MONTHLY MUSINGS

How do you deal with family members’ treatment suggestions?

I came across this quandary in the forum recently, and it made me think about how we all have to learn how to handle unsolicited or pushy advice from our families at times.  But when it comes to how to treat a life-changing condition like ALS, it can be that much more difficult to navigate differences in opinion. 

Clemson17 writes, “I don't want to sound ungrateful, and I really do appreciate my parents’ input and support.  However, I think they are chasing a snake oil salesman and wasting their money.  How do I tell them?  Or should I just go along with it in order to make them feel as if they are being proactive?  I don’t want them to think that somehow I've given up on my fight.” 

Read what others had to say on the matter and share your own thoughts on the balance between treatment hope and hype.  If you truly believe something falls in the latter category, what’s the most tactful way to communicate that to your family?

--Emma Willey, Community Manager

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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 Natural, a three-star member from Medina, Ohio.

1.  What puts a smile on your face?  

For me, there is nothing better than greeting my two daughters, Lindsey and Lauren, when they come home from school or being away.   At ages 5 and 8, they jump in my lap and are thrilled to share their latest exploits.  It is like a ray of sunshine on my day every time they come bustling in the door.  

2.  How would you describe your attitude on life?   

I have acquired a very practical attitude about life.  Things are not very complicated anymore.  All the baggage from the past doesn’t matter anymore.  I just want to spend quality time with all the people that are important in my life.  Laughter is always the best.  

3.  What is your favorite holiday tradition and why?   

 Thanksgiving is still my favorite holiday even though I cannot eat solid food anymore.  It is not too commercialized.  There is something very honest about just being thankful.  In addition, watching football makes for a lot of easy talk and an enjoyable day.   

4.  What features of PatientsLikeMe do you use most?    

I use the Doctor Visit Sheet all the time.  I keep my medicines and treatments up to date so if there is an emergency, we can just print one out.  It sure beats fumbling around and trying to remember everything.

WHAT’S NEW AT PATIENTSLIKEME

• Have you been tuning in to our new patient podcast series – The Patient Voice?  We wrapped up last month with episode 5, entitled “A Little Elbow Grease and a Can-Do Attitude.”  Catch up on October’s moving audio interviews with members of our Parkinson’s Disease Community and be on the lookout for more podcasts to come featuring members from all of our communities.  Subscribe to this emotional new series on our iTunes page.

• The conversation about online transparency is still going strong, thanks in part to the Wall Street Journal’s recent front-page article about the “scraping” incident at PatientsLikeMe.  As a result, we’ve been inspired to post a series of blog entries on the topic, including the latest edition: “What do we sell?  A continued discussion about data scraping.” Weigh in with your questions and comments.  

• Do you attend a regular support group meeting?  Or have friends or family members who might like to learn more about PatientsLikeMe – and maybe even sign up for your care team?  Don't forget about our Tell the World! page, where you can download and print condition-specific flyers about PatientsLikeMe.  You can also request a set of member business cards to help spread the word about your online “home away from home.”

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 is our top functionality enhancement for November:

• Do you have multiple conditions?  If so, you may have noticed that your primary symptom survey is now specifically tailored to your conditions (and just a tad bit longer). Notably, your "condition-specific symptoms" list will be the same as what was previously called the "primary symptoms" list.  Learn more here.