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BACKGROUND: People with multiple sclerosis (MS) frequently complain of chronic or fluctuating fatigue, sometimes accompanied by pain. From a phenomenological point of view, both fatigue and pain are seen as aspects of suffering which adversely affect the physical, psychological, social and even existential dimensions of the individual life. OBJECTIVE: The present study discusses changes in identity and body awareness in people with MS who completed a 5-d trekking to Machu Picchu in Peru in 2012, after having completed a physical training schedule for several months. METHOD AND DESIGN: All nine participants took part in a focus group organized after the trip. The Interpretative Phenomenological Analysis (IPA) was used to gain insight in their experiences and to refine pre-existing theoretical understanding of body awareness and identity. RESULTS: Our phenomenological analysis clarified how aspects of the participants' identity and body experience before, during and after the journey influenced major daily themes as "body", "lived body", "behaviour" and "relationship" and how this contributed to a meaningful experience. When participants describe how they started looking at their own identity more consciously after being watched through the others' eyes, this resulted in a joyful transcending of their bodily power and endurance. In general, our data suggest that the more extreme, positive lived body experiences during the expedition were necessary for optimizing daily "routine" functioning. CONCLUSION: Participating in Machu Picchu expedition appeared to have a deep and profound effect on body awareness and identity. Participants experienced their body once again as theirs, owning it and above all, allowing it to be a source of strength, joy and meaningfulness. While MS determined their lives prior to the journey, they now could look at MS as a part of what they are, without totally being absorbed in it. So being a patient with MS before, resulted in merely having MS after the climb. Implications for Rehabilitation Patients experience illness as a disruption of their previous life. A phenomenological approach deals with the lived experience and the concept of body awareness, the meaningful experience of living in the world through the body. This approach complements biomedical viewpoints as providing different. Suffering from a chronic and unpredictable disease like multiple sclerosis (MS) can disturb the implicit and harmonious relation between the body, the mind and the world, already at an early stage. Factors including physical training, professional guidance, social support, becoming a role model and completing a unique expedition outside of national and natural comfort borders may contribute to changes in body and identity experience.

Persons with multiple sclerosis (PwMS) experience several physical and cognitive problems which can influence their travel behaviour. This study aimed to document the number of activities, the activity type and the transport mode of the related trips that are daily made by PwMS. Their outdoor activity and travel behaviour was studied in relation to disease-related disability.Thirty six PwMS (Expanded Disability Status Scale, EDSS, 1.5-8.0, age 27-63) and 24 healthy controls (age 25-62) were studied, using activity-related travel diaries and GPS tracking devices. Information about overall disability characteristics was gained by standard clinical tests and questionnaires. PwMS were further divided in three subgroups based on EDSS cut-off scores 4.5 and 6.5.Persons with mild ambulatory dysfunction (EDSS 1.5-4.0, n = 17) showed similar travel characteristics to healthy controls, with few restrictions during travelling. Statistically significant changes in activity and travel behaviour were detected in the moderate (EDSS 4.5-6.5, n = 8) and severe MS subgroups (EDSS 6.5-8.0, n = 11) compared with healthy controls: driving independently became less frequent, significant more trips were made with company and the duration of performed activities had increased.The combination of self-reported travel diaries and objective GPS loggers offered detailed information about the actual outdoor travel behaviour of PwMS, which was significantly changed in PwMS with EDSS greater than 4. Implications for Rehabilitation Activity and travel behaviour changes significantly in persons with multiple sclerosis (MS) with moderate to severe disability (EDSS greater than 4). Behavioural therapy could help to develop better coping and problem-solving skills to overcome anxiety in the making of trips by persons with MS with a mild severity. Enhancing community environments could serve as a promising approach to increase the outdoor participation of persons with (more severe) impairments.

To investigate whether driving performance is impaired in persons with mild to moderate multiple sclerosis (MS).This study included 15 persons with MS (pwMS) and 17 healthy controls. The MS group exhibited mild to moderate impairments on the Expanded Disability Status Scale (median, Q1-Q3; 3.5, 2.5-4). The driving simulation required participants to drive in daily traffic while attending to a divided attention (DA) task. Computerized measures on the driving task included number of accidents, tickets, speed maintenance, standard deviation of lateral position, and time to collision. Response times and accuracy on the DA task were also computer generated. Additionally, pwMS completed a clinical evaluation encompassing motor, functional, visual, psychosocial and cognitive tests.No differences between healthy controls and pwMS were observed on all measures of the primary driving task. PwMS performed worse than healthy controls on DA response time (3.10 s, 2.87-3.68 versus 2.15 s, 2.04-2.43; p = 0.001) and accuracy (15 correct answers, 11-18 versus 24 correct answers, 22-25; p0.0001). Depression was significantly associated with time to collision (r = -0.77; p0.01).Subjects with mild to moderate MS are able to prioritize the driving task above the DA task. The relationship between depression and driving performance in MS merits further investigation.

This study investigated the relationship between self-reported use of the upper limbs and clinical tests in persons with multiple sclerosis (pwMS).This cross-sectional study involved 25 pwMS with upper limb dysfunction. The Motor Activity Log (MAL) was bilaterally applied to investigate the self-reported use of both upper limbs. Clinical tests on function level were the Motricity Index (MI) and the Brunnström-Fugl-Meyer (BFM). On activity level, the Action Research Arm test (ARAt) was conducted. To identify the relationship between the self-reported use and the clinical tests, Spearman correlation coefficients were calculated. Subgroups of dominant and non-dominant arms were differentiated, and compared with the Wilcoxon Signed rank test.The highest correlations were found between the MAL and function level tests: MI (r = 0.83, p 0.01) and BFM (r = 0.75, p 0.01). A lower correlation was found between the MAL and the ARAt (r = 0.49, p 0.01). For all outcome measures, the absolute scores were higher for the dominant hand. Higher correlations were found for the non-dominant compared to the dominant hand.The self-reported use of the upper limbs was highly associated with measures on function level. The association with activity level was, however, less pronounced. Magnitudes of relationships were influenced by hand dominance. Implications for Rehabilitation Self-reported use of the upper limbs in persons with MS, measured by the MAL, is highly associated with muscle strength and movement control. The ARAt (activity level of the ICF) is less associated with self-reported use compared to outcome measures at function level. The ARAt seems to be less sensitive to mild arm dysfunction. This study indicates that it is feasible and clinically relevant to apply the MAL as a self-reported outcome measure of upper limb use in MS.