The Patient Voice: Garth shares his cancer story for 24 Days of Giving

Posted December 12th, 2014 by

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.

“In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.”

Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference.

Share this post on Twitter and help spread data for good. And don’t forget to check out previous data for good member videos.


PatientsLikeMe and the Schwartz Center join forces to better understand patients’ perceptions of compassionate care

Posted December 9th, 2014 by

                            

Collaborators Commit to Sharing Information and Educating Patients

CAMBRIDGE, Mass.—December 9, 2014—PatientsLikeMe and the Schwartz Center for Compassionate Healthcare today announced that they will work together to better understand patients’ perceptions of compassionate care. The collaboration’s goal is to strengthen the relationship between patients and their healthcare providers, which has been associated with better health outcomes, lower costs and increased satisfaction.

Among their work together, the two organizations will survey PatientsLikeMe members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, which the Center hopes healthcare organizations will use to measure and reward the compassionate care doctors, nurses and other caregivers provide to patients and families. They will also jointly develop and distribute content to educate patients about compassionate care and what patients can do to elicit compassion from their caregivers.

“Our research shows that while patients believe compassionate care is critically important to successful medical treatment and can even make a life-or-death difference, only about half of patients believe the U.S. healthcare system is a compassionate one,” said Julie Rosen, executive director of the Schwartz Center. “As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

The Schwartz Center has been working on a multi-question scale that rates patients’ perceptions of the compassionate care they receive from clinicians and other caregivers. To further this work, the collaborators will elicit feedback from patients on how relevant this scale is to their experiences by utilizing the Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues.

“What the Schwartz Center is doing to better measure compassionate care is so inspiring,” said Michael Evers, executive vice president of marketing and patient advocacy at PatientsLikeMe. “This is the type of work that ORE is uniquely positioned to support, and this topic is definitely one about which people using our site will have great perspective.”

Added Rosen, “Our goal is to make compassionate care a healthcare priority and a public expectation. Ultimately, we would like to be able to correlate the compassionate care patients receive with the health outcomes they experience. This is the first step in getting us there.”

About the Schwartz Center for Compassionate Care
The Schwartz Center for Compassionate Healthcare is a patient-founded nonprofit dedicated to nurturing patient and caregiver relationships to strengthen the human connection at the heart of healthcare. Research shows that when caregivers are compassionate, patients do better and are more satisfied, and caregivers find greater meaning in their work and experience less stress and burnout. The Center believes that a strong patient-caregiver relationship characterized by effective communication and emotional support, mutual trust and respect, and the involvement of patients and families in healthcare decisions is fundamental to high-quality healthcare. Visit us at www.theschwartzcenter.org or follow us on Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe® is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contacts
Amanda Dalia
adalia@theschwartzcenter.org
617-724-6763

Margot Carlson Delogne
mcdelogne@patientslikeme.com
781-492-1039


Seeing [MS]: The invisible symptoms – dizziness

Posted December 8th, 2014 by

Lyn Petruccelli is living with multiple sclerosis, and she fights random waves of vertigo and dizziness that can strike her at any moment. Sometimes, the feelings are so strong, she can’t even get out of bed. As Lyn says, “I can’t see it coming, and that makes it hard to fight.”1

 

You are now seeing dizziness

Photographed by Louis Petruccelli
Inspired by Lyn Petruccelli’s invisible symptoms

Lyn’s husband Louis is an accomplished photographer, and they worked together to visually portray what it’s like to live with the possibility of dizziness every day. Their photograph is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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1 http://www.seeingms.com.au/ms-stories


Finding others with PTSD

Posted December 5th, 2014 by

Sometimes it’s nice not having to explain yourself to people who don’t really understand what it’s like for you, and to surround yourself with people who just get it. As the PatientsLikeMe post traumatic stress disorder community grows, we’ve heard from our members who are veterans about how important it is for them to connect to other vets.

Here’s a conversation with our Product Manager and former Marine, Sean Horgan and community member, David Jurado (Jrock121). They shared about their struggles returning home after war, and how they missed their rooftop cigar time with the boys.

David shared some personal details about his journey living with PTSD: after self medicating with Jack Daniels and oxycontin, David found help and peace of mind, connecting with other Veterans, communing with mother nature, and stepping up as a role model for others. He now teaches people you can “replace bad memories with good memories” by working through your bucket list.

The beginning of his transformation started with this cute pup, Willett. Named after a service buddy who died in combat, Willett helped David get out of the house and re-engage with society. David is now Executive Director of Companions for Heroes, a company that places shelter dogs with vets living with PTSD.

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Throwing it back this Thursday for Crohn’s and Colitis awareness week

Posted December 4th, 2014 by

We’re throwing it back this Thursday, but to help raise awareness for something that’s happening right now: National Crohn’s and Colitis Awareness Week (Dec. 1st to 7th). For this #TBT, our very own Maria Lowe shares about her experiences with Crohn’s disease. Maria is part of the PatientsLikeMe Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

This week, it’s all about raising awareness for everyone living with IBD. You can learn how to help on the Crohn’s and Colitis Foundation of America’s (CCFA) website, and be sure to share your support on social media via the #CCFAawarenessweek hashtag. And if you’ve been recently diagnosed with either Crohn’s or UC, reach out to others like you on PatientsLikeMe.

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PatientsLikeMe and USF Health collaborate to empower cancer patients

Posted December 4th, 2014 by

Partnership Marks the First Between the Patient Network and an Academic Health Center

CAMBRIDGE, Mass.—December 4, 2014—PatientsLikeMe and the USF Health Internal Medicine Department have partnered to improve health outcomes for multiple myeloma patients. People living with multiple myeloma and other cancers will be directed to PatientsLikeMe to access patient-reported symptom and treatment information and connect with others to guide their treatment discussions and decisions.

The partnership is PatientsLikeMe’s first with an academic health center. The companies will exchange and publish information on multiple myeloma on their websites and work collaboratively with PatientsLikeMe members to continuously enhance the health and education of people living with the condition. The organizations also expect to collaborate on specific research initiatives in the future.

USF Health, an integral part of the University of South Florida (USF), is a partnership between USF’s health-related colleges and schools and the USF Physician’s Group. “It is an honor as a cancer physician and scientist to become part of a larger community of patients with multiple myeloma,” said Damian Laber MD, Hematology/Oncology division chief at USF and senior member at Moffitt Cancer Center. “This partnership enables patients and their families worldwide to receive the most relevant and current medical information, and will enable us to learn as much as possible from patients so that we not only support them, but improve outcomes for others.”

The agreement is the newest in a series of oncology-focused partnerships for PatientsLikeMe designed to ensure that the patient voice guides cancer research, said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Every day, thousands of people learn they have cancer. More and more of them are joining our site to not only get information and support, but to contribute their health data for research. We’re excited to help USF Health members improve their day-to-day lives, and to partner with such a distinguished research and educational institution so that we can have an impact on people’s lives longer term.”

USF Health members interested in joining PatientsLikeMe can sign up at www.patientslikeme.com/join/usf.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

About USF Health
USF Health’s mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. The University of South Florida is a Top 50 research university in total research expenditures among both public and private institutions nationwide, according to the National Science Foundation. For more information, visit www.health.usf.edu.

Contacts
Kristy Andre, USF Health Department of Internal Medicine
kandre@health.usf.edu
813-300-9006

Margot Carlson Delogne, PatientsLikeMe
mcdelogne@patientslikeme.com
781-492-1039


Join Garth Callaghan for 24 Days of Giving health data for good

Posted December 2nd, 2014 by

Today’s the day we start to re-think what it means to give back, and we want you to come along with us. We’re kicking off 24 Days of Giving – a new campaign that’s all about the health data PatientsLikeMe members selflessly donate and how we can say thank you.

Today is also known as Giving Tuesday – a day that celebrates generosity. We’re hoping that after you celebrate by giving a donation of time or money to your favorite non-profit, you’ll consider coming back to PatientsLikeMe to donate your data. For every piece of health data you share on PatientsLikeMe over the next 24 days, we’re going to donate up to $20,000 to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Not a PatientsLikeMe member yet? Join the community and start donating your data for good. Already a member? Head to your 3-stars page to make an update and data donation.

Leading the charge- Garth Callaghan (@NapkinNotesDad)

Some of you might know Garth as the Napkin Notes Dad. He’s been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. But he doesn’t dwell on that. Garth takes each day as a gift and has fulfilled a promise he made to write 826 napkin notes. Emma will have one waiting for her in every lunch until the day she graduates.

Garth’s personal legacy is his words, and on PatientsLikeMe, his medical legacy is his data. He’s sharing his experiences in the hopes that others can learn from his journey and help fight their own battles better.

“It certainly doesn’t help me to keep my symptoms or my side-effects secret. I feel that I owe other patients my experience. If I donate my data, if I share with an organization that can put it together and see a pattern … I’m helping all of the patients.”

We’ll keep everyone updated on the 24 Days of Giving drive, so keep an eye on our
PatientsLikeMe Twitter and Facebook. Want to share about the data you’ve donated with others on social? Use the hashtag, #24DaysofGiving.

Share this post on Twitter and help spread the word.


Food for thought: Diabetes awareness edition

Posted November 26th, 2014 by

It’s American Diabetes Awareness Month, and the American Diabetes Association’s (ADA) theme for November is “America Gets Cooking to Stop Diabetes.” And in that spirit, we’re highlighting the diabetes community on PatientsLikeMe. Members have been sharing about pasta, low-carb diets and ideas for daily menus. Plus, one member graciously shared her personal recipes for some of her favorite dishes – read them in the infographics below.

What’s the diabetes community sharing about?

Usually a meal of pasta and meat sauce in moderation a couple of times a month sopped up with toasted sourdough garlic bread (1 good slice) is usually enough to satisfy one’s pasta cravings. Provided you tow the line on everything else you eat you should recover from a pasta meal within 3 hours of eating it!
-Diabetic neuropathy member

I eat no starches. That is, no bread, no chips, no rice, no pizza, no potatoes, no tortillas. I severely restrict the amount of root vegetables I eat. Occasionally, I’ll have a little bit of beans. I eat very little fruit, maybe a slice or two of tomato on a burger or an occasional strawberry.
-Diabetes type 2 member

Instead of scrambled eggs, I make tofu scramble with veggies almost every weekend. Instead of store-bought cookies, I make my own gluten-free vegan version that not a single picky eater has been able to tell the difference. Instead of regular, white, flour scones, I make vegan teff-based scones with mixed berries.
Diabetes type 1 member

 

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And don’t forget to check out our other Food for Thought posts if you missed them.


Seeing [MS]: The invisible symptoms – spasticity

Posted November 24th, 2014 by

Australian comedian and public speaker Tim Ferguson said it the best – “Seeing [MS] is all about helping everybody, in society, right across the world, get their heads around this mysterious and sometimes scary condition.” He’s living with multiple sclerosis (MS), and he spoke about his spasticity in the video below.

 

You are now seeing spasticity

Photographed by Matt Hoyle
Inspired by Tim Ferguson’s invisible symptoms

He worked with photographer Matt Hoyle to visualize his spasticity as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign. It’s all about shining a light on the invisible symptoms of MS and raising awareness for the neurological condition – check out the previous pictures and stay tuned for more Seeing [MS] posts.

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Shining a light on lung cancer

Posted November 21st, 2014 by

Back in 1995, a few organizations came together to recognize Lung Cancer Awareness Day – there were a few awareness activities and some scattered fundraisers. Fast forward to now. Almost 20 years later, over 125 different lung cancer events are spread across three continents during the month of November. This is Lung Cancer Awareness Month, and the Lung Cancer Alliance (LCA) wants you and everyone you know to help shine a light on this pulmonary condition.

Here is some information you might not know, and can tell others about lung cancer:

  • In 2014, over 220,000 new people will be diagnosed with lung cancer1
  • Lung cancer is the most common cancer among both men and women
  • Lung cancer is the leading cause of death among every ethnic group, and the second leading cause of death in the U.S.2
  • Almost 80% of those diagnosed are former or non-smokers

We got a jump-start here at PatientsLikeMe. Right on November 1st, some on the team joined in the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk. They’re a new partner of ours, and together, we’ll be collaborating to increase the number of lung cancer members on the site so that more patient-reported information can potentially guide research on the condition. Check out what else our partners at LUNGevity are doing to raise awareness.

How can you help shine your own spotlight on lung cancer this November?

If you’re living with lung cancer, shining a spotlight might mean giving that extra support to someone who’s going through a similar journey. Vickie just shared her story on the blog, and there are more than 1,000 lung cancer members on PatientsLikeMe. Every day, they are giving support and finding answers from others who understand what it’s like to live with lung cancer. Join in.

Share this post on Twitter and help spread the word for lung cancer.


1 http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-key-statistics

2http://www.lungcanceralliance.org/assets/docs/media/LCA%20Funding%20Fact%20Sheet%202011%20Final.pdf


“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Posted November 20th, 2014 by

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below.

The journey
Occasionally I received cards in the mail offering discount lung or heart screenings. I think most people do now and then. I always throw them in the trash. In May 2012, I received one. For some reason I didn’t throw that one away. I called and scheduled an appointment for the heart and lung scan. Was told I’d get a letter in two weeks letting me know the results.

Imagine my surprise when 4 days later I received a voice mail asking me to call the hospital back as soon as possible. With feelings of dread and fear, I returned the call. Was told they were concerned about 2 places in my left lung. Was cautioned to not jump to any conclusions. They could be any number of things. I needed to have testing done. Was scheduled for MRI and PET Scan. Those results were enough to call for a biopsy.

Had the needle biopsy. My lung collapsed immediately. Very scary. Spent 1 night in the hospital. Sent home with instructions. Two days later began having problems breathing. Drove myself back to hospital and found out lung had collapsed again. This time was hospitalized 4 days.

While I was on a gurney in the ER, a pulmonologist from the hospital cancer center (didn’t know he came from cancer center at the time) came to see me. He asked me if I had been told the results of the biopsy. I told him no. He told me it was positive for cancer. Told me not to worry about it, they were going to take care of me. I remember lying there and I just nodded my head. I thought about it for about a minute then blocked it out.

The hope was to do surgery while I was in the hospital for the second lung collapse. The surgery, a lobectomy and wedge resection, would remove my upper left lobe and a portion of my lower lobe. Unfortunately the original scans showed calcium build up in an area of my heart. It was decided I needed to have the heart issue taken care of before the cancer surgery.

Had a heart stent put in. Had to be on a blood thinner for at least two months to make sure blood clots didn’t form on the stent. I then had to be off the blood thinner for a period of time. I have been seeing my oncologist every three months. Get CT scans every six months. Also see pulmonologist every three months.

The surgery
It was three months between time of diagnosis and my surgery. Seemed much longer. I was very worried the cancer would spread. When the time came for me to stop the blood thinner and no call came from doctor I was on edge. I felt they were forgetting about me. I made a call now and then to the lung cancer nurse navigator to remind them about me. I wasn’t that way all the time but I did have extreme anxiety at times. Earlier my family doctor had offered me something to help with my anxiety. I turned it down. Eventually my anxiety did reach a point where I did tell my PCP I needed some help.

Finally, the day of my surgery arrived. September 24, 2012. My parents had driven in from Colorado. Took me to the hospital. Other family would be joining them. At about 0730, the preparation began. I had no idea what kind of a journey was coming my way. I woke up October 8, 2012.

Nothing had gone as planned. What I know of that time is what I have been told by family and what I have read from my medical records. I was on a vent. I was combative and had to be restrained. I tried to pull vent out several times. I had lost enough blood I became anemic. Three days after the surgery I suffered respiratory failure. I developed an infection.

After waking up, I was very confused. I had and still have memory problems. I had to work on my penmanship. Didn’t have enough hand control to write. That has since returned. Couldn’t speak above a whisper due to a paralyzed right vocal cord from the vent. ENT told me there was a good possibility it would never come back. Ended up spending 6 months in a nursing home undergoing speech, physical and respiratory therapy.

Surviving and sharing
I find PatientsLikeMe to be a source of comfort. It is nice to know I can share my feelings and thoughts with those who have been or are going through similar experiences. It makes me stop and think about how I am doing. It is helpful to look at where I have been and see where I am and think about where I am headed.

Diagnosed June 2012 with lung cancer. Diagnosed April 2013 with uterine cancer. At last week’s checkup with pulmonologist, was shown something on my most recent scan. November 19, 2014 will be having bronchoscopy.

It has not been an easy journey. But when all is said and done, I am still alive.

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“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

Posted November 19th, 2014 by

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below.

What went through your mind when you were diagnosed with RRMS back in 1994?

I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life.

It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community?

I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that is experienced in doing home safety and accessibility evaluations come work with you in your home to see what your abilities and limitations are so he or she can make proper recommendations. I advise that people not wait until modifications are absolutely necessary before making them. I’ve been guilty of that in many regards, including waiting too long to get a power wheelchair. I should have gotten one sooner. It would have expanded my ability to go places and do things.

We saw some pictures on your photoblog of you in physical therapy – is that a daily routine? How does it help you manage your symptoms?

I was getting in home PT 3 days a week for a few months after suffering a seizure that prevented me from driving for several months. The PT is of course not a cure for MS, but it does provide exercises and strength training options that can help you maintain some abilities. When you’re sitting in a wheelchair all day, I think you can lose some function not just from the MS, but also from being sedentary, so it’s important to exercise.

Can you tell us about your daily meal set-up? 

I have a pretty simple daily meal routine. I often eat the same things day after day. For breakfast I eat some yogurt, a multigrain type bar and a banana. That rarely changes. Lunch is almost always a sandwich (some kind of meat and cheese along with some mayo) and a piece of fruit, maybe an apple, pear or peach. Dinner varies a little. A friend who lives here with me often makes a pretty bountiful garden salad that includes lettuce, spinach, beets, carrots, broccoli, cauliflower and more. Sounds good huh! In addition I’ll eat something else like canned soup, a bowl of cereal, maybe a pre-made Indian dinner that I like. Almost all meals are eaten on my wheelchair tray.

Your photoblog takes viewers through a day in your life – what inspired you to give back to others and raise awareness for MS?

I’ve been a long time volunteer with both the National MS Society and the Myelin Repair Foundation. I had never really done much volunteer work prior to my MS diagnosis. After I stopped working full time I didn’t really do much of anything productive with my time. It was actually a girlfriend who suggested contacting the MS Society to see if they had volunteer work I could do. They did, and I caught the volunteerism bug. I would recommend it to anyone. I often say that doing volunteer work is as beneficial and rewarding to the volunteer as it hopefully is to the people you’re volunteering to help.

Not everyone is as open about their personal experiences living with MS as you. What was it like working with the photographer and putting yourself out there?

I guess I’m kind of an open guy. After meeting Ted (the photographer) I felt comfortable with him and trusted him. I decided pretty much right away that I was going to be all in on this project. I figured if you’re going to do something, do it right. We hoped to have an impact with the photo essay, and only being half in so to speak wouldn’t do the job. I didn’t really do anything other than let someone take pictures of me doing things I normally do. I know Ted was amazed at how open I was. I didn’t really feel like I was doing anything all that amazing.

Photos courtesy of TGoldmanPhotography.com

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PatientsLikeMe launches “24 Days of Giving” to encourage sharing of health data for good

Posted November 16th, 2014 by

Napkin Notes Dad Garth Callaghan Joins Campaign Calling on People
to Donate Health Data Starting on Giving Tuesday

CAMBRIDGE, Mass. (November 17, 2014) - On December 2, PatientsLikeMe will launch a new campaign that will extend through the month and ask people to rethink their giving this year. PatientsLikeMe is calling on patients who are living with a chronic condition to donate their health data after donating to their favorite non-profit on Giving Tuesday.

The December campaign, officially branded “24 Days of Giving,” asks patients to simply share their health data for good. To do so, they can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. By sharing this data on the site, patients not only help themselves, but help others who can learn from their experiences, and advance research. “Our members have learned how to live better day-to-day and have contributed significantly to medical research,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy. “We hope more will consider sharing their health data for their own, and the greater, good.”

At PatientsLikeMe, health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. The data are de-identified and shared with partners to help bring the patient voice to medical research, develop better clinical trials, and create new products and services that are more in tune with what patients experience and need.

Garth Callaghan, kidney cancer fighter and author of Napkin Notes, understands the importance of data for good in furthering clinical research and is an active PatientsLikeMe member. Garth has been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. Rather than dwell on his diagnosis, Garth takes each day as a gift and a chance to connect with those he loves. He has fulfilled a promise he made to write 826 napkin notes so that Emma will have one for every day until she graduates high school. Garth uses PatientsLikeMe to share his data in the hope that others living with cancer can learn from his experience and help fight their own battles better.

“I keep my promise to Emma by sharing wisdom through my napkin notes, and I share my cancer stories online through PatientsLikeMe,” said Garth. “When I donate my data to an organization that can aggregate it and see a pattern or meaning, I’m not just helping myself, I’m helping all of the other people who are living with cancer, and their doctors.”

The “24 Days of Giving” campaign will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe
PatientsLikeMe® is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contacts
Margot Carlson Delogne
PatientsLikeMe
(781) 492-1039
mcdelogne@patientslikeme.com

Rachel St. Martin
Edelman
(646) 221-6933
Rachel.St.Martin@edelman.com


“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Posted November 14th, 2014 by

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called “Motor Neuron Disease Made Easier.” Steve spoke with us about the decisions that come with a MND diagnosis, the inspiration for his film and “how adaptable one can be in the face of adversity.” Read more about Steve’s story below and head to his blog to watch his film.

Looking back over the last 7 years since your diagnosis with ALS/MND, is there anything you’d like to have known sooner that has helped you along your journey?

I think I was fairly pragmatic about researching the condition from the outset, so there haven’t been many surprises apart from the fact that I am still here 7 years later (and I just realized it’s actually 7 years to the hour as I write). One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. There is so much equipment, mostly hideously expensive, that you will need if you want to mitigate the effects of the disease – wheelchairs, hoists, adapted vehicles, communication aids, modifications to your home, the list goes on. But if you don’t know how long, for instance, you will be able to use a standing hoist, you can’t assess whether it’s worth spending the £2000 (about $3,000USD) on one. I know there’s a degree of uncertainty with the prognosis of many illnesses but I can’t think of another which comes close to the complexity of MND.

You’ve documented your experiences in your film “My Motor Neuron Disease Made Easier” – can you share a little about your inspiration for the project?

The thought of having MND without the internet is terrifying. The amount of information available regarding equipment and solutions to our multitude of challenges is staggering. However there aren’t many websites, which bring everything together. And many have information without presenting it in a real world context. So I thought that a video demonstrating most of the equipment I use would be a simple and quick way for fellow sufferers to see what’s available, but more importantly seeing it being used. Furthermore, I have realized that for many issues there simply isn’t an off the shelf solution. And in my experience many of the healthcare professionals just aren’t very creative, so I wanted to share my ideas like the chin support, heel pressure reliever and hoisting techniques to others. Having made the video, the filmmaker, Bernard, wanted to expand the idea to how MND impacts on a family. Then finally I wanted a sixty seconds version, which could be potentially used as a hard-hitting awareness campaign. The 3000-word narrative took several days to type using eye movements, but I am proud of the results.

How has technology helped you cope with the impact of ALS/MND? Is there anything you can recommend for PALS who might not be as comfortable with technology?

Technology has undoubtedly made coping with the disease far easier. Having had over 20 years experience in IT, I appreciate that I am better equipped than most to adapt to new technology. But you really don’t need any technical ability to use an eyegaze system for communication purposes, which is the most important benefit it offers. Actually, initially I only used it for this purpose. It was only after I got more confident with eye control that I ventured out of the easy environment of The Grid 2 software and started using Windows directly. I am now able to do anything anyone else could do with a computer. It also allows me to participate with family life as I am able to control all the computers and network devices in the house, which means I can sort all the problems out. I am even in the process of buying a house using my eyes.

I arranged all the viewings, negotiated the price, organized quotes for adaptations, dealt with solicitors, scanned necessary documents, bought hoists and other equipment on Ebay, arranged dropped kerbs for wheelchair access with the council and will hopefully move before Christmas. The only thing my wife had to do was choose the sofa! So almost anything is still possible.

Your blog is testament to your incredibly busy family life! Being a father of three boys, what impact has ALS/MND had on your approach to parenting and family life?

I have to say that the impact of MND on my abilities as a father has been the hardest thing about this disease. My triplet sons were 6 years old when I was diagnosed and I was confined to a wheelchair by the time they were 8, and when they were 9 I could no longer talk to them. They are now nearly 14 and I am grateful that I am still here but we have missed out on so much, both physically and through communication.

The most obvious impact are the physical restrictions. Almost every activity that a parent enjoys with their kids has been denied to me, from kicking a ball around in a park to giving them a hug. But maybe a more important loss is that of communication.

Eyegaze is undeniably an incredible means of communication but it’s certainly not conducive to flowing conversations. Ten-year-old boys aren’t very interested in waiting around while you laboriously construct a sentence, especially if they think it’s finally going to read “no xbox for a week”! Trying to teach something using eyegaze or trying to discipline using eyegaze is at best frustrating and ineffective respectively. That’s not to say I don’t try but these are two of the most important roles of a parent, which for me have been severely compromised. However I am still able to contribute in other ways. Being able to control all the computers in the house means I can help out with IT related stuff. I have setup Minecraft servers for them and helped install mods, I have installed and monitored parental control software and setup backup facilities and  I have fixed virus problems.

When I could still drive my wheelchair independently and didn’t require a full time carer, we were still able to go out to places as a family regularly. But as the logistics of getting out got more complex, the family activities decreased, although this is equally contributable to the troglodyte tendencies of teenage boys.

What has been the most unexpected thing you have learned during your journey with ALS/MND? 

I guess it would be how adaptable one can be in the face of adversity. In one of my videos I mention remembering when I learnt about Stephen Hawking and thinking how can anyone live like that. It seemed so horrific. But I am living like that, and whilst I disagree with some PALS who say there are positive aspects to our situation, you do adapt to it if you develop these three key attributes – perseverance, patience and most importantly, ACCEPTANCE. I won’t say these are responsible for my longevity (that’s just down to good fortune), but they have made the last seven years bearable.

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