“This represents my family, we share everything together.”
- PokieToo, PatientsLikeMe Parkinson’s Community

“The Patient Voice” is here!  Are you ready to listen in?  Today is the official premiere of our new PatientsLikeMeOnCall^TM podcast, “The Patient Voice.”  Our first guest is Parkinson’s community member, PokieToo. Pokie is the founder and creator of the PatientsLikeMe Parkinson’s quilt, a handmade and inspiring piece of patchwork pulled together by members all over the world.  A valuable member of the PatientsLikeMe community, Pokie is recognized in the greater Parkison’s community as a leader and advocate.  She has worked a lot with various nonprofits, including as a consultant for the Parkinson’s Disease Foundation Parkinson’s Quilt Project, and she’s the captain of our members’ Team PatientsLikeMe at the Parkinson’s Disease Unity Walk every year.

As you’ll learn from hearing from other members throughout this series, everyone knows her and loves her.  Pokie is truly an inspiration to everyone she meets. Listen in to learn about how the PatientsLikeMe PD quilt was created, how it’s being used to empower other patients, and why she calls PatientsLikeMe her family.

On Thursday October 7, 2010, the PatientsLikeMeOnCall ^TM podcast is proud to present a new series called “The Patient Voice.”  Through these podcasts, you’ll hear emotional and inspiring stories from our community members that demonstrate the type of sharing and positive connections being made by patients on our site and how these connections are affecting their lives.

For the first run in the series, we’ll be focusing on the PatientsLikeMe Parkinson’s community and hearing from members about a very special handmade quilt.  A few years ago, members of this community came together online and decided to create the quilt as a fun activity to get them through the winter season. Each patch of the quilt is designed by a different member of the community and demonstrates, in a very personal way, something about the individual and her/his experience living with Parkinson’s disease. Initially a fun passion project, the quilt has become an expression of the power of community. Little did the quilters know how much their project would end up impacting their lives, the lives of other members, and, even beyond that, the lives of people in the Parkinson’s disease community as a whole. This quilt has traveled all over the world; it’s been featured in countless news publications spotlighting our members and their work with Parkinson’s disease; it was spotlighted by the Dartmouth Hitchcock Medical Center in their Health Living & Learning conference brochure; and it was, in part, the inspiration for the Parkinson’s Quilt Project being pulled together by the National Parkinson’s Foundation.

In this five part series, we will be talking to some of the members who contributed patches to the quilt as well as other people who have been touched by the quilt. To get you geared up for this series, here is a quick clip from our interview with PD community member, BrownCat.

The premiere launches this Thursday (October 7^th) at 2pm EST with an interview with PokieToo, and the other interviews will run every Tuesday following.  To listen to the series, you can subscribe to our iTunes page or you can find our podcasts on our PodBean page. Get ready to be moved by “The Patient Voice”…

To continue our series in honor of Parkinson’s Awareness Month, here’s another interview to bring you “the patient voice.”   We recently featured this interview with three-star member daddytom in the April edition of our Parkinson’s Community newsletter. Read on to learn what he has to say about finding courage, recognizing mentors and raising awareness about the disease.

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	(Amy) Where do you find courage?
	(Daddytom) I don’t know if I have ever really thought about where I get courage from.  Tough question.  I find courage from several sources.  One is my faith in God.  I believe he is always here with me and only wants the best for me.   Can he cure Parkinson’s disease? Yes I believe he can.  Will he cure Parkinson’s disease?  I do not think so.   I think we are all given different trials throughout our lives.  And how we handle these trials makes us either stronger or weaker.I also get courage from my bride of 30+ years.  She is my best friend and confidant.   I can tell her my troubles and cares and she will listen.  And I get my courage from my support group and from PatientsLikeMe.   There is always someone facing worse circumstances than me.  And if that individual or individuals can face their problems and survive, then I know I can overcome my problems and be a better person for it. I also believe you just do whatever you have to do to get a job done.  And some days that has to be broken down to its simplest form, like just getting out of bed and putting one foot in front of the other.  And just focusing on what is directly in front of you.  I try not to worry about yesterday or be concerned about tomorrow.  For all I really have is the present, and it is a gift from God, so I need to use it wisely.
	(Amy) Who has been a mentor to you?
	(Daddytom) I do not know if any one person has been a mentor to me.  There are several folks I admire and look up to because of the way they live their lives and the struggles they have had to overcome in their lives.As far as my life since PD, there are two people who really stand out.  One is my neurologist.  He and I have become more than doctor / patient.  He once said to me that he was “proud to call me a friend not just in private life, but also in his professional life.”   I am not a doctor nor will I ever be a doctor.  But I am working and have worked hard to increase awareness of Parkinson’s disease and its effects on people with Parkinsons (PWPs) and their families in New Braunfels and Comal County.  There are over 250 diagnosed PWPs in Comal County. The other person would be my bride.  She has been my biggest fan and supporter since my diagnosis.  She is the shoulder I lean and cry on.  She pushes me to stay active and involved with APDA and our support group.   She is an emergency room nurse and has spoken to groups on PD and its effects on PWPs and their families.  She is a remarkable woman. And I draw courage from our support group members and from members of PatientsLikeMe.   There are several folks on PatientsLikeMe whom I admire greatly.   I will not mention names since I did not get their permission.  I hope they know who they are.  I have the deepest admiration for their spirit and determination.
	(Amy) Do you try to raise awareness about your condition – and if so how?
	(Daddytom) When I was first diagnosed with PD, my neurologist wanted me to attend a support group in San Antonio.  It is about a 50-mile drive to the support group.   I was still employed and working 65 to 75 hours a week.   So on my one day off I was not going to sit and listen to all “of those sick people complain about their problems.”In December 2006, I was forced to retire.  My doctor told me there was no reason for me not to go to a support group, and I still flat refused.   After much pushing and prodding from my doctor and my bride, I literally woke up the morning of July 1, 2007, and said I would not go to San Antonio to a support group, but I would start one in New Braunfels.  My thoughts were to get a support group going and then very quietly disappear after a couple of months. On the last Saturday in July 2007, we had our very first Comal County Parkinson’s Support Group meeting.   We had six attendees.  Of those six only my bride and I are left.  We have grown from that first meeting of six to having 118 PWPs, their spouses and caregivers registered with us.   Today we have grown from one meeting on the fourth Saturday of every month to having two meetings a month.  We meet on the second and fourth Saturday of each month.   On the second Saturday of the month, we have a discussion meeting with an average of 12 attendees.  And on the 4th Saturday of the month, we invite a speaker and average 40 attendees. In April 2009, our group hosted their first annual Parkinson’s Awareness Picnic.  There were over 100 people who attended, and it was free.  This April 10, 2010, we are having our Second Annual Parkinson’s Awareness Picnic, and as of April 1st, we have 83 folks signed up for the picnic.   And we are having several PatientsLikeMe members (PLMers) from different cities close by coming to our picnic. I find that very exciting.  The picnic is open to all PWPs, their spouses and families and caregivers and to anyone interested in Parkinson’s disease. In October 2009, we had our first Parkinson’s Disease Symposium.  The weather was thunderstorms, rain and cold.  We still had 89 attendees for the symposium.  The symposium lasted half a day and lunch was included and it was free.   We are already planning our Second Annual Parkinson’s Disease Symposium for October 9, 2010.  We have already booked our keynote speaker. In 2009 and 2010, Mayor Bruce Boyer of New Braunfels issued a proclamation declaring April as Parkinson’s Disease Awareness Month for New Braunfels and Comal County. In March of this year, we were granted a provisional charter from APDA to form the Comal County Chapter of APDA.  I find this very exciting.  I believe in APDA’s motto “Help ease the burden…find a cure.”  I personally believe that today, it is more important to “help ease the burden” through education and support. What I believed would be a chore and a labor has become a true labor of love.  I thank God everyday for the Comal County Parkinson’s Support Group and its members.   After almost three years, on the Saturday mornings of our support group, I wake up with the same excitement a small child has on Christmas morning.  I know of no other way to explain the passion I have for Parkinson’s disease, APDA, and PatientsLikeMe.  If I can help make one person’s life a little easier for something I have said or done, then my life has been successful.
	(Amy) How has PatientsLikeMe impacted your outlook?
	(Daddytom) Are you picking on me with the tough questions?  I cannot say enough about PatientsLikeMe.  At every support group meeting and every time I get a chance, I talk about PatientsLikeMe.  I joined PatientsLikeMe in November 2007.  I sort of lurked around the edges until August of 2009.  Then it was like the dam broke.  I started reading and posting and reading and posting and reading and posting.  I began to pay attention to what people were posting.   Not just about their symptoms, but about their concerns and fears and how this thing called PD affects their everyday lives.  I was hooked and am still hooked.I love my support group and all of the people in it. But on PatientsLikeMe, I can receive help 24/7, 365 days a year.  I am never alone.  Through private messaging, the PLMers I spoke about earlier have helped me maintain my sanity, they have let me cry on their shoulders, and they have allowed me to rant and rave if I needed to.  And today they still love me. They have given me hope when I believed I was hopeless.  Because of PatientsLikeMe and ALL of the members, I have learned more questions and more treatments to ask my doctor about.  PatientsLikeMe helps me help my doctor stay honest. When I am in that “I don’t give a damn” state of mind I know I can log on to PatientsLikeMe and everything will be okay.  All of this is before we even get to all of the great tools on PatientsLikeMe for tracking my PD symptoms and treatments and comparing them to other PLMers.   How can I ever find the words to thank Ben, Jamie, and Jeff for developing and believing in PatientsLikeMe?  There are no words to describe all they and the staff at PatientsLikeMe have done for me and for all of the members of PatientsLikeMe.  All I can say is “Thank You” to Ben, Jamie, Jeff and all of the PatientsLikeMe staff for helping myself and all PLMers live a better life.
	(Amy) Thank you for all that you’ve given PatientsLikeMe, its members and the Parkinson’s Disease community as a whole!

The PatientsLikeMeInMotion sponsorship program has been a tremendous success so far this year! Sponsorship requests from members participating in nonprofit events are flying in by the second from all over the country.  It’s exciting to see our members are as active offline as they are online about raising awareness of their condition.  The PatientsLikeMeInMotion program gives members the chance to show their PatientsLikeMe spirit, meet and connect with new people about their condition, and, as we like to say, Tell The World about their experiences.   It also allows PatientsLikeMe to give back to our 3-star members for all the sharing that they do.

Since April is Parkinson’s Disease Awareness month, we wanted to highlight one particular PatientsLikeMeinMotion team from our Parkinson’s community.   This  “Team PatientsLikeMe” has been together for 3 years and will once again join hands (and feet) for the Parkinson’s Unity Walk this Saturday (April 24^th in New York City).  As we continue to get pumped up for this year’s Unity Walk, check out this great video from past events and hear community members “Tell The World” about their experiences with Parkinson’s Disease and PatientsLikeMe.

Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming.  That’s why PatientsLikeMe continues to get involved in the research process.  With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the same genetics as them.  As part of our commitment to supporting genetics discovery, PatientsLikeMe recently partnered with 23andMe, aiding them in their research effort to get 10,000 Parkinson’s patients for a groundbreaking research study.

Most of the time, people don’t know what causes their Parkinson’s disease.  It could be due to genetic factors we haven’t identified yet, environmental exposures, or maybe even something else completely.  However, there are some known genetic causes of Parkinson’s disease. Sometimes different genetic mutations have different disease characteristics, so there’s some benefit to knowing what mutation you may have.  For example, different genetic mutations can result in an earlier or later onset for Parkinson’s disease, some have a milder or more severe disease course, and others have a higher or lower chance of dementia.  Knowing your genetic status could help you plan ahead, especially if you have a strong family history of the disease.

The 23andMe kit tests for one genetic mutation that can cause Parkinson’s disease – LRRK2 G2019S.  The chances of having this mutation vary with your ethnicity, and not everyone with the mutation will get Parkinson’s disease. However, some studies claim that LRRK2 G2019S is responsible for about 5-6% of all familial cases of Parkinson’s Disease and 1% of sporadic (randomly occurring) cases of Parkinson’s disease.

We are working to include as much meaningful genetics information in the PatientsLikeMe Parkinson’s community so that you can make the best decisions collaboratively. For those PatiensLikeMe Parkinson’s community members taking advantage of the 23andMe offer, we encourage you to upload your genetic information on your PatientsLikeMe profile so we can continue to expand our understanding of genetics and Parkinson’s in the context of individual patients.  If you go to your 23andMe account and find that you have the LRRK2 G2019S mutation, you can add it to your PatientsLikeMe diagnosis history.  Once you have entered your genetics to your profile, you will be “findable” by other “patients like you” with the same genetics. The PatientsLikeMe research team is excited about learning more about Parkinson’s with your help. Sharing information will help us all learn as much as we can about the disease.

There are rare diseases, and there are rare diseases. Here at PatientsLikeMe our first community was built for patients with ALS (estimated US Prevalence: 30,000), and in common with our other neurological communities there is a familiar list of challenges: low public awareness, little funding for research, and a lack of adequate treatments. However, over the past year or so I’ve really had my eyes opened to the differences between “rare” and what you might call “super-rare” conditions, such as Devic’s neuromyelitis optica. Nobody really knows how many people Devic’s affects as it is frequently confused with MS, but there are probably only a few thousand patients with this condition in the world. That’s why we’re incredibly proud that our Devic’s community currently has 136 registered patients sharing health data with one another; that’s more than 5 times larger than the largest study I’ve seen on the condition in the scientific literature (which included collaborators from around the world in seven specialist centers over the course of several years).

I was privileged to be invited to speak at the annual meeting of Eurordis (The European Organization for Rare Diseases) in Athens, Greece, to meet with some of the leading online health efforts in this space. Attendees included non-profit organizations, medical professionals, and patients themselves from all over Europe.  We all convened to discuss some of the most innovative tools available on the web for patients to find other patients like them, share their data, and improve their outcomes. PatientsLikeMe was featured as an ambitious and innovative effort to accelerate the pace of research in rare diseases but we also saw great initiatives that had come from the frontlines of rare diseases.  In fact, the point about ultra-rare diseases was driven home in the opening keynote by Yann Le Cam when we heard that there are some 5,500 rare diseases cataloged by Orphanet (including Devic’s) which are not in the ICD-10 taxonomy of diseases. Ultimately, at PatientsLikeMe, our goal is to build a community for every life-changing illness that exists, but what can patients with these conditions be looking for in the meantime?

The highlight of the meeting for me was seeing the incredible work being carried out at Duchenne Connect.org (The Netherlands) and Duchenne Connect.org (USA). Founders Elizabeth Vroom and Pat Furlong gave an overview of their experiences building patient-focused programs that allowed parents of children with Duchenne’s Muscular Dystrophy to support one another, accelerate the efforts of researchers, and bring greater attention and focus to patients affected by this rare disease. From the other side of the Atlantic, Mary Dunkle from NORD (National Organization for Rare Diseases) made a clear statement that online communities have the power to be far more than just bulletin boards and blogs for patients to use for emotional support. In her presentation, she stated: “We want to move beyond simply providing emotional support…to facilitate action that produces results”; we couldn’t agree more. Videos of the talks from these amazing patient advocates (along with many other talks from the meeting) can be viewed online here at the Eurordis website.

There were a number of challenges that were highlighted during the meeting. David Golub was the first to articulate that there are serious ethical issues implicit in for-profit companies (like us!) being involved in patient research that was traditionally the remit of academics and clinicians. He asked us to all consider what we can all do to “protect the public commons?”. Unsurprisingly for a European audience, there was much concern about language specialization.  Patient advocates insisted on better localization to allow broader access to non-English speakers, and for providers like us trying to find innovative ways to ensure excellent content that can be dynamic and accessible for all. My own view is that technology (like Google Translate) will outpace any system we could possibly resource with human translators.

Finally, there was the question put to us by event organizer Denis Costello from Eurordis; how can small non-profits in ultra-rare diseases partner with organizations like PatientsLikeMe?  It’s something we think about every day. Our Devic’s community came out of our MS Community; PSP and MSA came from Parkinson’s; and PLS and PMA came out of ALS. We are developing strategies to build communities for “clusters” of communities that will allow us help a broader swathe of patients with both prevalent and rare conditions. It was hugely encouraging to see the energy, ingenuity, and determination that you see when advocates are passionate about helping patients.

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV, or the impairment that comes from MS, Parkinson’s or ALS, what helps us the most is when those around us reach out and share their support and advice.

You would think that your ability to share would be as much your right as speech, but is it? It’s not clear that is true in healthcare today, nor is it clear that such a right will be protected tomorrow. Privacy is also a right – a right to not share what you do not want shared. It’s a fair and just expectation that the doctors and clinicians you employ to support you in your illness will not share your information without your permission. Today, I fear that privacy has become much more than a right; it has become a goal. When that happens, people begin to find ways to make it difficult to share in the name of privacy.

More than once we have been asked by people in the medical system whether patients are allowed to share information with each other like they do on PatientsLikeMe. In fact, in some countries you can read their rules in a certain way and reasonably deduce that this type of sharing is not allowed. It is vitally important that we do not let this become a reality in the U.S.  There are some that would take away your right to share because they do not believe you are competent to weigh the risks and benefits of sharing, and make a sound decision. Imagine being forced to sign a document before you email a friend on PatientsLikeMe with a question about a symptom? This could be a possible consequence of ill intentioned privacy legislation.

We are working to ensure that sharing is preserved as a right. We know that you share with us, and each other, because you trust that we will do the right thing with that knowledge. At PatientsLikeMe, we are working hard to ensure we earn your trust every step of the way. To do this, we focus our energies on ways to help discover new things about each disease here and support the research system. We do this in the spirit of openness espoused in our Openness Philosophy. We work to be transparent about our business model and our decisions, and try to be accessible to you to answer your questions as you participate in our communities.

It remains our hope that you are wowed like we are about what is possible when we work together to make our healthcare system, and our lives, better. We have seen so much healing between all of you here on PatientsLikeMe, and it is because we are all sharing together – not alone.

PatientsLikeMe was recently asked to testify before the U.S. Department of Health and Human Services National Committee for Vital and Health Statistics (NCVHS). The NCVHS Subcommittee on Privacy, Confidentiality and Security is responsible for exploring these aforementioned issues as they relate to healthcare, and ran a 3-day hearing to spur informative dialogue about the future of e-healthcare. I was honored to represent PatientsLikeMe, and the thousands of patient members of our communities, as I testified on all of our behalf at that hearing.

As I said in the hearing, openness is what is and can help patients. It’s what matters. We believe in the concept called “The Network Patient” – an approach that puts patients first by giving you what you need to know when you need to know it, and empowering you to act on that information. As members of PatientsLikeMe, you have chosen to embrace openness and take control of your health. You volunteer your health information, your experiences, your life – all in an effort to improve your care, support others, and move research forward.

Here are a few excerpts from our prepared testimony statement that expand on privacy, openness and the future of our health system.

“From our experiences at PatientsLikeMe, we know patients are aware of the issues. They understand and weigh the risks and benefits, and are intelligently making rational choices about where they are comfortable sharing information and how their information will be used to help. If we infringe on this right to share or speak (in the interest of preventing discrimination), we are preventing the flow of information and, by our read, acting contrary to the values on which our country was founded.

Privacy is also more than a legal concept, it is also a philosophical concept. A modern focus on privacy as a goal, not as a right, has moved the line to the point that medicine is slowed, treatments are delayed, and patients die for failure to have what they need when they need it. We have substituted real harm for mostly theoretical harm. We would even argue that the philosophical focus on privacy is a bad thing. We believe that openness is much more powerful concept than privacy in medicine, and one that gives patients the power to take control of their health…

We have to begin to work on building a society that allows the variation in human health and the variation in human condition, one that allows people to be philosophically created equal. We need to work on building a society where information is not used to discriminate, but to assist and support and improve. Restricting the flow of information will not advance solving this problem.

This is not a simple transformation, but we believe it is inevitable. The major privacy issues are not only about health records, but the invisible trail of “breadcrumbs” we leave behind us day to day in life. Health is not a separate concept. It is an integrated concept and, in an integrated world, we have to decide how to build a society that can handle the reality that not all are healthy. We need to work together to get the most productivity and life from all of us.

We believe openness can lead the way to such a society.”

The full testimony is available here and posted to the NCVHS website (along with audio archive of the 5/20/09 hearing). A transcript will also be made available soon. These hearings, and of course our blog, are open to the public for comment on these issues. In the spirit of sharing, please share your thoughts with us here.

Despite some recent happenings in the news, we’re here to assure you that health 2.0 is still very much alive.  Here’s our recent announcement about our new partnership with 23andMe.

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PatientsLikeMe, the first community-based personalized medicine platform for people with life-changing conditions, and 23andMe, the world’s leading personal genomics company, announce a partnership today to help people with Parkinson’s disease.  PatientsLikeMe is teaming with 23andMe on its effort to recruit 10,000 people with Parkinson’s for a massive study of the disease, and give patients a way to learn more about their personal genetics.

“Today, technology is moving faster than the research establishment,” says James Heywood, co-founder and chairman of PatientsLikeMe.  “We are excited to see what happens when you give patients the ability to see variations of their disease and compare it to their own, while enabling them to easily define their personal genomics.”

More…

PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s research. As Lori said last year, “Unity” is the perfect word to describe this event. People from all over the world came together for a common cause and the results were staggering!

Getting to meet PatientsLikeMe members in real life is always a treat, and this year we saw old friends and met some new faces too! For me, one of the highlights was getting to see the amazing quilt made up of squares created by our PD members. Not only is it a stunning piece of craftsmanship, but it represents the spirit of collaboration that is so central to PatientsLikeMe. Members from across the country, many of whom have never met each other, shared their own artistic talents in their individual squares and the final product represents their collective strength, wisdom and passion. It was a great symbol of the power of our PatientsLikeMe community and all their efforts this Parkinson’s Awareness Month.

Great work Team PatientsLikeMe!

It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (“PokieToo”) giving her real-world experience of living with condition.

WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo.  A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.”   “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.

DID YOU ALSO KNOW…

• More than 1,500 of our patient members are 50-yrs old or older
• 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
• Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.

How are our members treating their condition?

• Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
• The top lifestyle modification reported by our patients is physical exercise;  and walking is the #1 exercise cited.
• The most widely used prescription drugs reported by members are Carbidopa-Levodopa (Sinemet), Pramipexole (Mirapex) and Rasagiline (Azilect)
• Top 3 supplements: CoQ10 Coenzyme Q10, Multivitamins and Omega 3 Fish Oil

What are their major symptoms?

• For more than 1,300 patient members, a “tremor” was their first symptom of the condition.
• The 5 most common primary symptoms reported include: Stiffness/Spasticity, Slowness, Fatigue, Excessive daytime sleepiness (somnolence) and Insomnia.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!

The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.

Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team.  (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out  for 2009 highlights).

Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!

Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70′s and 80′s. However, about 10% of patients buck this trend and experience their first symptoms before the age of 40; these patients are known as Young-Onset PD or YOPD for short. The R&D team here at PatientsLikeMe recently carried out a research study examining an aspect of PD that has only recently gained much attention, “non-motor symptoms.” When a clinician diagnoses PD, they are usually looking for a triad of cardinal features, specifically tremor, slowness, and stiffness. However, in the past 5-10 years it has been increasingly clear that patients with PD also experience a number of non-motor symptoms, ranging from dizziness to constipation, from a loss of sense of smell to hallucinations, and from apathy to urinary problems.

Several of our members had mentioned in forum postings that they were finding non-motor symptoms, such as cognitive confusion and fatigue, to be a particular burden, so we decided to carry out a research study using the well-validated Non-Motor Symptoms Questionnaire (NMS-Quest) developed by Professor Ray Chaudhuri and colleagues. We sent the survey out to all of our PD patients earlier this year. In total, we got responses from 307 patients, including 260 “classic” PD patients and 46 with YOPD. The results show a higher number of non motor symptoms among YOPD patients (14/30) than PD patients (11/30). That’s an average of three more non-motor symptoms for YOPD patients than their older counterparts. More specifically, YOPD patients (at the individual level) report apathy, concentration problems, falls, pains, and sadness more often than older onset PD patients.

You can listen to a short presentation, or read our full report for a more detailed analysis of our methodology and findings, but there were several points I found particularly interesting.

• It’s unusual enough to have YOPD, which can be an isolating and confusing experience. For YOPD patients to experience even more non-motor symptoms than patients with more typical PD seems alarming, and requires urgent attention from clinicians, researchers, and patient advocacy groups to ensure their needs are being met.

• This sentiment is echoed in some of the patient interviews we conducted with members earlier this year. Click here to view the first in a series of interviews to be posted on our YouTube page, and hear for yourself what YOPD patients had to say when we asked what people should know about PD. (More videos to come on our YouTube and Facebook pages, so stay tuned!)

• YOPD patients are more likely to still be working, to be supporting families, and to be looking after young children or parents. Therefore, even minor changes in cognitive function or mood could have a substantial impact on their ability to function.

• Because YOPD patients are relatively rare and spread out, researchers aren’t often able to gather sufficiently large samples to study them in detail. A research platform like PatientsLikeMe provides an ideal opportunity to collect high quality data in an efficient way.

PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week.

The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them.

As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of my favorite things to watch is when our members meet each other in real life. As they did at the Unity Walk, many PatientsLikeMe Parkinson’s members wore “badges” with their usernames and pictures to help identify each other as they met their online friends face-to-face for the first time. These relationships blossom very quickly because they are rooted by their shared experiences, and that is a wonderful thing to watch.