Wow, another week and we start a new year! So much has happened in the last year on the personal front and in the Parkinson’s world.
It has been a good year for Mr. Twitchy and me. We welcomed our fourth grandchild in April. My Parkinson’s has remained fairly stable since being diagnosed about 10 years ago, for which I am eternally grateful. So other than the usual aches and pains of growing older or as a result of stupidity on my part for thinking that I can still do things I did at 20, (we don’t want to talk about that), life is pretty good. Mr. Twitchy had back surgery in July and is looking at replacing knees or hips or some other joint sometime in the not too distant future. None of this stopped us from going on adventures to Israel and Iceland this year, although it may have slowed us down a little.
In the Parkinson’s world, we are busy planning our trip to Japan and the World Parkinson Congress in June. I am looking forward to hearing about the latest research on PD. There are so many new theories that are being investigated about the causes of PD, where it starts in the body and why, as well as new breakthrough treatments that are in the final stages of clinical trials. Some of this research is going on in Kyoto right now, so my hope is that we will hear the latest from those doctors and scientists doing the research when we are there.
One project I have been involved in is the Parkinson’s Foundation’s national effort to address long-standing gender disparities in Parkinson’s research and care through the “Women and PD Teams to Advance Learning and Knowledge,” or “Women and PD TALK” project. I have been honored to be the co-chair this project. We held 10 forums around the country in the last 12 months, bringing together women with PD and caretakers, doctors, therapists and other related professionals. A final national forum in Houston last October brought together the chairs of the local forums along with national leaders with the goal to create an action plan for the treatment and care of Women with Parkinson’s, which will be published in the next few months, in time for the WPC.
Trying something new for sleep:
My daughter suggested that I try a weighted blanket for sleep. I am trying out the Brookstone Nap Weighted Blanket and will write about my experience with it in the next few weeks. There are a lot of choices and things to consider when buying a weighted blanket so I want to get some more information before I write about them.
Some good news just off the press:
Acorda Therapeutics, Inc. today announced that the U.S.
Food and Drug Administration approved INBRIJA™ for intermittent
treatment of OFF episodes in people with Parkinson’s disease treated
with carbidopa/levodopa. OFF episodes, also known as OFF periods, are
defined as the return of Parkinson’s symptoms that result from low
levels of dopamine between doses of oral carbidopa/levodopa, the
standard oral baseline Parkinson’s treatment.
Finally, I have been approached by several different bloggers this past year for interviews . The latest was published this week by Kai Rosenthal on her blog a simple island life. Kai lives in Honolulu, and blogs about PD, lifestyle, food, fashion and other things she loves. It is an interesting mix of ideas that she puts together beautifully in her blog. I hope you enjoy it.
You can find links to other interviews and more by clicking on Press at the top of this page.
Looking ahead to 2019, I wish all of you a very wonderful, healthy new year, with lots of good news in the PD world. Merry Christmas and Happy New Year!