Because not all patients have access to a computer or have the ability to tell whether they are obtaining reliable information, we have also reviewed the top 24 patient-oriented books on Parkinson’s disease available from Amazon.com. - Living with Parkinson’s: A guide for the patient and caregiver
- Parkinson’s Disease Handbook: The essential guide for sufferers and carers
- The Parkinson’s Handbook
- Parkinson’s Disease: Your questions answered
- When Parkinson’s Strikes Early: Voices, choices, resources and treatment
- Defending Against the Enemy: Coping with Parkinson’s Disease
- Parkinson’s Disease: The Way Forward
- HOPE: Four keys to a better quality of life for Parkinson’s people
- Parkinson’s Disease & the Art of Moving
- Caring for the Parkinson Patient: A practical guide
- Preventing Falls: A defensive approach
- Understand Parkinson’s disease: A self-help guide
- Living with Parkinson’s disease
- 300 Tips for Making Life with Parkinson’s Disease Easier
- Parkinson’s Disease: Questions and Answers
- Parkinson’s Disease
- Living Well with Parkinson’s
- Parkinson’s Disease: A complete guide for patients and families
- Parkinson’s disease: A guide for patients and families
- Shaking Up Parkinson’s disease
- Diagnosis and management of Parkinson’s Disease
- Literature available from National Parkinson Foundation (NPF)
Each of the books were reviewed and rated for 28 different disease topics in the areas of explanation of disease, treatment, complications of Parkinsonism, co-morbidity, social aspects and quality of presentation. Our review revealed that no single book covered all essential topics. Social aspects of disease were uniformly omitted. These topics included isolation, care giving, pathological behavior, adult protective services and estate planning. Only 40% covered stages of disease progression; only 10 percent provided detailed drug usage instructions, detailed side effect instructions, occurrence of emotional distress and psychiatric symptoms. For the patient and/or caregiver living in an area with minimal access to healthcare, currently there is no comprehensive, detailed guide to Parkinson’s disease that is written in lay language and covers the 28 essential topics. For this reason, the Movement Disorders Program at MUSC is creating A Primer on Parkinson’s Disease, a multimedia self help guide for patients with Parkinson's disease. Sponsored by the Fullerton Foundation, we anticipate its completion in 2006. |
