Just over a month on from the sad death of former rugby league player Rob Burrow CBE, we spoke with neurology lead nurse Tracey Smith, who works for the East and North Hertfordshire NHS Trust, about motor neurone disease (MND).
MND is a progressive neurological condition that affects motor neurons controlling voluntary muscles. As these neurons deteriorate, the muscles weaken, leading to increasing disability.
Early identification and support are crucial for managing the disease and maintaining quality of life, as Tracey tells us:
It’s vital to spot the symptoms of MND early. These can vary but follow a pattern of progressive muscle weakness. Key signs to watch for include:
· Muscle weakness and wasting: This typically begins in the hands, arms, legs, or the muscles involved in speech and swallowing. Patients may notice difficulty performing tasks like buttoning a shirt or climbing stairs.
· Fasciculations (muscle twitching): Widespread, visible, involuntary contractions of muscle groups are common, but can also occur in people without any Illness.
· Spasticity and muscle cramps: Increased muscle tone and stiffness, along with painful cramps, often occur as the disease progresses.
· Slurred speech and difficulty swallowing (Dysarthria and Dysphagia): These symptoms result from weakness in the muscles controlling the mouth and throat, affecting communication, and eating.
· Emotional lability: Patients might exhibit inappropriate laughing or crying due to changes in the brain’s emotional regulation areas.
Diagnosis of MND involves a thorough clinical examination and a series of tests to rule out other conditions. Key diagnostic steps may include:
· Neurological examination: Assessing muscle strength, tone, and reflexes.
· Electromyography (EMG) and Nerve Conduction Studies (NCS): Evaluating the electrical activity in muscles and the speed of nerve impulses.
· Magnetic Resonance Imaging (MRI): Imaging the brain and spinal cord to exclude other causes of symptoms.
· Blood and urine tests: To exclude other diseases with similar symptoms.
· Referral to a neurologist with experience in MND: To ensure an accurate diagnosis and the initiation of appropriate management plans.
Living with MND requires a multidisciplinary approach to care, involving neurologists, physiotherapists, occupational therapists, speech and language therapists, dietitians, and mental health professionals. Here’s how to access comprehensive support:
· Specialist clinics: MND clinics provide access to a range of specialists in one location. They can tailor treatment plans, offer clinical trials, and provide emotional support.
· Charities and support groups: Organisations such as the ALS Association, MND Association, and local support groups offer invaluable resources, including information, advocacy, equipment loans, and emotional support for patients and caregivers.
· Home Care Services: In-home care services can help with daily activities, medical care, and respite for caregivers.
· Palliative care: Early involvement of palliative care can help manage symptoms, provide psychosocial support, and ensure advanced care planning is in place.
While there is currently no cure for MND, early recognition of symptoms and accessing a robust support system can significantly enhance the quality of life for patients and their families.
If you or a loved one exhibits signs of MND, consult a healthcare professional promptly to begin the journey of comprehensive care and support.
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