Last weekend, we headed to New York City in great anticipation of the 2010 Parkinson’s Unity Walk held each year in Central Park. We were excited once again to meet members of Team PatientsLikeMe, a group of patients who travel from across the country to meet one another and work tirelessly to raise money each year for the walk. Team PatientsLikeMe raised $13,000 and came in as #13 of the Top 25 fundraising teams for the 2010 Unity Walk.
This year, some of the team members were reuniting at the walk after meeting at previous Unity Walks; others were meeting for the very first time. The experience was inspiring and energizing. What we were able to see first-hand is how consistently and plentifully patients share – both online and off. In addition to sharing their health data and lives on PatientsLikeMe, we see how they also share their families, their stories, their dreams of a Parkinson’s-free future, and, at this unforgettable day in Central Park, their unwavering commitment to helping patients just like them. Representative of the thousands of patients in our communities, members of Team PatientsLikeMe are full of hope and inspiration and plenty of energy. We chased any person sporting a blue PatientsLikeMeInMotion t-shirt up and down “Find a Cure Boulevard” as they met other patients, registered at information booths, and took in the scene. It wasn’t always easy to keep up!
We finally pulled the team together (with the help of Team Captain, Pokietoo) as they posed for a team photo for the Unity Walk staff. As we do each year, we took the opportunity to get some pictures and video of the team sharing their thoughts about living with Parkinson’s and their experiences on PatientsLikeMe. Here’s a glimpse of a short video with Pokietoo telling us about the power of the patient voice. Be sure to also check out this video of members of Team PatientsLikeMe sharing their thoughts about living with Parkinson’s disease.
Thanks to Team PatientsLikeMe for opening your hearts, your arms and your lives for us once again this year. Thanks to our partners at the Unity Walk for creating such an amazing event for patients and research. And thanks to all of you who share every day in our communities. You truly inspire us.
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.
* * *
(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 24th 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.
At PatientsLikeMe, thousands of patients are uniting online to share health data, find patients like them, and to learn from one another. Since this is Parkinson’s Awareness Month, we wanted to highlight an off-line event that also represents unity – aptly named the Unity Walk. The annual event, which takes place next weekend in New York City, brings together more than 10,000 Parkinson’s patients and their families to educate the community and celebrate the great strides made in funding Parkinson’s research.
As in the past, our very own group of patients will be walking at the 16th Annual Unity Walk in Central Park. Led by pokie too, the 30+ person Team PatientsLikeMe will be gathering in New York to meet one another and to raise money and awareness for Parkinson’s research. As part of the PatientsLikeMeInMotion program, we are happy to once again sponsor this year’s team.
Can’t get to New York for the Unity Walk? No sweat. Tune in to see PatientsLikeMe via webcast starting at 2:30pm on April 24th. Let’s keep spreading the word about Parkinson’s and wish good luck to our very own Team PatientsLikeMe.
Just on the heels of MS Awareness Month, here’s one more interview with one of PatientsLikeMe’s nonprofit partners. For this interview, Molly Cotter, who handles Nonprofit Partnership Development at PatientsLikeMe, sits down with National MS Society of Greater New England’s Development Director Todd Krohne to discuss exciting things happening with his chapter, including their new “We Keep Moving” campaign. The NMSS of Greater New England is helping spread the word about our site and the PatientsLikeMeInMotionTM program and we are happy to report that six of our 3-star patient members (to date) will have teams sponsored by PatientsLikeMe at MS Walks in the New England region this Spring.
(Molly) During MS Awareness Week last month, NMSS launched its “We Keep Moving” campaign to “catapult our movement toward a world free of MS.” What’s that campaign all about and why is it important for patients?
(Todd) Living with multiple sclerosis is a challenge, no matter where you are. Imagine what it’s like living with MS in an urban high rise — or in rural America where the closest MS specialist is 250 miles away, by bus. “We Keep Moving” is a website that will chronicle a ten week journey across the country. Unique stories and perspectives — challenges, triumphs and everything in between — will be shared. Submit your story and share in the journey as we learn about how people keep their lives moving forward. Go to www.wekeepmoving.org. This initiative is supported in part by Novartis Pharmaceuticals Corporation.
Greater New England Chapter member, Anna from Shrewsbury, is a finalist this week in the “We Keep Moving” video contest, and she needs your vote to have her story produced on video! Read more about her story and vote for Anna here.
(Molly) In 2008, PatientsLikeMe sponsored the MS Challenge Walk in Cape Cod, MA. What a great event! This year, the NMSS of Greater New England has helped us spread the word about PatientsLikeMe and our pilot PatientsLikeMeInMotionTM program. What excites you most about this new program?
(Todd) PatientsLikeMeInMotionTM is a fantastic way to motivate people to take action and to generate resources, both financial and human, to fund research into prevention, treatment, and cure of diseases like multiple sclerosis, and to help people whose disease has hurt them financially. Throughout history, the fight against disease has been fueled by individuals raising money for basic science research to unlock the mysteries of a disease and produce clues for curing it. PatientsLikeMeInMotionTM is another channel to communicate with people and help them understand that if they don’t take action to move forward, no one else will.
(Molly) As we wrap up MS Awareness Month, any exciting things happening at NMSS of Greater New England for patients – e.g., research, events, online campaigns?
(Todd) We’re very excited to announce that as of March 1, 2010, Maine, Massachusetts, New Hampshire, and Vermont joined forces to become the ‘Greater New England Chapter’, serving a combined total of 19,000 individuals and families affected by multiple sclerosis.By consolidating administrative functions and by combining the talents of our Boards of Trustees, staff, and volunteers, we can streamline operations, increase fundraising effectiveness, and expand programs, services, and advocacy for those affected by MS.Of course, Walk MS and Bike MS and the MS Challenge Walk are very exciting ways to join the movement to create a world free of multiple sclerosis. These fundraising events are just as rewarding to the individuals who participate in them as they are to people with MS who benefit from the MS education, support, advocacy, services, and research that the fundraising pays for, and sometimes they are the same people!!
For a complete listing of current programming and fundraising activities, visit www.MSnewengland.org.
What better way to kick-off 2010 Parkinson’s Awareness Month than to bring you “the patient voice.” At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview patients each month in our newsletter to find out more about how they approach life. We recently featured englishtutor, a three-star member who shared her tips for staying motivated and thoughts about her Parkinson’s disease. Here’s what she had to say…
* * *
(Amy) What keeps you motivated?
(EnglishTutor) I wish I could say that I am highly motivated and I get on with my day with great interest and gusto, but as we all know, getting into that “Oh,-boy,-I-can’t-wait-to…” zone is not always easy.But to be candid, I am determined to look and feel as good as I can for as long as I can, so I am eager to do those activities (walking, weight training, stretching, dancing) that are so helpful in relieving PD discomfort. I am grateful for the people in my exercise class at the gym who are congenial, funny, supportive, and nice, and we spend our class time together grunting, gossiping, griping, and guffawing. Having fun is truly motivating.I have nine step-grandkids who think I’m pretty cool – and I want them to go on thinking that. So I continue to see the humor wherever I can (which always makes me feel better), keep as up to date as possible with what the grandkids are into (we are all Facebook connected and I can text message on my iPhone with one finger as fast as they can with two thumbs), and continue to dress well and wear makeup even when I’m at the computer all day. (Putting on eye shadow and mascara is a bit of a risk, but I persist.)
My students (see question 3 below) also keep me motivated. Their successes are mine as well, and as every teacher knows, there are few experiences as heady as the moment you realize that a student finally “gets it!”
(Amy) Who do you admire and why?
(EnglishTutor) I admire people who – by sharing their time, wealth, knowledge, experience, and/or expertise – make a genuine and sustained effort to improve the lives of others. Bill and Melinda Gates are at the top of my list.
(Amy) How has your condition affected your work life?
(EnglishTutor) Parkinson’s hasn’t stopped me from my writing and editing work or my teaching. While I can’t really handwrite any more, I can type comfortably enough using an ergonomically designed keyboard, although I’m down from 120 wpm (no errors) to about 70 wpm (with lots of errors). The good news is that using a keyboard gives my stiff fingers a good workout, so at the end of a writing session, they feel fine! I edit PDF documents easily with Adobe Reader.I am an ESL publishing consultant, and because traveling to an office is no longer an option, I attend meetings with clients electronically through face-to-face video chats. I am also teaching English online using Skype and iChat. I have students worldwide, and I still feel very connected. (Thank you, Steve Jobs!)I am the expert in a Literacy Volunteers of America “Ask the Expert” forum for my county. Again, this is all done through the Internet. And in my spare time (what’s that?), I’m writing my memoirs, which my husband’s printing company will publish (or else!).
(Amy) What’s your favorite aspect of PatientsLikeMe?
(EnglishTutor) There are many “favorite aspects,” but the most salient one for me, epitomized by the apt name of this group, is the comforting knowledge that each time I log on, I will meet people who truly know what it feels like to wake up in the morning, struggle out of bed, slowly straighten up, stretch, pause for balance, and take that first step. Somehow just sharing knowledge and experiences with people at all stages of PD tends to lessen the severity of this disease for me and, I hope, for them.
(Amy) Thank you so much for sharing, EnglishTutor!
The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare. You may have heard about our executives at industry conferences, government hearings, or even on TV. Highlights below.
Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences.
Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis
Listen | David S. Williams III (Chief Marketing Officer) shares industry best practices in using social media for clinical trial recruitment (recently presented at the CHI SCOPE conference)
Listen | Paul Wicks Ph.D. (R&D Director) discusses nexus of personalized medicine and information technology (highlights from his presentation given at a Personalized Conference event by ASU, Mayo Clinic, AAAS, FDLI)
Listen | Jamie Heywood (Co-founder, Chairman) visits “on call” to talk about the impact of real-world experience on drug safety
Listen| Sally Okun RN (Health Data Integrity Manager) gives her perspective on improving patient engagement and fostering patient-provider partnerships through tools like the Doctor Visit Sheet (highlights from her presentation at the Patient E-Centered Health event by The Stevens Institute of Technology)
Watch | Maureen Oakes (Product Manager) shows you cool new website functionalities making their debut with the new transplants community
Watch | Paul Wicks Ph.D. (R&D Director) talks about the value of patients measuring quality of life through online patient-reported outcome