Day by Day with Parkinson's and Peripheral Neuropathy: PatientsLikeMe Site Is AWESOME

Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Monday, July 23, 2007

PatientsLikeMe Site Is AWESOME

I've spent a lot of time today exploring all the neat pages on the PatientsLikeMe site. I received an invitation to join, and now, I'd like to extend that invitation to all of you. It does involve putting in a lot of medical information about yourself, but I've already done that here, so I decided that shouldn't stop me from joining. I'm so glad I did, as I've already read some posts on the forum that made me feel less strange and alone. I can see that the aggregation of data they are trying to achieve will be a fantastic tool for research and personal information.

So, here's the link:

http://www.patientslikeme.com/

and here's the personal profile I've been working on today.

http://www.patientslikeme.com/members/view/Dirty+Butter

They have it fixed so you can find all members who have the same symptoms, use the same meds, etc. as you.

Labels: "Parkinson's", Parkies, PatientsLikeMe, PWP, Quality of Life, support

2 Comments:

At 7/23/2007 7:51 PM , Jeremy Weiskotten said...

Hi Rosemary. I'm one of the engineers at PatientsLikeMe. Glad to have you as a member, and thanks for the great testimonial! Parkinson's is one of our newer communities, but it's growing fast and we have a lot of great new features on the way (and even more being planned).
At 7/24/2007 4:23 AM , Dirty Butter said...

I'm still exploring the site and finding new things, as it is, so I look forward to any new features you have planned. Thanks for stopping by, Jeremy.

LOL I took a look at your blog, and I have to admit I hardly knew what you were talking about!! And I fancy myself as a pretty knowledgeable computer user. You put me to shame. But it shows on the Parkinson's site, if you have anything to do with the programming of it. It's an extremely well done site.