MONTHLY MUSINGS

Are you “on” or “off” your treatments?

As we look back over 2010, one of the most helpful upgrades we made in the Parkinson’s Community was the ability to rate your symptoms as either “On” or “Off” when reporting your health status through the Parkinson’s Disease Rating Scale (PDRS).  

Many of you asked us in the past, “Should I respond when my treatments are working and I’m at my best (’On’), or should I respond when my treatments aren’t working and I’m at my worst (‘Off’)?” It’s a good point, as it could make quite a difference.  Fortunately, with this upgrade to the PDRS, you can now see the effect of your treatments more clearly than you could before.    

Since we made this change, nearly 500 of you have added PDRS scores and started to get more insight into what impact your treatments are having on your overall health.  Curious what this looks like?  Check out browncat87’s PDRS chart for a good example.

Have you updated your PDRS recently?  Share what you’ve learned about being “on” or “off.”

--Kate Brigham, Community Manager   

JOIN THE CONVERSATION

Check out some of the hot topics in the forum.  Then jump in with your own questions and answers!

Does wine aggravate your PD symptoms?
Also, does red and white wine affect you differently?  Discuss how various alcoholic beverages impact your PD as well as the lifestyle changes you’ve made as a result.

Confused and dizzy when I’m around crowds
Do you have trouble being in a crowd – or even among a small group of people?  Is it because of your PD symptoms, or a symptom in and of itself?  Add your experiences. 

What makes your tremors better or worse?
484 of you report hand tremors, while 142 of you report leg tremors and 130 of you report feet tremors.  Share what exacerbates or improves your different tremors.

Insomnia is driving me nuts!
Can you relate?  More than 2,000 of you report experiencing insomnia, one of the most common PD symptoms.  Discuss what causes it as well as what can help. 

GETTING TO KNOW YOU

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.”  That’s why we interview members each month to find out more about how they approach life.  This month we are pleased to feature prelado, a three-star member from Medellin, Colombia.

1.  What gives you hope?

My age (I'm only 67) and, of course, my grandchildren.

I hope I will live until I'm 80 to see my three granddaughters (two of whom live in the US) and one grandson (who, along with his sister, lives here in Colombia) grow to be excellent citizens in this world, hopefully at the university and with the great charisma I never had.

I really don't care much about my disease, but I'd love to see some sort of relief for my slowness, and I hope my hands won't ever tremble, even though I'm aware that Parkinson's is progressive.

2.  What was the highlight of your holidays?

Normally I do very little on these days. I try, as usual, to be quiet, especially now that I'm going through this "ordeal,” which is a very unpleasant experience! So there was no highlight, as such. I didn't go to my oldest brother-in-law's home (beautiful house and my wife's family is great) on the 24th because it was too cold.

3.  Do you have any resolutions or goals for 2011?

My goal for this year is to take good care of myself. 

I plan to eat well (mainly fruits), take my medicine on time and do exercise as necessary: practice yoga in my house and with my group where we all meet, go to the gym three times a week for at least one hour, and walk for one hour around my place when it does not rain.

If it does rain, I have an old treadmill (loaned and noisy, but it's great when it rains) in my apartment, which I use when it’s raining and before going to bed.  I do some stretching, mainly with my legs and arm muscles and my neck, which hurts once in a while.

I would also like to do some volunteer work.  Staying at home just watching soccer games on TV and going onto the Internet to play games and check my email - all of this is driving me nuts.  

4.  What are you most interested in learning from other patients this year?

Of course, how they're doing with their medicine, mainly if it is the same as mine.

WHAT’S NEW AT PATIENTSLIKEME

What a year!  To see how far we’ve come as a community, check out our latest blog series – “Year in Review” – which reflects on the strides we made in 2010 from a technology, marketing, research & development, business development and patient experience perspective. 

From site improvements to staff expansions to published studies, a lot happened last year, and it could not have happened without you.  What’s ahead in 2011?  Our leaders plan to tell all on our blog.  Sign up here to receive new blog posts instantly via email.  Or simply follow our blog posts on our Twitter and Facebook pages. 

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 January:

• Have you been hospitalized due to your condition?  Record it!  We’ve now added a new hospitalization chart to your profile, allowing you to enter your date of admittance, date of discharge and reason for hospitalization, including the main symptom involved.  That way, you can keep a detailed visual log of all of your hospitalizations at PatientsLikeMe.   Create your hospitalization chart today.

• You asked, and we listened.  Due to your feedback, we’ve made it possible to stop monitoring certain conditions listed in your PatientsLikeMe history (for example, a condition that you had in the past but do not experience currently).  If you’d like to stop charting a condition – and thus stop receiving any reminders from us about it – simply indicate this at the bottom of your condition history. 

• Curious how your condition is impacting your quality of life?  Now you can pay close attention.  Once available to only the Organ Transplants, HIV and Epilepsy Communities, the Quality of Life (QOL) Survey is now available to everyone.  (Check out what it looks like here.)  Take this short survey regularly to see how your social, mental and physical well-being is changing over time. 

• It’s all sorted out now.  Thanks to a recent upgrade, you can now put the charts on your profile page in any order you like.  Simply drag the charts to move them or use the number boxes provided to indicate your preferred order.  And you only have to do it once.  The site will remember your sorting preferences so that you see the same order every time you visit your profile page.  Learn more here.