Parkinson’s Information Resources

It is critical when diagnosed with Parkinson’s disease to become educated as to possible symptoms and treatment options.  As the saying goes “if you know one person with Parkinson’s, you know one person with Parkinson’s.”  This is because Parkinson’s disease can vary significantly from one person to another – not only the symptoms, but their severity and rate of progression.  What are referred to as “Motor” symptoms are common with most everyone with PD.   Generally everyone with Parkinson’s has some level of rigidity (stiffness) and slowness of motion (Bradykinesia).  Tremor is also quite common though not present in all cases.  As the disease progresses balance is frequently also a problem.  Besides the Motor symptoms there are a large number of non-motor symptoms which affect some people with the disease and not others.  Many of these non-motor symptoms aren’t apparent initially but appear as the disease progresses.

 

Treatment options for Parkinson’s also vary from one person to another based on their symptoms, the severity of the symptoms, and other factors.  There are a number of types of medications for treating Motor symptoms with various delivery options.  Levodopa/carbidopa is still the “Gold Standard”, but there are multiple methods now available for administering it.  There are many possible medications for non-motor symptoms.  In many cases the options are limited based on possible negative effects due to the nature of Parkinson’s.  There are also several surgical treatments that may or may not be appropriate depending type and progression of overall disease symptoms.  Finally exercise has been shown to be very beneficial in treating Parkinson’s.  It may be the only treatment that possibly slows the progression of the disease.

 

There is currently a lot of research on the brain in general and Parkinson’s in particular.  There is research on a variety of paths that hopefully will lead to improved treatment options.  There is currently no cure or methods to stop the progression of the disease, but these are goals for the current R&D efforts.  Since knowledge about Parkinson’s and treatment options are changing all the time books are not thought to be the best source of information about the disease.  There is also a lot of non-verified information about treatment options floating around on the Internet that needs to be treated very cautiously.  Our feeling is that the most complete and reliable information about Parkinson’s can be found on the websites of some of the well-established national foundations.  These foundations have the medical expertise and practical experience to provide a wide variety of information about the disease, treatment options and living as well as possible with PD.

The resource information that we think would be most helpful for those newly diagnosed with PD, as well as those who have been dealing with the disease for a number of years, is from four of the national foundations.

Following are online locations of specific information from each of these foundations.

Online Basic Information about Parkinson’s

There is a lot to know about Parkinson’s.  To learn about the disease, causes, early signs, symptoms, diagnosis, and treatment start with these sites.

Publications and Helpful Items

Various written materials are available to download or order a hard copy.  There are also some other items that can be ordered (free in many cases) to help with living with Parkinson’s.

          Digital and print copies can be obtained at ($5.50 charge for print version) https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/

Webinars

The foundations produce videos on experts discussing various aspects of Parkinson’s.  These sites contain information on upcoming topics and archives of past webinars.

Podcasts

You can subscribe to podcasts on various subjects related to Parkinson’s.  Playlists can be found at these sites.

Living with Parkinson’s

General information that can be helpful for someone living with Parkinson’s including such things as managing PD, legal/financial/insurance matters, blogs, and caregiver materials can be found at these locations.

Emails

To sign up to receive emails containing the latest information from the foundations regarding research results, upcoming expert briefings, and events.