579 results for “newsletter”

A Peek at the June Newsletter for Members

Posted June 22nd, 2012 by

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

Burning. Stabbing. Aching. Throbbing. Dull. Have you used any of these words to describe pain?  Highly subjective to each individual, pain is a sensory experience triggered by the nervous system.  Some of the different types include nerve pain (neuralgia), muscle and joint point and arthritis pain.

Check Out the Pain Symptom Report at PatientsLikeMe

If you’re living with chronic pain, it may feel like no one understands.  But pain is actually one of the top symptoms reported at PatientsLikeMe, affecting more than 40,000 of you and playing a role in so many different conditions, from fibromyalgia to rheumatoid arthritis to lupus. Over half of you rate your pain as “moderate” or “severe.”

How are fellow patients managing this “invisible” symptom?  Check out the pain symptom report as well as the hundreds of treatment evaluations for opioid painkillers such as Tramadol (Ultram) and Hydrocodone; anti-convulsant medications such as Gabapentin (Neurontin) and Pregabalin (Lyrica); and complementary therapies like acupuncture and massage. You can also join in on our forum discussions about pain for tips and advice.

Pain can make you feel alone – but you’re not.  Connect with thousands of others who can relate and share experiences.

Kate, Emma, Liz, Jeanette & Sharry

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JOIN THE CONVERSATION

Have you poked around the forum recently?  We now have lots of different rooms to meet your needs.  For example, did you know about the Digestive and Intestinal Room, the Muscles, Bones and Joints Room or the Neurological and Brain Room?  Find your favorite room(s) and check out some of these active threads below.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from longtime members.

WHAT MEN HAVE TO SAY

Last week was Men’s Health Week.  To honor the men in our community, we’ve spotlighted a few thought-provoking quotes by our male members.

Parkinson Pete

“Along comes PD and life changes. Now, I get all anxious about having to be ‘on’ at parties and functions. But, I go to everything! My default answer is now yes instead of no because frankly it’s too much trouble to back out of everything I say yes to. I always enjoy myself and am glad I went. I push myself while I can and it seems to help. It is work, but it is worth it because it not only rewards me, more importantly, it rewards my wife.”

Parkinson’s Pete, PD patient, 61 years old

Tommy Maker

“After a few days spent lazing about, I feel ashamed. I can look at this rationally and consider that in my current circumstances even surviving the day is an achievement but a lingering resentment at my inaction remains present nevertheless. I’m 50 years old, I’ve been unemployed for three months in my life, I’m now facing retirement and wondering whether I will be able to shake off this sense of negative self-perception.”

Tommy Maker, ALS patient, 50 years old


A Peek at the May Newsletter for Members

Posted May 29th, 2012 by

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

Why PatientsLikeMe?  Over the years, many of you have shared why you’re here. We recently found some videos of members like you who helped create the community of 150,000+ that we are today.  Here’s what they had to say:

“To be truthful, I’ve learned a whole lot more from other patients than I could ever have in a doctor’s office,”  judy4etsu told us.  According to pokie too, who has PDepilepsy and type 2 diabetes, “You’ve got to talk to somebody.  You’ve got to say, ‘I’m having a bad day.’”  For sontzie66, it’s the disease measurement tools like the Parkinson’s Disease Rating Scale (PDRS).  “I answered all the questions, and I got my rating of where I was,” she said.  “I had no idea what level I was with the disease.”

Thanks to all of our members for being so willing to share your voices through videos, blog interviews, forum posts and more. Your experience matters and sharing what it’s like to live in your shoes is helping to change healthcare for the better.

What’s it like for youAdd a story to your profile today.

Kate, Emma, Liz, Jeanette & Sharry

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

JOIN THE CONVERSATION

Have you poked around the forum recently?  We now have lots of different rooms to meet your needs.  For example, did you know about the Lungs and Respiratory Room, Women’s Health and Pregnancy Room and Kidneys and Urinary Room?  Find your favorite room(s) and check out these active threads below.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

CONDITIONS GO INTERACTIVE

What do you want to learn at PatientsLikeMe?  This is a question we started asking new members during signup a few months ago.  Now, all of their comments are featured instantly on our new condition reports, and you have the opportunity to reply!  Visit the “Who’s New” tab (pictured above) to welcome a new member or offer a bit of advice.

In addition, there are now live feeds of all new profile stories related to that condition, including condition updates, symptom updates and QOL survey answers.  (See an example here.)  That way, you can keep up with your condition’s activity in real time and see other members’ comments, stories and replies all in one place.

Explore our revamped condition reports (while logged in) to try out these new interactive features!