Home Accessibility: 300 Tips for Making Life Easier
By Shelley Peterman Schwarz
Demos Medical Publishing, 2012
Book review by Alys Novak
Originally published in eMS News, 4/23/2012
Author Schwarz, who has lived with MS since 1979, focuses on coping successfully with a disability through her nationally syndicated “Making It Easier” column and via her website, internet radio show, blog and many books/articles. Using her experience in adjusting to increasing disability, such as using a scooter- style wheelchair, she highlights many invaluable tips in this book on how to make your living space more accessible whatever your budget.
First she spotlights some basic concepts, such as getting help from physical/occupational therapists, independent living centers and local accessibility/ home adaptations/universal design consultants…and web resources. Then she takes you on a room-by-room tour. Examples: If you cannot add much/any space to your bathroom, make the whole room a wetroom to facilitate a roll-in shower; install an ADA toilet; and lower the sink. In the kitchen, instead of a traditional stove/oven combination, install each separately at a height convenient for a wheelchair user. Purchase user-friendly tools such as a one-handed can opener, a suction-ware cutting board, nonslip mats to place under mixing bowls and to help with transfers. In the bedroom, install easy-to-reach closet rods; move furniture to make a wide aisle to the bed, use slippery satin sheets to facilitate getting in/out of bed.
Most important, include your partner in your problem-solving team. What will work as well for your spouse, for example, as for you? Everyone living in the home should be consulted and involved in the decision-making…it’s fun tackling challenges together.
The book can be purchased from Demos at a 20% discount price at http://www.demoshealth.com or call 1-800-532-8663. The book can also be reviewed in the Center’s library.
Multiple Sclerosis: The Questions You Have – The Answers You Need
By Rosalind C. Kalb, PhD
Book review by Alys Novak
Originally published in eMS News, 12/28/2011
Filled with information for those newly diagnosed to those considering long-term care, this 400-page treasure does indeed seem to answer any question that someone living with MS, family/friends, healthcare providers, others with chronic illnesses will find useful. Since it is designed to be a reference/resource, this would be a great addition to your personal library, and you are always welcome to come and review it at the Rocky Mountain MS Center.
Each chapter is authored by an expert, but written in everyday language. Example: The chapter on “Partnering with an MS Nurse” explains that “A primary goal of nursing care in MS is to help people learn effective, preventive self-management in order to control minor problems before they became major ones,” with the chapter going on to cover such topics as bladder and bowel function, skin care, etc.
Sample chapter titles: “The Role of Physical Therapy,” “The Role of Occupational Therapy,” “Considering Options for Managing Relapses and the Disease Course,” and “Managing the Insurance Maze.”
The book uses a simple Q&A that is somewhat unusual. Questions posed by people living with MS are set out from the rest of the text in boldface and make it easy to find exactly what you are looking for. Example questions: “Is there anything I can do to prevent an exacerbation?” Or “What is a physiatrist?” Extra-added attractions are: a glossary; a list of medications commonly used in MS; recommended additional readings; and an excellent list of resources.
This book is in the Resource Center’s library collection of classic references at the Rocky Mountain MS Center. To peruse or borrow the book, just visit the Center at 8845 Wagner Street in Westminster, or purchase it HERE.
“What Nurses Know…Multiple Sclerosis: The Answers You Need from the People You Trust”
By Carol Saunders
Book review by Alexandra Hempel, RN, BSN
Originally published in eMS News, 6/21/2011
Written by Carol Saunders, “What Nurses Know…Multiple Sclerosis” is an excellent resource for those who have recently been diagnosed with multiple sclerosis. The book offers advice on everything from medications, to signs and symptoms of the disease, and diet and exercise recommendations.
Multiple sclerosis can be a scary diagnosis and many people who are first diagnosed know little about what the disease entails. This book is particularly helpful because it discusses important aspects of the disease, all in layman’s terms. For most, scientific and healthcare-related language and descriptions of any disease are overwhelming and difficult to understand. However, “What Nurses Know…Multiple Sclerosis” explains the disease in a way that anyone can understand.
The book also offers perspectives from patients who have multiple sclerosis. Throughout each chapter there are anecdotes and stories from patients relating to the topic at hand. Reading these stories provides a great perspective of the disease for patients, as they can read other patients’ accounts about how they have coped with and been treated for multiple sclerosis.
If you or someone you know has been recently diagnosed with multiple sclerosis, this is the book to read. With its simple but in-depth explanations, almost anyone would walk away with a better understanding of multiple sclerosis and how to treat it.
Fighting Fatigue in Multiple Sclerosis: Practical Ways to Create New Habits and Increase Your Energy
By Nancy A. Lowenstein. New York: DemosHealth, 2010. 216 pp.
Book review by Angela Dillback
Originally published in eMS News, 1/19/2011
Fatigue has repeatedly been reported as one of the most common and disabling symptoms of multiple sclerosis. Findings regarding the percentage of persons who experience MS-related fatigue vary, with 83% of participants in one study claiming fatigue as a current symptom. MS-related fatigue can be both physical and cognitive in nature, and its causes are multifactorial. Energy conservation strategies have been shown through research to have a positive effect on individuals trying to manage this disabling symptom.
In “Fighting Fatigue in Multiple Sclerosis: Practical Ways to Create New Habits and Increase Your Energy,” Nancy A. Lowenstein, occupational therapist, provides practical strategies aimed at combatting the fatigue often associated with multiple sclerosis. Occupational therapists are health care professionals who are skilled at identifying what may be preventing successful participation in activity, and identifying solutions. This book, formatted much like a workbook, starts with teaching it’s readers how to begin to think like an occupational therapist by identifying energy consuming activities, habits, and routines. This identification is the first step in determining how certain activities contribute to fatigue so that the reader can then start to make active changes in order to conserve energy.
Strategies reviewed include prioritizing; ways to change oneself, the activity, or the environment in order to be more efficient with energy (including practical ways for changing common activities using tools and simple environmental modifications); the importance of diet and exercise; the importance of restoration, and the importance of a balanced lifestyle. The book ends with a chapter on goal setting. The aim? To help the information stick and commit the reader to change.
This book is for anyone experiencing MS-related fatigue who find themselves getting through the must-dos with no energy left for the fun, meaningful activities of life. The concepts contained within the book have been utilized for a number of years in combating MS-related fatigue, and are presented in a way that are easy to understand and immediately applicable to daily life.
Passages in Caregiving: Turning Chaos into Confidence
By Gail Sheehy
By Martha de Ulibarri, MS caregiver
Originally published in eMS News, 10/29/2010
Many of us traveled through the stages of adulthood in Gail Sheehy’s 1970s bestseller, Passages. Now she’s back, and she’s one of us–a family caregiver. “Passages in Caregiving: Turning Chaos into Confidence” is a guide book wrapped in Sheehy’s experience of caring for a husband with cancer, as well as the stories of caregivers she interviewed.
Sheehy compares the caregiver’s path to the twists and turns of a labyrinth and describes eight “turnings” that complete the journey. The emotions and challenges of each turning are addressed with practical guidance, strategies and resources. The author interviewed Meredith Vieira, cohost of NBC’s Today Show, at different stages in her role as caregiver to her husband, Richard Cohen, who was diagnosed with MS when he was 25.
She focuses on MS, Parkinson’s, dementia and other chronic conditions in a straight-forward discussion of the long-term care funding gap. Suggestions for enlisting family and friend support and good insights into negotiating healthcare systems apply to all caregivers.
Passages in Caregiving is organized for quick reference as well as in-depth reading. Essential information in each section is summarized and highlighted. As would be expected from a journalist of Sheehy’s caliber, the narrative is compelling. Her recognition of caregiver worth and contributions is empowering. Sheehy’s journey was aided primarily by east and west coast resources, but the book includes a wider list of helping agencies and programs, and the Rocky Mountain MS Center can also provide local connections.
Reviewer’s Note: Gail Sheehy’s model for the caregiver’s journey was inspired by walking a labyrinth. There was no lightening bolt answer to her problems, but she did find serenity, relaxation and security along the path. Caregivers seeking a peaceful break can find area labyrinths by visiting www.labyrinthlocator.com.
Coffee in the Cereal: The First Year With Multiple Sclerosis (2002)
Phone in the Fridge: Five Years With Multiple Sclerosis (2006)
By Lorna J. Moorhead
Book review by Connie Bouyer
Originally published in eMS News, 9/9/2010
Author Lorna Moorhead was diagnosed with MS in 1999, and has since written two books on her personal experiences with MS. She also started a website titled “MS MOMS.”
For couples who are trying to balance everyday life, plus the challenges of your spouse or loved one having MS or any chronic illness, you will enjoy these two books. She has some amusing experiences that she shares with her readers–from being questioned by strangers for parking in the handicapped section of a parking lot, to being told by a physician that he can’t find anything physically wrong with her and that she should seek the help of a shrink!
For some, I’m sure the thought of reading two books may sound a little overwhelming, but trust me they are not huge books! In the beginning of the second book, “Phone in the Fridge,” the author recaps a lot of the topics that are in her first book, “Coffee in the Cereal.” So, if you prefer to read just one book I would suggest that you read her latest one.
Despite all the ups and downs of living with MS, throughout the books Lorna retains a sense of humor and strength. The guys may feel this is a “chick’s book,” but if you like personal stories I think you will enjoy either one of these publications. I give them a thumbs up!