We talked to Lianna Marie, the author of two new Purdue University Press books, The Complete Guide for People With Parkinson’s Disease and Their Loved Ones and Everything You Need to Know About Caregiving for Parkinson’s Disease.
The Complete Guide serves as the go-to book for comprehensive, easy-to-understand information for all Parkinson’s patients and their loved ones, and Everything You Need to Know provides an essential resource full of useful information for all caregivers of those with Parkinson’s disease.
Q: What about your experience as a caregiver motivated you write these books?
Lianna Marie: My greatest motivation for writing these books was a conversation I had with my mom in her fifteenth year of living with Parkinson’s. She told me back then she wished there was more information available to help her understand and deal with her disease as it was progressing, and written in a way that she could understand (i.e., without medical jargon).
At that point, no one had told us how powerful music could be in helping her mobility, or that there are reasons not to join a support group (there are definitely pros to joining one, but there are also cons), or that sometimes symptoms could disappear just by being really happy. We chatted about these and other useful tips she had learned about living with the disease, and shortcuts she had figured out on her own.
Mom told me she wished she had known these tips earlier, that someone living with the disease could have helped make her life easier, sooner. As a daughter, caregiver, and writer, I felt I could help others like my mom by writing a book that offered practical tips and answered the most pressing questions of someone living with the disease.
Q: How important do you feel it is for patients and family members to get this type of information early? What kind of things does your book provide for those in all parts of their Parkinson’s journey?
Marie: Being informed, or “Parkinson’s literate,” as my neurologist friends say, is imperative not only for people with Parkinson’s but their care partners as well. Having an understanding of the diagnosis process, the motor and non-motor symptoms, as well as other facets of the disease and how they may affect you, is essential to learn early on so you can make more informed treatment decisions.
Both books aim to walk a person affected by PD from diagnosis to the end-stages of the disease and give practical information and tips on how to manage the various challenges that a person with Parkinson’s may face.
Q: What convinced you to take a whole book to concentrate on the experience of the caregiver?
Marie: The caregiving book resulted from many years of witnessing the toll caring for someone with Parkinson’s can have on a person if they don’t have the right help and tools. It was initially inspired by my stepdad, who, while caring for my mom in the later stages of Parkinson’s, unfortunately, neglected to care for himself and suffered burnout and significant health issues. Additionally, I learned (through trial and error) many things about how to better care for my mom and wanted to help others save time and energy by putting them all together in an easy to read book.
My ultimate goal is to help caregivers feel less alone and give them hope that they can make it through this often challenging Parkinson’s journey with their loved one.
Q: What are you trying to provide with these books that those affected by this disease can’t find elsewhere?
Marie: I am amazed at how little information is out there written by people who have first-hand experience with Parkinson’s disease. Most books, as my mom pointed out when she was first diagnosed in the 1990s, are written by doctors, and often don’t deal enough with the specific day-to-day issues people with PD want help with. Through my AllAboutParkinsons.com website and Facebook page, I’ve been able to ask thousands of people with Parkinson’s what their most significant challenges are, how they’ve coped with these challenges, and address them head-on.
Q: What are some steps you’ve taken with the books to make this information as accessible as possible for patients and caregivers?
Marie: By listening to my readers over the past many years, I’ve learned what topics are most important and made sure to include them. I’ve also received many tips from people with Parkinson’s and their caregivers and sprinkled these throughout each book.
As far as the overall structure of the books, I’ve dissected the hard to understand medical information and explained it in layman’s terms. Both books are organized into several sections with shorter chapters so that topics are easy to find and digest. I’ve also included a “words you need to know” section in both books for terms that may be unfamiliar.
Thank you to Lianna! If you would like to know more about these books you can get your own copy or request them from your local library.
You can get 30% off these titles and any other Purdue University Press book by entering the code PURDUE30 when ordering from our website.