Informational Articles & Links
The Chicago Police Department encourages people 60 and older, and people with disabilities of any age, to obtain an Emergency Identification Bracelet.
The bracelet is FREE of charge, and the emergency information provided is kept on file at the local police station of the district in which one resides, under a confidential code number. The code number is inscribed inside the emergency ID bracelet, along with the 24-hour telephone number of the local police station. If the wearer is injured or incapacitated, the confidential information on file will be available for authorities through one telephone call. The goal is to insure prompt and appropriate care; and, in case of an emergency, proper notification will be made to whomever is designated.
Individuals need to provide their local police station with a completed application. The application is available here.
Here are a few of local police station addresses in the vicinity near Northwestern:
National Parkinson Foundation: Education, Research, Information, Referral,
1501 N.W. 9th Avenue, Bob Hope Road
Miami, FL 33136-1494
Michael J. Fox Foundation for Parkinson's Research
PO Box 4777
Grand Central Station
New York, NY 10163
Parkinson's Action Network: Seeks to strengthen funding, legislation, research.
300 N. Lee Street
Alexandria, VA 22314
The Parkinson Alliance: Research.
PO Box 308
Kingston, NJ 08528-0308
Parkinson's Disease Foundation: Education, Research, Advocacy.
710 West 168th Street
New York, NY 10032-9982
212/923-4700 and 800/457-6676
Advancing Parkinson's Therapies: Parkinson's Disease Clinical Trials
National Institute of Health/National Institute of Neurological Disorders and Stroke
: Research and information.
PO Box 5801
Bethesda, MD 20824
WE MOVE™ Worldwide Education and Awareness for Movement Disorders
204 West 84th Street
New York, NY 10024
212/875-8312 and 800/437-MOV2 and 800/675-5752
Awakenings: Resource materials.
International Essential Tremor Foundation
PO Box 14005
Lenexa, KS 66285-4005
Dystonia Medical Research Foundation
One East Wacker Drive – Suite 2430
Chicago, IL 60611-0138
Restless Legs Syndrome Foundation
819 Second Street SW
Rochester, MN 55902-2985
Assisted Living Federation of America
Nursing Home Information
American Association of Homes and Services for Aging
901 E Street N.W., Suite 500
Washington, D.C. 20004
Parkinson's Disease Caregiver's Information
Family Caregiver Alliance
National Alliance for Caregiving
National Family Caregivers Association
10605 Concord Street, Suite 501
Kensington, MD 20895-2504
Lotsa Helping Hands
National Association of Professional Geriatric Care Managers
National Institute on Aging: http://www.nia.nih.gov/HealthInformation/Publications/ExerciseGuide/
Sit and Be Fit: www.sitandbefit.com
Gentle Fitness (video): www.gentlefitness.com
American Physical Therapy Association: www.apta.org
Argue, John. Parkinson's Disease and the Art of Moving. 2000. New Harbinger.
Rosenstein, Ann. Water Exercises for Parkinson's. 2002. Idyll Arbor.
Medicare Hotline and Information
This book is a book of hope for both the newly diagnosed Parkinson's Person as well as a helpful reminder to a better quality of life for those who have had the disease for many years. The writing is succinct and easy to read. Hal outlines the four basics of hope as 1) Help; 2) Optimism; 3) Physician; and 4) Exercise. His personal stories on these four points are candid and powerful. He has experienced some changes in his life as a result of Parkinson's but he remains positive, upbeat and full of vitality. He shares some personal guidelines he now lives by and offers some tips on how to on how to face the challenges that may lie ahead. This is not a lecture on what you should do but merely an insight into what is working for a fellow person with Parkinson's.
Being diagnosed with Parkinson's disease can be distressing, and adjusting to the effects of the disease is often difficult. This indispensable resource for patients, family, friends, and caregivers helps patients rise above PD's challenges by working smarter, maintaining a positive outlook, and conserving time and energy. Organized by subject, the book covers a wide range of topics, including making the home more accessible; dressing aids and simple clothing adaptations; using technology to improve communication; eating and drinking tips for people with difficulty swallowing; mobility and exercise; managing home health care; cars and driving; leisure and recreational activities; travel; and much more.
One of the most frustrating aspects of Parkinson's is that it manifests itself differently in each person, which makes coping with this disease particularly challenging. Nonetheless, it is very important that both Parkinson's patients and their families have access to the most up-to-date treatment including new drugs, surgery and other therapies (diet, speech therapy, acupuncture). This book also provides advice about less clinical but equally important matters such as dealing with health insurance companies and informing employers.
David Zid, an ACE, APG certified trainer, has collaborated with orthopedic surgeon, Thomas H. Mallory, M.D., who is afflicted with Parkinson's disease, in the development of a Parkinson's specific fitness program designed to proactively minimize tremors and improve flexibility, stability, balance and strength. Delay the Disease contains colorful photographs of Zid demonstrating each move, as well as recommendations for exercise frequency, modification and how to adjust the workout as one improves. Parkinson's patients participating in Zid's fitness program notice improvement in walking, dressing and maintaining balance. Exercises are divided into categories (wake up call, walking and balance, cardiovascular, strength, facial and vocal, and night-time stretching.
Neurologists universally recommend making exercise a part of the daily routine of every Parkinson's patient. This book tells people with the disease and their caregivers how to follow that advice. The comprehensive exercise program designed to help readers improve flexibility, balance, gait, and communication. Over 100 photographs clearly illustrate the exercises, which derive from Yoga and Tai Chi techniques and theater movement skills, and encompass a variety of daily activities.
The national medical director of the National Parkinson Foundation has compiled common questions asked by newly diagnosed Parkinsonians. Lieberman is particularly good at telling patients what they should expect from their physicians, how they can select a competent movement disorders specialist, how they can make the most of living with PD, and what they should know about the new advances in medical, alternative, and surgical therapies.
The authors, who were diagnosed with PD in their mid-40's, met on an online discussion list and discovered that the disease was becoming increasingly common in a younger population. Their guide incorporates e-mailings from the members of the Parkinson's Information Exchange network (PIEN), with detailed advice on diagnosis, treatment, and self-help options. The vivid essays, poetry, and stories personalize the disease's impact; the resources section is outstanding.
This comprehensive guide to the day-to-day issues confronted by Parkinson disease patients and their caregivers covers every caregiving stage.It's all here in an illustrated, easy-to-read format, including the decision to provide home care, preparing the home, assisting with daily activities, financial management, and strategies for avoiding caregiver burnout. This guide also includes information on the specific issues that PD patients and caregivers face, as well as tips on purchasing equipment, travel, therapies, loss of motor skills, and communicating effectively with physicians.
Silence of the Bunnies is a whimsical journey of self-discovery, triggered by the author's mid-life discovery that he faced serious medical issues (Parkinson's disease). The discovery forces the author to confront who he is, and he uses humor and pathos to relish both the human condition and the many foibles he has encountered in his life. In the end, he finds the illness to be a much-needed wake up call, from which he derives a determination to face life with determination and zest.
At the age of 49, Dr. Thomas Graboys had reached the pinnacle of his career as a nationally renowned Boston cardiologist popular for his attention to the hearts and souls of his patients. Today, Grayboys is battling a particularly aggressive form of Parkinson's disease and progressive dementia, and can no longer see patients or give rounds. He is stooped, and shuffles when he walks, the gait of a man much older than his 63 years. Despite the physical, mental and emotional toll he battles daily, Graboys continues his life-long mission of caring for the world one human being at a time by telling his story so that others may find comfort, inspiration, or validation in their own struggles.
Surviving Adversity-Living with Parkinson's disease contains the profiles of a professional golfer, neurologist, acclaimed lawyer, children's author, nurse, legendary cyclist, former Attorney General, highly respected news anchor and 20 other men and women. They all share their inspiring stories of how they have adjusted to Parkinson's disease.
What's Shakin is not a book about Parkinson's disease. It is a book about a man who has Parkinson's and the hilarious situations he has fallen into as a result of this disease. What's Shakin will have you rolling on the floor with laughter, so be careful where you read it. The book also has a serious side to it and will offer hope and inspiration to anyone who has had tragedy touch their lives. The author's life experiences offer optimism and encouragement to others regardless of what misfortunes they may face.
"Carolyn's Journey" shares the journey of Carolyn Anderson and her diagnosis with Parkinson's Disease through the eyes of her husband and primary caregiver, Victor Anderson. It is a straightforward look at the challenges of diagnosing Parkinson's disease, dealing with the doctors and insurance companies, and current prognosis and treatment of Parkinson's disease. It also shares some of the hopeful new medical practices such as Deep Brain Stimulation that have allowed Carolyn to enjoy a nearly normal life. This book will help you: 1) Learn the symptoms and early warning signs of Parkinson's disease; 2) Gain insights from both the viewpoint of the caregiver and the patient; 3) Explore treatment options; 4) Follow the progression of Parkinson's from early symptoms through near recovery; and 5) Gain basic information and background about Parkinson's disease.
A neurologist whose father suffers from Parkinson's provides a lay reader-friendly explanation of the disease, its history, development, treatment and modern advances that may ultimately lead to a cure. Rosenbaum's professional view is as a clinical neurologist who regularly cares for patients with the progressive neurological deterioration caused by Parkinson's Disease. His personal experience with his father, a retired surgeon, further powers his quest to give patients, family members and caregivers what they need to know. Topics covered include challenges of correct diagnosis, variations in prognosis, investigations of causes including exciting progress in possible toxins and genetic factors that play a role, and different treatment options including natural remedies as well as new drugs for symptom treatment. Rosenbaum also explains research efforts to find a preventative drug, modern surgical options, and hopes for stem cell or gene therapy. In this work, Rosenbaum blends historical and medical research with illustrations from the patients in his professional life, and from his dad on the homefront, to give us a clear and comprehensive understanding of Parkinson's.
Morton Kondracke chronicles his wife's 13-year battle against Parkinson's disease with the same attention to nitty-gritty details that distinguish his political commentary. Kondracke doesn't airbrush how horrible it is to have Parkinson's (the squeamish should avoid the passages about Milly Kondracke's two rounds of deep-brain surgery), or how difficult it is to live with someone who does (the mere recitation of his caretaking activities will exhaust most readers). He provides unvarnished accounts of the battles among members of the Parkinson's Action Network and other disease activists competing for limited federal research funds, until they got real and decided to fight to double the National Institutes of Health's budget so everyone would get more money. And he refuses to offer a feel-good ending charged with false hope; the book's closing pages include a grim account of the Kondrackes' discussions about what to do if she becomes unable to swallow. (They settled on refusing the feeding tube and allowing her to starve to death, which "is not painful if the patient doesn't take liquids.") Offsetting this bleak material is a vibrant, loving, and equally candid portrait of the indomitable Millicent Martinez Kondracke, who began up-ending the admittedly self-absorbed, drivingly ambitious Kondracke's life from the moment they met in 1966. Seeing how powerful Milly once was, we share her anguish as she descends into disability--and her husband's hope that, despite all the current scientific projections, research will provide a breakthrough in time to save her.
What better way to explain how Parkinson s affects a loved one than through the eyes of a child? Who Is Pee Dee? does just that with easy-to-understand wording and colorful graphics. This book gives parents a tool they can sit down with their kids to talk about Parkinson s. This richly illustrated book is intended to console and inform children about the chronic disease. As they follow the adventures of a boy named Colt and his toy panda bear, Pee Dee, they will come to understand Parkinson s Disease and learn how they can help their loved ones who have been diagnosed with it.
Ali's father, Muhammad Ali, suffers from Parkinson's disease, and she answers questions children may have about the illness. She demystifies some of the more obvious symptoms, like shaking, trouble walking, and slurred speech, and also explains more puzzling or unseen symptoms such as sleep disorders, depression, and masked face, in which the patient cannot display expressions. The text is well written and basic, without being oversimplified, and the layout is clever. Each verso includes large-print type for children, advice for adults for speaking with their child, and related facts.
A valuable aide for parents faced with the daunting task of explaining a difficult disease to their kids, "My Grandpa Has Parkinson's" will inform and reassure. All proceeds for this book will be donated to The Michael J. Fox Foundation for Parkinson's Research.
Although written for children, this reassuring guide is also excellent for adults with limited reading skills. Covering the basics (causes, treatment, symptoms, and progression), the volume also highlights ongoing research, the use of service dogs for people with Parkinson's Disease, and PD celebrities such as Michael J. Fox.
Clothing Solutions 800/427-0785
J. C. Penny – Easy Dressing 800/222-6161
Sammons Preston 800/323-5547
Sears – Home Health Service 800/326-1750
Caregiving Online* www.caregiving.com
Family Caregiver Alliance* www.caregiver.org
National Alliance for Caregiving www.caregiving.org
National Family Caregivers Association www.nfcacares.org
* = Online support groups available