MONTHLY MUSINGS

Profiles are the foundation of PatientsLikeMe. They are the "language" of the site because they are how we share and learn from one another. The information shared in your profile is used to create Symptom Reports and Treatment Reports that everyone can use to learn, in detail, about how others have dealt with their conditions.

Your profile helps us all see the effects of the actions you have taken. It's one thing to think a treatment is helpful, but we can get a much better measure of this if we look at how our PDRS or specific symptoms have changed as a result of a particular treatment.

This information - the treatment details, the severity levels of symptoms, the current and historical PDRS levels - are the crux of how the site works. It is how we can all measure claims of efficacy or harm. You have learned a great deal in your PD journey, and we thank you for sharing that in your profile, or in other words, in our shared "language."

--Tim Horgan, Community Manager

JOIN THE CONVERSATION

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

How to live well with Parkinson's
What does it take to live well with PD? Do you have to fight the emotional challenges just as much as the physical ones? Explore the role of exercise, outlook and more.

Using simple weighted devices to relieve dyskinesia
A member shares how applying pressure to his shoulders stopped his dyskinesia. Have weights, weighted vests or ankle weights improved your symptoms? Add your story.

The hardest adjustments following diagnosis
A newly diagnosed member asks others to share what they learned and struggled with in the immediate period following diagnosis. Recall your first couple months as a PWP.

Alternative treatments for insomnia
Beyond prescription medications, how can you address sleeplessness? Discuss alternatives such as light therapy, melatonin, audio books, avoiding caffeine and more.

GETTING TO KNOW YOU

At PatientsLikeMe, we believe in getting to know the person, not just the "patient." That's why we interview patients each month to find out more about how they approach life. This month we are pleased to feature SCRABBLE37, a three-star member from Solebury, Pennsylvania.

1. What gives you hope?

Let us define hope. The dictionary says:

A. a feeling of expectation and desire for a certain thing to happen
I have an expectation and desire that this year we will see progress on two fronts concerning Parkinson's disease, namely a clearer understanding of the complexity and the translation of these new findings into more efficient and targeted treatments.

B. a person or thing that may help or save someone
Starting with my brother-in-law, Paul Greengard, Nobel Laureate, and ending with my two MDS, Dr. Claire Henchcliffe and Dr. Jayne Wilkinson, everyone at PADRECC- Philadelphia and the research labs that are intertwined with the above. I cannot list all those that do help...

C. grounds for believing that something good may happen
I have witnessed the dedication and energy put forth by the researchers and the many organizations that are focused on PD. The sharing and caring that seems unusual in this world we live in with the omnipresent greed factor always lurking in the background (and foreground).

D. archaic a feeling of trust
I trust that the efforts will bring about a closure between treatment and cure. This may not happen this year, but with all the worldwide effort, it will happen.

E. wanting something to happen or be the case
Wanting and knowing that there are dedicated people who are looking for a road to the cure.

2. What are your resolutions for 2010?

To be a better person to myself. That means learning to exercise on a regular basis. Doing all I can to stem the tide of progression. Being there for all of those people I know who need attention and caring. Enough with "please don't share - I don't care." I care.

3. What's the most impulsive thing you've ever done?

It is hard to say which is the most impulsive, but I'll go along with getting on a Northwest jet from Minneapolis to New York to pursue the most unexpected opportunity of my life, the courting of my wife. I finally won. A wonderful story that started when we were young children and had to be continued later in life.

4. What would you like to learn from PatientsLikeMe and its members this year?

I would like to see Magda and Pete realize they are on the same line (LOL). I would like to see PatientsLikeMe broaden its base of contributors from the medical profession, as I believe they need to be part of the patient's side and learn. After all, they are only practicing medicine - no one has got it exactly right all the time, yet. I would like to see every member give and take on the forum. It is there for what bothers us, pleases us and ails us. We are all PWP - it is a family.

WHAT'S NEW AT PATIENTSLIKEME

• Hopefully by now you've all had a moment to reflect on what happened in 2009. We did exactly that with our recent "Year In Review" blog entry. Don't miss this inspiring recap of all of the community milestones, research undertakings and business strides we achieved over the last year.

• Winter has to end sometime (thank goodness), and when it does, we'll be ready. We're continuing our sponsorship of "Team PatientsLikeMe" at walk/run events this year, and we'll also be rolling out updated Tell The World materials for use at these anticipated events. Look for more details in the February newsletter.

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:

• Think you're experiencing a treatment side effect? You can now report it at PatientsLikeMe. Your side effect will display on your profile along with your symptoms, but when you roll over it, it will show which treatment it's associated with. Hopefully this will give us all a better understanding of what's a symptom...and what's a side effect. Ready to report? There are two ways:
     o Enter it as a symptom, and then answer the questions about when it started, how severe it is and whether you think it was caused by your condition or a treatment. If you believe it to be a side effect, you can then select which treatment you think is responsible.
     o Alternatively, you can add a side effect to an existing treatment on your Treatment History page. Just click "Report new side effect" under Actions for that particular treatment.

• Better tagging, better forum searches. We've implemented an automatic "Did you mean....?" tag warning that suggests alternatives when you are tagging a forum post. The goal is to reduce misspellings and consolidate tags, as we've found that tags are most helpful when they can be used repeatedly. Let us know how the new "hint" system is working for you.

• We've added a guide to your Treatment History page. Check out these helpful instructions on what you can do...and where to do them! Click on "Show Guides" to get started.