MONTHLY MUSINGS

Can your employer force you to go on disability? - Teamhendrickson

This month, I was struck by Teamhendrickson's account of being told by his employer that he had to go on disability. Either that, or he could take a salary reduction or be laid off. Naturally, he was shocked and upset. "I was hoping that it would be a decision that I would make with my family as well as employer," he writes.

Strikingly, several members share similar experiences. Some pursued legal action. Others found themselves relieved they no longer had to deal with the stresses of their jobs. Were you forced to leave the workplace before you were ready? What are your rights in this situation? Add your insights and advice to this important thread.

--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!

How do you really feel about clinical trials?
Want to impact how clinical trials for ALS are conducted? This is your chance! Share your opinions and experiences with our R&D Director, who will be speaking on the topic.

Things can happen very quickly
A caregiver steps outside for just 10 minutes, and a life-or-death situation results. From alert buttons to baby monitors, what tips and procedures do you have for emergencies?

Laryngectomy vs. tracheotomy
What are the pro's and con's of these two procedures? And how do they impact survival? Learn why one family has chosen a laryngectomy, the less common of the two.

Can a tattoo raise awareness for ALS?
A member decides he's going to get a tattoo. But of what? Should he get a swallow for global ALS awareness? Share your own body art and discuss how ALS has influenced it.

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 arorob, a three-star member from Finland.

1. Where do you find courage?

This is hard but my family, especially when I think of my children.

2. Who has been a mentor to you?

Mostly my hospital people. My care team includes my doctor, therapist, speech therapist and people that take care of my legal rights. They make sure my home is fitted for me, that I can move around and in and out with my wheelchair, and things that make living still at home possible.

3. Do you try to raise awareness about your condition - and if so, how?

By reading, going on the Internet and checking around.

4. How has PatientsLikeMe impacted your outlook?

In a very positive way. (You can see arorob's profile here.)

WHAT'S NEW AT PATIENTSLIKEME

• Doctors are on call. And now, so is PatientsLikeMe! Earlier this year, we launched a podcast series called PatientsLikeMeOnCall to share valuable insights from our executive team. So far, we've interviewed two of our Co-Founders, our Chief Marketing Officer, our R&D Director and our Health Data Integrity Manager about topics that we know matter to you. All of our podcasts are now free on iTunes, so subscribe to the series today!

• Spring is here (finally!), and many disease-related walk/run events around right around the corner. If you're a three-star member and planning to participate in one, we're pleased to announce that we've made it even easier to take advantage of our PatientsLikeMeInMotion sponsorship program. Now, instead of having to email us, you can fill out an easy-to-use request form to enroll your walk/run team. Get your donation and free "Team PatientsLikeMe" t-shirts today! (Note: Please give us 3-4 weeks notice.)

• Like to stay up-to-date with our blog...but have trouble remembering to check it? Problem solved. We've now added an RSS feed as well as a "Subscribe via email" button. That way, you can get "fed" or pinged whenever there's a new post.

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 April:

• Ever get confused about who's a patient...and who's not? Well, we've made sure that won't happen anymore. Our new icons for PatientsLikeMe admins and non-patient members are designed to help you determine who's who at a glance. See Ben's badge (to the left of this bullet) for an example.

• First things first. Now, when you go to add a treatment for the first time, you will get a prompt asking if you are currently taking any of the primary disease-modifying treatments for your condition. This should make it easier to get started and help our research team capture better data.

• Do you need prompting sometimes? You're not alone. We've improved our update prompts to help guide new members through the process of completing their profile. Now, we lead you through the steps - basic information, diagnosis history, primary outcome scores, symptoms and treatments - with better prompts. You'll see them on both your homepage and your profile.

• Say hello to better symptom matching. When you mistype a symptom name, our improved search results will help you find what you're actually looking for. Additionally, if you add a new symptom, we show you a list of existing symptoms to make sure you don't want one of those instead.