Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Posted April 18th, 2014 by

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.


Food for thought: April edition

Posted April 15th, 2014 by

Everyone’s got a favorite dish (pizza is one of ours), and many PatientsLikeMe members share a bunch of their recipe ideas and foods in the forum. So, we’re going to start highlighting some of the hottest – or maybe the coolest, if you like gazpacho – conversations on the blog as part of a new “Food for thought” series. We’ll be featuring what people are saying in different condition communities.

So, what are people talking about this month?

Fibromyalgia forum thread: What did you make for dinner tonight?

“Leftover sage and rosemary soup, added mushrooms and scrambled egg batter. Stirred until cooked, added sea salt and pepper. Yummy!”

“Crock pot lamb shanks and salad.”

“A protein bar and yogurt – not hungry.”

Type 2 diabetes forum thread: High early morning blood glucose readings

Try having a low carb high protein snack at bedtime. This usually helps me have a lower reading in the morning. I have a really grainy piece of toast with peanut butter or cheese and it works wonders.”

“I eat my dinner at 4:30 or 5 p.m.  I also watch my carbs.  That helps me get the sugar down in the morning.

“At night for a snack and hour or so before bed I might have a piece of celery with peanut butter.

Multiple sclerosis forum thread: Different diets and reactions

“I have to say, the flavor of grass-fed beef is far superior to that of the ‘conventionally raised’ beef.”

“I have gone with the Mediterranean diet and it seems to have helped me physically. Not so much neurologically, though

Does any of that sound familiar? If you are living with fibromyalgia, diabetes type 2 or multiple sclerosis, join PatientsLikeMe and jump into a conversation in the forum, or start a new thread of your own. Sharing experiences has never tasted so good!


“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Posted April 14th, 2014 by

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’

Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like?

My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair.

After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my neurologist eliminated many possibilities, with testing for lyme disease and lupus being repeated. The only confirmed diagnoses to be made were narcolepsy without cataplexy, a condition my history showed I’d had since childhood, but  escalated with menopause and restless leg syndrome (RLS).

Three years later, after aggressive treatment to control the narcolepsy and RLS, the unexplained issues continued to worsen. The increasing difficulties were with balance, loss of dexterity, freezing at step-ups, dystonia, shuffling gait, physical restlessness, exertion tremors with pronounced shortness of breath, full body muscle pain and stiffness, arms clinging to the body, and index or middle finger fidgeting the thumb, most presenting intermittently with no definitive pattern. I was referred to an MDS in May of 2009 who reviewed the battery of tests, labs, and imagery from the previous 5 years, conducted a clinical examination, waited 4 months and repeated the examination to conclude “an undefined movement disorder, prominent on the left, not rapidly progressing (therefore not of immediate concern) but probably early Parkinson’s Disease”. I was put back under the care of my primary neurologist with additional dosages of Mirapex, already being taken for RLS, and life continued on.

Within the year occasional episodes of Choreoathetosis greatly disturbed co-workers and friends, and as my lack of alertness became alarmingly severe despite an increase in Provigil, the Mirapex was reduced back to bedtime only. It was clear that treating my Parkinson’s symptoms was not going to be easy with narcolepsy. Under a new supervisor, my job duties were reviewed and adjustments made, but it was still a position that required a great deal of personal interaction, and eventually it was determined that I could no longer meet expectations. I was losing the ability to comprehend, think, and speak “in real time.” I moved back “home” and began the task of making a new and very different life.

My current PCP, who cautiously agrees it’s Parkinson’s, is very supportive and wants very much to improve my quality of life. I have been referred to two neurologists within the last 5 months, neither an MDS, but both, within the first 5 minutes of a single office visit and without my medical records, have dismissed the 2009 diagnosis with no further investigation planned, or even offered. One, who felt cog-wheel rigidity in my left wrist, said “it’s complicated,” but why no genetic testing, no PET or SPECT, and why wasn’t a trial of Sinemet given? The other said I don’t have resting tremor, he found no cog-wheel rigidity, and I show facial expression, so it can’t be Parkinson’s, so there’s no reason to try Sinemet.

It takes approximately 18 hours of continuous observation in a simulated home environment using standardized methodology to gather the data necessary to diagnose narcolepsy, so how can movement disorders, with such a wide array of possibilities and variations, be properly diagnosed in randomly performed clinical examinations generally lasting less than 45 minutes in total?

Your oldest son is now your caretaker, and you mentioned the difficulty of the role reversal, can you tell us about that?

It’s become more of a shared role between both my sons, although the youngest doesn’t live nearby.

It has taken time for all of us to adjust to the changes, and although it will be a continuing adjustment, what I thought I had lost as a mother is not lost after all. I came to realize that I still needed to hold on to being Momma. I had to see that I still have the opportunity to teach my children by example. And they had to realize they still needed me to lean on from time to time and to offer thoughts for their consideration when making decisions. Sure, some things have changed a little, but then the small stuff has always been a moving target.

Twenty-five years ago I’d stay in the car while my oldest went into the neighborhood store alone to make a purchase. Now I sit in the car while he goes into a store to make a purchase for me. So I sit in the car . . . nothing new, just different reasons. Fifteen years ago I’d tell my youngest it was a FYOS night because I had too much work to finish. Now I may tell him to help himself with whatever he can find, but I’m not feeling up to eating anything for a while. So he fixes his own supper . . . nothing new, just different reasons.

What I had to realize is that we are still what we’ve always been. We are family, co-caretakers of each other. We are learning to work together again, just as we did when they were still living at home. Only the reasons have changed.

You’re super active when it comes to filling out your health profile on PatientsLikeMe — how do the tools help you track your health, and what have you learned?

One thing that I have definitely learned is that once a symptom becomes a daily standard, I don’t necessarily notice or remember it unless it was severe or continuous that day. I may have a single incidence of freezing early in the day and if I don’t fall from it, or have a great deal of difficulty breaking loose from it, I completely forget about it by the time I do my symptom update.

I’m certainly learning there’s no predictability! I keep thinking that I’ll see some kind of pattern, but nothing has appeared as yet. I can have symptoms causing me great difficulty for weeks at a time and suddenly disappear for months before being noticed in the slightest again. And others are always with me, but other than the obvious, such as loss of coordination and falls, and stress effects, there’s no pattern or connection, even in the level of severity.

You’ve recently been diagnosed with type 2 diabetes. How has another diagnosis impacted your Parkinson’s and day-to-day life? 

So far it’s been a blessing. I put on a great deal of weight since I began this journey, and with little pleasures left to be enjoyed and apathy holding my focus to the simple pleasure of food, I needed a wake-up call! If I’m ever prescribed Sinemet or any Levodopa, I know I’ll have to reevaluate my eating plan to compensate for the protein conflict, but for now I’m trying to stay focused on controlling my diabetes and losing as much weight as I safely can.

It’s probably a first, but I was disappointed that I did not experience the most common side effect of my diabetic medication, Metformin. Both the doctor and the pharmacist gave stern warning that it causes severe diarrhea in the first few weeks. With the constant battle of constipation PWP endure, I was looking forward to it, but it never happened! No change in that situation at all.

Finally, April is Parkinson’s Awareness Month. You mentioned fitting into a world that ‘doesn’t know’ what it’s like. What would you like to teach people about Parkinson’s?

The most important thing from my perspective would be that Parkinson’s is not fully visible! Besides the mental and emotional changes caused by the altered state of brain neurotransmitters, there are other non-motor symptoms caused by Parkinson’s. Even tremors are not always “visible.”

One of my earliest and continuing issues is Akathisia, better known as internal tremor and restlessness. There are times that if what I feel could be seen, it would look as if I was holding a live electrical wire. I’ve day-dreamed of a torture rack and how wonderful it would feel to be stretched until it stopped. Thankfully, this level of severity is rare for me. It’s more subtle most of the time. It’s a feeling that doesn’t allow me to sit or stand still. Regardless of the fatigue and pain that builds, sitting to rest is worse. The only thing that brings any relief is to keep moving. If I stop in one place I rock. If I must sit I fidget until I can’t take it anymore and I get up and start pacing, stretching, moving! If it’s confined to just the arms, wrapping in a massaging chair pad can ease it in time, but usually it’s full body and the only solution is to keep moving until it settles, often taking hours!

Akathisia is a little-studied, sporadic symptom in about 26% of PWP, and is only one symptom of Parkinson’s that is visible, although it leads to very visible attempts to get relief. Some of the other non-motor function symptoms PWP often face are constipation, bladder incontinence, difficulty swallowing, gum and dental deterioration, excessive sweating, intolerance to heat and cold, daytime sleepiness, pain, vision issues, loss of taste and smell, memory loss, difficulty with word recall, and apathy. Parkinson’s Disease does not stop with making slow, stooped, stiff, shaky people…it’s so much more!

Betty Bland

a.k.a. “dropsies”


A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

Posted April 11th, 2014 by

Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and President Ben Heywood talks more about the work ahead.

So, why Genentech? What do you hope to achieve through this partnership?

Genentech is a leading biotech company and an acknowledged leader in oncology (which is where our initial focus will be).

We spoke with their teams for quite some time before embarking on this collaboration and I have to say that we just really like their approach. We’re very much aligned in our goals of defining a more patient-centric approach to research, development, and care delivery.

Their goal in working with us is to explore the use of our PatientsLikeMe network to develop innovative ways of researching peoples’ real-world experience with disease and treatment. I think we also hope and expect this collaboration will encourage broader engagement of others involved in the delivery of healthcare to support a stronger voice for patients like you.

How does this differ from your other collaborations?

What’s different with Genentech is that we’ll be exploring on a broader scale how the use of our patient network might develop new ways to research the patient experience. The broader access should allow for more agile, real-time use of the data and help align the strengths of the platform with Genentech’s priorities. This collaboration also helps PatientsLikeMe expand our cancer community, and we’re excited to be partnering with such a leader in oncology research and development on that.

How does this move “put patients first?”

Genentech is a forward-thinking company that is continuously working to patients at the center of their decision-making. By providing Genentech access to the health data shared by the members of our network, it will help them learn more from patients like you and better integrate your insights into their decision-making as they develop new medicines.

Is the focus on cancer new for PatientsLikeMe?

We have a community of people with cancer that have been using the site since we opened it up to people with any condition in 2011; many right now list cancer as a secondary condition, although some list it as their primary. Part of this collaboration is about using resources to enhance the tools within our network to help make the site even more useful for cancer patients. Of course what we build for one community will benefit all, much like we’ve done all along. The end result is a website that better serves people’s needs.


Promoting better digestive health in April

Posted April 10th, 2014 by

The digestive system contains a bunch of organs (8 to be exact), everything from your stomach to your gallbladder. It’s important to be aware of what can affect all these parts, and this is why back in 1997, the International Foundation for Functional Gastrointestinal Disorders (IFFGD) designated April as Irritable Bowel Syndrome (IBS) Awareness Month.

IBS affects the entire digestive system, and there is currently no known cause for the condition. What’s more, many people have experienced IBS, but they dismiss symptoms as routine. Common signs include chronic abdominal pain, constipation and bloating, and sometimes these will be relieved by bowel movements.

IBS is more common than you might think – different estimates report that between 10 and 15 percent of the entire global population is affected with some form of IBS1 2 – so if you’re living with IBS, you’re definitely not alone.

There are plenty of ways to raise awareness for IBS during April, and here are just a few ideas to get started:

If you’ve been diagnosed, visit the IBS community at PatientsLikeMe, where over 3,600 members are sharing their experiences in the digestive and intestinal forum.  See how your day-to-day life with IBS compares to others, ask questions and get answers from people who know what you’re going through.


1 Grundmann O, Yoon SL. Irritable bowel syndrome: epidemiology, diagnosis, and treatment: an update for health-care practitioners. Journal of Gastroenterology and Hepatology. 2010;25:691–699.

2 Understanding irritable bowel syndrome. American College of Gastroenterology website. www.patients.gi.org/gi-health-and-disease/understanding-irritable-bowel-syndrome . Accessed August 15, 2013.


PatientsLikeMeInMotion 2014: Celebrating 6 years of PatientsLikeMe members giving back to their communities and raising awareness

Posted April 8th, 2014 by

It seems like it was just yesterday when PatientsLikeMeInMotion was launched, but it’s been going strong for more than 5 years now – wow, how time flies!

We’re celebrating the 6th year of PatientsLikeMeInMotion with a recap of 2013, the biggest year so far! We had the honor of supporting 1,611 members across 27 states who participated in everything from a JingleBell race and the MS Muckfest to a golf tournament and a motorcycle ride. These people raised money for their favorite nonprofits and rallied everyone to promote awareness for their health conditions.

If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what a few members had to say:

I feel so fortunate every time my family and I can contribute, with [PatientsLikeMe's] help, to the financing of research for the cure.

We love participating in the PatientsLikeMeInMotion program. It’s a wonderful opportunity for our cause to not only earn money, but we love having our volunteers sport the blue PatientsLikeMe shirts at our events! It’s a win-win for us!

 

Quick facts:

More than 1,600 members from 83 different teams raised close to $18,000 through the PatientsLikeMeInMotion program in 2013.

Events took place in 27 states.

Patients represented 16 disease communities.

Thanks to everyone who participated in 2013! If you’d like to join the program in 2014, here’s all you need to do:

    1. Join PatientsLikeMe (it’s free!)
    2. Get 3 stars (your profile is up-to-date)
    3. Submit your team details (within 3-4 weeks notice of the event, please!)

But wait, there’s more! We’re following up with multiple sclerosis (MS) community member “2006,” who put together a huge team to raise awareness for MS. She’ll be sharing her experiences in an upcoming interview, so keep an eye on the blog in the next few weeks.


Genentech and PatientsLikeMe enter patient-centric research collaboration

Posted April 7th, 2014 by

Companies Sign Multi-Year Services and Data Subscription Agreement
With Initial Focus on Oncology

CAMBRIDGE, Mass. — April 7, 2014 — PatientsLikeMe announced today a five-year agreement with Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), to explore use of PatientsLikeMe’s global online patient network to develop innovative ways of researching patients’ real-world experience with disease and treatment. The agreement is the first broad research collaboration between PatientsLikeMe and a pharmaceutical company and provides PatientsLikeMe the opportunity to expand its patient network in oncology.

“We envision a world where patient experience drives the way diseases are measured and medical advances are made. Genentech’s leadership and commitment to this mission brings us closer to having patients at the true center of healthcare,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “With Genentech we can now embark on a journey to bring together many stakeholders across healthcare and collaborate with patients in a new way.”

“At Genentech, we come to work every day with the goal of transforming patients’ lives. The collaboration with PatientsLikeMe will allow us to learn more from patients with serious diseases, and better integrate their insights into our decision-making,” said Bruce Cooper, M.D. senior vice president, Medical Affairs, Genentech. “We hope our participation will encourage broader engagement of others involved in the delivery of healthcare and support a stronger voice for patients.”

The five-year agreement provides Genentech the opportunity to utilize PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools. The service includes:

  • Access to PatientsLikeMe’s network to enable cross-sectional research and broader discovery of patient insights.
  • Enhanced customized research services and capabilities.
  • Focused research projects to evaluate and develop new medical evidence, measures and standards of health.
  • Access to PatientsLikeMe’s clinical trial awareness tool, which allows patients to learn about clinical trials.

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 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Genentech
Founded more than 35 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious or life-threatening medical conditions. The company, a member of the Roche Group, has headquarters in South San Francisco, California. For additional information about the company, please visit http://www.gene.com.


Patients as Partners: The WHYSTOP Scale questionnaire results

Posted April 4th, 2014 by

We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

So to kick the series off, we have results from the WHYSTOP Scale, which measures how diabetes can impact appetite and how people decide when they’re done with a meal. Back in September, we launched this as one of the first-ever questionnaires on ORE with our research partner William Polonsky, Ph.D., CDE, from the Behavioral Diabetes Institute and University of California, San Diego. More than 700 type 2 diabetes community members added their voices, and all of the answers and feedback shaped and influenced the health measure to make it the best possible. (Shout out and thank you to all those that participated!) Check out the WHYSTOP survey results and keep an eye out for more ORE questionnaire results coming up as we continue our Patients as Partners series.

 

 

 


Making a difference for Parkinson’s disease in April

Posted April 2nd, 2014 by

 

After getting diagnosed with Parkinson’s disease (PD), PatientsLikeMe member Ed recalled “I needed to talk to people who had the disease, because only they knew what it was like…and could help me get through that initial shock… we can do much better fighting the disease as a group than we can as individuals.” And that’s why all throughout April, everyone impacted by PD is coming together to get the word out for Parkinson’s Awareness Month.

PD is a chronic and progressive movement disorder that affects around 1 million people in the United States, and symptoms of the condition include tremors, stiffness and impaired balance. There is no known cure for PD, but medication and surgical options can sometimes relieve a few symptoms.1

To get PD Awareness Month started, check out one of the many events being organized in April by the Parkinson’s Disease Foundation (PDF) and the National Parkinson Foundation (NPF). You can join the NPF’s Team Hope, get involved in the PDF’s Parkinson’s Advocates in Research (PAIR) program and find local Parkinson’s resources and organizations.

If you or someone you know has been recently diagnosed with PD, head over to the PD community at PatientsLikeMe, where over 8,000 members are tracking their symptoms and sharing their experiences.

Spoiler alert! That isn’t all Ed had to say about his own experiences and what sharing on PatientsLikeMe means to him. Keep an eye on the blog later this month; we’ll be posting his recent video interview.


1 http://www.pdf.org/en/about_pd


PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Posted March 29th, 2014 by

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes

CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome measurements using the company’s Open Research Exchange™ (ORE) platform. This call for participation is a way for people living with disease to become the researcher, and to use their own and others’ experiences to create new health measures that are more meaningful, helpful, and relevant.

ORE was launched in 2013 as an online hub for the development of patient-reported outcomes (PROs)—measures used by clinicians to gauge health, disease severity, and quality of life. Since then, thousands of PatientsLikeMe members have given researchers feedback on measures relating to hypertension, treatment burden, diabetes and appetite, and primary palliative care. There were six pilot studies fielded on ORE last year and, while response goals varied from study to study, on average researchers using ORE collected 100 percent of their required responses in less than a week’s time. PatientsLikeMe’s Vice President of Innovation Paul Wicks said that’s far faster than the average 6-12 months it can take to gather similar data via in-person meetings or telephone and web-based questionnaires.

“We’re only beginning to see how ORE can simplify and speed up the research process, and how our members’ experience with more than 2,000 conditions can help researchers more clearly hear the patient voice,” Wicks said. “Now, we’ll be able to work alongside patients as they shape the next generation of research tools and lead future advancements in the research process.”

The Robert Wood Johnson Foundation (RWJF), whose 2013 grant of $1.9 million funded the platform’s start, will accelerate ORE’s innovative approach to developing measures with an additional $2.4 million grant.

“We are eager to invest in innovation that explores how to put patients more firmly in the driver’s seat of their care and of discovery in medicine,” said RWJF Senior Program Officer Paul Tarini. “We’re excited to see the potential impact that patients can have in clinical care and research with ORE’s new phase.”

Patients who want to ensure research goes in a direction that addresses their needs and concerns and who have an idea for a new measure are invited to apply at https://www.openresearchexchange.com/patients.

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 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook. 

About the Robert Wood Johnson Foundation

For more than 40 years the Robert Wood Johnson Foundation has worked to improve the health and health care of all Americans. We are striving to build a national culture of health that will enable all Americans to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.


“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Posted March 27th, 2014 by

 

This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made the transplant list and is playing what she calls ‘the waiting waltz.’ Check out the entire interview below where she talks about ‘life on the list’ and what inspires her to donate her health data. And don’t forget to check out Lori’s own blog called Reality Gasps. Thank you Lori for continuing to share and inspire!

If you missed one of her previous interviews you can find those here.

 

 

You share a lot about reaching your weight loss goal (70 lbs! That’s awesome!). Can you describe what exercise means to someone living with IPF? And some of the other ways you achieved your goal?

For someone living with IPF, exercise isn’t about pushing yourself to go farther, faster or harder — it’s about endurance. Pulmonary Rehab is always focused on doing whatever you’re doing for as long as you can. That’s because endurance equals muscle efficiency. The more efficiently the body can use oxygen, the easier it is to breathe. Right now, I can do 30-35 minutes on the treadmill at 1 mph. I’m not setting any records, but I am moving, and that’s really the key to all. Activity is difficult for anyone with PF because oxygen sats plummet so quickly. So all you can really do is move as often as you can for as long as you can. I marked a 600-ft circuit (4 laps) in the house and practice my 6-minute walk several times a day (600 feet in 6 minutes is a baseline standard). I go to Rehab every week, and I have a pedal exerciser that I use while I watch TV. It sits on the floor for use with the feet, or I can put it on a table for use with my hands. Every little bit helps!

Plus, I have discovered a calorie-burning secret weapon available specifically for PF patients — breathing. My pulmonologist told me that the average healthy person expends about 2% of total daily energy on breathing. People with PF expend 20% on breathing, and someone who is end-stage like me probably uses more than that. Dragging air into these stiff old lungs is hard work! My transplant coordinator agrees, and warns her patients that post-tx, we really need to watch what we eat because we aren’t spending nearly the energy we did before on breathing or anything else.

Can you tell us a little about how you get your Lung Allocation Score and what that means for placing you on ‘The List’?

Everyone who is approved for the lung transplant waiting list receives a Lung Allocation Score (LAS), ranging from 0 to 100. The LAS is used to determine your location on a Transplant Center’s waiting list, and is based on medical urgency and the potential for survival post transplant. When I was listed in February, my LAS was 62, and four weeks later it was increased to 71. The average LAS at Barnes is in the 40s. I am neck and neck with another candidate for the #1 spot — luckily we have different tissue types, so we are looking for different donors.

Since my score is so high, I am re-evaluated every two weeks. Anyone with a LAS below 50 is re-evaluated every four weeks. The bi-weekly eval includes a PFT (FEV1), 6-minute walk, chest x-ray, blood tests and meeting with a pulmonologist.

It’s important to understand that being #1 on the list doesn’t mean that I will get the next lungs that become available. They still have to match size, blood and tissue type . But, because of my high placement on the list, I will be considered first for every donor lung.

And did you have a ‘fake’ heart attack?!

This was one of those “blessings in disguise.” At Barnes, the evaluation for transplant list is a 4-day process. My husband and I were there for Day 1, Test 1 — blood work and an EKG. Pretty routine stuff that I never have an issue with, except this time. When I shuffled from the chair where they drew blood, to the table where they hooked me up to the EKG, my sats dropped (normal) and my heart started to pound (also normal). The tech gave me a few minutes to recover and then ran a strip. She got quiet and left the room, then came back and ran another strip. She left the room again, came back and ran a third strip. I was wondering what was going on because no one ever runs three strips and she kept asking me if I felt okay (I felt fine). Then suddenly, the room was full of people (the acute response team). Among them was a resident who informed me I was having a heart attack. I assured him I wasn’t. He said something about inverted waves and the EKG looking like I was having a coronary. The only problem was, I felt fine… not just fine, completely normal! They sent me to the ER anyway, where multiple EKGs and blood work showed no signs of heart attack. But, a comparison with an EKG I’d had 6 months earlier showed a slight change, so they admitted me.

I ended up having a heart catheterization, which I was scheduled for later in the week anyway. The cath was clear, beautiful in fact. And, they decided to complete all of the tests I’d had scheduled that week as an inpatient instead of an outpatient. In exchange for three days of lousy food, I was able to complete the eval without the stress of driving to and from Barnes everyday in sub-freezing temperatures. My husband got a nice reprieve, too!

You talked a little on your own blog about ‘Life on the List.’ Can you share with the community what that means for you day-to-day?

Getting on the list was a goal I’d had for more than two years. In that time, it had almost become a destination in itself — everything was focused on losing weight and getting on the list. Once I was on the list, everything would be fine. But getting listed is just the beginning of a whole new journey where I have a lot less control over what’s happening. It would be easy to become overwhelmed with frustration or fear or panic — I’ve felt all of those at one point or another. Instead of giving in to these emotions, however, I’m trying very hard just to let go and focus on the things that I can have an impact on. I can’t change when my donor match will be found, but I can keep myself as active as possible so I am ready when the call comes. I can’t predict what my recovery will be like or how long I will survive afterwards, but I can be present and involved right now in the lives of my family and friends. So for me, Life on the List is pretty much a one day at a time kind of thing. I hope, I pray, I plod, and I wait.

I noticed on your PatientsLikeMe profile that you’ve been consistently using your PF Severity Score and symptom report. What do you find helpful about these tools and what inspires you to donate so much data? 

I did it for the t-shirt. Kidding! I really love having one place where I can get a complete picture of what’s going on — not just test scores or symptoms, but also how I’m feeling in relation to everything. The various questions help me tune into my mental, emotional and physical states. And the more I understand about what’s happening with me, the better informed I can keep my doctors, and that helps everything.

As for donating data, I am happy to do it. The treatments and techniques that I am benefiting from today were developed with information from patients who came before. Sharing my info is the best way I can think of to pay it forward.


Are you at risk? American Diabetes Association Alert Day

Posted March 25th, 2014 by

 

According to the American Diabetes Association (ADA), over 25 million people are living with type 2 diabetes in the United States, and 7 million aren’t even aware they have the condition. What’s more, 79 million people have prediabetes, a condition that can include several symptoms of diabetes.1

Do you know if you’re at risk for type 2 diabetes? Today is American Diabetes Association Alert Day, and it’s all about learning and recognizing risk factors. Take the ADA’s online diabetes risk test to learn if you’re at high risk – it’s fast, free and easy. The ADA’s official fact sheet is also full of useful information about diabetes and today’s activities, including Step Out walks and Alert Day Center education events. Visit the ADA’s website to find an event in your area.

Living with type 2 diabetes can involve many lifestyle changes, so if you’ve been diagnosed, are living with prediabetes or are at high risk, visit the PatientsLikeMe type 2 diabetes community to check in with your fellow patients and learn how they manage their condition. You can post questions in the forum and get answers from others living with diabetes, check treatment reports to see what people are taking to manage it, and track your own symptoms to get a better understanding of your own health.


1http://main.diabetes.org/dorg/alert-day/alert-day-2014-fact-sheet.pdf

 


What do you know about brain injuries?

Posted March 23rd, 2014 by

The Brain Injury Association of America (BIAA) explains it simply – a brain injury can happen anytime, anywhere, to anyone. That’s why March is Brain Injury Awareness Month. It’s time to learn more about traumatic injuries that can affect the brain and nervous system and share our experiences to increase awareness about everything from concussions to long-term disabilities.

If the skull gets hit hard enough, the brain can experience concussions, contusions and other types of traumatic conditions. It’s a little different for anoxic or hypoxic brain injuries – these happen when the brain receives too little oxygen, or none at all.

This month, there are plenty of ways to raise awareness about all types of brain injuries.  Reach out to your state’s BIAA affiliate to see if there are any local activities to participate in. The BIAA also has a great Brain Injury Awareness Month logo. Share it on Twitter and Facebook to spread the word on social.

If you’ve been recently diagnosed with a brain injury, you can visit the TBI community on PatientsLikeMe and share your experiences in the injuries and traumas forums. Over 900 TBI members are tracking their symptoms and sharing information about their treatments –join in today.


“Post-MS, I’m one of the strongest people I know” – PatientsLikeMe MS member Jazz1982 opens up about her experiences with MS

Posted March 20th, 2014 by

PatientsLikeMe members are located all over the world, and this month, Swedish MS advocate Jazz1982 shared about what life is like on the other side of the Atlantic. She spoke in detail about the stigma surrounding MS, her exceptionally strong mindset and her experiences with Betaseron, Tysabri, Mabthera (Rituximab) and a few other pharmacological treatments.

 

You mentioned you hail from Sweden – a lot of the MS community has been talking about the new drug Lemtrada that was recently approved over in the E.U. What have you heard about it?

Well, I’ve been living in Sweden for the past 4 years, and I’ve only heard about Lemtrada through my neurologist when he mentioned the list of viable medications I could switch to, and he did not recommend it for my case. It was shown to cause an increased amount of infections due to a compromised immune system, and I already had an almost chronic UTI while on Tysabri, so we voted it out.

MS awareness is a big part of your life – have you connected with any fellow MS advocates in Sweden or the greater E.U. through PatientsLikeMe?

MS awareness is a very big part of my life, but also as a side note, I have to say that I learnt not to say I have MS. 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, when in reality I was very fragile and easy to break before the MS. Post-MS, I’m one of the strongest people I know, and I take things very differently from how I was before. Priorities change, your body changes, you change and become flexible; this is to deal with everything MS might throw at you because it spills into your everyday life, and being flexible just becomes second nature to you. Things become far simpler than they were before because you have bigger problems than your annoying boss, your untamed hair or not having a boy/girlfriend. When you have MS or any other chronic disease, your national anthem bellows the sound of constant loss, and it hurts to hear your name in the song. You have a choice to let the so-called bull grind you to a pulp or see what you have and use it to make the best out of the situation. I always get the ohhhh you poor thing look once anyone finds out that I have MS, and quite frankly, I’m not interested in their pity. What I am interested in is leaving the world a better place than when I came in, and either you support me or work with me, otherwise, I don’t have the patience to deal with pre-conceived negative notions that people have around any sort of illness.

On the more positive note, I love it when people ask questions about being sick. The other day I had a family member ask “how is it that someone who can only walk with a walker be happy?” When you have lost everything (your marriage, your career, your friends, the life you once knew) and you learn how to walk again, it’s the most ecstatic feeling in the world to be able to take a step, completely unaided by another person. Everyone wants to be independent, and when it comes back, no matter what shape or form the package comes in, you love it and you love it intensely. Questions are more than welcome, and it makes me feel good to be able to shed some light on the situation.

It’s a personal choice, and I tried to share it but found it to be an overall negative experience where no one was learning from it, so I chose to mostly keep it to myself.

So, yes I have spoken to others that have MS, Parkinson’s, stroke, etc, in Sweden, though PLM is not as popular here than in the US.

Many members have shared that they had trouble finding a diagnosis. Was that your experience, too?

I have exhibited symptoms since I was 8 years old, which is highly unusual, but my MS went into full swing in my 20′s and I wasn’t diagnosed for 2 years while my condition rapidly deteriorated. A diagnosis was both a relief and a shock to my system. Everything comes in a 50-50 coin flip, one way it’s a disaster and another it’s a burden off your shoulders. It’s not something you could have evaded if you just ate and exercised right, you get to hold up the MS card and say “see, I knew I wasn’t insane! I knew I wasn’t imagining it, it actually has a name.” The human brain is the ultimate categorizing machine, you need to categorize it for yourself and so others know how to deal with you. Once the category has been chosen, then the mission begins of going through the stages of mourning the loss of the old you and embracing the new you. I found that to be the easiest part, the hardest is seeing who gets on board with you and who doesn’t. It’s kind of like fast forwarding through a tape of your life while everyone else is still in “normal” mode, it’s painful but you learn a lot. It’s an experience that no one welcomes at first, but you learn to see it as a long-term benefit! Similar to the saying the truth shall set you free, but it will piss you off first.

Can you share a little about your treatment experiences with MS? Have you ever changed treatments? And if so, why did you decide to?

I first started out with Betaferon (Betaseron to US readers), which was a painful 3 years, but I didn’t have much choice when it came to medication back then. As it turns out, I was allergic to interferons, and as you may know, medications are determined by a trial and error method, which can be catastrophic. My slow decline into what I see as losing my humanity began and didn’t stop until I met my current neurologist (whom I love to pieces), when he immediately took me off the Betaferon and switched me onto Tysabri. I was one of the lucky ones, it was nothing short of a miracle. I suddenly went from not being able to see, feel or think to leaps and bounds better (along with rehabilitation) when I earned my Master’s degree, and I was able to walk again and simply gained control of my body and my life in the process. It was tough, but to see your brain functions come online one by one is an honor in itself really, and well worth it. After 2 years on Tysabri, we did a blood test, and my JCV antibodies were too high for comfort, so I had to switch.

My neurologist follows protocol but he also listens to my reasoning, and we had a long discussion about my treatment choices. Protocol states that I try Gilenya after Tysabri, but after doing some research I found Mabthera or Rituximab. Now, Mabthera is also a chimeric monoclonal antibody that depletes B cells, while Tysabri depletes T cells and a significant link was found between the depletion of B cells in regard to T cells. In other words, you deplete B cells then you deplete T cells in the process while not compromising your immune system. Now Mabthera is used in Rheumatoid Arthitis and Non-Hodgkins Lymphoma, but it’s off label use was for MS. Gilenya uses a different method all together and to my mind, why try something when you don’t know its efficacy on your body, while you already know what Tysabri has done. So, after a long talk and seeing the numbers for all the medicines’ efficacy, we chose Mabthera. My neurologist was supportive of the decision, made and prescribed the treatment and explained it fully. He even gave me a hug at the end of it. :)

I can definitely say Mabthera was even better to me than the Tysabri ever was. I am currently on Mabthera and it may sound scary (most of the MSer reports I read were that of impending doom) but I asked my nurse and neurologist about it and they said that MSers barely noticed anything at all. I am currently on Mabthera  (just started it 3 months ago) and would say if Tysabri worked well for you, I highly recommend it if your doctor gives you the green light. It may sound daunting to try an off label drug but I didn’t have a single symptom on it.

As I’m sure you all know, switching medications was not easy and I had prepared for the worst but went in hoping for the best. Usually, if anything is to go wrong, it will during the first hour of the infusion. I went in prepared with my anti-histamine (some people experienced allergic reactions) and my Tylenol but the hospital staff gave me that plus a small dosage of cortisone (5mg) but never did I even dream that I wouldn’t experience even 1 symptom. I get an infusion every 6 months, and during the infusion the nurse checks your blood pressure every 30 minutes and increases the drop rate. The infusion lasts 5-6 hours (I am sometimes longer since my veins see a needle and hide like they saw the abominable snowman, and it takes an average of 3 times to get a vein, my record is currently at 6). Clinical trials and previous MSers have used it safely for up to 8 years, which to me is pretty impressive.

You share a lot about MS research in the PatientsLikeMe forum – how do you see sharing info like this, and your own health experiences, helping others like you?

Numbers are the sexiest thing. I know, people don’t associate numbers and sexy but hear me out. They help me determine which direction to shift to, help others, and they’re the universal bind that holds us all together. I get to make an important choice without the influence of others, unreasonable emotions or illogical judgments. Numbers don’t lie; knowledge is king and with this evidence I can increase my quality of life and succeed at being me, which in the end, is all that matters. If that isn’t sexy then I don’t know what is.