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.""
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.
This comprehensive guide thoroughly covers all aspects of neuropalliative care, from symptom-specific considerations, to improving communication between clinicians, patients and families. Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease addresses clinical considerations for diseases such as dementia, multiple sclerosis, and severe acute brain injury, as well discussing the other challenges facing palliative care patients that are not currently sufficiently met under current models of care. This includes methods of effective communication, supporting the caregiver, how to make difficult treatment decisions in the face of uncertainty, managing grief, guilt and anger, and treating the pain itself. Written by leaders in the field of neuropalliative care, this book is an exceptional, well-rounded resource of neuropalliative care, serving as a reference for all clinicians caring for patients with neurological disease and their families: neurologists and palliative care specialists, physicians, nurses, chaplains, social workers, as well as trainees in these areas.
Apomorphine in Parkinson's Disease provides a thorough and comprehensive review of apomorphine, one of the oldest drugs still in clinical use that recently has received renewed attention due to its efficacy in the treatment of advanced Parkinson's disease.Apomorphine in Parkinson's Disease covers the history of the drug, its pharmacology and clinical use in Parkinson's disease, practical tips and recommendations for its use, as well as a discussion of health economic aspects of its use. The efficacy of apomorphine is also contrasted to that of other recent approaches to the treatment of advanced Parkinson's disease, most notably neurosurgical interventions.The primary audience of Apomorphine in Parkinson's Disease consists of physicians and nurses concerned with the management of patients suffering from advanced Parkinson's disease, but it will probably also be relevant for other health care professionals (including students and those practicing in related fields), researchers, teachers, administrators and decision makers with an interest in the field of Parkinson's disease and clinical neurology.
Parkinson’s Disease;chronic illness;intimate autonomy;psychology;Jungian psychology From the initial port of a relating pattern with Parkinson’s Disease consisting of the usual fight, flight, freeze or the book’s new ‘fall’ structural methodology, the author takes off on a voyage harboring cryptic intimations about being “with” an illness, about a less ego accentuated interacting. This remarkable transmutation happens gradually. A re-molding takes place during the course of an eight year journey. The nucleus of this book is a descriptive narrative of this journey, of a voyage to the paradoxical space of an intimate autonomy. Even though THE HISS OF HOPE is about living with a chronic disease, the book does not dwell on a life of suffering and desperation, but rather, it also depicts the adventure leading to places, to encounters and to depths of experience that would not have been possible without first having been ambushed by Parkinson’s. Today’s Zeitgeist seems to be pregnant with dark and fearful hints of impending disasters. This book suggests an intimate autonomy as a culturally integrable relating pattern to cope with life in the first half of the 21st century. And with death. With a grateful nod to Parkinson’s Disease and its initial rupture of her life, the author concludes her book with a generous smile. The sparkle of the ‘before’ space links to the calm radiance of the ‘after’. And the sibilant hiss, reveals itself as a dynamic third between hope and no-hope: a concurrent unity of an intimate togetherness and an autonomous separateness. A beginning asserts itself at the end. Parkinson’s reacts with a wise and iconic grin.
Parkinson’s disease (PD) is one of the most common neurodegenerative disorders and it is caused by a loss of dopamine (DA) producing neurons in the basal ganglia in the brain. The PD patient suffers from motor symptoms such as tremor, bradykinesia and rigidity and treatment with levodopa (LD), the precursor of DA, has positive effects on these symptoms. Several factors affect the availability of orally given LD. Gastric emptying (GE) is one factor and it has been shown to be delayed in PD patients resulting in impaired levodopa uptake. Different enzymes metabolize LD on its way from the gut to the brain resulting in less LD available in the brain and more side effects from the metabolites. By adding dopa decarboxylase inhibitors (carbidopa or benserazide) or COMT-inhibitors (e.g. entacapone) the bioavailability of LD increases significantly and more LD can pass the blood-brain-barrier and be converted to DA in the brain. It has been considered of importance to avoid high levodopa peaks in the brain because this seems to induce changes in postsynaptic dopaminergic neurons causing disabling motor complications in PD patients. More continuously given LD, e.g. duodenal or intravenous (IV) infusions, has been shown to improve these motor complications. Deep brain stimulation of the subthalamic nucleus (STN DBS) has also been proven to improve motor complications and to make it possible to reduce the LD dosage in PD patients. In this doctoral thesis the main purpose is to study the pharmacokinetics of LD in patients with PD and motor complications; in blood and subcutaneous tissue and study the effect of GE and PD stage on LD uptake and the effect of continuously given LD (CDS) on LD uptake and GE; in blood and cerebrospinal fluid (CSF) when adding the peripheral enzyme inhibitors entacapone and carbidopa to LD infusion IV; in brain during STN DBSand during oral or IV LD treatment. To conclude, LD uptake is more favorable in PD patients with less severe disease and GE is delayed in PD patients. No obvious relation between LD uptake and GE or between GE and PD stage is seen and CDS decreases the LD levels. Entacapone increases the maximal concentration of LD in blood and CSF. This is more evident with additional carbidopa and important to consider in avoiding high LD peaks in brain during PD treatment. LD in brain increases during both oral and IV LD treatment and the DA levels follows LD well indicating that PD patients still have capacity to metabolize LD to DA despite probable pronounced nigral degeneration. STN DBS seems to increase putaminal DA levels and together with IV LD treatment also increases LD in brain possibly explaining why it is possible to decrease LD medication after STN DBS surgery. Parkinsons sjukdom (PS) är en av de vanligaste s.k. neurodegenerativasjukdomarna och orsakas av förlust av dopamin(DA)producerande nervceller i hjärnan. Detta orsakar motoriska symptom såsom skakningar, stelhet och förlångsammade rörelser. Levodopa (LD) är ett ämne, som kan omvandlas till DA i hjärnan och ge symptomlindring och det är oftast förstahandsval vid behandling av patienter med PS. Flera faktorer påverkar tillgängligheten av LD, bl.a. den hastighet som magsäcken tömmer sig med och denna verkar förlångsammad hos personer med PS vilket ger sämre tillgänglighet av LD i blodet och därmed i hjärnan. LD bryts även ner i hög grad av olika enzym ute i kroppen vilket leder till mindre mängd LD som hamnar i hjärnan och till fler nedbrytningsprodukter som orsakar biverkningar. Tillägg av enzymhämmare leder till ökad mängd LD som kan nå hjärnan och omvandlas till DA. Det anses viktigt att undvika höga toppar av LD i hjärnan då dessa verkar bidra till utvecklandet av besvärliga motoriska komplikationer hos patienter med PS. Om LD ges mer kontinuerligt, exempelvis som en kontinuerlig infusion in i tarmen eller i blodet, så minskar dessa motoriska komplikationer. Inopererande av stimulatorer i vissa delar av hjärnan (DBS) har också visat sig minska dessa motoriska komplikationer och även resultera i att man kan minska LD-dosen. Huvudsyftet med den här avhandlingen är att studera LD hos patienter med PS; i blod och fettvävnad då LD ges i tablettform och se om det finns något samband med LD-upptag och hastigheten på magsäckstömningen (MT) och om kontinuerligt given LD påverkar LD-upptaget eller MT; i blod och i ryggmärgsvätska då enzymhämmarna entakapon och karbidopa tillsätts LD; i hjärna vid behandling med DBS och då LD ges både som tablett och som infusion i blodet. Sammanfattningsvis kan vi se att LD-upptaget är mer gynnsamt hos patienter med PS i tidigare skede av sjukdomens komplikationsfas. MT är förlångsammad hos patienter med PS och det är inget tydligt samband mellan LD-upptag och MT eller mellan MT och sjukdomsgrad. Kontinuerligt given LD minskar LDnivåerna. Enzymhämmaren entakapon ökar den maximala koncentrationen av LD i blod och ryggmärgsvätska och effekten är mer tydlig vid tillägg av karbidopa vilket är viktigt att ta i beaktande vid behandling av PS för att undvika höga toppar av LD i hjärnan. LD ökar i hjärnan då man behandlar med LD i tablettform och som infusion i blodet och DA-nivåerna i hjärnan följer LD väl vilket visar på att patienter med PS fortfarande kan omvandla LD till DA trots trolig uttalad brist av de DA-producerande nervcellerna i hjärnan. DBS verkar öka DA i vissa områden i hjärnan och tillsammans med LD-infusion i blodet verkar det även öka LD i hjärnan och det kan förklara varför man kan sänka LDdosen efter DBS-operation.
In Naked at Our Age, women and men, coupled and single, straight and gay talk candidly about how their sex lives and relationships have changed with age, and about how they see themselves, their partners, or their single life. Many of them are having unsatisfying sex, or no sex at all, and are seeking advice. Price presents their personal stories, and follows up with tips from sex therapists, health professionals, counselors, sex educators, and other knowledgeable experts. Naked at Our Age is an entertaining and indispensable guide to handling and understanding the issues of senior sex and relationships.
PFAS (per and polyfluoroalkylsubstances) are known to be extremely difficult to degrade in the environment and to be bioaccumulative and toxic. Exposure to PFAS is suspected to increase the risk of adverse health effects, such as impacts on the thyroid gland, the liver, fat metabolism and the immune system. This study estimates the socioeconomic costs that may result from impacts on human health and the environment from the use of PFAS. Better awareness of the costs and problems associated with PFAS exposure will assist decision-makers and the general public to make more efficient and timely risk management decisions. Findings indicate that the costs are substantial, with annual health-related costs estimated to 2.8 – 4.6 billion EUR for the Nordic countries and 52 – 84 billion EUR for all EEA countries. Overall non-health costs are estimated at 46 million – 11 billion EUR for the Nordic countries.Upon request the excel spreadsheets used for the monetarisation and valuation in this report can also be provided along with a guidance on how to use the estimation of costs for value transfer. Please contact any of the consultants or members of the steering group from the Swedish Chemicals Agency or the Danish Environmental Protection Agency if you are interested in receiving these excel spreadsheets.
