MONTHLY MUSINGS

I recently came across a heartfelt plea in the forum.

“I am begging.  If any of you have positive experiences with any treatment, please fill out a treatment report.  I know this helps PatientsLikeMe, but more importantly, it helps us PALS.  I just did a search for ASEA [water] in the treatment reports, and got nothing.  The more data we put in, the more we can get out. Please help.” - Beanjt 

It only takes a few minutes to add a treatment to your profile – and only a few more minutes to complete a treatment evaluation.  When someone wonders about the benefits of a relatively unknown supplement such as ASEA water, your personal evaluations make for an important, credible resource that literally cannot be found anywhere else. 

So, thanks for sharing as soon as you can – and as much as you can – about treatments you are trying.  Other members are waiting to hear your evaluation!

--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!

Combating daytime drowsiness
Do you feel sleepy during the day?  After consulting her doctor, one member shares how she has improved her tiredness, daily nap schedule and even her attitude.

How sleep issues affect caregivers
When PALS get poor sleep, so do caregivers.  From Ambien to satin sheets to rolled towels under the feet, share tips for helping everybody get a better night’s rest.

Overheating in the evening
Speaking of difficulty sleeping, overheating can be one of the reasons.  Discuss why PALS have issues with temperature regulation and how to stay cool (or warm up).

Can you post pictures of you in your wheelchair?
A member is trying to figure out why her new wheelchair does not fit her arms and hips.  Share pictures of your own wheelchair to help others compare, choose and get outfitted!

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 iamarunner, a three-star member from Fredericksburg, Virginia.

1.  Describe your favorite moment from this summer.

There are several: any time my three daughters are with me; my middle daughter’s engagement party; the fundraising race my friends put on and that my two older daughters ran; the installation of my bidet toilet seat (choirs of angels could be heard on that wonderful day); and the purchase of my wheelchair-accessible van.

2.  How have you changed for the better since your diagnosis?

Losing my independence still causes quite a bit of frustration, but I no longer worry about the little things over which I have no control. It doesn’t do any good, and I would rather spend my time enjoying life.

3.  Tell us something that people may not know about you. 

I quit smoking after 27 years, ran my first marathon one year later, and ran my 26th – and last – marathon seven years after that.   I was never fast, but I loved the feeling of my muscles working to propel me step after step, mile after mile. That experience helps me now as I go day by day, week by week.

4.  What does it take to maintain three-star status – and why do you do it?

One day, just before I retired, I came to the PatientsLikeMe website and looked at my rather sparse profile. I spent some time updating my symptoms and treatments, I wrote a little bit more about myself, and voilà – three stars. I update my FRS every month, my FVC and weight after each clinic visit, and the rest as they change.

I find it is a great way to monitor my progression and hopefully it will be helpful to other PALS, particularly those newly diagnosed, who are looking for someone like themselves. After all, the website is called PatientsLikeMe, right?

WHAT’S NEW AT PATIENTSLIKEME

• Ready to shout from the mountaintops about PatientsLikeMe?  We’re ready to support you in that effort!  All of our community-specific slidedecks have now been updated.  Break out an engaging visual slideshow at your next support group meeting and then pass out our one-page flyer as well as your PatientsLikeMe member business cards afterwards.  Visit our Tell the World page to get your hands on these helpful materials today.

• As summer turns to fall, many disease-related walk/run events are gearing up.  If you’re organizing a team and starting your fundraising efforts, don’t forget about the PatientsLikeMeInMotion™ sponsorship program.  (See photos of previous teams here.)  All you need is three-star status, and we’ll sponsor your team with a monetary donation and official PatientsLikeMeInMotion™ t-shirts.  (Please allow 3-4 weeks lead time.)  Learn more here.

• Like to read scholarly articles?  We often highlight our media mentions in The New York Times and other consumer publications, but we also are quite proud of the academic recognition we get each year.  Follow the published research of our staff as well as other scientific citations for PatientsLikeMe via Google Scholar.