Healthtalkonline, the UK based award-winning website of the DIPEx charity, features personal stories of health and illness to enable patients, families, carers and healthcare professionals to benefit from the experiences of others
The information on Healthtalkonline is based on qualitative research into health experiences led by experts at the University of Oxford.
The MND section includes interviews with 35 people with MND and 11 carers talking about their experiences.
Issues covered in this resource include:
Diagnosis:
First symptoms, path to diagnosis, immediate reactions to diagnosis, possible causes of MND, telling others
Treatment/ interventions:
Medication, trials and research, PEGs, RIGs and ventilation, Complementary therapies and alternative treatments, physical therapy and exercise
Information and support:
Information needs, support groups and meeting others
Work/ career and money:
Work and career, finances and benefits
Living with MND:
Mobility, arm and leg weakness, aids, equipment and adaptations, personal care and care support, speech and communication, eating, swallowing and breathing, tiredness, pain and discomfort, forgetfulness and thinking, emotional lability, depression and low mood, relationships and sex, leisure, holidays and travel, impact on family carers
Feelings about life and the future:
Philosophy, attitude to life and messages to others, hospices, respite and thoughts about future care, thoughts about death, dying and bereavement
Health and social care professionals:
Coordination of care, messages for professionals