2 posts tagged “forum discussions”

In the market to live better: ALS members weigh in

Posted November 6th, 2017 by

Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out:

When it gets difficult to turn over, members mentioned:

  • Drive Medical alternating pressure mattress
  • Check out Amazon for a variety of inexpensive alternating pressure mattress pads and pumps

To manage muscle weakness, Kate shared a list of helpful products:

  • For writing: PenAgain – alternative style pen, eliminates the need for a firm thumb-forefinger grip to write. Available online and in office supply stores.
  • Magnetic closure shirts. The shirts have buttons sewn on the front, but the closure is secured with small magnets behind the buttons, including the cuffs.
  • Devices that “cinch” your shoelaces (regular or elastic) closed so you don’t have to tie your shoes each time. An example is “lock laces.”
  • The “Toilevator” is a very small pedestal that goes under the entire toilet and lifts the entire thing up about 3 ½ inches, works with a bidet seat.

For Eyegaze:

And, other communication devices:

When transferring to and from the toilet gets tough, members mention:

For personal hygiene:

What products help you? In the market for something specific? Head to the forum – the community might have a recommendation.

Share this post on Twitter and help spread the word.


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

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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.