The main reason for this website is to help those with Parkinson’s find resources, information, insight, and ways to not only cope, but to actually THRIVE!
When you are first diagnosed so many things go through your head. I know when I was first diagnosed I felt fear. To know it’s a life-long disease and there is no current cure can seem somewhat devastating. However, there is tremendous hope and ways to really make a positive difference in your diagnosis.
Certainly your life will change. You will have to adjust to things. Since my diagnosis in 2011 (and I was symptomatic for at least three years before) my life has changed drastically. It was difficult and I was deeply in the Nile, (oops, I mean Denial). By the way, humor is your best friend at times when dealing with Parkinson’s.
The best thing you, as a person with Parkinson’s (or if you have a friend or loved one with Parkinson’s), is to become educated through the correct resources. Do not go all over the place on the Internet. Trust me, there is more disinformation out there that will mess up your understanding. Stick with known entities (see resources on this website) and go to conferences on Parkinson’s.
Most of all, be proactive. Exercise, exercise, exercise!
SOME RESOURCES: WHERE TO LOOK FOR INFORMATION
National Parkinson Foundation
If you are newly diagnosed, or new to researching the best information on Parkinson’s, here are the best places to look:
The National Parkinson Foundation has a treasure trove of accessible and understandable information.
They have a helpline to call 1-800 4PD-INFO (1-800-473-4636)
They have information on all aspects of Parkinson’s (motor symptoms, non-motor symptoms, young onset, etc.)
(BEST LINK) They have books, newsletters, fact sheets, (many of which you can download as PDFs) and videos you can watch that are easy to understand.
Davis Phinney Foundation
Davis Phinney is a world class bicyclist who got Parkinson’s and started this foundation to make information more available for people with Parkinson’s.
Go to the Davis Phinney Foundation Website and learn a lot. Better yet, they have a big manual that they are constantly updating and they send hard copies out to you for free. Just go to the resources tab from the home page and order your own copy or download them and even watch more videos.. They have recently added a free exercise DVD that you can also order for free.
The Davis Phinney Foundation puts on an awesome one-day conference that is full of great information, activites, and a great way to meet all sorts of people in the Parkinson’s world. To find one near you, click the Events tab on their website.
Here is a video about Davis and the Victory Summits he has all over the country:
In this Davis Phinney Foundation video created for The Victory Summit symposia series, Davis Phinney recounts how he went from notoriety as one of the USA’s top professional cyclists and Olympic medal winners to being an outspoken advocate for living well with Parkinson’s disease, with which he was diagnosed at the age of 40.
World Parkinson Coalition
The World Parkinson Coalition puts on the World Parkinson’s Congress every three years. Lily and I have gone to the one in 2013 in Montreal, Canada and the 2016 in Portland, Oregon. We are looking forward to attending again in Kyoto, Japan in 2019. It’s a fantastic way to learn the basics of Parkinson’s and then go well beyond. It’s a four day conference with people from all over the world. It may seem like a huge gathering, but it’s amazing how quickly you will make new friends and run into them again and again! You have an excellent opportunity to not only listen to some of the lead researchers, practitioners, and people with Parkinson’s all making a difference, you’ll be amazed at how easy it is to actually meet and discuss things with them.
Also, the exhibitors hall is tremendously informative and a great way to find out about agencies and foundations advocating for us, resources available world wide, and access to pharmaceutical companies who want to hear from you even more so than they want to push their product or information.
Our favorite part of the congress is the Wellness Way. This is a fully interactive section of the congress where you can learn about (and actually physically participate in) exercise classes of all sorts (like yoga – even laughter yoga, Thai Chi, boxing, etc.), as well as singing, drumming, or other musical activities. Everything done here is specifically focused on how people with Parkinson’s can do and benefit from the various activities.
They have videos from a contest on life with Parkinson’s – some informational, humorous, touching – all inspirational! One other very interesting aspect of the conference is the poster section. This is where anyone who has something they want to present and inform people about, related to Parkinson’s, can do so and get an audience. They have researchers putting up posters on new things they are finding and trying, they have people with Parkinson’s who have found cool ways of coping (like a guy had a great poster on how racquetball helps him and a number of his friends with Parkinson’s, or a poster on how to be your own advocate when you end up in the hospital. Great stuff at every corner of this large and all-encompassing conference.
Here is a video about the 2019 World Parkinson Congress in Kyoto, Japan in 2019:
Rock Steady Boxing
Rock Steady Boxing – designed for people with Parkinson’s – is a truly a life altering activity. Rock Steady Boxing is based out of Indianapolis, but has locations all across the United States, and now becoming a world-wide effort. Check out their main website here. Find a local chapter. Or, find someone who is qualified and interested in becoming a trainer and have them participate in their training camp. Click here to see a bunch of their won videos. They also have a book selling on Amazon; I Am Rock Steady
Here in Carson City, Nevada we have our own chapter.