Living with MND

What is Motor Neurone Disease?

Motor neurone disease (MND) describes a group of diseases that affect particular nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. In some countries, including the US, it is known as Amyotrophic Lateral Sclerosis (ALS). MND affects up to 5,000 adults in the UK at any one time. It can affect adults of any age, but is more likely to affect people over 50.

How does MND affect people?

MND causes messages from the motor (ie movement) neurones to gradually stop reaching the muscles which causes these muscles to gradually weaken, stiffen and waste. Because of this break in the body’s messaging system, MND can affect how you walk, talk, eat and drink. It can also cause breathing problems and in some cases people may also experience changes to their thinking and behaviour. However, it is important to remember that MND affects patients differently and the range of symptoms will not be experienced by everyone or at the same rate of progression. Because of this, it is a challenging condition for clinicians to treat as it is difficult to predict the course of the disease and anticipate potential needs and treatments. However, although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.

The MND Association produces a comprehensive range of publications about MND for both patients and professionals, including information leaflets and guidelines on aspects of care management. You can find these via the main website www.mndassociation.org. Just follow the links to publications either as downloads – or order by post by contacting the MND Connect team on 08088 026262.

Is there a cure or treatment for MND?

Our vision is a world free from MND and the Association is committed to playing a key role in the history of ending MND which is a life-shortening condition. Although there is currently no cure, some exciting developments are emerging from the various research programmes and clinical trials being undertaken in the UK and throughout the world. The MND Association has over 30 years of experience in funding the most promising research into this condition, which has resulted in us becoming a leader in the identification and funding of cutting-edge MND research both within the UK and across the world.

Research activities to find a cure or, in the meantime, establish effective treatments, are always of great interest to those of us who have been personally affected by MND and every year a proportion of the money raised locally is directed specifically towards research. As a branch we work closely with the MND research team based at LOROS and people with MND are encouraged to take part in clinical research projects if they so wish. As these local research activities are focused on people living with MND, patients may meet them when attending clinic or appointments at LOROS. The types of studies they are involved in include:

  • Research about specific problems or treatments.
  • Understanding what improves the quality of life for people living with MND and their families
  • Evaluating new therapies to see if they improve wellbeing.
  • Studies to understand the cause of MND.

 

If you would like to find out more about the LOROS research projects please email research@loros.co.uk or call the team on 0116 2318498.

For more detailed information about MND and the latest research activities and findings – see the MND Association’s website at www.mndassociation.org

What happens after diagnosis?

Following a diagnosis of MND, patients are usually referred to a specialist MND nurse and a wide range of health and social care professionals are available to advise and become involved as and when needed. In many areas, including Leicester, Leicestershire and Rutland, the care of people diagnosed with MND is co-ordinated through a multi-disciplinary team (MDT). MDT expert care, combined with an appropriate range of treatments or therapies, will be available to help those living with the condition maintain the best possible quality of life, for as long as possible. Much can be done to manage symptoms and to help maintain independence for as long as possible. There is also support to help those affected deal with the emotional impact of learning to live with MND.

The MND Association can also play a part in supporting those diagnosed with MND. So, whether you’re a patient, carer, friend, or clinician the MND Association can help in a variety of ways by providing information and advice on all aspects of living with MND, including a benefits advice service especially for people living with MND and their unpaid carer. We also offer a range of support and care grants available to people living with MND, their carers and dependant children. More information can be found on the Association website at www.mndassociation.org . You can also call 0808 8026262 or email mndconnect@mndassociation.org.

What support is available locally?

Medical, social and other services for people with MND in Leicester, Leicestershire and Rutland are provided by a number of local agencies eg. NHS, County and District Councils, LOROS.

Following diagnosis, most MND patients in our area are referred to the Leicester, Leicestershire and Rutland MND multi-disciplinary team clinic based at LOROS which provides co-ordinated clinical support for patients. However, if the initial diagnosis was made by a consultant neurologist outside the Leicestershire and Rutland area, ongoing support and care may be referred to the MND service provided by that health authority eg the Nottingham MND Care Centre.

The MND Association’s Leicestershire and Rutland branch also offers help and information through its team of Association Visitors (AVs) They offer caring, informed support to local people with MND and their families, visiting them and their carers at home or keeping in touch by telephone or email. All our branch AVs have personal or professional experience of MND and have been specially trained to work as part of a local team to help people living with MND in our area. As well as offering advice about the services and support available from MNDA and other organisations, they also support the work of the MND multi-disciplinary clinic based at LOROS. Our help is available for everyone, whether they are living with MND or close to someone who has been diagnosed. If you would welcome telephone contact or a visit from one of our team of volunteer visitors, do get in touch directly with our AV coordinator, Jenny Holmes-Shuttlewood or speak to one of the MND team at LOROS. See Contact Us

Where is the local MND Clinic?

Clinical support for most people with MND in our area is coordinated by the Leicester, Leicestershire and Rutland MND Multi-Disciplinary Team which is based at LOROS. The team includes specialist doctors, nurses, therapists and MNDA branch volunteers from the local MND Association and they hold a specialist clinic at LOROS twice a month on a Tuesday. Their aim is to support the patient, their family and carers with the issues that are important to them as the disease progresses. This may involve reviewing medication, providing practical advice on managing symptoms and coordinating the provision of equipment. See Contact Us