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WELCOME TO OUR LIBRARY
OF RECOMMENDED BOOKS
and
PUBLICATIONS
What We Are Reading -and- Where To Get Them |
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The following books and publications have been recommended by members in our support group.
You can find these at your favorite book store, your favorite web site for ordering new and used books, directly from the publishers listed, or links by us.
Do you have a Book / Publication, Video, or Web Site you would like to recommend or rate?
If so, please Contact Us and give us your recommendations and your ratings, and we may include them on our website.
Where do you get these books?
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Duncan says reading & learning about Parkinson's is important!
Photo by Dr. Ben Herz
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Navigating Life with Parkinson Disease (Neurology Now Books)
by Sotiros Parashos, MD, PhD
"Here is a marvelous guide for anyone affected by Parkinson's disease--patients, caregivers, family members, and friends. Containing the most up-to-date information on the disease, one of the most common neurological disorders, it discusses the available treatments and provides practical advice on how to manage the disease in the long term. Emphasizing life-style adjustments that will provide a better quality of life and moderate the burden for patients and their loved ones, the book answers many questions and clarifies misunderstandings regarding the disease. Written by two experts on Parkinson's disease and a freelance journalist, the book is approachable and easily understandable. Question and answer sections are provided, while "hot topics" are highlighted for easy visibility. The authors have also included true patient stories that will both inspire and instruct, and they have addressed several topics often not mentioned in physician-directed disease management, such as how to talk to family and friends about one's life with Parkinson's."
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Young Onset Parkinson's Disease Handbook
"If you are young and have Parkinson's disease, you and your family are likely to have numerous questions. How will Parkinson's affect you and those you care about, and how might you have an impact on it? The American Parkinson Disease Association (APDA) and our National Young Onset Center are here to provide you with the education and support you need in order to make important decisions about your health and your life."
"To answer many of your questions, were are pleased to make our Young Parkinson's Handbook available to you at no cost. Since our founding in 1961, APDA has been diligently working to "Ease the Burden -- Find a Cure" for Parkinson’s disease through research, patient and family support, and education."
The above is taken from the American Parkinson Disease Association (APDA) website at this link http://tinyurl.com/c5hzp3n where you can obtain the handbook.
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"Shaking Up Parkinson Disease: Fighting Like a Tiger, Thinking Like a Fox" [ Available in Paperback] by Dr. Abraham Lieberman -- This book explains Parkinson's disease--how it's recognized, what causes it, who gets it, when and how to get help, and much more. Available on Amazon at a very low price.
One review of this book - "This book explains Parkinson's disease--how it's recognized, what causes it, who gets it, when and how to get help, and much more."
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"Love Is Two People Talking" A Novel by Charles H. Banov, M.D.
This book is a novel about a man with Parkinson’s disease and his relationship with family and friends, especially his granddaughter with Rett’s disorder. The book is based on Dr. Banov’s own life experiences living with Parkinson’s disease and his relationship with his daughter who has Rett’s disorder.
"Sam Geller is an independent, 80-year-old pawnbroker enjoying his life and freedom until he is diagnosed with a debilitating disease that forces him to move in with his son, daughter-in-law and grandchildren. In constant contact with his family, especially his granddaughter Peggy who suffers from a developmental disability, Sam realizes the importance of communication between family and friends. This heartwarming story examines a myriad of emotional issues including old age, alienation, physical illness, suicide and one's relationship with the Creator."
A very good book to start a conversation about Parkinson's with your family, friends, neighbors or anyone.
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"Parkinson's Disease for Dummies" by Michele Tagliati, MD - Gary N. Guten, MD, MA - and Jo Horne, MA
"If you or someone you love has been diagnosed with Parkinson’s Disease you’re probably wrestling with fear, despair, and countless questions about the future. It’s brighter than you think. In Parkinson’s Disease for Dummies, you’ll discover how to keep a positive attitude and lead an active, productive life as this user-friendly, guide pilots you through the important steps toward taking charge of your condition."
Note: Carol and Dottie both have this book, and found this book to be a winner!
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"Take Charge of Parkinson's Disease - Dynamic Lifestyle Changes To Put YOU In The Driver's Seat" by Anne Cutter Mikkelsen with Carolyn Stinson
This was an interesting book to read because it presented multiple subjects and topics related to living with Parkinson's.
The first part of the book begins with a brief introduction as to what Parkinson's disease is and a general overview of its causes, signs, treatments. The reader is introduced to the touching and sometimes humorous personal story of Ann and Mike Mikkelsen; and how they both have reshaped their lives to accommodate Mike's needs related to his PD. We learn how Mike, an award winning potter and sculptor, has skillfully adapted his art and lifestyle to accommodate his advancing stages of PD.
One of our members said "As a caregiver myself, I appreciated and enjoyed reading about how Ann (the primary caregiver) retrained herself to provide the mental, emotion, and physical skills necessary to help Mike. She tells about how and she and Mike have learned to cope and accommodate his advancing stages of PD. Ann shares some of her personal emotions and how her life has changed as a result of Mike's PD."
The second part of the book covers nutrition. Utilizing her skills as a former chef, Ann tells about redesigning her approach to food to help support Mike's nutritional needs. She provides many recipes that shows the importance of brain healthy fruits, vegetables, spices and herbs and optimal wellness. I tried some of the recipes from the book, they were simple, easy to prepare (no special culinary skills required), and tasted very good.
To quote from this book - "The key to success in living with Parkinson's disease is implementing an entire lifestyle approach that includes good nutrition, exercise, stress management, and using the lowest effective doses of medications."
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"Navigating Smell and Taste Disorders" by Ronald DeVere, MD, and Marjorie Calvert
Are You Still Enjoying Your Favorite Meals? If not, you are not alone. As many as 14 million Americans over age 55 have trouble smelling and over 200,000 people visit doctors each year for smell and taste problems.
Changes in the ability to smell and taste can be caused by a simple cold or upper respiratory infection, but they may also be among the first signs of neurologic disorders such as Alzheimer's disease, Parkinson's disease, and multiple sclerosis, and it is often a result of head trauma—but smell and taste can also be affected by a simple cold or upper respiratory infection. Smell and taste disorders affect a person's ability to enjoy food and drink and may result in decreased appetite, weight loss, and too much added sugar and salt in the diet. In severe cases they may lead to depression. Smell and taste problems can also interfere with personal safety, limiting the ability to notice smoke and potentially harmful chemicals and gases.
In addition, the book includes 36 patient-tested recipes that will help you reconnect with the pleasure of food. Navigating Smell and Taste Disorders is available from all major booksellers.
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"Life With A Battery - Operated Brain: A Patient's Guide To Deep Brain Stimulation Surgery For Parkinson's Disease" by Jackie Hunt Christensen
While the author provides firsthand knowledge of the procedure commonly referred to as DBS, she also provides a wealth of practical and technical information. Jackie offers a step-by-step look at her own journey, as well as providing information on a typical evaluation process, medical statistics, questions to ask neurosurgeons, opinions from other DBS patients, the programming process for DBS, and much more. This book is a must-read for those considering DBS, and for their caregivers.
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"JADA Article/Paper - Parkinson Disease: Systemic and Orofacial Manifestations, Medical and Dental Management" by Dr. Arthur H. Friedlander, et al
While this article is a technical dental article, it is easy to read and contains excellent information for every Parkinson patient, their dentist or dental technician. Not only does it contain important information about dental care, it also contains a wealth of information about Parkinson's disease. This paper is a must read BEFORE your next dental appointment!Click Here to view the PDF version of this article
[Permission to reprint given by Doctor Arthur H. Friedlander 1/28/10]
Reference: Journal of the American Dental Association paper written by Arthur H. Friedlander, Michael Mahler, Keith M. Norman and Roland L. Ettinger - 2009:140:658-669 (October 10, 2009) www.jada.ada.org
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“Passages In Caregiving” by Gail Sheehy
A review for this book states “Gail Sheehy brings to light an issue that many face, not only caregiving for an ill loved one but she also addresses challenges that are common to many baby boomers who after taking care of their kids and have emptied the nest, need to care for aging parents.” The majority of reviews for this book were positive.
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“Why Does Aunt Lucy Shake?” A Book For Children About Parkinson's - by Elizabeth Gray
In her book, Elizabeth Gray presents Parkinson’s disease in a straight forward, factual and easily understood way. Elizabeth explores and explains many of the clinical and social aspects of this common condition. This book provides an excellent introduction for young reader to Parkinson’s disease.
Please contact Elizabeth Gray at Email: liz@elizabethgray.net -- Web site: http://www.elizabethgray.net/ -- The current conversion price of the book is $5.25 USA and $5.95 AUD (Australian)
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"Port in the Storm: How to Make a Medical Decision and Live to Tell About It" by Cole A. Giller, MD, PhD
Dr. Giller has been medical director of the Baylor Radiosurgery Center at Baylor University Medical Center in Dallas, Texas. He is now the Director of Stereotactic and Functional Neurosurgery; Clinical Professor, Department of Neurosurgery at the Medical College of Georgia Click Here for More Information on Dr. Giller
In addition to being a neurosurgeon, Dr. Giller is a cancer survivor, and has written the book "PORT IN THE STORM: How to Make a Medical Decision and Live to Tell About It". He shares his experiences, using his compassion, understanding, and medical knowledge to present an empowering six-step program for making a medical decision that’s right for you. Lifeline Press ; ISBN: 0895261324 - Paperback - 320 pages (January 2004) $16.95 - Available on Amazon.com
Here is a six step summary from Dr. Giller's book for deciding between complex medical options Click Here
A review from one of our members - "I really recommend this book. Dr. Giller wrote this book from his experience as a cancer survivor and neurosurgeon. Even if you never face a huge decision, it provides helpful information for simple day to day managing of your overall healthcare."
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"The Many Faces of Parkinson's Disease" by Terrie Whitling-Starr
South Carolina author, Terrie Whitling-Starr is 54 years old and has had Young Onset Parkinson's since she was 28. Determined to find a way to live with PD, Terrie has had a pallidotomy and bilateral DBS. Her book is a collection of short stories that help show how she has learned to live in harmony with PD.
Copies of the book, "The Many Faces of Parkinson's Disease" - ISBN# 978-1-4357-0860-0 can be purchased directly from Lulu.com -or- by using the ISBN number when placing an order at any bookstore.
A member wrote: "I liked this book and would recommend it. Terrie writes about the serious side of having Parkinson's; and she also writes about the funny and humorous things that have happened to her because of Parkinson's. This book is an easy read and provides insight from a patient's point of view. As a caregiver of a PD patient, it has helped me to appreciate what it is like to live with PD."
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"Parkin-son's Spaces: How one man, facing Parkinson’s,views everyday life" by Timothy L Reeves
This is a book written by a local South Carolina author, Timothy L Reeves an Irmo, S.C. native. This book is about taking the plain waters of our lives and turning them in to joyous new wine. Concentrating on our "sunshine" rather than our "limps". Enjoyable reading. Click here to purchase from Amazon - from Alibris (new and used books) and from Cokesbury Christian bookstore
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"You The Smart Patient" An Insider's Handbook for Getting the Best Treatment by Michael F. Roizen, M.D., and Mehmet C. Ox, M.D.
This book shows you how to take control of your own health care and deal with all matters that may come up when facing a medical situation. Click here for ordering this book at Free Press Publishers
One of our members said that this book is well worth the $$$'s for full price even if you don't have major medical problems. Some of our members found this book at Amazon at a discount price.
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"The Empowered Patient" by Dr. Julia A. Hallisy
It has been shown that having patients and their advocates participate in the health care process leads to better outcomes. This book was written to educate and inform the reader about specific skills they need and action steps they can take to ensure that they receive safe, high-quality medical care. Dr. Hallisy says that "The reality is that patients and their advocates can have a powerful, even life-saving influence on the healing process."
To order this book http://www.theempoweredpatient.com/
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"Parkinson's Disease - 300 Tips For Making Life Easier" 2nd Edition by Shelley Peterman Schwarz
Filled with creative tips and techniques for everyday living with Parkinson's. This book contains a wealth of ideas, information, and wonderful resource lists for the Parkinson patient and also for the caregiver. Published by Demos Medical Publishing, 386 Park Ave South, Suite 301, NY, NY 10016 - www.demosmedpub.com
"I'd definitely include it on the stack of PD books you need to read and own. This book is also useful for geriatric and disabled patients as well." From one of our members
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"Danger Zone" by Dennis R. Steele & Edward C. Watters III, MD
Unlock the secrets of nursing home medical records and protect your loved one. You can obtain this book directly from the web site www.MemberoftheFamily.net
From one of our members "If you have someone in a nursing home, this is an excellent reference book to use."
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"Tai Chi for Energy and Renewal - Living Well with Parkinson's Disease"
DVD distributed and ©2007 by Boehringer Ingelheim Pharmaceuticals, Inc. - Product #MP44893B
While this isn't a book, it is a great DVD for learning how to do Tai Chi. As part of Boehringer Ingelheim's educational programs and tools for people with Parkinson's, caregivers and physicians; a "Tai Chi for Energy and Renewal" DVD was developed, which was designed, along with the help of people with Parkinson's, to help support the physical and mental well-being of those affected by PD.
To obtain this DVD, contact Boehringer Ingelheim Pharmaceuticals, Inc. at this link and complete the form for the "OTHER" category, mentioning the title of this DVD and the product number #MP44893B - Some times you can pick it up at a Parkinson's symposium or from a Boehringer pharmaceutical sales representative. It should be FREE!
Boehringer Ingelheim Pharmaceuticals, Inc.
900 Ridgebury Rd,
P.O. Box 368
Ridgefield, CT 06877-0368
Phone: 1-800-243-0127
Amazon.com has this DVD Click Here
For more information about Tai Chi research being done in many places, including Indiana University-Purdue University Indianapolis Click Here
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"101 Questions & Answers About Parkinson Disease" by Abraham Lieberman, MD with Marcia McCall
Authoritative, practical answers to your questions about treatment options, quality of life, sources of support, and much more. To order this book click here Jones and Bartlett Publishers
Dr. Dale Hamrick says that this is one of the best books on Parkinson's out there.
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"Parkinson's Disease the Art of Moving" by John Argue
An exercise program to: increase flexibility, strength, balance, and coordination - improve communication, voice power, and speech clarity - delay the progression of symptoms and take steps toward leading a fuller life. To order this book click here New Harbinger Publications, Inc.
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"Always Looking Up - The Adventures of an Incurable Optimist" by Michael J. Fox
Michael writes about the hard-won perspective that helped him see his life's challenges as opportunities.
From a member - "Another good book by MJF - different from his first book. An easy read. This book is not just for Parkinson patients. Opens the door and lets us see the PD patient's emotional, physical and psychological challenges as PD progresses. The book is sometimes serious, positive and funny; while chronicling the life of a PD patient. A good read about what it is like having Parkinson's from the patient's point-of-view. Good for caregivers to read."
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"Lucky Man - A Memoir" by Michael J. Fox
Actor Michael J. Fox recounts his life and dealing with Parkinson's disease after diagnosis. All proceeds/profits of this book are being donated to The Michael J. Fox Foundation for Parkinson's Research.
Visit the web site at www.michaeljfox.org Published by Hyperion
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"Parkinson's Disease - The complete guide for patients and caregivers" by Abraham N. Lieberman, M.D. and Frank L. Williams
Features information from a complete support team - Advice on drug therapy, diet, and exercise - An A to Z Guide to symptoms and side effects - Options for insurance and financial aid - and A state-by-state resource guide. To order this book click here Fireside of Simon & Schuster Publishers
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"Living Well With Parkinson's" by Glenna Wotton Atwood with Lila Green Hunnewell
An informative guide for Parkinsonian's and their loved ones written by a Parkinson patient. Ms Atwood writes about her own experience and how she and her family learned to live successfully with Parkinson's. This book has excellent resource information in the Appendices. To order this book click here Published by Wiley
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"Practical Pointers for Parkinsonians" by Lucille Carlton [Revised by Caludia Espinoza and Lucy Irizarry]
A useful resource guide with information about equipment and aids that will help you with the activities of daily living with Parkinson's. Note: This is a small paperback book, but it has very useful resource information in it. Published by the National Parkinson Foundation, Inc. - www.parkinson.org
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Books About Diet, Nutrition, and Parkinson's
All three of the books listed below by Kathrynne Holden are excellent for PD patients who have problems with nutrition and weight management. Click Here to go to her website where you can now ask Kathynne questions online about Parkinson's disease and nutrition. |
Parkinson Disease: Nutrition Matters by Kathrynne Holden, M.S., R.D.
Holden has created and updated this special FREE NPF publication to bring to the forefront of knowledge issues regarding weight maintenance, protein absorption in patients who take levodopa, and other components of healthful living. CLICK HERE TO ORDER FREE BOOK
This book is partly excerpted from the Eat Well, Stay Well... and the Cook Well, Stay Well... books above. Ms. Holden also moderates "Ask the Parkinson Dietitian" internet forum on the National Parkinson's Foundation web site which allows people around the world to e-mail questions about nutrition for PD patients.
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Eat Well, Stay Well with Parkinson's Disease by Kathrynne Holden, M.S., R.D. - The breakthrough handbook on nutritional issues for Parkinson's patients. Explains a lot of information about problems Parkinson patients have with food, eating, and their medication.
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Cook Well, Stay Well with Parkinson's Disease by Kathrynne Holden, M.S., R.D. - The first-ever cookbook just for Parkinson's patients
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Where We Get Some Of Our Books & Magazines (Some are FREE)
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| Visit Your Local Library - Borrow From A Friend - Borrow From Our Support Group Lending Library |
The SC Center for Disability Resources (CDR) Library is a library of materials, concerned with a variety of disabilities (not just Parkinson's), that are loaned to individuals and families nationwide. There is a wealth of information available. This website is a portal to several other websites, links, and resources on disabilities.
This CDR website has a good list of statewide disability related web sites CLICK HERE
The InfoAble Portal is a great graphic that show you what the CDR is all about - you can use it to see what is available to you.
The library is a collaborative effort between BabyNet/First Steps to School Readiness, the Center for Disability Resources, the South Carolina Department of Disabilities and Special Needs, and the University of South Carolina School of Medicine Library.
The CDR Library consists of books, videos, brochures, and audiotapes covering a variety of disability-related topics.
The Center for Disability Resources Library is located within the University of South Carolina School of Medicine Library on Garners Ferry Road. For more information on how to obtain books and information about the library CLICK HERE
They also have a great SC CDR BLOG that has events, information, and resources regarding disabilities. I recommend that you visit this BLOG to see what is there. They welcome your comments and suggestions about books and videos that you have borrowed, materials that you would like to see purchased, or anything involving the day-to-day operations of the library or even of disabilities in general. CLICK HERE to visit their Blog
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Neurology Now Magazine - An Excellent FREE Resource |
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The December 2012 / January 2013 (Vol 8 - Issue 6) Neurology Now magazine has several excellent articles about Parkinson's Disease.
"Navigating Life With Parkinson Disease" is a book that describes the causes, symptoms, treatments, and complications of PD and suggests ways to manage the condition. The book is available from Oxford University Press (oup.com), Amazon.com, and through local booksellers. Here is a sample excerpt from the book http://tinyurl.com/cgdpeov
Article on "Not Just Tremor: Recognizing depression and other non-motor symptoms of Parkinson's disease" by Tom Valeo -- Excerpt from this article "PD also causes an array of non-motor problems. These symptoms may elude detection by doctors and even by patients themselves. Many of these symptoms seem to affect the mind more than the body; in reality, they illustrate the intimate connection between the mind and the body. For example, depression, anxiety, irritability, and social withdrawal are all recognized now as non-motor symptoms of PD. Experts believe they are caused not by the person's reactions to having PD but by the disease itself and how it changes the physical brain." Click on this link to read more on this topic
Another article that was informative is "Be Prepared!: How to make the most of office time with your neurologist" by Avitzur, Orly M.D., M.B.A. Excerpt from the article "Since you may have to wait longer these days to get seen for a shorter period of time, making the most of your office visit is critical. That means arriving prepared to your first visit so that office staff won't waste a moment searching for results or reschedule you because vital information is missing and needs to be tracked down." Click on this link to read more on this topic
The paper version of "Neurology Now" magazine is FREE to those with Parkinson's disease or their caregivers. Visit their website and click on the subscription link.
Neurology Now magazine is now available for iPads - FREE - The Apple app is free, and you can download it today. On your iPad home screen, open the Apple App Store icon and search for “Neurology Now.” Tap “Free” to install the app on your iPad, and then download the issues. Prompts in the app library will let you know when each new issue is available.
For more books, periodicals, magazines with Parkinson's resource information click here
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The Parkinson's Disease Foundation has a "very good" FREE newsletter called the NEWS & REVIEW that comes out quarterly. The articles are timely, informative, and interesting. You can go to this link http://www.pdf.org/en/pdf_newsletter and sign up to receive this FREE newsletter.
In the current Fall 2012 issue there are two very good articles - "Driving and Parkinson's: Balancing Independence with Safety" and "Going to the Hospital With Parkinson's: How to Be Prepared".
The "hospital" article has a list of things that you need to take to the Emergency Room or to the Hospital. Many of the items listed are already available in the "AWARENESS IN CARE" FREE kit that you can order. Click here to read how you can order this FREE KIT.
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Northwest Parkinson's Foundation
The Northwest Parkinson's Foundation has an Interesting list of Parkinson resources. While some of these resources are outside of the United States, they provide a wealth of PD information. Click Here
You can also sign-up for their free Parkinson's Post, a bi-monthly newsletter with the newest therapies, insights, etc. SIGN UP
You may want to surf around on their website, they have online archives of all the past issues of the Parkinson's Post, which make interesting reading, and other interesting information.
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Order Popular AARP Booklets - FREE
AARP offers a number of free booklets on topics that are of special interest to Americans who are 50+. Topics like health insurance, grand parenting, Medicare, financial planning, staying healthy, and consumer protection. You can request a free print copy of these popular AARP guides.
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Federal Citizen Information Center (FCIC) - Your tax dollars at work!
For over 35 years, the Federal Citizen Information Center (FCIC) has been a one-stop source for answers to questions about consumer problems and government services. Consumers can get the information they need in three ways: by calling toll-free 1 (800) FED-INFO; via their complete listing of printed publications (many are FREE & prices are reasonable); or through the information posted on FCIC’s family of web sites. For the listing of HEALTH publications Click Here - the majority of these health publications are FREE or very low priced.
The FCIC’s family of web sites includes the following sites.
www.pueblo.gsa.gov - The main Federal Citizen Information Center web site.
www.USA.gov - All you ever wanted to know about US Government services and agencies.
www.kids.gov - Find links to government and other kid's sites - grouped by age and subject. Interesting information for learning and having fun for kids; and also for teachers, parents, grandparents, just about anyone!
www.consumeraction.gov - Have a consumer question or problem? The Consumer Action Resource center may be the right place to find the answers - Information on how to be a smart
shopper, helpful tips about buying a
car or home, preventing identity theft, understanding credit, filing a consumer complaint, and much more.
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