2 posts tagged “visualization”

“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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One for All: The Connected Community of PatientsLikeMe

Posted December 7th, 2010 by

Comments between Epilepsy patients on PatientsLikeMe

PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data.  So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports.   We believe this enormous collection of health data will dramatically improve how patients manage their conditions.

But there are more benefits to joining a community of patients like those on PatientsLikeMe than just sharing data: the social support from interacting with other patients has a real effect on improving patient outcomes.  In a recent study published in the Journal for Medical Internet Research (JMIR), our research team found that nearly half of survey respondents (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition.  Furthermore, the survey shows that those patients on PatientsLikeMe who make close relationships with other members receive significantly more benefits from those who do not.

So it is worth taking a moment to look at just how extensive the social connections are on PatientsLikeMe, and how many patients have reached out to other patients and helped improve their lives.

There are many ways to connect with other patients on PatientsLikeMe, ranging from communal conversation in our forums to direct one-on-one personal messages.  While some of this dialogue is centered around sharing of health information and experiences, a part of it is purely meant as conversational discussion about everyday life.  All of these interactions are important, because they help tie a community together.  Here’s a glance at some of the ways you’ve connected:

Forum

  • You’ve created 1.2 million posts composed of 94 million words about 86,048 topics
  • 21,865 of you have created at least one post, and 54,839 of you have viewed at least one post
  • You’ve marked posts as “helpful” 1.2 million times

Personal Messages

  • 25,062 of you have sent a total of 751,668 messages
  • 723 of you have individually sent over 100 messages

Patient Profile Pages

  • You’ve viewed our 80,000 patient profile pages over 15 million times
  • 11,874 of you have left over 156,196 comments on other members’ profile pages

(Note: numbers are across all communities.)

While these numbers show just how much sharing has been going on, the following graph illustrates what the connections are like between our members.  In this graph, the dots represent patients, and the lines between them connect any two patients who have shared at least 5 personal messages together.  Note how many patients are interconnected.   By reaching out to one another for support, conversation, data sharing and more, you’ve created a universe of dialogue that has never existed amongst patients like you.

Personal Messages between Patients on PatientsLikeMe

Click for full-sized version. A graph showing personal messages made between some of the patients on PatientsLikeMe. The dots represent patients, and a line represents at least 5 personal messages between them.

Moreover, what you’re sharing with each other through these various connections represents the largest data set of its kind linking conversations to outcomes and overall health experience. This week on the blog, we’ll delve into some of these connections that have been spurred by some of our members.  However, we also want to recognize that even the silent contributors (those connecting behind the scenes or outside of the forum spotlight) are as much to thank for this open network.  All for one and one for all.

(About the title image. This graph shows all comments made between Epilepsy patients on PatientsLikeMe. The dots represent patients, and the lines between them represent at least one comment made. Note the highly connected network of patients in the center. Click for full-sized image.)

PatientsLikeMe member jcole