PD 101: An Introduction to Parkinson’s Booklet
This project will benefit ALL THREE Community Markets as they are PAA's service area for people living with and affected by Parkinson disease.
Receiving a Parkinson disease or Parkinson's Plus diagnosis can be overwhelming for both the individual diagnosed and their family. It can take time to wrap one's head around the news they just received, and one might not have all of their questions answered at that particular medical appointment, or even know what questions to ask at that time. Furthermore, as the disease progresses new concerns and/or questions may arise. This is where our PD 101: An Introduction to Parkinson's booklet comes in.
Parkinson Association of Alberta has in development an informational and introductory booklet on Parkinson disease and Parkinson’s Plus Syndromes titled - PD 101: An Introduction to Parkinson's. This booklet contains information on all aspects of the disease including, but not limited to: motor/non-motor symptoms, summarized treatment options, FAQs, definitions, a Care Partner component, and support and services available. Our plan, to start is to professionally print 2,500 of these booklets to be distributed to across Alberta and Northwest Territories to healthcare professionals (including, but not limited to Alberta's two Movement Disorders Programs, 41 Primary Care Networks, 7 NWT Health and Social Services Authorities, long term care facilities, etc), and people living with and affected by Parkinson disease.
Currently we provide a collection of photocopied information compiled into a blue paper folder (affectionately known as a 'Blue Pack') to hand out to individuals, families, and healthcare professionals. While better than handing out no information at all, this system has become both inefficient and ineffective from a financial, time and usability perspective. To build these Packs staff photocopy the individual pages and then assemble in a process that is both time consuming and costly. And we find ourselves often having to re-do Packs as individuals have misplaced or damaged one or more of the individual pieces of paper contained within.
Who Will it Benefit?
The biggest beneficiaries will be people living with and affected by Parkinson disease and Parkinson's Plus Syndromes.
Without access to quality information, specialized support, services, programming and education, many Albertans and people from the Northwest Territories affected by Parkinson’s are left to navigate this devastating journey alone. At Parkinson Association of Alberta, we understand how difficult it can be to receive a diagnosis of Parkinson disease or a Parkinson’s Plus Syndrome. There is no one way to deal with it; circumstances and experiences are unique for every person with Parkinson’s, as well as their families. It can be overwhelming; and there may be feelings of anger, confusion, numbness, or sadness. These feeling are typical and it is our mission to ensure people know they are not alone; and that help and support is available.
Ultimately, living well with Parkinson’s requires knowledge and encouragement. And, as Parkinson’s is a progressive disease that changes over time, so too is the individual/families’ need for information and support. This is why getting connected is so important, we work with people and take the time they need to make sure the support they receive is as unique as they are.
Understanding the disease, it's symptoms, treatment options, and what supports and services are available is the start to addressing the psychosocial, mental and physical health needs and subsequently quality of life issues of both the person with PD and their spouse/care partner/family member. This booklet will help people a) better understand and prepare for the Parkinson's journey, b) stay mentally and physically healthier, c) be aware of and access resources, and d) by way of engagement with Parkinson Association of Alberta, develop a network/community of like-minded peers.
Also benefitting will be our healthcare professional stakeholders. With access to this booklet healthcare providers will know they have an informed and professional ally in their communities who can help their patients live better day-to-day lives with Parkinson's.