Beyond Diagnosis
Motor Neurone Disease (MND)
A diagnosis of Motor Neurone Disease (MND) can feel overwhelming and life-changing. This guide has been created by The Sophie Reid Neurological Association to help you understand your diagnosis, access support and remind you that you do not have to face this journey alone.
What is Motor Neurone Disease?
Motor Neurone Disease (MND) is a progressive neurological condition that affects the nerves controlling movement. Over time it can affect walking, speaking, swallowing, breathing and everyday activities. Every person’s experience is different, and symptoms progress at different rates.
Common Symptoms
- Muscle weakness
- Muscle twitching (fasciculations)
- Muscle cramps
- Changes in speech
- Difficulty swallowing
- Weakness in the hands or feet
- Balance and mobility difficulties
- Fatigue
- Weight loss
- Breathing difficulties
What happens after diagnosis?
- Neurology follow-up
- Multidisciplinary team support
- Physiotherapy
- Occupational Therapy
- Speech and Language Therapy
- Dietetic support
- Respiratory assessment
- Counselling and emotional support
Managing symptoms
- Medication to manage symptoms
- Exercise and stretching where appropriate
- Energy conservation
- Communication support
- Nutrition support
- Breathing support
Living well with MND
- Focus on what matters to you
- Maintain routines where possible
- Accept support early
- Stay socially connected
- Plan ahead without losing sight of today
Equipment, adaptations and planning ahead
- Mobility equipment
- Communication aids
- Home adaptations
- Advance care planning
- Financial and practical support
Family, friends and carers
MND affects the whole family. Honest communication, practical support and making time for meaningful moments together can make a significant difference.
Looking after your emotional wellbeing
- Talk about your feelings
- Accept help
- Look after carers as well as the person with MND
- Access counselling
- Take one day at a time
Support available in Jersey
- SRNA free counselling
- Peer support
- Advocacy
- Education
- Signposting
- Community support