The Value of Openness by PatientsLikeMe ®

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our August edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

What type of exercise – and how much – is right for your condition?

We all know exercise is a good thing, but if you’re managing a disease, it can be a little trickier to find the right regimen. How much exercise? What type? How often? The answers, of course, are different for everyone, and it can take time and patience if you don’t know where to look. Why not start with patients like you?

Patients with many different conditions have shared what’s worked and what hasn’t for more than 150 types of exercise. Some of the most common ones include walking, yoga, stretching, aquatic therapy and swimming. How do other members rate these exercises? You can find out in the treatment evaluations. As one member writes, “I have felt less need for pain meds, and I have slept better on the nights I walk.”

Whether you’ve found your ideal routine or are still searching, you may want to become part of an “online buddy system.” For example, subscribe to one of the forum threads on exercise listed below in the “Join the Conversation” section. Can’t find one for your room? Start your own. Let’s get moving together!

– Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

Check out what other patients are saying about exercise in the forum. Then jump in with your own questions and answers. (New members are welcome anytime!)

• Hate exercise but need to do it (Mental Health Room)
• Physical therapy for MS (MS Room)
• Seizures triggered by exercise (Epilepsy Room)
• Debunking exercise myths (FM/CFS Room)
• Helpful exercises for arthritis (Inflammatory Room)
• The exercise accountability thread (MS Room)

Need help with something on the site?  Visit the Technical Help Using PatientsLikeMe Room.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site, Here are our top functionality enhancements for September.

EMAIL AND NOTIFICATION UPGRADES
There are so many ways to stay connected at PatientsLikeMe – which can be a blessing and a curse sometimes. Recently, we made some major changes to our email and notification system. In addition to fixing reported bugs, we’ve made it easier for you to turn email notifications on/off with the click of a mouse. We’ve also improved the unsubscribe process. Visit your Email Settings page to update your preferences.

HIDDEN FORUM TOPICS
Wish you could avoid certain forum threads? Consider it done with our new “Hide Topic” button (pictured below). They’re not gone forever if you change your mind, however. Simply go to the “My Hidden Topics” page to find them.

AUTOMATIC LOGIN VIA VERIFIED EMAIL
If you’re tired of having to log in when you click a link in a PatientsLikeMe email – such as this monthly newsletter – you’re going to love hearing that you can now log in automatically via verified email. To turn on this time-saving feature, go to your Account Settings page and select “Yes” as shown below.

NEW OUTCOME SCORE FOR AUTISM
Finally, we’ve introduced a new outcome score for patients with an autism spectrum disorder (ASD) called the Autism Treatment Evaluation Checklist (ATEC). You’ll see that the ATEC score is now displayed in the “puzzle piece” icon in all ASD patient nuggets, as illustrated below.

Today, September 29th, is World Heart Day. Sponsored by the World Heart Federation, this annual event was started in 2000 to raise awareness about heart disease and stroke, the world’s leading cause of death with more than 17.1 million lives lost each year. All around the globe, activities such as talks, screenings, walks, concerts and sporting events have been organized for today.

One of the main goals of World Heart Day is to educate the public about the fact that at least 80% of premature deaths from heart disease and stroke could be avoided. All it takes is controlling the three main risk factors: tobacco use, unhealthy diets and physical inactivity. Beyond those, another related risk factor is high cholesterol, which was the subject of yesterday’s blog post.

Here at PatientsLikeMe, a number of patients report cardiovascular conditions as well as conditions that put them at high risk for heart disease or stroke. They include:

• Hypertension (1,943 patients)
• Diabetes Type 2 (1,282 patients)
• Cardiomyopathy (293 patients)
• Coronary Artery Disease (183 patients)
• Stroke (99 patients)
• Congestive Heart Failure (55 patients)
• Heart Attack (55 patients)
• Valvular Heart Disease (41 patients)
• Angina Pectoris (40 patients)

If you’ve been diagnosed with one of these conditions, join our growing community and connect with patients like you today. Have a loved one who’s at risk? Educate yourself about the warning signs of a heart attack or stroke. According to the World Heart Federation, over 70 percent of all cardiac and breathing emergencies occur in the home when a family member is present and available to help a victim.