A Good Resource for all things Parkinson’s

You can’t control the wind, but you can adjust your sails.

Yiddish proverb

I just saw this post on Parkinson’s Women Support about a site called Parkinson’s Patients Support Groups.  Although it is based in the Bay Area, there is a lot of good information about Parkinson’s organizations, the latest news on PD and clinical trials.  A similar sight with resources in the LA area is The NeuroCommunity Foundation  which has support groups and other services in the Valley and points north.

In addition, I was informed this morning that I have been featured in a testimonial on the Parkinson’s Disease Foundation website.  One of the goals of the Women & Parkinson’s Initiative conference that I attended is that participants will reach out to other women with Parkinson’s.  I will be planning an event in the spring for Women with PD living in in Los Angeles along with Jennifer Parkinson, who also attended the conference.  If you are a woman with Parkinson’s or know a woman with PD living in Los Angeles or the Valley, please contact me at twitchywoman18@gmail.com to be put on our email list.  You will not want to miss this exciting event.  More info to come.

Finally, a note from Parkinson’s Action Network.  Take the FDA Survey on Parkinson’s by Oct. 30
There’s still time to join more than 2,400 people with Parkinson’s and their caregivers who have taken the community-wide survey on Parkinson’s disease. Learn more about the survey here.

Tracking PD via iPhone

This morning, I came across the following article in the Parkinson’s Action Network email:

This Phone App Lets You Contribute To Research On Your Own Disease

http://www.huffingtonpost.com/entry/this-phone-app-lets-you-be-part-of-research-on-your-own-disease_55b79fffe4b0a13f9d1a37f5

Being curious about any new way to track my symptoms, I read the article.  It turns out that the app they are talking about I have already used.  You can find it at http://parkinsonmpower.org by Sage Bionetworks.

I eventually stopped using the app because I found it was incredibly repetitive and boring.  The tasks never vary day to day.   I am sure the data that is gathered is helpful for researchers.  But for me, it did not seem worth the time required each day.

I found several other Parkinson’s apps when doing a search in the app store.  Have any of you used any other Parkinsons apps? If so, what did you like or not like about them? Is there anything you would recommend either for iOS or Android?

And please don’t forget that next Friday is the First Friday Free-For-All.  This is your chance to be heard.  Please reply to twitchywoman18@gmail.com

A possible breakthrough in PD treatment, Boxing and more

A few posts from the Parkinson’s Action Network.

Did you know that there is a Congressional Caucus on Parkinson’s?  The Congressional Caucus on Parkinson’s Disease was created to educate Members of Congress about Parkinson’s disease issues and to inform them and their staff about the latest developments in Parkinson’s research and care.  Led by its Co-Chairs, more than 150 members of the Congressional Caucus on Parkinson’s Disease work together to support the needs of our community in the hopes of finding better treatments and a cure for Parkinson’s.  They are our champions, and we are grateful for their commitment and dedication.    To find out if your Congressperson is on the list, go to http://parkinsonsaction.org/our-work/congressional-caucus/caucus-list-2/

Contact your Members of Congress today and ask them to show support for the Parkinson’s community by joining the Congressional Caucus on Parkinson’s Disease – or just take a minute to say thank you! Take action!

Exciting News!!!!!

Researchers in Singapore, working with Harvard University, have found that anti-Malaria drugs may have the ability to improve the lives of those of us with PD.  Read on:  http://www.cnbc.com/2015/07/15/potential-parkinsons-cure-unveiled.html

And finally, a video from Rock Steady Boxing in San Francisco.  For those of you who have not tried Boxing yet, what are you waiting for?  And to the women in Los Angeles, why aren’t you joining me at boxing at BoxNBurn in Santa Monica?  It is fun and an incredible workout.  (http://abcnews.go.com/WNT/video/parkinsons-disease-sufferers-fight-reclaim-lives-boxing-therapy-32405175)