13 posts from April, 2012

The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

Posted April 27th, 2012 by

Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score.   Now, we’d like to share our interview with lead study author Dr. Thomas Meyer, a neurologist at Charité University Hospital in Berlin, Germany.  What role did PatientsLikeMe play in this research?  And what are the study’s implications for the future of clinical trials?  Find out that and more in our interview with Dr. Meyer below.

Dr. Thomas Meyer, Neurologist at Charite University Hospital in Berlin

1.  When did you become interested in patient-reported outcomes?

In 2005, we first used tablet PCs in our outpatient department to capture patient-reported outcomes (PROs). To us neurologists, PROs play a crucial role. Many neurological conditions can be captured by means of PROs only – I am thinking of pain in neuropathies, spasticity in multiple sclerosis (MS), the subjective perception of movement ability in Parkinson’s syndrome and dyspnoea (breathing difficulty) in neuromuscular conditions, including ALS. Given this fact, we neurologists have always listened to our patients a little more carefully so that we can do a good job. Therefore, the systematic capturing of PROs is a natural process to us, and we are most happy to be able to support any advancement and positive development thereof.

2.  Your study showed remarkable agreement between the two ALSFRS-R reporting methods.  Were you surprised that they were so similar?

You are absolutely correct. Correlation here looks like a textbook example of medical statistics. We were indeed very surprised to find that the data were so unequivocal.  Notwithstanding, our previous experience with the offline electronic capturing of ALSFRS-R had taught us that the data captured in a personal interview are very close to those captured in computer-based self-assessments.

A Chart Showing the Striking Similarity Between ALSFRS-R Scores as Reported by ALS Patients (Bottom Axis) and Their Clinicians (Left Axis)

Then we took the next step and progressed from offline to online assessment. Other work groups had already shown good correlation between the face-to-face capturing of the score on the one hand, and data capturing over the phone on the other. That was very useful upfront information for us. Insofar, the success of our study didn’t come as a complete surprise to us.

3.  How did Dr. Paul Wicks, PatientsLikeMe’s Director of Research & Development, contribute to this research project?

Our great interest in the issue of PROs in ALS goes back a long time. Nevertheless, we were very much aware of the fact that PatientsLikeMe is by far the most experienced organization with regard to PROs worldwide and also the one that identifies with this topic most. So, a small group of four of us flew from Berlin to Boston to introduce our clinical trial to PatientsLikeMe and to learn from their experience. Once we had concluded the study, we flew to Boston once again to see Paul and to prepare the paper. We profited immensely from Paul’s input, and he gave the manuscript a superordinate perspective.

PatientsLikeMe Research & Development Director Paul Wicks, PhD

So it is for a good reason that he is listed as co-author of this publication. Overall, this scientific research project was a collaboration between the Charité University Hospital and PatientsLikeMe. I believe it is also an important, gratifying and affirming experience for PatientsLikeMe to see that in terms of methodology the online capturing of PROs is at least equal to an interview conducted face-to-face. I can even imagine situations where the online mode of capturing PROs is actually better than a personal interview, especially where rather complicated and very private issues are addressed. This is just one of the many points we discussed vividly with Paul.

4.  Do you believe online patient reporting will become an acceptable practice for clinical trials?  What are the ramifications if it does?

I can very well imagine that the online capturing of PROs will one day become an integral part of clinical trials. It is quite an obvious thing; however, owing to regulatory requirements, it will be quite some time before it will actually be possible to implement this. The bottom line is that clinical trials will have to be conducted for each score demonstrating equivalence between paper-based and web-based capturing. Not all of the scores have actually been evaluated for online capturing. Another critical point surely is Internet access.

Having said that, it certainly also depends on the patient group and the actual medical condition under examination. I suppose that from a medical-ethical point of view it is problematic to exclude patients from a trial simply because they are unable to realize an online completion of the score. In this regard, I believe the first step to be taken must be to demonstrate equivalence between online and offline capturing of the score. Then one could give patients the option of using online assessment in the context of participating in a clinical trial and see what they would prefer to do.

The benefits would be immense. This method could highly enhance the quality of the data, the efficiency of data capturing and, not least of all, it would help reduce the costs of a clinical trial. I believe that online assessment will be a matter of course in the future, but not immediately.


A Peek at the April Newsletter for Members

Posted April 25th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our April edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

What’s with sharing, anyways?

We’ve said it before, and we’ll say it again – we believe in the power of openness. By sharing your experiences, healthcare can be changed for the better.  You can monitor your health status and make changes accordingly; you can find out you’re not alone; and both patients and organizations can do research based on your real-world experiences.

Every single patient on our site contributes to this change.  When you add conditions, treatments and symptoms, you’re entering data that enables others to learn from you.  The way we see it, when everyone shares, everyone benefits.  To see how, check out these reports and dig deeper into the individual stories and data.

Treatment Reports
Things you can learn: How is this treatment working for other patients?  What side effects have they reported?  What are the most common dosages?

Symptom Reports
Things you can learn: How many other patients have experienced this symptom?  What are they taking to treat or manage it?  How severe is it for them?

Condition Reports
Things you can learn: Who else has this disease?  When did they experience their first symptom?  What are some of the most common treatments?

Thanks for everything that you’ve shared – and continue to share – at PatientsLikeMe.  Here’s to all that will be learned in 2012 as a result!

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

WHAT’S YOUR STORY?

Everyone has one.  Tell yours in our new open text box (shown below).  Anyone who follows you will then see your story in their feed.  Stories are also important part of your health journal.  Have you used the new journal feature? Adding a story (and photo!) about any of your conditions is a great way to get started.

Tell Your Story in Freeform Text and/or Photos!


Six Days Until the Parkinson’s Unity Walk

Posted April 23rd, 2012 by

Parkinson's Unity Walk Is Saturday, April 28, 2012

Parkinson’s Awareness Month isn’t over yet!  This month-long effort is capped off by the Parkinson’s Unity Walk, which takes place Saturday, April 28th, in New York City’s Central Park.

The largest grassroots awareness event for Parkinson’s disease (PD), the Unity Walk is anticipated to attract more than 10,000 participants.  If you’ve never attended something of that size, it’s quite a lot of people.  Beyond the sheer scope of the event, there’s another noteworthy fact:  100% of all donations go towards research supported by the seven major US Parkinson’s foundations.*  In 2011, that came to more than $1.5 million!

The 2009 Unity Walk in Progress

Now in its 18th year, the Unity Walk is an opportunity for solidarity amongst the different PD organizations.  Admirably, these groups have shown there’s no need to compete for funds when you can come together as one.  “This event truly unifies the whole Parkinson’s community behind a common mission—supporting the best, cutting-edge research,” says Joyce Oberdorf, President and CEO of the National Parkinson Foundation.  “It is like no other.”

A PatientsLikeMe Member and Her Family at the 2009 Unity Walk Start Gate

What’s new for 2012?  First, there’s a new 1.4 mile walk route in Central Park – slightly longer than 2011 but shorter than in previous years.  (It is wheelchair accessible.)  There will be free coffee served this year, and there will also be four food trucks on hand.  Another fun feature is the Team Photo Booth.  Get a printed copy of your photo right away and then download a digital copy later from the vendor website.  Learn about other new aspects here.

Over the years, PatientsLikeMe has sponsored a number of Unity Walk teams through our PatientsLikeMeInMotion program, which provides bright blue T-shirts, a monetary donation and more.  We’ve also attended the Unity Walk and interviewed some of the PatientsLikeMe members present.  Check out the short one-minute video below featuring four members of Team PatientsLikeMe at the 2010 Unity Walk.  (Find other Unity Walk interviews on our YouTube channel.)

*All Unity Walk donations are split evenly among these seven US organizations:  American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, Parkinson’s Action Network, The Parkinson Alliance, Parkinson’s Disease Foundation and The Parkinson’s Institute and Clinical Center.


A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan

Posted April 20th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton.  Today we hear from Research Scientist Timothy Vaughan, who earned his PhD in physics before deciding to focus his simulation and modeling skills on medical questions.

1.  What research projects are you working on at the moment?

I am working on a few different things. My primary focus recently has been on modeling multiple sclerosis (MS). As just about anyone with the disease can tell you, MS is a highly complex, highly variable illness. To even get a good description of the experience of a patient is a challenge. As one of the “mathy” people at PatientsLikeMe, my job is to try to make the description as systematic and quantitative as possible, because mathematical relationships are often the best tools in trying to solve the underlying puzzle of what the body is doing.

PatientsLikeMe Research Scientist Timothy Vaughan, PhD

So, for example, I have recently been looking at some of the ways that symptoms and the Multiple Sclerosis Rating Scale (MSRS) are interrelated, which may help us understand how functioning and symptoms go together. And, although I am focusing on MS, I am constantly struck by how certain concepts seem to apply across conditions, so I am hopeful that we can learn things that will ultimately help all our patients.

2.  Tell us how computer simulation and modeling help you do your job.

It is fair to say that my job would not even exist without computer simulation and modeling! Partly because clinical trials and other scientific methodologies have become so expensive and time-consuming, scientists in healthcare have to really become creative in trying to learn more about patients and their conditions. Simulations and modeling are becoming essential tools in the era of “big data” that PatientsLikeMe is at the forefront of.

3.  What do you see ahead in terms of PatientsLikeMe’s research potential?

I have to quote the Danish physicist Niels Bohr: “Prediction is very difficult, especially about the future.” I think almost everyone in healthcare right now believes that patient-reported outcomes are going to be of greater and greater influence in the future…but no one is 100% certain how!

In many ways, research is forced to be in a somewhat opportunistic position, because one is never quite sure where the most promising frontiers are, where one is most likely to discover something interesting and useful for patients. But our research potential really stems from our patients. Their willingness to share how they are doing, in so many ways, gives us potential to not just work on what appears to be interesting now, but to quickly respond to new directions that might arise in the future.

4.  What are the three best things about working at PatientsLikeMe?

For me personally, the best thing about PatientsLikeMe is that every morning I wake up knowing that everything I work on is not just scientifically “interesting” (although I like that!), but also really has the potential to help patients’ lives. So, even though the work can be frustrating at times, it is always worthwhile.

The second awesome thing, and it’s almost a cliché to say around is here, is that the people here are so passionate and smart and great to work (and play!) with. Seeing other people working hard and caring deeply about what they do is a great motivation.  The third awesome thing: Alison makes sure there is a constant supply of York Peppermint Patties in the kitchen.


PatientsLikeMe Named One of Lead411’s “Hottest Companies in Boston”

Posted April 18th, 2012 by

PatientsLikeMe Is a 2012 Hot Company

Is it getting hot in here?

Earlier this month, corporate research firm Lead411 announced its 2012 “Hottest Companies in Boston” awards, which recognize the fastest growing technology companies in the Boston area.  The award selection process started with over 1,776 companies and was narrowed down to the top 62.  We were one of them!

Headquartered in Cambridge, Massachusetts, PatientsLikeMe is honored to have been recognized, and we congratulate all of our fellow award recipients.  Check out the press release to see the full list of honorees and learn about the award criteria.  And in case you’re wondering, yes, we’ve had to turn up the A/C since becoming a “hot company.”


Spotlighted Blogger: Psoriasis Patient Alisha B. of “Being Me in My Own Skin”

Posted April 16th, 2012 by

Psoriasis Blogger Alisha B. of "Being Me in My Own Skin"

Welcome to the latest installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesistype I diabetesbipolar I disorderParkinson’s disease and ALS, and today we introduce Alisha B., who felt alone in her struggles with psoriasis until “coming out” on her blog, Being Me in My Own Skin.

Alisha is currently participating in the WEGO Health Activists Challenge, which encourages health bloggers to write 30 posts in 30 days during the month of April.  To make it easy, WEGO sends out a daily theme to tackle.  Alisha has risen to the occasion and produced inspired posts such as “Dear 16-Year-Old Me” and “I Do This for One Reason.”  How has blogging changed her?  Find out that and more in our interview below.

1.  Tell us about growing up with psoriasis – the physical and emotional impact.

Growing up with psoriasis was not an easy battle.  I was not only dealing with the regular stuff like puberty and body image, but throwing psoriasis in the mix made it a lot tougher. I’ll be honest, confidence was not something I had very much of as a child. Although, I was not a depressed child. I was considered the class clown or goofy one among my friends, but deep down inside I was hurting.

I just wanted to be “normal” and in my eyes that was a life without psoriasis. I may have been this confident chick to somebody from the outside looking in, but I stopped myself from a lot due to my condition. Now that I look back on my teenage years everything I did was virtually shaped around my psoriasis. The decisions I made, the activities I participated in, the events I went to, even the clothes I wore.

2.  What’s it been like “going public” about your psoriasis on your blog?

I started my blog in June 2011 after going to the National Psoriasis Foundation (NPF) conference. I remember sitting in a workshop they had about using social media to advocate for your condition. I had seen other psoriasis bloggers, and I remember saying to myself, “I can do that.” On the way home from the conference, ideas were flowing to my mind on different posts I could do, and it was a really great feeling.

"When I started to really and truly love myself, accepting my psoriasis became a lot easier." - Alisha B.

Going public with my condition through my blog has been liberating! I wish I would have done this a long time ago. A lot of times I hid, uncertain of how people would accept my condition. But today, the more people I discuss my disease with, the more I realize that the things I was telling myself mentally were only because of my own insecurities. People are a lot more understanding than I could have ever imagined.

My outreach has also helped me to connect with other people dealing with psoriasis, and I no longer feel alone like I did just one year ago.

3.  What are the most helpful things you’ve learned from other psoriasis patients?

I met a young lady named Kasi at the NPF conference. Her psoriasis condition was equivalent to mine. Her skin was very visibly broken out. She was so confident with the way she walked and the clothes she wore, it really inspired me to stop hiding. Kasi as well as others at the conference really made me feel good and encouraged me. I’ve had this type of encouragement from family and friends, but nothing is like the inspiration that you receive from people who are actually living with this disease. Other psoriasis “conquerors” encourage me to not be ashamed and to embrace my condition.

4.  Tell us about the WEGO Health Activists Challenge and why you’re participating.

The WEGO Health Activists Challenge was suggested to me by the NPF. Doing the challenge is exciting because there are new topics to discuss everyday and I get to connect with other activists. I decided to participate in the challenge to bring more attention to psoriasis. A lot of people are silent about it out of fear of ridicule, and I was once one of these people. The more people who know about this disease, the faster the stigma will end.


Recognizing Autism Awareness Month

Posted April 13th, 2012 by

Click Here to Order Your Own Autism Awareness Puzzle Ribbon (or Postage Stamps!)

Have you seen the awareness ribbon with the puzzle pattern?  It’s the symbol for autism awareness, with the puzzle pieces representing the mystery and complexity of autism spectrum disorders (ASD).  The different colors and shapes also highlight the diversity of families living with this condition, which occurs in 1 in 110 births in the US according to the Autism Society.

April is Autism Awareness Month, so it’s a good time to boost your knowledge of this increasingly prevalent developmental disability (with an alarming 10-17% annual growth).  Over a lifetime, ASD care costs $3.2 million per person.  But the cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.  That’s why it’s so important for parents to get their child evaluated if they suspect autism.

What should you look for?  Signs of autism typically appear before the age of the three and can include language delays (or the lack of spoken language), repetitive behaviors (e.g. arm-flapping or repeating language), poor eye contact, lack of interest in peer interaction, lack of spontaneous play and a persistent fixation on the parts of objects.

A Snapshot of the Autism Community at PatientsLikeMe

Even though boys are four times more likely to have ASD than girls, PatientsLikeMe’s community of 600 autism patients (some with accounts maintained by caregivers) has a higher number of females, interestingly.  What are they doing to cope?  One of the most commonly reported treatments is occupational therapy (OT), which helps ASD patients overcome daily living challenges. Our OT treatment evaluations share valuable advice and experiences, such as this tip:  “OT through the school is helpful for less appointment making along with being in a familiar environment.”

To learn more about autism, and how you can become an advocate, check out this powerful video made by the father of an autistic daughter.


Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device

Posted April 11th, 2012 by

For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost.  But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one.  The problem?  They’re big and expensive, and in many cases, US health insurers won’t cover them.

The "Tag" or Signature for Los Angeles Graffiti Artist TEMPT ONE

This discovery came about when Ebeling learned about a legendary Los Angeles graffiti artist named Tony “TEMPT ONE” Quan (whose “tag” is shown above), who was diagnosed with ALS at age 34.  Quan’s family told him that they were only able to communicate with their completely paralyzed son through spelling out words.  Shocked, Ebeling decided he had to help.  “There are certain inalienable rights that people are entitled to, and I think being able to express yourself is one of them,” says Ebeling, who now gives TED talks (see video below) about this unexpected calling.

First, Ebeling convinced Quan’s insurer to cover an eye gaze system so that the talented artist could “speak” again.  But he didn’t stop there.  He wanted Quan to not only be able to communicate but to draw, so that he could continue his career.  So Ebeling founded the Not Impossible Foundation and enlisted the help of programmers and open source activists in creating a low-cost, open-access writing and drawing device for paralyzed patients.  Despite having no background in ocular recognition, they pulled it off.

Graffiti Artist and ALS Patient TEMPT ONE Wearing the EyeWriter Device

Named one of the top 50 inventions of 2010 by Time, the brilliantly simple EyeWriter device can be made for less than $50.  It involves a pair of sunglasses, IR LED lights, copper wire and a PC webcam.  There’s no technology component that can’t be found at Home Depot or Radio Shack, and that’s the point.  With free open-source software that can be downloaded online, the DIY EyeWriter is a device almost anyone can build and use.  (Download the instructions here.)

A Quote and Sketch from TEMPT ONE About How It Felt to Be Able to Draw Again

“We’ve created a device that has absolutely no limitations,” says Ebeling.  “There’s no insurance company that can say ‘no.’ There’s no hospital that can say ‘no.’ Anybody who’s paralyzed now has access to draw or communicate using only their eyes.”  Case in point:  in April 2009, Quan was able to create a completely new 10-story mural using only his eyes.  Two years later, his post-ALS artwork appeared alongside famous street artists Banksy and Shepard Fairey in a MOCA exhibit.

This amazing story of inspiration and ingenuity has now been turned into a documentary entitled Getting Up: The TEMPT ONE Story.  Directed by Ebeling’s wife Caskey, the film won the Audience Award for Best Feature Documentary at the 2012 Slamdance Film Festival.  Check out the trailer below and read what this husband-wife team think are the universal lessons from their EyeWriter journey.


ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital

Posted April 9th, 2012 by

At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood test to tell you exactly how patients are doing, the main outcome measure used to record how PALS are doing is an instrument called the ALS Functional Rating Scale – Revised (ALSFRS-R).

A Section of the ALSFRS-R Questionnaire Pertaining to Speech Impairment

It’s a short, 12-item questionnaire that is the “gold standard” tool for clinical trials, but it has one important caveat: it’s normally only completed by clinicians (doctors, nurses, research assistants, etc.). When PALS take part in clinical research studies the questions are read out loud to them and patients are not normally allowed to see their ALSFRS-R scores. When we launched PatientsLikeMe, the concept that we would give patients their very own copy of the ALSFRS-R scale and let PALS see their scores was controversial, and although we’ve gone on to publish a number of studies using the ALSFRS-R and even expanded it for highly impaired patients, the question has always remained: is a patient’s self report of their own ALSFRS-R scores “valid”? In other words, if a patient scored her walking as “3 out of 4” on the scale, would her clinician rate it the same?

Fortunately, our research partners at the Charité Hospital in Berlin, Germany, wanted to know the answer to this too! They’ve been piloting an exciting new project to encourage patients to share progress reports on their ALS with their doctors electronically, using the Internet and other tools including the ALSFRS-R. To support this, they conducted a study where 127 ALS patients were invited to rate their severity of illness over the web, and then were invited to clinic to have their ALSFRS-R score rated in the traditional way by a trained nurse.

A Chart of the Remarkable Similarity Between ALSFRS-R Scores as Reported by ALS Patients (Bottom Axis) and Their Clinicians (Left Axis)

As the chart above shows, the results were unequivocal: “Agreement between both data-capture methods was very high…there was no systematic directional bias to any differences…more than 95% of all pairs of measurement were within the limits of agreement.” Even better, 95% of patients found there was no significant time burden, nor physical or emotional strain from completing such reports over time.

So far this all might seem rather academic, so why is this important? As the authors go on to say, “Completing patient-reported outcomes online could be a way to complement face-to-face visits and manage care in a more personalized and needs-based way, rather than relying upon regular time-intervals such as three- or six-month follow-up appointments. Online patient-reported outcomes could also be used to improve the convenience and thereby participation in clinical trials that use the ALSFRS-R as an endpoint.”

The published study is now available open-access and so is free for all to read in its entirety. We’ll also have an interview with lead study author Dr. Thomas Meyer soon, so stay tuned.

PatientsLikeMe member pwicks


Preparing for Life After an Organ Transplant

Posted April 6th, 2012 by

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented.

What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful.

Click Here to Read or Print This Free Report

Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting the most out of inpatient therapy (hospitalization).


Interview with Jim Atwell, Author of “Wobbling Home: A Spiritual Walk with Parkinson’s”

Posted April 4th, 2012 by

PatientsLikeMe Member Jim Askell, Author of "Wobbling Home:  A Spiritual Walk with Parkinson's"

Continuing our coverage of Parkinson’s Awareness Month, we’d like to introduce you to Jim Atwell, a PatientsLikeMe member who has been living with Parkinson’s disease (PD) since 2007.

A retired college professor, late-in-life farmer and weekly columnist for his rural newspaper, Jim recently published his second book, Wobbling Home:  A Spiritual Walk with Parkinson’s.  This meditation on illness and faith looks at Parkinson’s through the lens of Quakerism.  Why does this Quaker recorded minister view the disease as a gift?  What does he wish the public knew about Parkinson’s?  Find out that and more in our interview below.

1.  Tell us about your latest book, Wobbling Home: A Spiritual Walk with Parkinson’s.

Wobbling Home follows on this man of 73’s two definitions: I’m dealing with Parkinson’s Plus and for forty years I’ve been a Quaker (The Religious Society of Friends). My Quaker belief is that my life itself is a gift: precious, freely given, unearned. And further, that everything in my life is a further gift: health, abilities, family, valued friends.  I’ve earned none of these. They’re gifts. And after my initial diagnosis, I came to view Parkinson’s as a gift as well. It’s not one I would have chosen, but I accept it gratefully as the definition of the rest of my life.

Click Here to Learn More the Book on Amazon

And so the book is an attempt to share my attempt to harmonize this progressive disease with my own pilgrim’s progress as I wobble on toward home. I talk about Parkinson’s from the inside, dealing not just with the physical symptoms (lack of balance, shuffling walk, tremors, slurred voice, etc.) but with the perceptual, emotional, and psychological symptoms that recreate our interior lives. And that’s where Parkinson’s and my Friends’ beliefs dovetail together.

2.  In honor of Parkinson’s Awareness Month, what aspect of the disease do you think the public needs to know more about

The general public needs to know of the prevalence of Parkinson’s. Statistics now suggest that one in every 300 of us Americans suffer from it, with an ominous bulge in rural populations, perhaps because of careless use of pesticides and chemical fertilizers. Second, the public needs to know that, though their disease is chronic and irreversible, until its later stages most “Parkies” can live largely normal and often very productive lives.

Third, the general public (and many, many doctors) need to know how subjective Parkinson’s is from patient to patient. In our [local] support group, no two members have exactly the same mix of symptoms and medications. And fourth, the general public needs to know how important it is that they make a place in their midst for Parkinson’s sufferers, and for all with chronic, incurable diseases. To my mind, that’s what  “treating others as you’d want to be treated” is all about.

3.  You and your wife attend a support group that has both joint and separate meetings for patients and caregivers.  Tell us about that.

Care partners, female or male, are the unsung heroes of Parkinson’s. When our support groups meet, we first have an hour with Parkies and partners together. It’s a how-goes-it session, with each person present saying what the last two weeks of dealing with the disease have been like. Members in each group often learn surprising things about their partners’ dealings with a disease they truly share.

In the second hour, the groups separate. Care partners can then talk together about their own challenges, frustrations, and manners of coping with someone increasing debilitated, both physically and cognitively. (From what my wife tells me, a good amount of healthy venting goes on.) Meanwhile we Parkies are trading notes across the hall. Talk among us is largely of symptoms: who is having plumbing problems, who is dealing with hallucinations, who is frustrated with his GP or neurologist’s seeming lack of understanding of what’s going on INSIDE her or him.

Our group is largely men with a few women; the [partner] support group is largely women with a few men. (Initially we thought we’d have to have an all-men’s support group – how else to talk freely about plumbing problems and the like? We needn’t have worried a moment! Turn out that we’re all rowing the same boat.)

4.  What kind of role does PatientsLikeMe play in your life?

PatientsLikeMe is an invaluable aid to me, and I recommend it to everyone in our group. In fact, it fulfills the same great needs: for good and reliable information but, perhaps more important, for a sense that I’m not alone with Parkinson’s challenges. God bless PatientsLikeMe, its staff, and its work!


Observing Parkinson’s Awareness Month

Posted April 2nd, 2012 by

Since 2010, April has been designated as Parkinson’s Awareness Month by the US Senate.  The goal is to shine a spotlight on the national impact of Parkinson’s disease (PD), which affects more than one million Americans.  A progressive disorder of the nervous system, PD is often marked by muscle tremors, muscle rigidity, decreased mobility, stooped posture, slow voluntary movements and a mask-like facial expression.

The 2011 Parkinson's Unity Walk Had Nearly 10,000 Participants and Raised Over $1.5 Million for Parkinson's Research

Parkinson’s activists been coming together for the last 17 years for the Parkinson’s Unity Walk, held annually in New York City’s Central Park at the end of April.  (The 2012 event takes place on Saturday April 28th.)  Now, with Parkinson’s Awareness Month surrounding it, there is a month-long effort to raise awareness and research funds.  One of the driving reasons is that PD complications are the 14th leading cause of death in the US.

PD was one of the flagship conditions at PatientsLikeMe, and today we have more than 6,100 patients who report the disease.  What are they doing to cope?  Some of the most commonly reported treatments include prescription drugs such as Carbidopa-Levodopa (Sinemet), Ropinirole (Requip), and Rasagiline (Azilect); procedures such as Deep Brain Stimulation (DBS) and acupuncture; and supplements such as CoEnzyme Q10.  Click on each treatment to see how our patients rate the effectiveness, side effects, cost and more.

A Snapshot of the Parkinson's Community at PatientsLikeMe

We also have an active Parkinson’s Disease Room in our forum, where more than 7,000 patients are discussing 12,000+ topics.  To date, we’ve logged more than 100,000 forum posts about PD!  What are patients talking about?  Some recent threads include:

  • Do you have a caring doctor?
  • Dealing with sadness and stress
  • Knitting:  therapeutic or tortuous?
  • The neglected pain of Parkinson’s
  • Resigned from my job today

For more insight into living with PD, stay tuned for our interview later this week with PatientsLikeMe member Jim Atwell, author of Wobbling Home:  A Spiritual Walk with Parkinson’s.


PATIENTSLIKEME ANNOUNCES NEW COMMUNITY, DOGSLIKEME

Posted April 1st, 2012 by

Researchers Use Open Medical Network to Analyze Canine Health

CAMBRIDGE, Mass. — (April 1, 2012) — PatientsLikeMe (www.patientslikeme.com), the leading online community
for people with life-changing conditions, announces the opening of its doors to canines. The initial launch will be open only to dogs (Canis lupus familiaris). Future releases will allow participation of wolves, jackals, coyotes, and foxes. By sharing information about their symptoms and treatments, dogs will be able to find others just like them. Initial outcomes include urinary and barking frequency, feedings per day, indoor vs outdoor hours, and average time spent outdoors before urination and/or defecation.

“With 78 million dogs in the country, and potentially 5 million dogs who are sniffing around for what seems like hours, there is an unique opportunity to use the power of our open medical network to understand this issue and accelerate the validation and development of new biomarkers.” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. There are currently more than 7,000 dogs in the PatientsLikeMe dog community sharing meaningful data which researchers are using to analyze and understand canine health.

Heywood will announce the new Dog community on stage at the Westminster Dog Show this fall. DogsLikeMe is the first of many animal communities to be launched by PatientsLikeMe, which, in addition to the 7,000 dogs, now boasts more than 140,000 humans sharing health data on treatments, symptoms and outcomes. More canine communities will be added in the coming months. A common cat (Felis silvestris catus) community will be launched in the fall. Feline and canine communities will not be allowed to interact in the forum.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments.