Sunday, 22 March 2015

ClinicSpeak: climbing in peru

What positive experiences about exercise have you got to share? #MSBlog #MSRsearch #ClinicSpeak

"At yesterday's BARTS-MS research day one of the most well received talks was on the effects of exercise in MS. No only are the effects physical, but psychosocial as well. During the roundtable discussion many MSers told me how much they value the benefits of exercise as a treatment of MS. The following qualitative study on the impact on of a climbing expedition to Machu Picchu on MSers lives is exactly what MSers were telling me yesterday. The moral of the story; get exercising! Please let us know if you have any positive experiences."


Calsius et al. "How to conquer a mountain with multiple sclerosis". How a climbing expedition to Machu Picchu affects the way people with multiple sclerosis experience their body and identity: a phenomenological analysis. Disabil Rehabil. 2015 Mar 19:1-7.

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.

9 comments:

  1. Participants may have completed a "physical training schedule for several months" prior to the Machu Picu but I note that no mention is made on what their level of mobility problems (EDSS etc) was either before or after the said training schedule. I'm not knocking their experience, which sounds wonderfully positive overall, but for me to just be able to walk for 15 minutes at a normal pace would be manna from heaven.

    ReplyDelete
  2. Exercise comes in all shapes and sizes. Before MS I was an avid runner and weekend warrior but after years of MS progression the goals have changed. Stretching, low impact strength training and short intervals of aerobic exercise on an elliptical are the mainstays. Exercise helps to alleviate fatigue as well. Persons with disabilities need a regular exercise regimen as much as if not more than a healthy individual. Sometimes just stepping up on a street curb using a cane is my mountain climbing in Machu Picchu.....it's the little victories that keep you going.

    ReplyDelete
  3. I was told I would not stand again after 3 months in hospital following an amazing coincidence of bad luck and wrong diagnosis in 2008. Now I can move from seat to seat standing. I may not have walked to Machu Picchu but every step I made have made me feel better.

    ReplyDelete
  4. "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."

    What a load of guff.

    ReplyDelete
    Replies
    1. Patronising garbage. I ran and played competition level sport before MS took it away. I push on for my family. Real research results would repair me - but they measure their impact by the number if enhancing lesions!

      Delete
  5. Trekking in Nepal , Trekking in Chaingmai , Canyoning in Oman , activities I've done after ms diagnosis , and yes it has had a profound impact on my self image and mental health !

    ReplyDelete
  6. Was this self funded? If not, what a waste of funding which could have gone into new treatments that will actually offer some benefit.

    ReplyDelete
    Replies
    1. Spot on. I could not agree more.

      Trekking in Peru, Timbuktu, Uzbekistan, Scotland - or wherever takes your fancy - is perfectly feasible for people who do not have a significant mobility problem with their MS. Not everone with MS does in the beginning. (And I believe that those who suffer optic neuritis are less likely to?) So there's nothing amazing about these people going for long walks. Nothing.

      Delete
  7. Dear prof g i have an same problem , i have visual, fatigue , coordination problems since 2004 , vep abnormal in 2004 , mri 09,10,11,2013 of brain ind spine normal, spinal tap normal , then in 2010 vep normal but : octopus at n1 program is abnormal showing deficits in vision field central and peri bilateral . Oct showed thining of rnfl in bouth eyes : temporary dx bilateral subclinic optic neuritis i visit 10 neuro and ms expert in croatia they all told me than all we need is sit and wait :( witch is quite frustrating since a have tinitus , visual disturbance called visual snow( i see static cross all my vision field) fatigue, coordination problems :(

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.