MONTHLY MUSINGS

 Did you know that...

• …DocJ raised over $292,000 for the Walk to Defeat ALS?

• …Vicki's son was inspired to develop an off-road wheelchair? 

• …there are now almost 5,000 patient members in the ALS Community?

• …two members have had radiotherapy to help control excess saliva? 

• …there are 196 treatment evaluations for Rilutek, the most commonly reported treatment in the ALS Community?

• …one of the most popular forum tags is awareness raising activities? 
  
  

And finally, did you know that, individually and collectively, you are making a difference in the lives of other patients? Well, now you do!  Thanks for all the ways you share.

--Emma Willey, Community Manager

JOIN THE CONVERSATION

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

Considering antidepressant therapy
A member is searching for PALS on antidepressants.  Have you taken them – and did they help you cope?  Share your experiences with depression as well as your support.

What should ALS stand for?
“Always Leaning Sideways”?  “Acute Laughing Syndrome”?  Which three words sum up ALS for you?  Read both humorous and poignant contributions – and add your own. 

Chattering teeth, clenching jaws
Have you experienced these lesser-known symptoms?  Does it make it hard to open your jaw wide?  From mouth guards to jaw stretches, discuss what you’ve found can help. 

GETTING TO KNOW YOUR PALS

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

1.  What are you most proud of?

My children and my husband. We have three kids.

Andrea, who is 25 and has a beautiful baby girl Payton, she is 3. Mason is our eight-year-old son, he is so helpful and sweet to everyone. Elizabeth Cody is our four-year-old daughter, who is just like her brother, very sweet and helpful, and they both all have the best sense of humor and make me smile and laugh everyday!

My husband Mark, he is the love of my life, and I am proud of how well he takes care of all of us, and smiles the whole time!

2.  What’s your favorite hobby or pastime?

As you can imagine, my favorite thing to do, and my hobby, is Mark and the kids.  I love to watch them play together! Mason plays football and so this is a great time of year. We all love to swim, so we do every chance we get. I am still very comfortable in the water and I can hold the kids!

3.  Tell us the most important thing you’ve learned at PatientsLikeMe. 

We just had a fundraiser on Saturday, October 9^th, for the ALS Guardian Angels.  For more information, go to www.lonestaricehouse.com. For more information on ALSGA, go to www.alsguardianangels.com.  These people truly help those who need it.  Thanks to PatientsLikeMe!  I would have never known about them without PatientsLikeMe.

WHAT’S NEW AT PATIENTSLIKEME

• This month marked the launch of our new patient podcast series – The Patient Voice.  Hear what patients like you have to say in their very own words.  Our inaugural interview was with Parkinson’s disease member pokie too, and every week moving forward, we’ll be capturing the distinct voice of another patient.  Subscribe to this inspiring and emotional new series on our iTunes page and submit future show ideas on the “Listen In” forum thread.   

• Last May, our President Ben Heywood wrote to you about how a major media monitoring company "scraped" our forum.  The Wall Street Journal recently published a front-page article about the incident.  We believe this high-profile coverage of the incident can help promote a rigorous debate on transparency, openness and privacy – and we’re excited to hear what you have to say on the issue. For more information, read our recent blog post to learn how we (and you) reacted to this incident, as well as the lessons we can all take away from it.  

• If you’re taking a prescription medication, the safety of that drug is of utmost importance to you.  Did you know PatientsLikeMe is the only online health data platform in social media that has passed multiple drug safety compliance audits?  Learn what we’re doing in the areas of drug safety and adverse event reporting in Co-Founder and Chairman Jamie Heywood’s recent blog entry.

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 are our top functionality enhancements for October:

• Notice anything different about your Condition History – or what was previously called your Diagnosis History?  Renamed and retooled, this section now shows you how your answer compares with the rest of the community whenever you complete a question. This is similar to what we did a few months ago with your Basic Information page.  Enjoy the ability to instantly share and compare.  

• If you’re down a star, don’t worry – it’s easy to get back.  As part of the Condition History changes described above, we removed a few questions and added a new one. If you see a yellow prompt on your home page or your profile page asking you to update your Condition History, please take a moment to answer this new question, and you’ll get your star right back.