MONTHLY MUSINGS

How are you doing – physically, mentally and socially?

All three are components of your quality of life (QoL), which is simple and easy to measure at PatientsLikeMe.  By answering a few short questions, you can find out how your condition is affecting the whole you. 

In a recent blog entry and podcast, PatientsLikeMe Research Scientist Mike Massagli says that measuring QoL is “a reliable way of comparing your own situation over time.” He also points out that it can help you “understand the impact of your disease, treatments and symptoms on your ability to function.”  And, unlike other disease measurements, your QoL score is based on your individual perception of how you’re doing. 

You can begin using the QoL profile survey (which lets you measure QoL at any time) once you complete all three PRO surveys (which you must take in a specific timeframe).  Become a PRO today and start learning even more about the impact of your condition.

Questions?  Don’t hesitate to contact me. 

--Elizabeth Morgan, Community Manager

JOIN THE CONVERSATION

Check out some of the hot topics in the forum.  Then jump in with your own questions and answers!

Trouble getting up in the morning
Given that more than 800 of you report having insomnia, it’s not surprising that many epilepsy patients struggle to wake up.  What helps?  Share your tips and strategies.  

Does anyone have a service dog?
A member is considering getting a dog for seizure awareness.  What kind of dog is best – and does the dog have to undergo training to be a service dog?  Offer your advice. 

Seizures not showing up on EEG
Follow tinkerbell27*’s frustrating inpatient hospital observation - from her seizures not showing up on EEG to her doctor calling them pseudoseizures.  Can you relate?

Who else has Temporal Lobe Epilepsy (TLE)?
Read accounts of seizures – and out-of-body experiences – from TLE patients who are relieved to learn they’re not alone.  (See all 423 patients with this type of epilepsy.)

GETTING TO KNOW YOU

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.”  That’s why we interview members each month to find out more about how they approach life.  This month we are pleased to feature mrpag13, a three-star member from Winchester, Indiana.

1.  What brings you joy?

My peace of mind led me to studying communications in college, and I have enjoyed every moment of it.  It all started when I took the role of video coordinating for both the Winchester Community Golden Falcons Basketball Programs.  Out of multiple highlights, the one that left its mark was when Winchester Community’s Girls entered their first Indiana High School Athletic Association Final IV (in Southport, Indiana) in school history and doing it in big fashion. 

In the Indiana High School Athletic Association Class 2A Elite VIII at Lawrence Central High School in Indianapolis, Indiana, Winchester Community’s Girls had knocked off the four-time defending state champion, Heritage Christian, out of Indianapolis, 56-53.  It was former Winchester Community Girls Basketball Head Coach Gary Horner’s dream to take on Heritage Christian in their prime and beat them.  He passed away on the night of August 18, 2008, to an unexpected heart condition

2.  What is your top priority these days?

These days my top priority is mainly what every epileptic’s is – and that is to make sure that I do not have any more seizures so that I do not go without driving.  Another thing at this point would be finishing my last two classes of college.  Lately I have been working on my resume.

3.  How does your condition affect your social life?

From May 16, 1997, until the summer/fall of 2001, I was suffering from a high frequency of seizures:  one Complex that merged into a Grand Mal, five Simple Partials, and another Grand Mal, in that order.  Each time I was having a seizure, the more girls got scared, thus eliminating my chances of getting a date.  

While attending Winchester Community High School for four years, there were a total of 10 dances – two Sadie Hawkins, four Sweethearts, and four Proms – and there were a total of 117 members of the Winchester Community High School Graduating Class of 2006.  Out of the whole student body, I was the only individual who did not have a date for any of these formal dances, and to this day, I have not been on a date yet nor I have been kissed by a girl.  In the midst of all that, my peers were calling me names, swearing at me, throwing stuff at me, and even sinking down to the level of stealing a pair of shorts that I had worn to school back in the 6th Grade while attending Lee L. Driver Middle School. 

It is my best intentions that I would probably never get married due to how this chronic neurological condition has affected me emotionally.

4. What keeps you coming back to PatientsLikeMe?

To view other epileptics’ opinions and stories, and to give advice to others.

WHAT’S NEW AT PATIENTSLIKEME

• Have you visited our blog lately?  Recent entries include “Will Openness Bring About a Breakthrough?” (which includes an invitation to the Myelin Repair Foundation’s “Breakthroughs to Cures” event), “Success Is Putting the Patients First” (which explains how our patient-centric approach determines our partnerships and business model) and “Flickr-ing PatientsLikeMeinMotion™” (which is chock-full of photos from recent walk/run events.)  Check back often for the latest happenings at PatientsLikeMe.

• We’ve been in the news quite a bit, but this month, our members are making the headlines.  Read how PatientsLikeMe changed the life of an MS member in “Feel Sick?  Click Here,” an article in Women’s Health, and what a fibromyalgia member learned from another patient in “Medicine Without Doctors,” featured in Smart Money.  Thanks to both members for sharing their stories!

• Who called us “a remarkable, patient-generated, web-supported database”?  That would be the authors of an article published in the scientific journal Neurology  entitled “Is the lithium-for-ALS genie back in the bottle?  Not quite.”  We’re incredibly honored that they mentioned us – as well as the results of our ALS Lithium Study – in their scientific article. 

THIS MONTH’S SITE IMPROVEMENTS

We are constantly working to improve our site.  In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better. 

Here is our top functionality enhancement for September:

• Got a website problem to report?  Or something else you’d like to tell PatientsLikeMe?  Contact us!  We’d love to hear from you, which is why we recently made it super easy to get in touch about anything and everything.  Now, on the bottom of any webpage, you’ll find a “Contact Us” link.  Click-through to the Contact Us page, fill out the simple form and your message will be sent instantly to our staff.  So go ahead – make contact today!