13 posts from November, 2014

“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