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Dynamic everyday experiences of living with LGMD, Pain, Physical symptoms,…
Dynamic everyday experiences of living with LGMD
Impact of physical symptoms of LGMD
Cannot perform previously enjoyed activities
Reduced activity and fatigue impacts various activities
Assistance required for mobility
Constant adjustment to physical limitations
However
Pain
Chronic pain negatively impacts physical health
Is persistent
Is pervasive
Drains energy
Sleep
Pain accompanied physical symptoms of LGMD
Chronic pain is pervasive - impacts every aspect of life
May or may not accompany LGMD
Physical symptoms
What does one go through when they have symptoms of LGMD?
Secondary somatic conditions
Fatigue is persistent
Change is constant
Pain fluctuates
Disease progressions brings about change
Varying pain difficult to accommodate
intensity is measured on a scale
Functional ability
Begins Early in life
Becomes obvious upon usage
Severity levels
Energy drained
Cold temperature
Trying to make sense of emotional reaction
Physical and Mental Health influence each other
Health perception - What it means to people with LGMD
Health is not exclusive to just physical wellness
Health is mostly physical wellness
Health is being content regardless of physical status
Emotional parallel of living with LGMD
Chronic pain evokes negative emotions
Frustration
Strong emotions - anger
Feelings of unfairness
Opposite emotions
Mental strain as a result physical limitations
Involuntary early retirement
Fear of other's perception of them
Stronger if higher chance of being recognised
As disease progressed
Negative self-perception - shame
Uncertainty about disease prognosis (worry)
Constant adjustments brings about feelings of worry for future health
Diagnosis
Diagnosis more beneficial for for other people
Perceiving diagnosis as a way to collect information
Receiving diagnosis was overwhelming
Ever since diagnosis was received, there were some who were fearful of the time when they had to use a wheelchair
Misconception about using wheelchair
Perception of 'always' having the disease
Use of wheelchair required much mental preparedness
Not wanting to let go off functional ability
Poor approach to explain requirement of wheelchair use "doomsday talk"
Health is subjective and is both physical and mental intertwined
Better to make sure there is good mental well-being
Making sense of one's own diagnosis
Difficulty comprehending the impact of an LGMD diagnosis
Adequate information received
Psychological well-being through change in perception
Lack of information to better comprehend the diagnosis
Individual differences
Unintentional weight gain
Barriers and Facilitators to lead a good QoL
Gets Accustomed to the diagnosis with time
Learning to cope
Adaptive coping
Cognitive efforts
Behavioural efforts
Use of pharmachological support
Proactive
Prioritising allocating energy
Prioritising wellbeing