The South African Motor Neurone Disease Association was founded in late 1990, to bring together all those people with a family member with MND and who were concerned about the total lack of support in Africa. They had experienced the fantastic backup support system available in Canada & UK, and decided to form a Committee to help those in the Western Cape, which is where they all lived. The Association became affiliated to the Hospice Association of South Africa in 1994 and now has branches in Gauteng and KZN with the Head Office in Cape Town. It is a voluntary organization and its main concern is the welfare of the MND sufferer.
MISSION STATEMENT of MNDA of SA
“To provide the best possible support for people living with Motor Neurone Disease, their families and carers, via a support service of both physical assistance and psychological counselling. To loan patients the equipment required. To publish a quarterly newsletter for patients, family members, doctors, hospices, therapists and donors.”
HOW CAN I HELP?
By making a much needed donation or joining the MNDA of SA, or preferably both. We are always short of funds and appreciate help from a wider circle than our members, who contribute the backbone of our annual requirement to cover running costs.
Motor Neurone Disease is due to the degeneration of these motor neurones. Degeneration of the upper motor neurones causes both weakness, stiffness and resistance to movement in the muscles with changes in the reflexes which the doctor can elicit. Degeneration of the lower motor neurones causes wasting of muscles, weakness, fasciculations (flickering of small groups of muscle fibres occurring spontaneously) and muscle cramps.
Symptoms MND presents itself in various ways depending on the particular groups of muscle fibres which degenerate initially, Wasting and weakness of muscles of the hands, sometimes one side first, stiffness in the legs with dragging of one leg or the development of marked weakness in the legs may be the initial symptom. Sometimes the muscles of the tongue and swallowing mechanism are affected early with slurring of speech, difficulty in swallowing and coughing. The disease may remain relatively stationary for some time or may progress to other limbs to the tongue and to the breathing muscles. Death in MND is usually caused by the combined involvement of the swallowing and breathing muscles causing a severe pneumonia. Motor Neurone Disease does not affect the intellect, does not cause bladder or bowel symptoms and does not cause sensory, visual or hearing disorders.
Life Expectancy is variable from I year up to 5 years (or occasionally longer) after onset depending on the activity of the disease and the particular muscle groups that are affected.
Who gets MND? The majority of people with MND are aged 50 years and older but occasionally people in their 20’s and 30’s develop MND. It is not known why an individual gets MND. There is a male predominance of 2:1. There are rare familial types of the disease.
What causes MND? This is not known at all. Suggestions as to the cause include: (a) toxin from the environment. (b) trauma. (c) a virus which lies latent within the system for many years. (d) a premature degeneration of these nerve cells caused by some in-born defect in their constitution.
How is it diagnosed? Usually it is not difficult for the Neurologist to diagnose MND on the basis of the history and signs. Early signs may cause some initial difficulty. There is no specific laboratory test. Sometimes special tests (scans and myelograms) are necessary to exclude other diseases, Usually electrical tests on muscles and nerves are performed and a lumbar puncture may be done.
Treatment of MND While research is continuing worldwide, there is at present no treatment which will alter the course of the disease or affect its progression in any way. Treatments given are those which help the person with MND to cope with symptoms and disabilities and may involve drugs to reduce stiffness or resistance to movement. RILUTEK is the only licensed drug, which may help to slow the progression. The involvement of physiotherapists, occupational therapists, speech therapists and the provision of aids at home are all necessary to support the person with MND and the family.
www.mnda.org.za