Human beings are described by many spiritual traditions as ‘blind’ or ‘asleep’ or ‘in a dream.’ These terms refers to the limited attenuated state of consciousness of most human beings caught up in patterns of conditioned thought, feeling and perception, which prevent the development of our latent, higher spiritual possibilities. In the words of Idries Shah: “Man, like a sleepwalker who suddenly ‘comes to’ on some lonely road has in general no correct idea as to his origins or his destiny.” In some religious traditions, such as Christianity and Islam, the myth of the ‘Fall from the Garden of Eden’ symbolizes the loss of the primordial state through the veiling of higher consciousness. Other traditions use similar metaphors to describe the spiritual condition of humanity:

The Human Condition.

https://digitalcommons.wayne.edu/cgi/viewcontent.cgi?article=1259&context=csr

Good Days, Bad Days: The Self in Chronic Illness and Time

The limb-girdle muscular dystrophies (LGMD) are a collection of genetic diseases united in their phenotypical expression of pelvic and shoulder area weakness and wasting. More than 30 subtypes have been identified, five dominant and 26 recessive. The increase in the characterization of new genotypes in the family of LGMDs further adds to the heterogeneity of the disease. Meanwhile, better understanding of the phenotype led to the reconsideration of the disease definition, which resulted in eight old subtypes to be no longer recognized officially as LGMD and five new diseases to be added to the LGMD family. The unique variabilities of LGMD stem from genetic mutations, which then lead to protein and ultimately muscle dysfunction. Herein, we review the LGMD pathway, starting with the genetic mutations that encode proteins involved in muscle maintenance and repair, and including the genotype-phenotype relationship of the disease, the epidemiology, disease progression, burden of illness, and emerging treatments.

/pdf/a-journey-with-lgmd-from-protein-abnormalities-to-patient-1myvlv2ife.pdf

A Journey with LGMD: From Protein Abnormalities to Patient Impact

Purpose To explore the lived experiences of people ageing with neuromuscular disease (NMD). Introduction NMD refers to several chronic types of hereditary and progressive NMDs. Owing to advances in rehabilitation and treatment, life expectancy has increased for some subtypes, resulting in life continuing into adulthood and even old age; however, knowledge of people's lived experiences with NMD is sparse. Methods A qualitative study using a phenomenological-hermeneutic approach inspired by Ricoeur was conducted. Fifteen persons with NMD were interviewed in 2018. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used. Results Four themes were identified: "A time-framed paradox of striving for independent dependency arises as age increases", "Ageing means entering no man's land", "Exercising is caught between shrinking surplus of physical energy and demands of everyday life" and "Ending work life is a jumble of relief, concern and altered self-perception". Conclusion The pathway to old age with NMD encompasses several transitions, all potentially including the risk of getting lost. Physical changes, changes in legislation, experiences of uncertainty regarding where one socially belongs and how to balance reduced physical strength in everyday life are indicated as key areas that affect ageing life with NMD.Implications for rehabilitationRehabilitation professionals should address ageing with NMD from a life course perspective and not with a singled minded focus on chronological age.A biopsychosocial focus is needed to prevent gaps and pave the pathway to old age with NMD.The experiences of multiple transitions when ageing with NMD should be in focus.

Ageing with neuromuscular disease: getting lost in transitions.

Aim To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD). Design A qualitative study using a phenomenological-hermeneutic approach. Methods Data were gathered through interviews with 15 persons living with NMD in 2018. A three-levelled analysis and interpretation influenced by Paul Ricoeur's philosophy were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used from May 2018 to December 2018. Results Three themes were identified: "Endless adaptations change the fundamentals of everyday life ageing with NMD," "The 'swamp' of deterioration" is traversed through experiences of belonging and relationship," "Being disabled by a professional knowledge gap and stereotypical images." In these themes, the experience of participation in everyday life ageing with NMD appeared to depend on the ability to adapt constantly. Through participation, a sense of belonging and purpose was maintained. Lack of knowledge amongst professionals may negatively affect the ongoing participation of people ageing with NMD.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/nop2.966

Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences.

PURPOSE: To describe perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support to manage daily life and using a wheelc ...

Perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support and using a wheelchair : an interview study

Anna Carin Aho

Papers

Perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support and using a wheelchair : an interview study