MONTHLY MUSINGS

The holiday season is about to start, with Thanksgiving right around the corner here in the US. 

In my family, we have a Thanksgiving tradition that everyone at the table shares what they are most thankful for, even if some years there are almost 30 people with us.  Some mention family, or jobs, or improved health.  Others remember those who passed during the year or something positive that happened in their lives.

As we eat, we'll talk about these blessings, about good news in our lives, and just enjoy being there together, surrounded by people we love.  We put aside the challenges we are facing – the lost jobs, or poor health, or financial problems – and focus on the positives. It's a day to be thankful, and we are. We truly are.

And speaking of, I am thankful for the time we’ve spent together.  As you may have read in my forum announcement, I will be leaving PatientsLikeMe at the end of the month.  I have been honored to have been a part of this community, and I have learned a great deal from you.  Thank you for all you’ve shared with me and with one another.

I leave you in the capable hands of my colleagues Emma Willey, Liz Morgan and Kate Brigham, your new team moderators.  Be well.

--Tim Horgan, Outgoing Community Manager   

JOIN THE CONVERSATION

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

Isolation or insanity or both?
Do you have social anxiety or agoraphobia?  You’re not alone.  Discuss the tendency to isolate yourself as well as tips for finding ways to interact with others and get help. 

Are you afraid of your meds?
From a fear of not being able to ever go off them to concerns about side effects, share your hesitations and experiences with various prescription medications. 

It’s like a metal-tasting head rush
When you have a panic attack, what particular symptoms do you experience?  And what actually causes those symptoms?  Exchange stories and questions. 

Have you tried medical marijuana? 
If you use medical marijuana or Marinol (a synthetic prescription formulation), share how it affects various symptoms, including pain, anxiety, mania and depression. 

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 allanbruce, a three-star member from Capalaba, Queensland, Australia.

1.  What puts a smile on your face?

Being happy and positive about life and my future means everything to me. I am just not going to let the daily difficulties of being disabled take that away. I have experienced a lot of good times and have some loving family members who support me. We are here for only a short time so it is best I enjoy the time I have.

But taking my boat out on the river at sunrise always puts a smile on my face. Playing guitar along with a favorite song comes in a close second. I really hope that I can get back to these things in the future after my spine surgery this month.

2.  How would you describe your attitude on life?

As far as my life is concerned, I do realize things don’t always happen the way I would like, so I have had to live one day at a time. Taking time to help others when I can, especially family, but also friends. My family has always joined in to help each other, and I love the time I spend with them even if I have to lay down in pain at times and just be there with them.

3.  What is your favorite holiday tradition and why?

Something I grew up with every year on the holidays was my family would pack up the car and boat with our tent and head to our favorite camping spot right next to the surf beach. We would go swimming every day and fishing off the beach. So I grew up with cousins, uncles and aunties. I suppose that was where I grew the bonds to family. My parents are aging, and I hope we can go again after I recover from surgery. I have so many memories there.

4.  What features of PatientsLikeMe do you use most?

Though I try to keep up with the statistics here and medications, etc., I go straight to the forum and read up on how everyone I follow is doing. I may not always say hello, [but] I still like to catch up on anything new and just have a read.

WHAT’S NEW AT PATIENTSLIKEME

• The conversation about online transparency is still going strong, thanks in part to the Wall Street Journal’s recent front-page article about the “scraping” incident at PatientsLikeMe.  As a result, we’ve been inspired to post a series of blog entries on the topic, including the latest edition: “What do we sell?  A continued discussion about data scraping.” Weigh in with your questions and comments.  

• Do you attend a regular support group meeting?  Or have friends or family members who might like to learn more about PatientsLikeMe – and maybe even sign up for your care team?  Don't forget about our Tell the World! page, where you can download and print condition-specific flyers about PatientsLikeMe.  You can also request a set of member business cards to help spread the word about your online “home away from home.”

• Have you been tuning in to our new patient podcast series – The Patient Voice?  We wrapped up last month with episode 5, entitled “A Little Elbow Grease and a Can-Do Attitude.”  Catch up on October’s moving audio interviews with members of our Parkinson’s Disease Community and be on the lookout for more podcasts to come featuring members from all of our communities.  Subscribe to this emotional new series on our iTunes page.

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 November:

• Do you have multiple conditions?  If so, you may have noticed that your primary symptom survey is now specifically tailored to your conditions (and just a tad bit longer). Notably, you will now see different symptoms depending on which conditions you report.  Learn more here. 

• Wish you could see details only from people who have your conditions(s)?  Done!  You now have the option to filter treatment and symptom reports by condition.  That way, if you want, you can show only information from people who have the exact same condition as you.  For example, you could filter the Clonazepam treatment report to patients with Social Anxiety Disorder only.  Simply use the new “Filter by” buttons at the top of each treatment and symptom report to do so. 

• Finally, we’ve made a related change to the Mood Map.  Since we've now customized the symptom lists by condition, we won't be asking you about physical symptoms anymore (unless it's specifically associated with your condition).  As a result, the "physical" score on your Mood Map will no longer be displayed on your profile or in the nugget.  The information you've entered previously will still be part of your profile - just as individual symptoms and not a bubble on the Mood Map.  Read more about these changes here.