18 posts from October, 2011

A Peek at the October Newsletter for Members

Posted October 31st, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our October 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

Do your friends and family give you the support you need as a patient? Or have you found that – despite their best efforts in some cases – they just don’t understand what you’re going through? We’ve noticed that this tends to be a hot topic in our forum, drawing many members to make their first post.

A PatientsLikeMe Member Enjoying Some Support

Here’s what some had to say:

  • “I was called a hypochondriac, a faker, a selfish jealous person, and the downfall of my family. I was astounded.” – Patient with fibromyalgia
  • “My friends know I have it and they are supportive, but I can tell some get uncomfortable talking about it.” – Patient with multiple sclerosis (MS)
  • “My family doesn’t really un derstand and has a tough it out or ‘pull yourself up by your bootstraps’ mentality.” – Patient with major depressive disorder
  • “I have lost two friends of over 10 years. They were sick of me being late, canceling plans, or saying I wasn’t up to doing things.” – Patient with rheumatoid arthritis (RA)

What about you? Do you believe anyone who’s not also living with the same conditions can truly “get it”? Share your stories in this ongoing forum discussion, a place where (as one member puts it) “you can find people who care because they know.”

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

What’s happening in the forum? Check out some of the recent buzzworthy threads below. Then jump in with your own questions and answers.

Need help using the site or want to learn more about recent changes?  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 October.

A Popup Window for Entering Side Effects at PatientsLikeMe

In August, we changed the way we capture attributions – or the links between any two health concepts, such as treatments and side effects. As we watched you use these new features, we learned some valuable lessons about what makes sense to you from a user perspective and what is missing from a research perspective.  As a result, we’ve recently improved how we capture and reflect the data you’re entering so it’s done in the most meaningful way. See the full Release Notes for details on these recent changes to how you capture and share symptoms, side effects, “causes” and more.


Competing Against MS: An Interview with MLR

Posted October 28th, 2011 by

PatientsLikeMe member MLR was an avid BMX (Bicycle Motocross), MTB (Mountain Bike Racing) and Motocross athlete his entire life – until he was diagnosed with multiple sclerosis (MS) last year. After having to give up the sport he loved, MLR began to suffer from depression. Today, however, he’s happy to report that he’s racing again thanks to an amazing turn of events. Check out his incredibly moving story below.

MLR Racing Again After the BMX Community Gave Him the Surprise of His Life

1.  How did you and your family react to your MS diagnosis?

It was very tough when we found out it was MS that was causing all these problems and keeping me from training and racing. My family traveled with me always, and it was like going on vacations every month. We were a racing family.

2.  How have you adjusted to living with MS – and what tips do you have for newly diagnosed MS patients who identify as athletes?

The hardest part for me was accepting the fact that I was not going to be able to race and do most of the things I had done for so many years. But my family didn’t give up on me like I did. They pushed me through the depression, and my faith in God carried me through my deepest valleys and set me on the mountain tops to see what my life could still be. As athletes, we just have to keep that drive. We have to compete and make adjustments and keep competing. Compete against the odds and against MS itself.

3.  You have a new gravity downhill wheelchair that you’re racing now.  How did that come about, and what’s it like to race in one?

My new gravity wheelchair is a blast! It was built by Active Force Foundation, with four wheel independent suspension (6.5″ of travel), four wheel disc brakes and all built out of aluminum. It is so fun to ride and race.

MLR and Friends Showing Off the 4Cross DH Gravity Wheelchair

The greatest thing about this chair is how I received it. My two daughters started talking to people in our sport of BMX about my disease and how it had really taken its toll on me and how depressed I was that I couldn’t ride a bicycle any more. So over about a year to a year and a half, the whole BMX sport joined with them and raised the $11,000 to buy me this 4Cross DH chair. When they presented me with the concept of getting this chair, I was overwhelmed at the love and support from not only my two awesome daughters but also from my fellow racers and BMX family. The family of BMX is worldwide. Needless to say I cried like a baby for the support and love I felt from these wonderful people.

I ride my awesome DH chair every chance I get.  Although they aren’t very many races for these chairs, I have so much fun showing up to race events and showing the chair off and letting people sit in it and sometime letting people get pushed around a parking lot in it. So if you ever get a chance to go see some BMX racing or you know someone in BMX, know that it is a great sport and the people are a loving and caring group. By the way, BMX is an Olympic sport, and you can see it again in the 2012 London Olympic Games!