11/09/2025
๐ง MOTOR NEURONE DISEASE: Supporting Our Berkshire Community ๐
A Personal Message from Our Community:
Motor Neurone Disease (MND) affects our Berkshire community more than many people realise. Here in Reading, Wokingham, and across Oxfordshire, we've seen firsthand how this devastating condition impacts not just individuals, but entire families.
What is Motor Neurone Disease?
MND is a progressive neurological condition that affects the nerve cells (motor neurones) that control voluntary muscle movement. It gradually weakens muscles throughout the body, affecting walking, talking, eating, drinking, and eventually breathing.
The Berkshire Reality:
๐ Higher than average rates in our area - experts are still researching why
๐ Most people want to remain at home for as long as safely possible
โฐ Rapid progression means families need support quickly
๐ Each journey is unique - no two people experience MND the same way
Types of MND:
๐ธ ALS (Amyotrophic Lateral Sclerosis) - Most common form (65% of cases)
๐ธ Primary Lateral Sclerosis - Slower progression, affects upper motor neurones
๐ธ Progressive Muscular Atrophy - Affects lower motor neurones first
๐ธ Progressive Bulbar Palsy - Starts with speech and swallowing difficulties
Early Signs That Families Notice:
Weakness in hands or feet
Slurred speech or difficulty swallowing
Muscle cramps and twitching
Difficulty with fine motor tasks (buttons, writing)
Tripping or stumbling more frequently
Changes in voice or persistent hoarseness
Why Our Nursing Background Matters:
Our team understand the complex medical needs that come with MND:
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Respiratory monitoring and breathing support
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Nutrition management as swallowing becomes difficult
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Mobility assistance and equipment coordination
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Communication aids and technology support
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Medication management for symptom control
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Emotional support for individuals and families
"Living with MND in Berkshire - Sarah's Story":
"When my husband was diagnosed with MND at 58, we felt like our world had collapsed. The progression was so fast - within months he needed help with everything. Nurturing Nest didn't just provide care, they provided hope. Their nurses understood his breathing patterns, knew when he was uncomfortable before he could tell us, and helped us navigate the complex equipment and medications.
But most importantly, they treated him like the intelligent, loving man he still was, not just his condition. They enabled us to have precious family time instead of being consumed by care tasks. Those extra months of quality time together were priceless."
Local MND Resources We Work With:
๐ค Motor Neurone Disease Association - Local support groups
๐ค Thames Valley MND Support - Equipment loans and advice
๐ค Royal Berkshire Hospital - Specialist MND clinic
๐ค Local hospices - Respite and specialist care
๐ค Occupational therapy services - Home adaptations and equipment
MND doesn't just affect the body - it impacts the whole family:
๐ Grief for the future you'd planned together
๐ฐ Fear of the unknown and rapid changes
๐ค Frustration with communication difficulties
๐ช Determination to make every moment count
๐ Love that grows even stronger through adversity
How We Help Families Navigate This:
Honest conversations about prognosis and planning
Practical support that adapts to changing needs
Emotional support for the whole family
Coordination with the multidisciplinary team
Advocacy to ensure voices are heard
Memory making - helping families create lasting moments
Financial Reality:
๐ท Care costs can exceed ยฃ3,000 per week in residential settings
๐ท Home adaptations often cost ยฃ15,000-ยฃ30,000
๐ท Our flexible home care from ยฃ35 per hour
๐ฏ We help access: Attendance Allowance, PIP, and other benefits
๐ Fast-track CHC funding applications for urgent needs
If MND Has Touched Your Life:
๐ Immediate support: 0118 214 7099
๐ง Confidential discussion: manager@nurturingnest.co.uk
๐ Resources: www.NurturingNest.co.uk
๐ Local consultation: Suite 10, Chiltern Chambers, Reading RG4 7DH
Remember:
You don't have to face MND alone. Our Berkshire community is here to support you, and Nurturing Nest is proud to be part of that network of care.
๐ Share this post to help other families know support is available
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๐ฌ Comment if you'd like information about our MND support services