Amyotrofisk lateralskleros och multipel skleros är båda neurologiska sjukdomar som orsakar fysiska begränsningar och påverkar vardagslivet. Syftet med studien var att undersöka hur vardagslivet gestaltar sig för dessa patienter. Studien baseras på en kvalitativ metod utifrån sex självbiografier och en biografi, vilket ger en insyn i patienternas egna upplevelser av hur det är att leva med ALS eller MS. Resultatet består av fyra huvudteman; Relationer, Begränsningar, Psykisk hälsa och Tankar. I samband med sjukdomen blir relationer mer betydelsefulla samtidigt som den för med sig påfrestningar i förhållandet. Begränsningarna kan leda till att den sjuke får allt svårare att klara av sin vardag vad det gäller hemmet, fritiden samt arbete. Den psykiska hälsan kan yttra sig som depression och det blir en daglig kamp där de söker mening med livet och försöker ta kontroll över situationen. Tankarna handlar om nya värderingar i livet och deras ovisshet om framtiden samt att acceptera situationen. Denna studie kan öka sjuksköterskans kunskap och förståelse för patientens situation, samt vara till hjälp vid individanpassningen av omvårdnaden för dessa patienter. Den kan även vara till hjälp för andra personer som vårdar dessa patienter, som till exempel anhöriga och annan ansvarig vårdpersonal. / Amyotrophic lateral sclerosis and multiple sclerosis are both neurological diseases that cause physical limitations and have consequences on daily life. The aim of this study was to clarify how this daily life appears for these patients. The study is based on a qualitative method with six autobiographies and one biography, which gives an insight of their own, lived experiences on how it is to live with ALS or MS. The result contains four main subjects; Relations, Limitations, Psychical health and Thoughts. In sickness relations becomes more of value, but it also cause stress within a relationship. The limitations make life more difficult in different aspects, such as home environment, leisure activities and work. The mental health can develop into a depression and it becomes a daily fight where they seek a meaning with life and try to take control over the situation. Thoughts are about new values in life, an uncertainty about the future and to accept the situation. The findings of this study can give nurses more knowledge and understanding and be helpful when adjusting nursing care for each of these individuals. It can also be a help to other people who take care of these patients, such as family members and other involved care staff.

Axonal damage, demyelination and inflammation of the central nervous system are the major pathological features of multiple sclerosis (MS). MS is thought to be due to an abnormal T cell mediated immune response. Oxidative stress plays an important role in the advancement of MS. The reduced glutathione (GSH) has very important role in the management of oxidative stress. In our experiment we used Experimental autoimmune encephalomyelitis (EAE) animal model that mimic human MS and tested the effect of Thymoquinone (TQ) a constituent of oil of Nigella Sativa also known as black seed. Thirty female mice strain C57BL/6J between 6 to 12 weeks of age were placed into 3 groups of 10 and MOG was used subcutaneously (s.c) to induce EAE. Group A, the control group. Group B, received MOG (s.c) and TQ intraperiotoneally (i.p) from day 1 till day 50. Group C, received MOG (s.c) and TQ (i.p) was given on the appearance of first sign and symptoms of Chronic relapsing EAE (CR-EAE). All Mice were examined daily for behavioral deficits and all euthanized and sacrificed on day 50. In this study we found mice belonging to group C (EAE with TQ treatment after the appearance of chronic symptoms) were observed to have the highest mean clinical scores in both the acute and chronic phases of EAE with symptom reduction following the TQ injections. Group B (which received daily TQ injections) had decreased symptoms compared to Group A and C. Glutathione level dropped significantly in the control group (p < 0.05) and increased (p > 0.05) in groups B and C mice who received TQ injections. We also noted that EAE clinical signs correlated well with the extent of perivascular lymphocyte infiltrate compared with normal histology following TQ injections. Our results indicate that TQ, due to its anti-oxidant effects is almost 80% preventive and 50% curative in CR-EAE. These results could assist further studies on the mechanism of the action of TQ in CR-EAE and on the possibility of treating the chronic- relapsing phase of human multiple sclerosis. It seems within the realm of possibility that TQ may be as, if not more, therapeutically efficacious as interferon â and glatiramer acetate.

An acute demyelinating syndrome (ADS) in a child may be a monophasic illness or may represent the incident attack of multiple sclerosis (MS) – an inflammatory demyelinating neurodegenerative disorder affecting the brain, spinal cord and optic nerves. The central objective of this dissertation was to identify MRI parameters present at ADS that predict MS diagnosis. A scoring tool was first created containing 14 parameters identified from the literature and demonstrating substantial inter-rater agreement (Cohen’s kappa values ≥0.6). Children aged <16 years were enrolled at incident ADS and are currently followed for five years at 23 Canadian centers. Standardized MRI scans were acquired at onset and serially. MS was defined based on the occurrence of a second demyelinating attack or MRI evidence of new lesions in accordance with McDonald criteria for dissemination in time. Multivariable Cox proportional hazards regression models were used to identify MRI parameters that predicted MS diagnosis. Over 1100 MRI scans in 284 children with ADS were evaluated. To date, 57(20%) children have been diagnosed with MS. For those that developed MS, the median (IQR) time from incident attack to diagnosis was 6.2 (4.7-11.1) months. The presence of ≥1 T1-hypointense lesion (HR 20.6, 95% CI 5.5-78.0) and ≥1 T2 periventricular lesion (3.3, 1.3-8.8) were associated with an increased likelihood for MS diagnosis (sensitivity 84%, specificity 93%, PPV 76%, NPV 96%). The predictive parameters were validated in an independent Dutch cohort of 45 children with ADS (n=15, 33% MS): sensitivity 93%, specificity 87%, PPV 78%, NPV 96%. Finally, it was determined that the 2010 McDonald criteria are applicable for diagnosis of pediatric-onset MS diagnosis in older children with non-ADEM presentations. The work embodied herein emphasizes the value of MRI in predicting MS diagnosis in children with incident ADS. Early identification of children with MS is important for planning clinical care and will be valuable in future pediatric MS treatment trials.

While neuropsychological deficits have been reported in healthy individuals who use cannabis, data in patients with multiple sclerosis (MS) are lacking. Given that MS is associated with cognitive deterioration, the aim of this study was to determine the cognitive effects of inhaled or ingested cannabis in this population. Fifty MS patients (25 cannabis users and 25 non-users) completed the Minimal Assessment of Cognitive Function in MS battery of neuropsychological tests. Cannabis users had significantly poorer performance on measures of information processing speed, executive functions, and visuospatial perception, and were twice as likely to be classified as globally cognitively impaired. Similar results were found after controlling for potential confounding variables. This study provides evidence that prolonged cannabis use in MS patients is associated with poorer performance on cognitive domains commonly affected in this population. The therapeutic benefits patients may derive from using cannabis should be weighed against the associated cognitive side-effects.

Diffusion Tensor Imaging (DTI) can quantify tissue integrity in normal-appearing white matter (NAWM). NAWM abnormalities present at the earliest time point implicate neurodegeneration operative from the outset of multiple sclerosis (MS). DTI scans were obtained at first attacks from 6 children later diagnosed with MS and 6 children with monophasic demyelination, and from 6 controls, matched for age. DTI scans were also obtained from 22 children with established MS with clinical onset before age 12 years and compared to age-matched controls. Atlas- and tractography-based image processing methods were utilized. DTI metrics distinguished MS patients from patients with monophasic demyelination and from controls at the first attack. Differences in NAWM between children with established early-onset MS and controls were only notable when DTI was obtained in adolescence. DTI provides valuable insights into NAWM in children with MS, although in the youngest patients such changes may require time to develop.

While neuropsychological deficits have been reported in healthy individuals who use cannabis, data in patients with multiple sclerosis (MS) are lacking. Given that MS is associated with cognitive deterioration, the aim of this study was to determine the cognitive effects of inhaled or ingested cannabis in this population. Fifty MS patients (25 cannabis users and 25 non-users) completed the Minimal Assessment of Cognitive Function in MS battery of neuropsychological tests. Cannabis users had significantly poorer performance on measures of information processing speed, executive functions, and visuospatial perception, and were twice as likely to be classified as globally cognitively impaired. Similar results were found after controlling for potential confounding variables. This study provides evidence that prolonged cannabis use in MS patients is associated with poorer performance on cognitive domains commonly affected in this population. The therapeutic benefits patients may derive from using cannabis should be weighed against the associated cognitive side-effects.

Diffusion Tensor Imaging (DTI) can quantify tissue integrity in normal-appearing white matter (NAWM). NAWM abnormalities present at the earliest time point implicate neurodegeneration operative from the outset of multiple sclerosis (MS). DTI scans were obtained at first attacks from 6 children later diagnosed with MS and 6 children with monophasic demyelination, and from 6 controls, matched for age. DTI scans were also obtained from 22 children with established MS with clinical onset before age 12 years and compared to age-matched controls. Atlas- and tractography-based image processing methods were utilized. DTI metrics distinguished MS patients from patients with monophasic demyelination and from controls at the first attack. Differences in NAWM between children with established early-onset MS and controls were only notable when DTI was obtained in adolescence. DTI provides valuable insights into NAWM in children with MS, although in the youngest patients such changes may require time to develop.

Purpose: The purpose of this project was to look at the costs of individuals with Alzheimer’s disease and related dementias (ADRD), ALS, and MS in long stay home care in Ontario, Canada. The specific goals were to produce estimates of costs for these individuals, as well as identify clinical and personal characteristics associated with these costs. This project also tested the effectiveness of the Resource Utilization Group for home care case-mix system for use in these special populations. Methods: This project was conducted using a secondary analysis of assessment data from the Canadian Staff Time Resource Intensity Verification Project, a 13-week study of home care costs (N=435 141). The project was guided by the Andersen and Newman (1973) framework for healthcare resource utilization. Descriptive characteristics and mean costs were produced using bivariate frequency and means procedures for each of three conditions. Predictors of costs were identified for each of the three neurological conditions through multivariate regression analysis conducted separately for each condition. In total 41 independent variables were included into the bivariate and multivariate analyses. The dependent variable was the total weekly formal and informal home care costs across all multivariate analyses. Results: In total, ADRD, ALS, or MS diagnoses were present in 16% of the assessments. The mean costs for the three conditions combined were $594.81. The mean costs for ADRD, ALS, and MS were $593.32, $898.41, and $574.92, respectively. Characteristics that were predictive of cost across all conditions included the Resource Utilization Group for home care case-mix system, ADL functionality, IADL functionality, cognitive performance, unsteady gait, stair use, difficulty swallowing, respiratory challenges, and bowel incontinence. The Resource Utilization Group for home care case-mix system had the highest level of explained variance of any single item tested in this project across all conditions. However, other clinical characteristics also contributed substantial levels of explained variance to the models for each of the three conditions. Conclusions: The findings from this project suggest that although diagnosis of ADRD, ALS, and/or MS can describe cost, clinical characteristics are the most important predictors of costs for individuals with these conditions. In addition, the Resource Utilization Group for home care case-mix system can adequately predict costs of individuals with these conditions. The addition of some clinical characteristics would likely improve the predictive abilities of the Resource Utilization Group for home care case-mix system.

Syfte: Litteraturstudiens syfte var att beskriva upplevelsen av MS-relaterad fatigue, hur den påverkade vardagen och val av egenvårdsstrategier. Metod: Beskrivande litteraturstudie. Resultatdelen innehåller 15 st vetenskapliga artiklar, varav 8 st har en kvantitativ ansats, 5 st har en kvalitativ ansats och 2 st har båda ansatserna. Artiklarna söktes i databaserna PubMed och Cinahl och genom manuell sökning. Resultat: MS-relaterad fatigue var en unik och individuell upplevelse. Fatigue hade en multidimensionell och handikappande inverkan på vardagen, som berörde såväl fysiska, psykiska, sociala och kognitiva aspekter. Personer med MS hade utvecklat olika egenvårdsstragier för att minska, förebygga och dölja konsekvenserna av fatigue. Tre av artiklarna saknade en tillräcklig beskrivning av inklusions- och exklusionkriterier. Fyra artiklar saknade en adekvat beskrivning av bortfall.  Slutsats: MS-relaterad fatigue bidrog till en försämring av fysiska, psykiska, sociala och kognitiva funktioner och stod i direkt relation till sämre livskvalitet. Befintliga egenvårdsstrategier kunde beskrivas utgå ifrån två olika teman: lindra och dölja konsekvenserna av fatigue. Levines bevarandemodell gav en omvårdnadsteoretisk förståelse av MS-relaterad fatigue som saknades i tidigare forskning. / Aim: The aim of this study was to describe the experience of MS-related fatigue, how it affected daily-living and different self-care strategies. Method: Descriptive literature study. The study contains 15 scientific papers, 8 had a quantitative approach, 5 had a qualitative approach and 2 included both approaches. The articles were found by using PubMed and Cinahl and by manual search. Results: MS-related fatigue was a unique and individual experience. Fatigue had a multidimensional and disabling impact on everyday life involving physical, psychological, social and cognitive aspects. People with MS had developed various self-care strategies to reduce, prevent and hide the effects of fatigue. Three of the articles lacked a sufficient description of inclusion and exclusion criteria. Four articles lacked an adequate description of the discontinuity of participation. Conclusion: MS-related fatigue contributed to a deterioration of the physical, psychological, social and cognitive functions and was directly related to lower quality of life. Existing self-care strategies could be described in two themes: to ease and hide the effects of fatigue. Levine's conservation model yielded a theoretical understanding of MS-related fatigue. Previous research did not incorporate a nursing theoretical understanding of MS-related fatigue.

Axonal damage, demyelination and inflammation of the central nervous system are the major pathological features of multiple sclerosis (MS). MS is thought to be due to an abnormal T cell mediated immune response. Oxidative stress plays an important role in the advancement of MS. The reduced glutathione (GSH) has very important role in the management of oxidative stress. In our experiment we used Experimental autoimmune encephalomyelitis (EAE) animal model that mimic human MS and tested the effect of Thymoquinone (TQ) a constituent of oil of Nigella Sativa also known as black seed. Thirty female mice strain C57BL/6J between 6 to 12 weeks of age were placed into 3 groups of 10 and MOG was used subcutaneously (s.c) to induce EAE. Group A, the control group. Group B, received MOG (s.c) and TQ intraperiotoneally (i.p) from day 1 till day 50. Group C, received MOG (s.c) and TQ (i.p) was given on the appearance of first sign and symptoms of Chronic relapsing EAE (CR-EAE). All Mice were examined daily for behavioral deficits and all euthanized and sacrificed on day 50. In this study we found mice belonging to group C (EAE with TQ treatment after the appearance of chronic symptoms) were observed to have the highest mean clinical scores in both the acute and chronic phases of EAE with symptom reduction following the TQ injections. Group B (which received daily TQ injections) had decreased symptoms compared to Group A and C. Glutathione level dropped significantly in the control group (p < 0.05) and increased (p > 0.05) in groups B and C mice who received TQ injections. We also noted that EAE clinical signs correlated well with the extent of perivascular lymphocyte infiltrate compared with normal histology following TQ injections. Our results indicate that TQ, due to its anti-oxidant effects is almost 80% preventive and 50% curative in CR-EAE. These results could assist further studies on the mechanism of the action of TQ in CR-EAE and on the possibility of treating the chronic- relapsing phase of human multiple sclerosis. It seems within the realm of possibility that TQ may be as, if not more, therapeutically efficacious as interferon â and glatiramer acetate.