow Advisors and PatientsLikeMe itself, I believe that much can be learned from patients’ experiences, and this information should be used to design research studies. My own experience serves as an example of this.

In the weeks and months after my initial diagnosis, I found that movement was vitally important. MS is, after all, a movement disorder. My fellow horsewomen rallied to my side, lending me their quiet mounts to ride until my symptoms abated and I could safely ride my own high-spirited (to put it politely!) mare again. Those women―and the horses themselves―kept me moving.

When my current neurologist first met me, she told me that, having looked at my MRIs before our visit, she was amazed at how well I was doing. Although I don’t have scientific evidence for it, my belief is that my riding has kept the disease from progressing further than it has.

This is an example of how patients’ experiences can inform research. To date there are maybe a dozen studies on the effects of sustained physical exercise on MS disease progression. There need to be more clinical trials in this area, as well as in other chronic conditions, that are based on patients’ actual experiences. Those experiences―though anecdotal―are a treasure trove of possible study questions for clinical research.”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

Share this post on Twitter and help spread the word for multiple sclerosis.


MARCHing together for myeloma awareness

Posted March 20th, 2015 by

There’s a lot of awareness going on in March. So far, we’ve learned more about sleep conditions (how pain can increase sleep debt), multiple sclerosis (the myths and facts) and brain injury (how it might be more common than you think). Today, we’re shining a spotlight on myeloma, a type of blood cancer that affects more than 750,000 people worldwide.1

You can add to your knowledge during Myeloma Awareness Month (MAM), and educate your friends and family about the condition. Awareness is contagious.

Here are the basics about myeloma:

  • Myeloma is the second most common blood cancer in the world
  • It begins in plasma cells (white blood cells that are part of the immune system) and eventually collects in bone marrow
  • When myeloma collects in more than one location in the body, it is called “multiple myeloma”
  • Common symptoms include bone pain, anemia and extreme fatigue

It’s estimated that over 24,000 new cases of myeloma were diagnosed in 2014.2 For these people and everyone living with myeloma, here’s how you can get involved in raising awareness:

As the IMF says, let’s MARCH together for myeloma awareness this month. If you’ve been diagnosed, read about PatientsLikeMe member AbeSapien’s journey with multiple myeloma in his interview. And don’t hesitate to reach out to the more than 1,600 PatientsLikeMe members living with multiple myeloma.

Share this post on Twitter and help spread the word for Myeloma Awareness Month.


1 http://mam.myeloma.org/educate/

2 http://seer.cancer.gov/statfacts/html/mulmy.html


Myths vs. facts about multiple sclerosis

Posted March 18th, 2015 by

Stop! What do you know about multiple sclerosis (MS)?

That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition.

There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round.

What’s the community saying?

“The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness”
-MS forum thread

“I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.”
-MS forum thread

“A society that attaches a stigma to our disease when people fear it or don’t believe it exists, then discriminates against us instead of trying to imagine what our lives are like.”
-MS forum thread

Already a member? Awesome! Click on any of the links above and join the conversation. Not a member? No problem. Sign up for free here and then add your thoughts. Every voice is welcome.

Share this post on Twitter and help spread the word for MS Awareness Month.


Hacking our way to new and better treatments with integrated biology

Posted March 13th, 2015 by

When it comes to discovery and healthcare advancements, too many of us are more focused on the processes we use today rather than at a first principals level looking and what’s possible. We are a sector desperately in need of disruption to accelerate the generation of knowledge and lower the costs of developing new treatments for patients today. We need to ask what are the best ways to generate actionable evidence that can benefit patients, clinicians, payers and regulators.

We need to take an integrated approach to biology and treatment discovery.

Large-scale approaches like genetics, the biome, metabolomics, and proteomics are coming down in price faster than the famous Moors law that has driven computer improvements. These tools are beginning to allow us to understand the biological variation that makes up each of us. This is the technology I used at ALS TDI; the organization I founded, to help learn about the early changes in ALS. This emerging technology needs to be met with well-measured human outcomes.

PatientsLikeMe is working to build that network. Our goal is to be a virtual global registry with millions of individuals sharing health information, translated into every language and normalized to local traditions fully integrated into the medical system so it’s part of care and incorporates information from the electronic medical record, imaging, diagnostics and emerging technologies for interrogating biology.  We are doing this because to understand the biology of disease we needed to understand the experience of disease with the patients as true research partners.

This isn’t just about integrating biological methods to forge discovery. You can’t just consider the science; you also have to consider the person. No two health journeys are exactly the same. With integrated biology, you have to look at the whole person: their social interactions, socioeconomic status, comorbities, environmental impacts, lifestyle factors, geographical location, etc. To accurately model a condition like ALS, or any of the other 2,300 conditions that PatientsLikeMe members are living with, we need to understand everything that can impact progression. We need to use those real-world patient experiences to inform and improve the drug discovery process.

There is much that needs to be solved to move from our current siloed approach to the integrated one and we have had the privilege of being involved in one of the most innovative. Orion Bionetworks brought together leaders from across the MS Field to develop an integrated model of the disease and they are now moving forward with an even more ambitious project.

They’re using computational predictive modeling to bring together different scientific methods and big patient data to find treatments that work and biomarkers that measure them to the people that need them faster. Said differently, they are hacking their way to treatments, because that’s the only way it’s going to work.

They’ve already got a validated model: Orion MS 1.0. And now they want to develop a new Orion MS 2.0 model. Learn more about their #HackMS campaign and how you can help.

We are highlighting Orion here because what they are doing is so innovative and worthy of support. I donate to ALS TDI, the institution I founded, because I believe in the mission and their approach. I also have donated to Orion because if we need to do anything in discovery we need to support the people that are trying to do it differently. What they are proposing is so innovative and powerful in its scale that it has the potential to redefine how we understand and treat MS. That’s why we are partners with them and it’s how we meet our responsibility to our MS patients to use their data for good.

PatientsLikeMe member JamesHeywood

Share this post on Twitter and help spread the word.


March is Multiple Sclerosis Awareness Month

Posted March 9th, 2015 by

Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month.

What more do we know about MS? Doctors are unsure of the root cause of the condition, but women are twice as likely as men to develop MS. Additionally, the farther away from the equator you live, the greater likelihood you’ll experience MS – overall, your lifetime chance of developing MS is about 1 in 1,000.1

Did you know that there are four different types of MS? Each one affects people a little differently.

  • Relapsing-remitting MS (RRMS) affects the large majority (85 percent) of MS patients, and this type features clearly defined periods when symptoms get worse and activity decreases.
  • Primary-progressive MS (PPMS) causes a clear progression of symptoms and equally affects men and women.
  • Secondary-progressive (SPMS) is a form of PPMS which is initially diagnosed in only about 10 percent of patients.
  • Progressive-relapsing MS (PRMS) is found in only 5 percent of MS patients, but these people have both clear relapses and a clear progression of symptoms.

So now that you know more about MS, what can you do to help raise awareness? Here are just a few of the ways the MSAA recommends:

  • Read one of the MSAA’s publications, including the recently published annual MS Research Update, which includes the latest developments in MS treatments and research.
  • Find and attend one of the MSAA’s educational events for people with MS and their care partners.
  • Register for Swim for MS, which encourages volunteers to create their own swim challenge while recruiting online donations.
  • Check out the Australian MS Society’s Seeing [MS] campaign, which features MS patients and photographers working together to visualize the invisible symptoms of MS.
  • Share on social media using the #MSawareness hashtag and MSAA profile badge.

If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts, or join more than 38,000 people with MS at PatientsLikeMe.

Share this post on Twitter and help spread the word for MS Awareness Month.


1 http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic


Seeing [MS]: The invisible symptoms – brain fog

Posted February 23rd, 2015 by

Australian Jessica Anderson has been living with multiple sclerosis since she was 12 years old, and she says brain fog is the scariest symptom she experiences, especially not being able to gather and make sense of her own thoughts. During her worst moments, she can barely focus on a thought for more than 30 seconds. Listen to Jessica speak about her symptoms below.

 

You are now seeing brain fog

Photographed by Sara Orme
Inspired by Jessica Anderson’s invisible symptoms

Jessica and New Zealand photographer Sara Orme worked together to visualize Jessica’s brain fog, and 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.


PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Posted January 21st, 2015 by

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

Share this post on Twitter and help spread the word for MS and chronic pain.


Seeing [MS]: The invisible symptoms – fatigue

Posted January 15th, 2015 by

“It’s like I’m deflated. I don’t feel like doing anything.”

That’s how Darcy McCann says he feels on most days. He’s a young Australian who was diagnosed with multiple sclerosis [MS] at the age of 10, and his most debilitating symptom is fatigue, which comes and goes as a result of his nerves being constantly under siege.

 

You are now seeing fatigue

Photographed by Juliet Taylor
Inspired by Darcy McCann’s invisible symptoms

Darcy worked with award-winning photographer Juliet Taylor to capture how he feels when enduring bouts of fatigue. His 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.


The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.