PatientsLikeMe Develops Patient and Scientific Advisory Boards

Posted September 17th, 2014 by

Company Forms First Member-Based Team of Advisors,
Names New Participants to ORE Scientific Advisory Board

CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. The company also named three new members to the Scientific Advisory Board for Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues. ORE was created with support from the Robert Wood Johnson Foundation.

A long-time advocate for the patient voice in medical research, PatientsLikeMe posted an open call for the patient-led Team of Advisors in its member forums and was overwhelmed with applications. “Our members are at the heart of our pioneering approach to research, and they’re very focused on sharing their experience to improve medicine,” said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Now their voice will extend even further as we continue to revolutionize the way that healthcare is developed and delivered.”

Team members are representative of the PatientsLikeMe community at large and include veterans, nurses, social workers, academics, and advocates. They range in age from 32 to 67 years old, and two thirds are female. They are also living with a cross section of conditions, including amyotrophic lateral sclerosis (ALS), attention deficit disorder (ADD), bipolar II, epilepsy, Fabry’s disease, fibromyalgia, lupus, major depressive disorder (MDD), multiple sclerosis and Parkinson’s disease. Members named to the team include: Letitia Browne-James, Emilie Burr, Lisa Cone-Swartz, Charles DeRosa, Amy Fees, Geof Hill, Dana Hunter, Rebecca Lorraine, Kitty O’Steen, Steve Reznick, Karla Rush, and Deborah Shuman. Bryan Kincaid, an initial member of the team living with idiopathic pulmonary fibrosis (IPF), passed away last month. “The data that Bryan shared on his condition and his contributions to the team live on and will continue to have lasting impact,” Evers said.

The Team of Advisors has already met in person and will spend 12 months providing feedback to PatientsLikeMe’s research team. As part of their work, they will develop and publish a guide that outlines standards for how researchers can meaningfully engage patients throughout the research process. Amy Fees, who is living with Fabry and lupus, said: “I feel encouraged that the particular people chosen for this team share a passion for making something more out of their diseases than an affliction and a curse.”

PatientsLikeMe also added three advisors to its ORE Scientific Advisory Board. The group was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE. New advisors include:

  • Dr. Helen Burstin, Chief Scientific Officer of The National Quality Forum;
  • Eugene Nelson, Professor of Community and Family Medicine and Director of the Dartmouth Institute’s Population Health Measurement Program;
  • Ken Wallston, Professor of Psychology in the School of Nursing, Vanderbilt University.

Information on all ORE Scientific Advisory Board members is available at https://www.openresearchexchange.com/advisors.

About ORE
PatientsLikeMe’s Open Research Exchange (ORE) was launched in 2013 as an online hub to help researchers design, test and openly share new ways to measure diseases and health issues. ORE involves patients at each step of the measure development process, enabling PatientsLikeMe’s members to guide and contribute to research so that it better reflects their needs. ORE is supported by grants from The Robert Wood Johnson Foundation.

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 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com


“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS

Posted September 15th, 2014 by

 

There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight supplements. Read on to learn more about her ALS story and why she thinks every person living with ALS should become their own best advocate.

 

Tell us a little about yourself and how you are doing, Dee.

I am 62, married and a mother and grandmother. I have bulbar onset of ALS. I have always been very active and independent to a fault. I was raised horseback riding and still have a horse. I am told my disease is progressing slowly but of course to me it doesn’t feel that way.

Many people in the community talk about how finding an official diagnosis isn’t easy – what was your experience like? 

I actually found out fairly quickly. My symptoms started in April 2013. First doctor thought it was a stroke, second told me it was stress and of course they did MRI’s and blood tests, basic neurological exam and a stress test. Third doctor did an EMG. That was June 2013. Finally hearing someone say it out loud was initially a relief. That feeling didn’t last long.

In the ALS forum, you wrote about your decision to get a feeding tube in February. How has the operation changed your everyday life?

My first doctor told me I had to lose 15 % of my weight for him to order a feeding tube put in. Now understand, my first symptom was slurred speech and within days, difficultly swallowing. We had several issues with this doctor and clinic so we changed doctors. This was January 2014. He asked me several key questions, like; how difficult eating was, did I enjoy my meals or were they a chore, how did food taste, how often did I choke? He said his experience was that doing the feeding tube surgery earlier had better results. The stronger I was the better. We did it within two weeks of that appointment (February 10th). As of the end of May, I am no longer able to eat solid food at all. I have lost about 10 pounds but am currently maintaining well by having my supplement given to me overnight through a Kangaroo pump.

How has being a registered nurse shaped your perspective?

I’m not really sure except that I felt confident I knew what I had before any doctor was willing to diagnose it, and knowing what was ahead of me was frightening. It has made me good at being my own advocate. By being my own advocate, I mean when how I feel doesn’t coincide with what “the professional” is telling me, I speak up and or look for someone who will listen. We all know our bodies better than anyone else and every case of ALS is unique in some way. We have different symptoms, different rates of progression and some have pain, some don’t. Make sure you’re not being categorized. If what they say just isn’t what your gut tells you; speak up! Advocate for what you think is best for you and the way you want to deal with your disease. If you don’t speak on your own behalf who will?

What is one thing you have learned on your journey that you didn’t expect?

I have come to realize that our lives revolve around meals. We are all social beings, and we come together over food and drink. Not being able to do that is really a challenge and even makes the ones around you uncomfortable. Food is comforting and even though I have never been a big eater and I’m not ever hungry, I really miss the tastes and experience.

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Nola’s new bathroom

Posted September 11th, 2014 by

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 might be uncomfortable or absolutely undignified. But you have to do what you have to do.”

As her MS progressed, Nola discovered that the 6-inch lip at the bottom of her shower was an impossible barrier. She could get one leg up over it, but she could no longer pull the other leg in, which prevented her from being able to get into the shower to fully bathe herself.

She hired a contractor to build her a handicap-accessible bathroom, and paid half of the money up front:

“He started the project, but he got ill. He lost his regular job and eventually lost his home. I had paid him ahead of time half of the amount, but then when all of these terrible things happened to him, I went ahead and paid him for the rest of the job, even though he had hardly started. He really needed the money. He’d come every once in a while and do a little work. As he got more ill, it just became impossible for him.

It ended up that I still didn’t have a bathroom and I had lost quite a bit of money. I did not have the money to hire somebody else to do this. I wanted to be able to stay in my home, but it was getting to the point where I couldn’t even take care of personal hygiene.”

Nola went 6 years without a shower, until:

“Members of PatientsLikeMe that are in this one particular group with me, we’ve all become close friends over about maybe the past 5 or 6 years. We’ve always relied on each other for moral support. It was my place to complain a little bit. Everyone knew the story and they’d all been rooting for me and hoping that I could get this bathroom done. It had been over a period of 2 years of waiting and waiting.

Gary, here, who works at a Home Deport, 3,000 miles away, on the other side of the country, got this idea. Home Depot sometimes does these charity projects. He suggested that I find out if they might help me.

Gary (1955chevy) did indeed help Nola from his home in North Carolina. Check out the photos on Pinterest below!

We told Nola we’d share some tips and tricks she learned from her PatientsLikeMe community for others to learn from. With a number of different products and limited resources, it’s hard to know what to invest in. Visit this thread to see some of the suggestions Nola has for you and to add your own.

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“Treat the person, not the disease.” An interview with nurse practitioner Phyllis Zimmer

Posted September 8th, 2014 by

Family Nurse Practitioner Phyllis Zimmer has a Master’s degree in Nursing and is a Fellow at both the American Academy of Nursing and the American Association of Nurse Practitioners. It sounds like Phyllis always knew she wanted to be a nurse, but truth be told, Phyllis wasn’t sure what her career path would be until she decided where to apply to college. Then it all came together.

Read on as she describes her passion for nursing, her own experiences as a patient, and some of the important questions patients should ask their doctors and nurses.

You seem passionate about nursing. Why did you become a nurse in the first place?

The short answer? I don’t know. Maybe it has something to do with my years as a Girl Scout, and always wanting to make a difference in my life.

When I was in high school, trying to decide on a college, I told my parents that I wanted to be a nurse, but I had no idea where that came from. Years later, I found out that my paternal grandmother, great aunt and her sister were all nurses. My family has a wonderful photo of the three nurses wearing long, floor-length pinafores, watches around their necks, and winged nursing caps.

Then when I was an undergrad, I saw nurses in action and thought, “I want to do that!” So I became a nurse, then a nurse practitioner and have practiced as a nurse practitioner ever since.

Tell us about what it means to be a nurse practitioner.

As a nurse practitioner, you have a huge responsibility to provide quality care, but also an amazing entrée to patients’ personal lives. People trust you. They’ll tell you things about themselves that you’d never dream you would learn about another person.

I feel so honored when people are comfortable enough to share both the joys of their lives – the births, the experience of being a new parent, as well as the difficult parts of their lives – something they’re afraid of, a new symptom or disease they are coping with, a sexual problem. People talk about intimate personal issues: domestic violence, concerns about alcohol use or fears about death or dying. They trust me to listen and to help.

The nurse practitioner role blends what I love best about nursing – the advocacy for people, patient teaching, and patient-centeredness of my profession – and what I love about medicine: making the diagnosis (solving the puzzle of what the symptom or problem is), the clinical decision-making, providing treatment that is medicine.

I also like the level of autonomy nurse practitioners enjoy. I’m accountable and responsible for my own practice.

Do nurse practitioners specialize?

Yes. Nurse practitioner programs are offered in specific specialty areas – family medicine, pediatrics, adult/geriatrics, acute care, psych/mental health, and so on. The broadest scope of practice is the Family Nurse Practitioner, who sees patients for health and illness concerns across the age span. The Pediatric Nurse Practitioner, in contrast, sees only children.

Your specialty determines the scope of your practice. Nurses choose their nurse practitioner specialty based on where they are most comfortable and have the most interest. The data says that nurse practitioners do a great job, and offer high quality care regardless of specialty.

I began as an adult nurse practitioner, and when the masters program became available I went back for my master’s degree and chose family medicine because I enjoyed seeing both adults and children, and wanted the broadest scope of practice possible.

Can you tell us about an experience that really affected you?

Definitely. One of the most impactful experiences I’ve had was as a brand new grad. I’d only been practicing for a short time, and I was given a referral to see a woman who had been diagnosed with lung cancer.

After she was sent home from the hospital, I was assigned to do her discharge and follow-up care. The family decided that she was not to be told she was terminally ill. She’d been doing well, and she was able to care for herself and get around for a while. I visited about once a month to check on her.

As she got sicker, I did home visits more often. From monthly visits, I moved to every three weeks, then every two weeks, every week, then every day, and finally several times a day. We became close. The family wanted to provide her care themselves, so we moved a hospital bed into her home, she went on oxygen, and I worked with the family to support them in caring for her.

It was a slow, gradual, downhill course. I still remember the day when she and I were in her bedroom, talking. She asked me why her family wouldn’t talk to her.

I asked what she meant, and she said, “I know I’m dying.”

As a nurse, I was treading on delicate ground. I had specific instructions from the family—I couldn’t confirm or deny anything. So I tried to listen, and tried to be a coach for her and help her feel comfortable raising the question to her family directly.

It was hard for her to talk with her family. There were a lot of tears. But then, it got so much easier. Feelings of fear, sadness, anxiety, all were shared. They had opened the door to communication, and each family member had an opportunity to share their thoughts with my patient. These were important final conversations. I realized then that this is how end-of-life care should be.

I understand you had surgery. Why? What happened?

I found a mass. It turned out to be benign, but it was big and needed to come out.

Actually, I found it in the middle of the night, and I was shocked. My husband’s a doctor, but I waited until morning to tell him and then went in for tests to find out what it was.

I was just like some of my patients – I didn’t want to deal with it!

School was restarting. I had a million things to do, with teaching and practicing. I thought maybe I could manage the problem medically for a while. That lasted a few months, and then I had a period of time where I had more pain than I’ve ever had in my life. So, two days after school got out, I had surgery.

I was scared to death.

I imagined not waking up from anesthesia. So I talked with the surgeon and the anesthesiologist and asked if there was any way to avoid being intubated and having general anesthesia. They said they might agree to do just an epidural instead of general anesthesia.

For me, that was the lesser of two evils. The choice was being intubed and having a longer recovery versus having an epidural (an injection into the spinal area), with a shorter recovery but being awake during surgery. I got the anesthesiologist and the surgeon to agree to the epidural. The biggest advantage of the epidural was that I had an incredibly speedy recovery, and I felt more in control. I also conned my hubby to be in surgery with me – and we talked during the procedure, which I found very comforting.

But there were definitely moments when I felt I had no control- and I was afraid. And the entire procedure of having surgery is tough. You feel a loss of privacy, you feel embarrassed. The gown is open at the back, and so you feel exposed, even though everyone tries hard to keep your modesty intact. You may need an IV or a catheter, or some other procedure to “prep” for the surgery, and you have to deal with it. In my case, everyone tried hard to be respectful and explain things, which taught me how much we, as patients, need that kind of support.

The only really negative part was that they asked me in admitting if I wanted to be an organ donor. I don’t think you should ask someone that on the day they’re having surgery!

Do you think your nursing background helped prepare you to be a patient?

All of my nursing experience is in outpatient care, and the hospital environment is very different. But, yes – it made the difference in helping all the parts come together. I knew a lot of what to expect from admission, to the surgery, and after. When you’re the patient and you have monitors beeping and IVs in your arm and you feel very vulnerable. But being in nursing helps you feel a little more in control. For example, I knew my discharge plan. I felt ok and not weak and dizzy, and I could do some things on my own. I knew what I couldn’t do when I got home. I had clear written instructions and knew who to call if I had a problem. I went home in 24 hours instead of in several days. My nurses made sure I could go to the bathroom, could walk and not fall over, and was able to eat and drink.

What were your nurses like?

I had three different nurses caring for me, and each had a distinct style. One was an older, really experienced nurse with a very “cut and dried” approach, and she was great. She got things done. One was younger, newer to the profession, sweet, very kind and caring. The third was a wonderful Irish nurse with a darling brogue. She was a blend of the other two, and she had a great sense of humor. Each of my nurses brought something different to my care. They all were competent and inspired trust.

And, my Mom came and sat in the room with me and read a book or knitted or whatever. She wasn’t talking with me much, but as a patient, it was hugely reassuring to have my Mom there. It made me think: As a nurse, do I welcome a family member, help them know what they can and can’t do?

How did your own experience change your practice, if at all?

My nursing career began as a public health nurse, and that background makes you think about care in the broadest sense- public health nurses look at community and family variables as well as the issues for the individual patient. I’ve always had that “holistic” mindset. But being the patient yourself, experiencing the fears, the questions, the difficulties of doing what you are supposed to do when you don’t feel well, makes you practice differently. I think it makes you more understanding, more empathic.

When I think about all the things I’ve learned as a nurse, and my experience as a patient, the most important lesson for me is to treat the person, not the disease. And remember that each person has people in their lives, family, friends, partners, etc., who are concerned about them. The patient needs care, but so do those who love that patient. They need attention as much as the patient does. My experience made me even more aware of how valuable nursing can be – the truly important role that nurses play in patients’ lives each and every day.

What advice would you give patients, from a nurse’s point of view?

I’d tell them, “Ask questions and make sure you understand all your options.”

If you’re given only one option, it’s not enough. Ask what the full range of possibilities are, and what are the pros and cons of each approach.

Personally, I’d ask: What is your best advice for me as a person, and why do you say that?  In other words, the best for me, not someone else. If I were your sister or mother or wife or friend, what would you advise?

The more you know, the better. Don’t be afraid to ask questions. If they use a word or name a med you don’t recognize, you absolutely have a right to know. It’s your body, your life, and these are your decisions, not our decisions.

My job is to support your choice. I don’t always have to agree with my patients, but I think I do owe them information about why I don’t agree. As a patient, you trust your health and well being to our care. It’s my goal to always be worthy of that trust.

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Let the world know about pulmonary fibrosis

Posted September 7th, 2014 by

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+ members strong, making it the largest online gathering of IPF patients anywhere in the world. In just a year, the community has almost tripled in size, and everyone is sharing about their experiences so that other patients, doctors and researchers can learn more about life with IPF.

But what exactly is IPF? Pulmonary fibrosis (PF) is a medical condition that causes lung tissue to thicken, stiffen and scar over a period of time, and “idiopathic” means “no known cause.” According to the Coalition for Pulmonary Fibrosis, there are over 100,000 Americans living with IPF at any given time, and an estimated 40,000 will die from the condition every year. And besides a complete lung transplant, there is no known cure for IPF.1

Today, the Pulmonary Fibrosis Foundation (PFF) is encouraging everyone to educate, share, fundraise and start conversations about IPF. You can learn more about how to get involved through the PFF’s toolkit and guidelines for September.  And if you or someone you know has been diagnosed with IPF, join the community at PatientsLikeMe – let’s change who knows about this condition and promote a better understanding of IPF all year round.

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1 http://www.coalitionforpf.org/facts-about-idiopathic-pulmonary-fibrosis/


Throwback Thursday: Jamie talks about the future of medicine

Posted September 4th, 2014 by

It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients:  “Given my status, what is the best outcome I can achieve and how do I get there?”  Watch what else he had to say below:

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Food for thought: August edition

Posted August 28th, 2014 by

Are you trying to lose weight in time for the fall? Or are you hoping to gain a few pounds instead? Weight fluctuation is a part of everyone’s life, and PatientsLikeMe members have been sharing about their weight management in the forum, everything from the Primal Blueprint 21-day diet to alternative substitutes for pasta and carbs. Read what everyone is saying.

“Finished my first week on the diet, I lost 3 lbs and my psoriasis is not as bad, it has cleared up a little…I do miss carbs though.”
-IPF member

“I think I would very much like to increase my fiber intake in the form of soup made of tolerated vegetables. I think soup will be much more easily digested than some other ways of increasing fiber and maybe cause me less problems, I hope.”
-MS member

“I’m Italian, so that’s a major problem with Type II! I can’t go very long without a dish of pasta. Does anyone have a REAL suggestion for a substitute? Or am I going to have to tempt the fates once a month or so and have a dish of pasta? I tried spaghetti squash. It was like eating shoelaces!”
-Diabetes type II member

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And don’t forget to check out our other Food for Thought posts if you missed them.


Results! PatientsLikeMe diabetes members share about challenges and concerns

Posted August 25th, 2014 by

Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the difficulties of communicating with their doctors.

 

This is real-world, patient reported health data doing good; helping others living with diabetes learn more from people just like them and showing researchers where to focus their efforts in the future. Click here to view the results.

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Seeing [MS]: The invisible symptoms – pain

Posted August 22nd, 2014 by

“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.

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“This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD

Posted August 18th, 2014 by

Talking about past trauma isn’t easy – so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you may not see visible symptoms, a person can still be suffering on the inside.

Will you tell us about your story and what happened?

On January 11, 2012, when my husband Tim, my daughter Amanda and I left home around 5:45 PM to pick up my friend’s children for church, we had no idea how much our lives would forever be changed. Statistics show most accidents are within 2 miles of your home, but I wonder what statistics are for accidents caused by your neighbor’s teenage daughter.

I was driving and waiting to turn into the development where my friend lives, and as I looked in my rearview mirror, I noticed headlights coming closer and getting brighter. I started yelling to my husband that the car behind us isn’t slowing down. I tried to hit the gas, BANG…I remember seeing the Ford emblem on my steering wheel, then next thing I knew…I was screaming for my daughter and husband. Then my husband jumped out of the car screaming at the other driver. All the while I’m stuck in the car and nobody realized how bad my injuries really were. My husband comes back to our car saying Jessie, it’s our neighbors daughter. My heart sank.

The EMTs called for the “Jaws of Life,” but I apparently wouldn’t have that with our daughter there, so they somehow relieved pressure and got me out.

I was taken to the nearest hospital, where I was diagnosed with a concussion, neck and back injuries and sent home that same evening. Yes, same evening. The doctor instructed me to follow up with my primary within two weeks if I felt no improvements. So here’s where it’s gets interesting: went to primary within in couple days because I wasn’t improving, and I was referred to neurologist and physical therapy.

I met with neurologist, and this would be the first time I would hear the term that would haunt me forever: Post-Concussion Syndrome. I was officially diagnosed, and I feel it’s been a downward spiral since. I started PT shortly after, all the while I had perforated my colon during the collision and was never checked. It leaked for 4 weeks until it finally ruptured and I went into septic shock at home. The surgeon said if my husband wasn’t home my daughter may have come home from school to find me lifeless in the bathtub. So the PT and head injury took a backseat to the rupture. That took many months of recovery, and my husband even put a temporary bedroom in our dining room because I wasn’t able to go upstairs to bed. That was the worse pain I ever experienced in my life.

I know I’m getting a bit winded here but there’s just so much to my story, all because of a 17 year old driving while on a device…

Once I recovered from the rupture, the neurologist and therapists discovered how severe my other injuries truly were/and still are today. I’ve been diagnosed with Post-Concussion Syndrome, PTSD, vision issues, dizziness, short-term memory issues (which my last evaluation showed was severely impaired), and tremors, which we are hoping isn’t Parkinson’s. These are just a short list because I can’t remember all of them at the moment.

How has that changed you and your family’s lives?

This has changed everything! I was supposed to be going to school to be a dentist at this point. It’s sad how somebody else can control your destiny for you and completely mess you up forever. I have God awful mood swings! I’m not the person I used to be, someone who my husband could count on that he could tell me a list of things to get done in a day’s time and I’d remember to do them. He doesn’t like me to cook when I’m home alone because I forget things are cooking and walk away from them on the stove. I’m only 41 years young and trapped in the mind of a 90 year-old sometimes. This injury has put a lot of pressure on my husband to not only provide for us but to worry about me and my health. He knows my health is never going to get better, and there’s always the fear of the long-term issues with head injuries. The unknown. All because of a 17-year kid, I’m sorry to keep saying it, but sometimes I can’t believe it myself.

What are some ways you cope with your conditions?

I cope with my conditions by leaning on my husband, he makes me laugh a lot! I cry a lot. I would like to speak out more about not driving while on a device but I’m working on it. I’ve done therapy but I didn’t feel as though the therapist “got it,” if you know what I mean. I’m learning every day to cope with my condition and so are my family members. It’s harder for them since this is a harder injury to see.

What is a good day for you, what’s a bad day?

I wake up every day hoping is this the day I will be “normal” again? A good day is when I can fully function without snapping or flipping out on my loved ones, when I can actually complete a full grocery shopping trip in one trip, when I have the energy to do laundry and make beds, and when my vision issues don’t act up to the point where I can’t see.

My bad day, I feel I could dig my own grave and lay in it forever, when the ringing in my ears is so terrible (like this very minute) I have to drown it out with white noise just to sleep, when I have to take medication to sleep every night so I get brain rest otherwise, I only get 2 hours of sleep, the worst day is when I’m falling a lot and so dizzy it’s like the drunk spins but without the party.

What do you want others to understand about living with PTSD and TBI?

The one thing I would like people to understand about PTSD is it’s not something to brag about having, it’s not glamorous, this is a very serious issue. I have panic attacks, nightmares and terrible anxiety sometimes so bad I won’t leave my house because I want to avoid getting back into the car again.

I want people to understand about TBI. Think of it this way: go home, turn on every television in your home full-blast, radio same thing, have your kids play around you really loud, and have flashing lights – now get on the phone and try to pay attention. You can’t. That’s what’s it’s like to have a TBI for me. I can’t filter things out, it’s really hard to. Sometimes I just need a quiet break.

To sum it up for both, please don’t judge a book by its cover, it may be masking a bigger issue. I hide my symptoms a lot more often than I should. Just because you can’t see the injuries doesn’t mean I’m not screaming on the inside.

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Putting the spotlight on ALS

Posted August 15th, 2014 by

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:

 

Even Stickman made an appearance to help out our friends Jeff Dwyer and Adam Darowski:

 

Of course, it’s not just about pouring water over our heads – it’s about donating to ALS research and educating everyone about what it’s like to live with ALS. The only question is…do you accept the challenge?

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

Posted August 13th, 2014 by

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 that’s another story. I’ve been, happily, with my partner for 10 years now, and we’ve lived together for 6 of those. He’s lovely and supports me without being ‘arm-strokey’ about it, which I’d hate. We’re similar in temperament and just adapt when necessary and get on with it. Oh, and we laugh lots!

What was your journey like to diagnosis? How has your life changed since MS?

Aaah, the ‘six million dollar’ question. Since I was in my early teens, or maybe even a bit before, I’ve had unexplained illnesses. I thought hormones played a part as I was usually worse during PMT. I started periods when I was 11 and the PMT really kicked in about a year later so it ties in. I was always ill after a big life event: house move, job move, parachute jump, etc., but as doctors’ tests were negative, I got fed up with being told “The tests are negative so you must be ok…”…….what??! So I went to the doctors because I was “ok”…I think not!

Finally, after an MRI showing lesions in my brain, I was diagnosed at the age of 52, 3.5 years ago. My doctor phoned me one Staurday and told me he thinks it’s MS, but the neurologist would confirm it the following week. I can only think he phoned me because he was shocked (I ended up comforting HIM because I felt bad for him having to tell me). Afterwards, I was left with thinking about it, alone, because my partner Bob was out for the day and it was the weekend, so there was no professional I could talk to. I just tried to put it out of my consciousness and let it sink in naturally. Poor Bob was more shocked than me, I think, and a friend who’s an ex-nurse hit the roof that he’d told me like that and pointed out that the news could have tipped me over the edge to take my own life or something. I’ve since heard that suicide is quite high amongst MS sufferers. I can understand that, on a bad day futility seeps into my mind…BUT…my spirit kicks in and bollocks me (she’s a stroppy mare!) and I’m back. I always say that if that side of me ceased to exist, then it probably would all be over. One of the tablets that the GP prescribed made me say to Bob “Death seems like a good option”…we said in unison that I’d be coming off those tablets then! I take as little allopathic drugs as possible, preferring vitamins, natural progesterone and cannabis tincture (great for pain and spasms)…it’s a shame that all that National Insurance can’t be put towards it. Pharmaceutical companies have it all sewn up, don’t they? Quick kick my soapbox away before I get started!

Sorry that was an immensely long paragraph! The other questions about how it’s changed my life is more straightforward, you’ll be please to know, haha. I was medically retired (they call it medical termination…ooer) from work as I could no longer walk without the need of crutches and as I was a tube train driver, for some reason (oh, that’ll be 640 volts!), they wouldn’t allow metal crutches down on the track. Oops. I was getting far too tired to commute and work a full day anyway. Bob & I worked together and sometimes I’d just sleep all the way in and all the way home, I was so knackered. Fatigue and mobility are the main two ways it’s changed my life. More about that below…

Who are Pegasus and Mad Anna?

Pegasus is my beloved Tramper (off-road mobility scooter). I first saw one on Top Gear, a 3-wheeler, and was impressed. I was still working, not yet diagnosed and not realizing that my mobility would get this bad, so it went forgotten until a year or so later. When mobility had become bad and the MS symptoms were invading my time, psyche and body, I became a bit withdrawn and stopped going out much. I couldn’t walk without pain or crutches and it was all an effort. I don’t know what prompted us to talk about Trampers but I then phoned the company to inquire about second-hand ones (they’re not cheap!) and the rep advised me to try one at a nearby country park that lent them out for free. We went…I “tramped,” I chatted with dogs…and their owners…I twanged branches as I sped through the woods, I laughed…I LAUGHED…and when Bob asked me if I liked it…I cried. Damn, I’m doing that now too, it was very emotional because it was so good. I felt like I’d got some of my life back. I’d loved walking, horse-riding and cycling in the past, had dogs and lived in the country, and missed it all so much. Now? I have been known to ‘click’ Pegasus like a horse (with no audience thank goodness). I am friends with many horses, donkeys, dogs, guinea fowl (on a farm nearby), oh and people, now and the words I have on the back of my seat say it all “I like the free fresh wind in my hair, life without care, I’m broke, it’s ok…” taken from one of my favorite songs, “The lady is a tramp.”

Mad Anna? Oh, I’m me. That’s it really unless you want me to write pages! Hahaha. See above in the ‘about me’ section, that’s me. I don’t do ‘pretence’ or falseness. I’ve never really but have got more ‘me’ as I’ve gotten older. When I turned 40 I said I’d never ‘suffer fools’ again. I was wrong, another long story, but when I turned 50 I said I really wouldn’t suffer foold…which means that when I turn 60, 70, 80 (and more???) I’ll probably be a right stroppy old mare! Haha!

What’s a good day like, and what’s a bad day?

Hmmm, a good day will see me up, showered and dressed before 10 and not so knackered that I can’t function for an hour. I will then go on to do something, go to the shops, the MS centre, or a Tramp. Have a short nap/rest/stretch then spend the evening with Bob, or alone (he works shifts) watching a film or similar. A Bad day will be what I call a ‘bed day’ because that’s where it will be spent. Shower? Dreass? You’re having a laugh.

Most days, however, are somewhere between those. Whole days are never the same all day. I liken having MS to riding a roller coaster like a rodeo rider would ride a horse. One arm flailing about as the horse bucks…YEEEHAAA! Sometimes, though, I feel like hiding inside the car while the roller coaster relentlessly keeps going. All things are done with rests in between, e.g. Get up late, 10-12ish, shower (if I can manage one), rest, dress, rest, breakfast, rest, potter a bit, rest, lunch, longer rest, Tramp (on a good day), rest, TV/write/read/chat, bed for the night. If I were to plot it on a graph it’d look like a mountain range or a big wiggly line!

How does PatientsLikeMe help you manage your MS?

I’d wanted to keep a health diary for ages but never got around to it, so PatientsLikeMe offered me the opportunity to do just that. Once I’d joined, I found some of the forums interesting and have had some nice chats. We’re all different, of course, but it’s interesting on many levels. MS doesn’t define anyone, or at least shouldn’t. I’m first and foremost me. I happen to have MS, which is kind of all consuming in many ways, but my character is bigger and stronger than MS and will not be changed by this b*ll*cks. :-D Please excuse the language, I’ve always found a good swear is a good way of releasing angst and getting me through adverse times, so it gest used lots nowadays. It’s my way. For angst I also have a punchball…and some lovely bright pink/fuchsia boxing gloves. Having fun in life is a necessity when at all possible.

I don’t know if this is of interest, but I wrote this poem not long after diagnosis:

Letters after my name
When you’ve got letters after your name that’s sometimes all people see
Some wear them like badges to define themselves. But that’s not for me
This is who I am. My big heart, my smile, my love
Not some label, description of an outside thing, given from above
For forms I’m asked is it Mrs, Miss, Ms? I have to say the latter
But I’d rather you use my first name as the label doesn’t matter
Twice married, twice divorced what title would you give?
Apart from ‘fussy’ I’d prefer a description of the way I live
I love the great outdoors, wildlife, photography, swimming, dogs
For me my life isn’t something contrived or written for others in blogs
I grab it by the short n’ curlies, give a shake and see what falls
Life’s expansive, fun, a challenge, whatever. It’s not contained within 4 walls
That’s why I refuse to weat the label endowed upon me by others
Or live my life as part of a club, a ‘merry band of brothers’
Although my title would be balanced by those suffix letters that is
I refuse to live under an invisible cloud of gloom that is MS.”

That’s all folks!

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Research, support and hope for spinal muscular atrophy

Posted August 11th, 2014 by

If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological disorders are sharing their stories and donating health data to help improve the lives of others and contribute to medical research. And in the spirit of Stephen and everyone living with these conditions, we’re recognizing Spinal Muscular Atrophy Awareness Month this August.

Spinal muscular atrophy (SMA) affects the nerves responsible for movement, including breathing and other bodily functions. It is inherited through genes passed on by parents who are carriers of the genetic code.

SMA affects people of all ages, genders and backgrounds. There are four types of SMA – Types 1, 2 and 3 all affect children and adolescents, while type 4 is usually limited to those above the age of 35. And although SMA is classified as a rare condition, think about this: SMA affects approximately 1 in every 6,000 babies, and about 1 in 50 people are carriers for the condition.1

So what can you do this August to raise awareness for SMA? Orange and purple are the two colors designated for SMA awareness, so wear or display them and let people know why you are! The Families of SMA (FSMA) also organizes many awareness events around the world, everything from walks to dinners to Bowl-A-Thons. Check out their website and find an event near you.

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1 http://www.fsma.org/FSMACommunity/understandingsma/quickfacts/


More than skin deep

Posted August 10th, 2014 by

 

August might mean the summer’s almost over, but the effort to raise awareness for psoriasis is going strong. It’s Psoriasis Awareness Month, sponsored by the National Psoriasis Foundation (NPF), and everyone is working to eliminate stigma and dispel the myths surrounding the skin condition.

 

 

Starting with the basics

Q: What is Psoriasis?
A: Psoriasis is a chronic, genetic autoimmune condition that causes red, scaly patches on the skin that itch, crack and bleed.1

Q: Who is living with psoriasis?
A: Over 7 million Americans (equally men and women), and global estimates say 2-3% of the world’s population – as many as 125 million people – has the condition.

Dispelling the myths 

Q: Can I catch it from someone else?
A: It’s NOT contagious! Psoriasis is triggered by a combination of genes inherited from parents and exposure to outside factors such as stress, smoking or infections.2

Q: Is there a cure?
A: There is currently no cure, but individualized treatment options are available that reduce inflammation and skin damage.2

Q: Is all psoriasis the same?
A: Nope, there are many different forms of psoriasis, which you can learn about by visiting the NPF’s description page.

But these questions just start the conversation about psoriasis, and getting involved is a great way to educate others. Unsure where to begin? The NPF has some great activities, including national Walks to Cure Psoriasis and “More Than Skin Deep” informational events. And if you have psoriasis, you can apply for the NPF’s One-on-One program, where people living with the condition mentor those who’ve been newly diagnosed.

Don’t forget to visit the psoriasis community at PatientsLikeMe, too. You’ll see how other members treat their psoriasis, and you’ll be connecting and learning from the people who know what’s its like.

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1 http://www.biotech-now.org/health/2012/08/august-is-psoriasis-awareness-month-psoriasis-isnt-contagious-but-awareness-is

2 http://www.niams.nih.gov/Health_Info/Psoriasis/psoriasis_ff.asp