Did you know that four to six million people have Parkinson’s disease (PD) worldwide? And that 50,000-60,000 new cases of PD are diagnosed each year in the US?[1] April is Parkinson’s Awareness Month and there are more ways than ever for you to “Join the Fight” against this neurodegenerative brain disorder.

The Parkinson’s Disease Foundation has created an awesome toolkit called “30 Ways to Raise Awareness of Parkinson’s.” You’ll discover ways to reach out to your local media, find tips and tricks for fundraising, and learn how to get your public official to join in the fight. You can download the toolkit for free and start spreading the word today.

We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time.  Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.

But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.

In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)

One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.

Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!

p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative.  Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

• Using attractive scarves or hats to cover thinning hair or bald spots
• Experimenting with different cosmetics to see what works best
• Treating yourself to a spa manicure and pedicure as a pick-me-up
• Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
• Soaking in a scented Epsom salt bath to ease pain and relax
• Consulting with a hair stylist about better styles for thinning hair
• Using gentle, non-drying facial cleansers and lotions
• Switching to an electric razor to improve ease and safety
• Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.

Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions.

You’ll hear us talk more than ever this year about living better, together. What does that mean to you? As we kick off 2013, just know this…what inspires us most to live better, together is YOU.

From everyone at PatientsLikeMe, Happy New Year!

Can you be friends with someone you’ve never met in person?

The members of our online health community – now 170,000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.

As evidence, here is a touching poem written by a newer PatientsLikeMe member.  Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”

Dedicated to Internet Friends

It’s strange to have a friend

that you have never hugged,

lightly touched their arm,

or looked into their eyes.

But you have touched their soul

felt their heart

been embraced by their warmth of being.

A friend unseen is not a friend untouched.

The eyes of the soul will gaze,

the heart will embrace

the image will stand tall

but only in a dream.

Want to connect with those who can truly relate?  No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.

• Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
• Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
• Have you worried that becoming someone who receives help is going to change your lifelong identity?

If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem.

So what do you do when you are suddenly the person being helped instead of the helper?  It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult.  It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.”  If you can manage the task yourself, speak up and say so politely, advises one patient.  Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member.  Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.

Can you relate to this common hurdle?  Join this insightful discussion in our forum or share your thoughts in the comments section.

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression

CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice. The two TED Fellows, whose collaboration was recently highlighted on CNN’s “The Next List with Dr. Sanjay Gupta,” are calling on PatientsLikeMe members to record their voices and update their own health profiles to keep track of their disease status.

PatientsLikeMe and PVI have joined forces to further validate Dr. Little’s discovery that the voice can be used as a biomarker for disease progression. Dr. Wicks says, “If Max’s work proves out, this could mean that the cell phones we all carry may be the key to the best biomarker for Parkinson’s disease. The project could also lead the way in lowering the cost and accelerating the discovery of the next generation of treatments. It’s an honor to collaborate with Max and our patients on such transformative work.”

PD is a progressive disorder of the nervous system affecting 6.3 million people worldwide. In a recent TED talk, Dr. Little explains it’s expensive and time consuming to detect the disease early on, and nearly impossible to objectively measure the disease’s progression outside of clinical trials. Through a simple phone call, Dr. Little is testing if the tremors in a voice can be used to diagnose, measure and even assess the effectiveness of PD treatments.

Dr. Little adds, “Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.”

PVI has combined a digital microphone, precise voice analysis software and the latest advances in machine learning to create an unconventional method for automatically screening and monitoring PD. To learn more about the PVI and PatientsLikeMe, visit www.patientslikeme.com/join/pvi.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve 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. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.

It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness.  In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we would share some of our members’ uplifting sentiments.

From our Fibromyalgia Community, some of the unexpected benefits include:

• Getting to spend more time with children or grandchildren
• Taking advantage of “good days” with a little extra gusto
• Appreciating what you have…and knowing it could be worse
• Refocusing on new hobbies like gardening and meditation

From our Multiple Sclerosis (MS) Community, some of the unexpected benefits include:

• Letting go of the pressurized feeling that you have to do it all
• A deeper understanding of how many people face major challenges
• Discovering new artistic talents, such as painting or needle work
• Slowing down the pace of life and prioritizing sleep – without guilt

From our Epilepsy Community, some of the unexpected benefits include:

• Learning to never judge a person by only what you see
• Becoming more patient and not taking anything for granted
• Filtering out fair-weather friends and uncaring partners
• Having extra motivation to live the healthiest lifestyle possible

What about you?  Have you noticed some positive takeaways from your illness?  Share them in our comments section in honor of Thanksgiving.  And, from everyone at PatientsLikeMe, we wish you and your loved ones a wonderful holiday!

We are thrilled to announce that PatientsLikeMe Research & Development Director Dr. Paul Wicks, PhD, has been named a TED2013 Fellow.  He is one of 20 individuals to be selected from more than 1,200 candidates to attend the TED2013 conference in Long Beach, California, participate in a preconference bootcamp and receive mentoring from the TED community.

If you’re not familiar with it, TED is a nonprofit devoted to Ideas Worth Spreading.  It started out as a conference designed to bring together people from Technology, Entertainment and Design (T-E-D) and has since evolved into a global movement for sharing big ideas.  In addition to annual conferences in the US and UK (TEDGlobal), which bring together movers and shakers for inspiring talks of 18 minutes or less, TED sponsors local events (TEDx) and shares many of its videotaped talks via TEDTalks and TEDxTalks. (Among them: a 2009 talk by PatientsLikeMe Co-Founder Jamie Heywood, a 2010 talk by Paul Wicks and a 2011 talk by PatientsLikeMe Co-Founder Ben Heywood.)

The theme for the TED2013 conference is “The Young. The Wise.  The Undiscovered.”  Accordingly, this year’s class of TED Fellows represents “young innovators from around the globe, all with insightful, bold ideas that have the potential to influence our world.”  Paul is a perfect fit for this mission, having already been named one of the best young innovators under the age of 35 by MIT’s Technology Review as well as their “Humanitarian of the Year” in 2011.  We know he won’t stay “undiscovered” for long!

A big thanks goes to TEDGlobal 2012 Fellow Max Little, who nominated Paul for this prestigious opportunity.  An applied mathematician who is currently a Postdoctoral Research Fellow at MIT, Max is working on a breakthrough technique to monitor – and potentially screen for – Parkinson’s disease through simple voice recordings.  Learn more about Max’s ingenious idea in his June 2012 TEDTalk below and stay tuned for more coverage of this trailblazing researcher in the coming weeks.

Here are some of the media items that grabbed our attention recently.

Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.

Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).

Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health?  A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.

Coming Next:  Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.

Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.

Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.

PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy.  “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says.

In fact, her condition has given her a new purpose:  entertaining other “Parkies” with her deep reservoir of funny stories.  She began a blog called Parkinson’s Humor, and most recently, she’s collected the tales from her blog into a book, Parkinson’s Humor:  Funny Stories about My Life with Parkinson’s (available in paperback and Kindle editions).  Find out what she’s gotten out of sharing her sense of humor in our interview.

1. Tell us about the role that humor plays in your life – and why it’s so important.

Humor has always been a part of my life. Both of my parents had good senses of humor; they needed it with five accident-prone kids. I had a lot of tragedy in my life when I was young – my first husband died in a car crash when I was 23 and my mother died of lung cancer 15 months later. She used to joke about her bald head (from chemo) and pretty much kept on laughing right up until the day she died.

My wonderful husband and I used to do comedy shows tailored for seniors. We traveled the country in a RV and did shows from Florida to Washington. I used to come out dressed as Dolly Parton and then I did a standup routine as Daisy Jane (Minnie Pearl’s niece). It was a lot of fun and we both enjoyed making people laugh.

When my mystery illness curtailed our travels, we performed closer to home. We stopped when I just couldn’t physically do it anymore. After diagnosis, I performed various skits at the RV Resort where we lived at the time. Whenever they needed some “entertainment” they’d just call me. I now live in a house and when I found a Parkinson’s chat room early one morning, and people who needed cheering up, I started sharing my funny stories with them and that’s how Parkinson’s Humor, the blog and book, began. I have seen what laughter can do for people, and I know that laughing helps me as well.

2.  You’ve tallied 59,000+ blog visitors to date. What have you gained from sharing and connecting with other PD patients online?

More than you can imagine. I am still not quite sure how it happened, how people from countries I have never even heard of found my blog, but the feedback I get inspires me to keep writing. My wonderful husband says, “Parkinson’s didn’t take anything away from you, it gave you a new life.” And he’s right. I have learned so many things from the people I connect with online and in turn, have shared right back.

I feel like I have a whole new family of brothers, sisters, aunts, uncles and grandparents as well as a dozen or so new parents, LOL. I have one close online friend who ends every reply with “Love, Mom.” She had a daughter who was born the same year as I was, but died as a toddler and she thinks that her daughter would have looked just like me.

3. What led you to turn your funny stories into a book?

I made the blog stories into a book for just one reason: for people who are not computer literate. I had so many people say, “I printed out one of your stories for my Dad (Grandma, Aunt, Neighbor), who has Parkinson’s. He doesn’t do computers. Will it ever be a book?”

So, I spent most of this summer making it into book form. Sales have been pretty good considering I self-published and did all the marketing myself. I donated the first profit check of $250 to my local PD support group earlier this month. I hope to get a major sponsor soon, so I can send a book to every support group in the country for their library. I will not keep any money from the book for myself; it will all be donated to Parkinson’s. I hope to have huge sales for Christmas (fingers crossed).

4.  You had Deep Brain Stimulation (DBS) surgery on October 18th. What was that like, and how are you feeling?

The first part of the surgery went very well and I am feeling very good. Tomorrow is the second part and I am told that the recovery will be longer and more painful, but I hope to feel well enough to go to a Halloween Party Saturday night. I’ve got my costume all ready (complete with antennae, LOL). There is a blog post detailing the entire surgery on the www.ParkinsonsHumor.com website right now.

Do you have a creative outlet that helps you cope with your health condition?  Here are two examples of Parkinson’s disease (PD) patients in our community who are expressing their emotions through painting, despite hand tremors and other challenging symptoms.  (See even more PD patient artwork in this inspiring forum thread.)

“Iggy the Iguana” by PD member mezzomom

“Autumn Still Life with Mouse” by PD member J. Marley

If you’re a PD patient with an artistic bent, we encourage you to share your work with our community.  You may also want to participate in the Parkinson’s Disease Foundation’s Creativity and Parkinson’s Project, which “exists to explore, support and encourage the therapeutic value of creativity in Parkinson’s.”  Paintings, drawings, photographs, songs, crafts and more are displayed in the project’s Gallery of Artwork, and a wall calendar is created each year featuring the work of 13 selected artists.

Notice of Copyright: The works of art featured in this post are displayed with the written consent of the artist and/or current owner. These parties retain exclusive rights of reproduction and distribution. Any unauthorized reproduction or download of content in any form is a violation of the artist’s copyright and is prohibited.

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as a company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”

Watch the Bloomberg TV profile below:

Visit our Press page for other recent PatientsLikeMe media highlights.