MS Patients Who Trek Machu Picchu Say "Never Give Up"
How would you like to travel to Peru and climb Machu Picchu as part of a multiple sclerosis research study?
That’s exactly what nine Belgian men and women with MS did as part of a 10-month observational study and awareness project. Results from the study, including reduced motor fatigue, are discussed in Multiple Sclerosis International (D’hooghe et al., 2014).
Staying active is important for overall health and well-being. It is known that people with MS can become much less physically active as compared to healthy individuals of the same age, even when they experience limited or mild neurological disability. Persons with MS may feel less capable of accomplishing physically demanding tasks or may lack a strong belief in their ability to reach goals.
In the context of an awareness project to promote physical activity and participation in MS, researchers investigated the impact of training for and participating in a unique expedition to Machu Picchu, the famous site of an ancient Inca city in the Andes mountains of Peru. The 5-day Salkantay expedition took place in September 2012.
Neurologists and physiotherapists in Belgium recruited ten individuals with mild or moderate neurological disability due to MS and a high degree of motivation to participate in this study. As these individuals would serve as ambassadors to the MS community as part of this awareness project, one woman dropped out of the study because she didn’t want her diagnosis to become widely known.
The nine participants who completed the study included 6 women and 3 men with relapsing MS. Participants were between 28 and 49 years of age (median: 42) and had been diagnosed with MS between 3 to 24 years (median: 9). Expanded Disability Status Scale (EDSS) scores, as assessed by a neurologist, ranged from 1 to 4 (median: 3) at baseline. The three participants with EDSS 4 presented with cardiovascular risk factors (two with smoking and one with obesity). Five participants used MS disease-modifying therapy.
Information regarding medical events, relapses, and self-reported neurological worsening was documented throughout the 10-month observational study, extending from 6 months before the expedition to 4 months afterwards. Validated patient-reported outcome (PRO) measures were used to assess fatigue, self-efficacy for exercise, walking abilities, and illness perception during the training period and following the expedition. Based on initial exercise tests, each participant received a personalized training schedule to prepare for the 45.5 kilometer hike.
During the study, minor events were observed in two thirds of the participants, all of whom either had moderate disability, cardiovascular risk factors, and/or comorbidities (rheumatoid arthritis, narcolepsy) at baseline. The three participants with mild disability and no cardiovascular risk factors or comorbidities were free of medical and neurological events. The relapse rate during the study did not markedly differ from the relapse rate in the previous year. Seven relapses occurred in five participants, three of whom used immunomodulatory drugs.
At the end of the study, motor fatigue was significantly reduced, especially in participants with mild disability (EDSS < 4 at baseline). Cognitive fatigue, self-efficacy, and self-reported walking abilities did not change significantly. Perceived illness consequences, identity, and concerns appeared to decline over time.
Authors note that any combination of factors - motivation, participation, professional coaching, social support, illness beliefs, reduced anxiety and depression - may have played a role in reducing fatigue before and/or increasing fatigue after the expedition. Social interaction may also affect the perception of fatigue.
Participants described the Machu Picchu expedition as physically and mentally taxing. Several subjects reported a less dominant perception of MS as they expressed having a life with MS. Although most participants reported feeling stronger, some of them also expressed the hard confrontation with limitations due to MS.
The experience of well-being when being physically active, the support from family, friends, and MS community, and professional coaching were experienced as very helpful and encouraging. The messages to other people with MS included advices to be physically active, to be open for new experiences, and to never give up.
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