Living with MND
Being diagnosed with MND can be frightening and confusing. However, a number of organisations and treatments are available to help people adjust to the life changes brought on by MND.
Adjusting to MND means making some changes to one’s everyday life. For instance, if you drive, you are legally required to notify the DVLA if you are diagnosed with MND. You will not necessarily have to stop driving right away, but will probably be issued a time-restrictive license corresponding to reports from your GP.
Although sexual urges are not directly diminished by MND, the loss of muscular function may make sexual activity increasingly difficult. Should this occur, talk to your partner to find other mutually satisfying ways to express sexual desire.
Anyone diagnosed with MND is eligible for government benefits, regardless of income levels and employment status. However, government funding allows people with MND to remain in work as long as they are physically able to do so. If you are diagnosed with MND and wish to continue working, obtain a referral to a Disability Work Adviser from your local job centre.
Many government and medical organisations provide information, help and support for people with MND and their family and friends. One such organisation is the Motor Neurone Disease Association (MNDA), which runs the MND Connect helpline and offers equipment loans, publications on MND, financial support, and other services. The NHS can connect people with MND to a GP, dietician, physiotherapist and speech therapist, while Social Services can assess the level of care required. Both Social Services and local hospitals can provide referrals to an occupational therapist.
Although scientists have not yet discovered a cure for MND, certain treatments can ease or slow its development for an improved quality of life.
One treatment option is Riluzole, a medication that slows the progress of MND symptoms by a few months. Riluzole inhibits glutamate production in nerve signals (excess glutamate can damage the brain and spinal cord, and is sometimes associated with the onset of MND).
A mask ventilator system is another treatment option. Wearing a mask ventilator overnight during sleep has been shown to improve general quality of life and extend survival for people with MND.
For those who have trouble eating due to MND, a gastrostomy – a small feeding tube inserted directly into the stomach through the abdominal wall – can help. Fluids and liquefied food can then access the stomach through the tube, allowing the person to receive vital nutrients without having to chew or swallow.
MND can affect people emotionally as well as physically. Depression can often occur as symptoms worsen and performing everyday activities becomes more difficult. This can be treated with psychological help, antidepressant medication and emotional support from family and friends.
Treating MND also requires the aid of qualified therapists. Physiotherapy can improve general muscle strength and function, while speech therapy can help when forming words and speaking becomes difficult.
Complementary therapies such as massage can also improve the day-to-day quality of life for people with MND. Find a qualified practitioner and check with your GP before undergoing massage treatment or similar therapies.