Motor Neurone DIsease

Motor neurone disease is a condition which affects the motor neurons – or nerves which control the muscles – and the brain. This causes muscular weakness and loss of control of balance, movement of limbs and speech Motor neurone disease is degenerative, meaning it worsens over time – there is no cure. A person has a 1 in 300 chance of developing motor neurone disease during their lifetime.

What are the signs and symptoms of motor neurone disease?

People with motor neurone disease may begin experiencing minor symptoms, such as difficulty walking. As the condition worsens, they will lose function of limbs, face, speech and organs.

Early symptoms might include:

  • Muscles spasms and twitching
  • Weak grip
  • Weight loss
  • Slurred speech
  • Leg weakness.

Later symptoms include:

  • Inability to walk
  • Difficulty swallowing
  • Difficulty breathing
  • Loss of movement throughout the body.

How does motor neurone disease get diagnosed and treated?

Currently, there is no cure for motor neurone disease and it does shorten life span – however people with the condition can live into their 70s. There are also treatments and aids to enable people with motor neurone disease to live as well as possible with the condition. 

Patterns of several of the symptoms associated with motor neurone disease can help a doctor refer a patient to a neurologist (specialist doctor of the nervous system) for assessment. Having a relative with the condition may also be an indication that a person should see a doctor, as there is a genetic component to the disease.

No single test can lead to a certain diagnosis, so a neurologist will work to eliminate the likelihood of other conditions first. MRI scans can help identify nerve damage and a lumbar puncture can also be used to take a sample of spinal fluid which can then be tested.

Treatment varies according to the individual patient’s need as their motor neurone disease progresses. A medicine called riluzole can also help slow the progression of the disease.

People with motor neurone disease may benefit from seeing a physiotherapist or a speech therapist, a physiotherapist to reduce muscle stiffness, occupational therapy to help with day-to-day tasks, as well as advice on diet as swallowing becomes harder.

Emotional and psychological support is often part of managing the condition – not just for the person themselves but also carers and loved ones.

There are a few ways to determine whether an employee has motor neurone disease, or to confirm a motor neurone disease diagnosis which requires reasonable adjustments:

  • An employee is legally obliged to disclose their motor neurone disease if their work involves operation of machinery or vehicles which may then become a health and safety concern as a result of certain motor neurone disease symptoms, i.e. muscle stiffness.
  • Even if the employee does not wish to, or have to, disclose their motor neurone disease, an employer can focus on making reasonable adjustments, rather than seeking to determine the precise disability their employee has.
  • Given that motor neurone disease evolves over time, with symptoms worsening as the person ages, it is important to maintain regular communication with the employee who has motor neurone disease so that the reasonable adjustments remain appropriate.

What reasonable adjustments are possible with motor neurone disease?

Employers have a legal duty to make reasonable adjustments for employees with motor neurone disease if they know, are aware of, or could ‘reasonably be expected to know’ that the employee has motor neurone disease. Most employees will tell their employer what reasonable adjustments they need. They often involve simple changes in the way an employer might usually do things.

If the employee does not disclose a health issue or disability which may affect their performance upfront, an employer should broach the subject sensitively if they suspect that there may be a disability behind the employee’s reduced performance. Reasonable adjustments can then be made in accordance with the employee’s needs, including, in the case of motor neurone disease:

  • Accommodating home or remote working: this can help if the employee has significant mobility issues which might affect their ability to commute into the office.
  • Making assistive technology available and training on how to use it: such as dictation devices, to enable easier use of a computer for employees who have limited movement in their hands and arms. This may also include assistive adaptations to the workplace, such as a lift or wheelchair ramp.
  • Making sure there is a flexible break schedule and easy bathroom access: for employees with motor neurone disease who may have decreased bladder or bowel control, or who have increased levels of fatigue.
  • Adjusting deadlines: to accommodate any communication or movement difficulties that the employee may face which affect their ability to work as quickly.
  • Adjustment to duties so that the person with MND can keep themselves and others as safe as possible. For example, people with MND are required to inform the DVLA, in case their ability to drive safely has been impacted. An employee may, as a result, be unable to commute, or operate machinery at work.
  • Raise awareness: for the employees with motor neurone disease to be better understood in the workplace, and to make employees feel comfortable with asking for help related to their motor neurone disease.

Motor neurone disease Signposting

MND Association – charity supporting people living with motor neurone disease through an advice helpline, loans for specialist equipment, information on communication aids and on benefits. The charity also collaborates with researchers working on treatment for MND (0808 802 6262).

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