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Parkinson's disease affects all sides of you: your inside, your outside, and your "right" side-that is, the side where you feel positive, balanced, and beautiful. How do you find that edge when you're not feeling very sharp at all? Parkinson's Diva is a personal and professional accounting of a young Parkinson's doctor's experience with the disease in all realms of her life . . . from doctor, caregiver, and ultimately as a young Parkinson's patient herself. Not only does Dr. Maria De Leon cover important basics of PD and research-based data, she also shares the personal concerns and gender-specific battles that young women who live with the disease must face. She encourages all of us to be empowered through education, self-awareness, and faith. This book is about embracing your own style and grace in your journey with PD . . . as Maria says "summoning your inner diva.""
Designed specifically for women with Parkinson's disease, this delightfully illustrated guided journal offers fun activities and a place to document the hopes and struggles that go along a Parkinson's diagnosis. Be inspired through this workbook and let your Inner Diva shine!
Background: Being diagnosed with Parkinson´s disease (PD) is a life-altering experience. The long-term condition requires continuous adjustments to the everyday life not only of the person affected, but also for care partners. There is still insufficient knowledge on how best to support this process of acceptance and adjustment to encourage self-management. Aims: The aim of this thesis is to enhance the knowledge and understanding of self-management for persons with PD (PwPD) and their care partners. Furthermore, to investigate whether the self-management intervention Swedish National Parkinson School can be used as a tool to support self-management, and how nurses specialised in the care of persons with Parkinson´s disease can tailor their support to encourage self-management in everyday life. Method and design: Both qualitative and quantitative designs and methods were used in the three studies included in this thesis. Participants included a total of 209 persons. Of these, 127 were persons with PD and 75 were care partners. Participants with PD were largely in the middle stages of the disease. The time since diagnosis ranged from less than one year to over 20 years, and most participants had lived with the disease for around five years. Participants were cared for at five separate outpatient clinics, both geriatric and neurological, in three county and two university hospitals across Sweden. Data collection included observations, interviews, self-reported questionnaires and audio-recordings of the National Parkinson School in clinical care. The overall results of this thesis were obtained using a qualitative approach, where the results of the three studies were analysed using qualitative thematic analysis as described by Braun and Clarke (2006). Results: In combining the results of the separate studies through thematic analysis three distinct but interrelated themes were evident. These described the processes and efforts of persons to accept, manage and adjust to everyday life with PD. The theme “A changed reality” involves participants´ descriptions of how life changed after the diagnosis of PD. For many this was a shock, and both the person affected and their care partners experienced a variety of emotions such as anger, denial and hopelessness. It changed their personal identities, their perception of themselves as individuals and as a couple. They worried about what the future would hold, and the uncertainty was hard to accept and handle. One strategy for processing and beginning to acknowledge the new situation involved speaking openly about the diagnosis. The second theme “Finding a new path”, involves a description of how, after accepting or at least acknowledging, their new reality, participants started to find ways of managing the impact of PD on everyday life, incorporating it into their current life and identity. Many felt new knowledge was needed and turned to books and websites on PD. An intervention which was appreciated in terms of providing tools for self-observation and self-knowledge was the Swedish National Parkinson School. Participants later used these techniques to communicate and observe symptoms and healthcare needs. Being an active participant in life and performing activities such as physical exercise or other activities they enjoyed were also used as a strategy to feel satisfaction in life. Participants frequently worked out self-care and compensatory strategies to handle everyday tasks. Another strategy they found comforting and helpful involved retaining a positive mind-set and believing that a good future lay ahead. In the third category “The companions”, the participants described self-management in everyday life as a task they performed together. Management of PD was considered the shared responsibility of the person affected and the care partner, but was also influenced by others such as family members and close friends. The Swedish National Parkinson School provided knowledge as a form of common ground for the person affected and the care partner. During the Swedish National Parkinson School, the social interaction involved in exchanging experiences and feeling support from others in the same situation was considered helpful and was much appreciated. Conclusions: Management of PD in everyday life involves both the person affected and the care partner. After the initial emotional reactions, alongside feelings of lost identity and an altered life, persons started to look to the future and were ready to find ways of handling the changed conditions of their everyday lives. Persons with PD and their care partners were now willing to learn more about PD and to find tools and strategies to help them manage its impact on their everyday lives. During this phase, they appreciated the support of the Swedish National Parkinson School intervention. In the intervention, they would meet others in the same situation to find support and exchange experiences. They also turn to healthcare for support in the process of self-management in everyday life. Nurses working specifically to support PwPD and their CP will need to tailor support taking into account the disease trajectory as well as the psychological processes involved in accepting and adjusting to PD to best fit the unique needs and wishes of every person with PD and their care partner.
"It is hard to believe it has been only 7 years since the publication of our first edition. In this short time, so much has changed in what we know about Parkinson's disease and how to treat it. As I read through the first edition, I found much information was already out of date within 4 years from publication. New knowledge about the role of protein misfolding and how it leads to nerve cell damage in Parkinson's, about when and where the disease may be starting, about how it may progress and spread through the brain, about how it affects almost all aspects of body functions, about how all this new knowledge is shaping the quest for a cure, about how important exercise is, and about how the multidisciplinary approach to disease management changes the quality of life of people with Parkinson's has been accumulating at a dizzying pace. More than 200 years after the publication of Parkinson's An Essay on the Shaking Palsy and just over 50 years after the implementation of levodopa in Parkinson's treatment, it looks as though scientists are poised to make a breakthrough toward effective treatments of the disease itself, not just the symptoms, and paths that may eventually lead to a cure are now visible. Such progress would be impossible without the hard work of many researchers; the financial support of the corresponding government agencies; the advocacy of national and international Parkinson's organizations and the philanthropy of their donors; and the tireless efforts and open minds of the doctors, nurses, therapists, and social workers caring for people with Parkinson's and their families. Above all, none of this progress would be possible without the active participation of people with Parkinson's and their families through advocacy, community engagement, and participation in clinical trials. To them we would like to extend a great "thank you"."--
Navigating Life with Parkinson's Disease is a guide for anyone affected by Parkinson's—patients, family members, friends, and caregivers. Containing the most up-to-date information on the disease, one of the most common nervous system diseases, it also 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, Navigating Life with Parkinson's Disease empowers patients and their families with the necessary information to take charge of their health care.
The long-awaited update to the definitive guide to successfully living with Parkinson's disease Known for its upbeat, informative, and inspirational guidance, Living Well with Parkinson's includes a wealth of up-to-date medical information for Parkinson's sufferers, who number over 1 million in the U.S. alone. Combined with the author's poignant personal account of her own struggles with the disease, this new edition features coverage of pallidotomy (a new surgical technique), the dramatic implications of recent genetic research, and new drugs and therapies. The book also includes tips on dealing with social services and elder law, maintaining a positive attitude, handling issues with spouses and children, and finding support groups. Glenna Wotton Atwood, a former home economics teacher from Maine, lived with Parkinson's for over two decades until her death in 1998. Lila Green Hunnewell (Rockaway, NJ) is a freelance writer and editor. Roxanne Moore Saucier (Bangor, ME) is a journalist with the Bangor Daily News.
The personal story of a Los Angeles Times editor discusses his experiences with Parkinson's disease, from its physical to its psychological challenges, and provides additional information about how the disease works, how it is treated, and the outlook for its cure.
Parkinsons Disease is a chronic, disabling illness that has affected between 500,000 to 1.2 million people in the United States. Cells that produce the neurotransmitter dopamine in the brain die and do not regenerate in people with PD. As a result, people with Parkinsons Disease suffer from a range of symptoms involving muscle movement. These symptoms may include tremors, problems with walking and balance, rigid muscles, an immobile facial expression, and diminished speaking volume. Sometimes cognitive diffi culties develop.
A diagnosis of Parkinson’s disease is as disorienting as it is devastating. The Complete Guide for People With Parkinson’s Disease and Their Loved Ones helps make sense of what comes next and what can be done, not just for those suffering from the disease but for their family and friends as well. A trained nurse and primary caregiver for her mother, who was diagnosed with Parkinson’s disease in 1991, Lianna Marie draws upon over twenty years of education, research, and direct experience. Written in straightforward and easily accessible language, this essential guide aims to help patients better understand their role in their treatment so that they may continue to lead happy and hopeful lives. Topics covered include nutrition and exercise, alternative and complementary therapies, medication and treatment, and what caregivers can do to help. Written by an international expert on Parkinson’s who has confronted the disease firsthand, The Complete Guide serves as the go-to book for comprehensive, easy-to-understand information for all Parkinson’s patients and their loved ones.
Parkinsons Recovery Radio show guests often talk about how they reversed the symptoms of Parkinsons Disease and restored the delicate balance of hormones in their body. Now you can read nine of these amazing stories as they were first told on the radio show in this 2012 release of Pioneers of Recovery. Each chapter includes details on the steps that each pioneer took to make miracle of healing happen. Therapies that paved the road to recovery include: TMJ adjustments, Candida cleanses, Voice Profiling,sound therapy,Tai Chi, Martial Arts, Qigong, Low Dose Naltrexone, forced exercise, Chinese medicine, supplements, diet, detoxes and even opening blocked jugular veins. Pioneers of Recovery will transform your expectation about the possibility of recovery. You will be intrigued by how each pioneer went about reversing their symptoms. These stories confirm the wisdom of the ages that the body does know how to heal. It just needs a little help remembering how.