“Running Water Won't Freeze”: How people with advanced Parkinson's disease experience occupation

2014 ◽  
Vol 13 (5) ◽  
pp. 1363-1372 ◽  
Author(s):  
Carolyn Murdock ◽  
Wendy Cousins ◽  
W. George Kernohan
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Occupational Therapy ◽  
Research Network ◽  
Daily Lives ◽  
Advanced Parkinson’S Disease ◽  
Disease Experience

AbstractObjective:Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.Method:Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.Results:The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.Significance of Results:Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.

scholarly journals Long-term effectiveness of levodopa-carbidopa intestinal gel on motor and non-motor symptoms in advanced Parkinson’s disease: results of the Italian GLORIA patient population

2020 ◽  
Vol 41 (10) ◽  
pp. 2929-2937 ◽  
Author(s):  
Angelo Antonini ◽  
Pietro Marano ◽  
Graziano Gusmaroli ◽  
Nicola Modugno ◽  
Claudio Pacchetti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Rating Scale ◽  
Motor Fluctuations ◽  
Motor Symptoms ◽  
Italian Population ◽  
Advanced Parkinson’S Disease ◽  
Non Motor Symptoms

Abstract Introduction The GLORIA registry included 375 advanced Parkinson’s disease (PD) patients and evaluated the efficacy and safety of a 24-month levodopa-carbidopa intestinal gel (LCIG) treatment in routine medical care. This analysis focuses on the Italian population, 60 patients treated with LCIG in 7 specialised PD care centres. Methods Hours of “Off” and “On” time were assessed with a modified version of the Unified Parkinson’s Disease Rating Scale (UPDRS) part IV items 39 and 32. Motor fluctuations, dyskinesia, non-motor symptoms, quality of life and safety were evaluated. Results Overall, 42 (70%) out of 60 patients completed the registry. LCIG treatment reduced “Off” time (− 3.3 ± 2.7 h at month 24 (M24), P < 0.0001), increased “On” time with dyskinesia (− 2.6 ± 5.2 h at M12, P = 0.0160), and improved UPDRS II and UPDRS III total scores at M24 (− 4.5 ± 10.6, P = 0.0333 and − 4.9 ± 11.7, P = 0.0229, respectively), Non-Motor Symptom Scale (NMSS) total score (− 21.8 ± 28.5, P < 0.0001) and Parkinson’s Disease Questionnaire-8 item (PDQ-8) total score (− 12.5 ± 23.9, P = 0.0173) versus previous oral therapy. Adverse drug reactions (ADR) possibly or probably related to treatment were reported in 16 (28.6%) patients. Decreased weight (7.1%), polyneuropathy (7.1%) and abdominal pain (5.4%) were the most frequent ADRs while device malfunction (5.4%) and medical device change (5.4%) were the most reported device complaints. Conclusions LCIG improved motor fluctuations, non-motor symptoms and quality of life over 24 months while tolerability was consistent with the established safety profile.

Treatment of Advanced Parkinson’s Disease

2021 ◽  
pp. 089198872098890
Author(s):  
Rebecca Gilbert ◽  
Pravin Khemani
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Side Effects ◽  
Clinical Experience ◽  
Practical Approach ◽  
Nonmotor Symptoms ◽  
Advanced Parkinson’S Disease

Advanced Parkinson’s disease (PD) often brings a set of motor and non-motor features that are particularly challenging to manage. Medication options can be limited by side-effects and quality of life can be severely affected by an accumulating burden of nonmotor symptoms. Here, we reviewed the literature and our clinical experience with the aim of providing a practical approach to the management of advanced PD. We provide guidelines for treatment of physical and neurobehavioral concerns, that occur in advanced PD.

635: Globus pallidus stimulation improves nonmotor aspects of quality of life in advanced Parkinson’s disease

2007 ◽  
Vol 14 (10) ◽  
pp. 1030
Author(s):  
Julian P. Rodrigues ◽  
Susan E. Walters ◽  
Rick Stell ◽  
Peter Watson ◽  
Frank L. Mastaglia
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Globus Pallidus ◽  
Advanced Parkinson’S Disease

scholarly journals Multidisciplinary intensive outpatient rehabilitation program for patients with moderate-to-advanced Parkinson’s disease

2021 ◽  
pp. 1-9
Author(s):  
Noa Cohen ◽  
Yael Manor ◽  
Yitzhak Green ◽  
Gail Tahel ◽  
Inbal Badichi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Functional Independence ◽  
Rehabilitation Program ◽  
Outpatient Rehabilitation ◽  
Advanced Parkinson’S Disease ◽  
Intensive Outpatient ◽  
Positive Results

BACKGROUND: Intensive, multi-disciplinary, rehabilitation programs for patients with Parkinson’s disease (PWPs) have shown to be effective. However, most programs are based on in-patient service, which is expensive. OBJECTIVE: To demonstrate the feasibility of a multidisciplinary, intensive, outpatient rehabilitation program (MIOR) for moderate to advanced Parkinson’s Disease (H&Y≥2). METHOD: The MIOR program takes place at a community rehabilitation center (‘Ezra Le’Marpe’), 3 times a week, 5 hours, 8 weeks, and includes 20 PWPs in each cycle. The multi-disciplinary team includes physical, occupational, speech and hydro therapists. Additional activities include, social work groups, boxing, dancing and bridge. RESULTS: Data was collected retroactively for the first two years. Data analysis includes 158 patient files who completed the program (mean disease duration 10.1±6 and mean H&Y stage 2.8±0.67). Assessments were performed at the beginning and end of the intervention. Positive results were collected: improvement in number of falls (p <  0.0001), Functional Independence Measure (p <  0.0001), quality of life (p <  0.01), balance (p <  0.0001), upper limb function (p <  0.0001) and paragraph reading vocal intensity (p <  0.01). CONCLUSIONS: MIOR is a feasible program, showing positive results in moderate to advanced PWP’s, improving quality of life, daily function, and motor performance. The current outcomes demonstrate feasibility of MIOR in addition to medical treatment.

scholarly journals “No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

2021 ◽  
pp. 1-13
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Jenny T. van der Steen ◽  
Marten Munneke ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Disease Burden ◽  
Mixed Methods Case Study ◽  
Palliative Phase

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

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