Getting Help2020-10-14T18:17:05+01:00

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Frequently Asked Questions

What is Motor Neurone Disease (MND)?2020-10-14T16:23:15+01:00

Motor neurone disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do.

With MND, messages from the motor neurones gradually stop reaching the muscles. This leads the muscles to weaken, stiffen and waste. MND can affect how you walk, talk, eat, drink and breathe. Some people also experience changes to their thinking and behaviour. However, MND affects everyone differently. Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.

MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.

There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50.

MND affects up to 5,000 adults in the UK at any one time. As this is not a common disease, general health and social care professionals may not see many cases of MND. This means it is important to seek out specialists who have appropriate experience in its treatment and care – usually with referral to neurological services.

For more information, you may like to visit the national MND Association’s website for health and social care services.

Newly Diagnosed with MND2020-10-14T16:46:58+01:00

A diagnosis of MND is a daunting prospect and can feel overwhelming. You, your family and everyone close to you will need time to adjust.

We understand and many of our volunteers have been where you are now. So we are here to assist you at every step, should you want us to.

Much can be done to manage symptoms, to enable you to maintain independence for as long as possible and to help you deal with the emotional impact of MND.

A wide range of health and social care professionals are likely to be involved with you and your family, which is often referred to as a multi-disciplinary team (MDT). MDT expert care, combined with treatments or therapies, may help you to maintain the best possible quality of life, for as long as possible, when living with the condition.

The MDT are the medical experts, and the Branch can be here to guide you through the specifics of care in the local area (as services vary by county) and provide emotional support, as you need us to.

If you or someone close to you has been newly diagnosed with MND and would like more information about what to do next the main MND Association website can be helpful.

What are the symptoms of MND?2020-10-14T17:26:54+01:00

MND affects everyone differently, which makes it so difficult for everyone involved. It can affect how you walk, talk, eat, drink and breathe.

If you have known someone with MND previously, resist the desire to compare. Not everyone has all the symptoms, or in the same order, and the speed at which symptoms progress can vary radically. It is highly unlikely they will all develop at the same time though.

MND cannot be stopped or reversed, and although there is currently no cure for MND, therapies, equipment and medication can help manage symptoms. These can all help you achieve the best possible quality of life.

Always seek help from your health and social care professionals at the first sign of any change.

A specific list of symptoms and more information can be found in the Symptoms of MND section of the Associations website.

What about Living with MND?2020-10-14T18:17:49+01:00

We understand that there will be many questions, changes, emotions and feelings that are going to be part of this process.

MND is a life-changing illness and we are dedicated to making each change as smooth as possible. Our help is available for everyone, whether you are living with MND or close to someone who has been diagnosed.

Depending on your symptoms and how the disease develops, you and your family will need different levels of support at different times. Beyond the physical challenges, it can often be the partners and family members who struggle dealing with the effects of MND the most.

Understandably this may feel complex and overwhelming on top of the diagnosis but there is lots of information to guide you through this.

Alternatively, the West Sussex South Branch, and more particularly our trained Association Visitors can provide you with personal guidance and advice for your circumstances – and can be a useful bridge into navigating the range of services available.

Lots of our Branch members also find it useful to meet with others experiencing MND to share experiences and advice. The Branch meeting and socials may be a good way for you to do this.

Do you offer any local Support and Care?2020-10-16T16:17:41+01:00

Association Visitors and how they can help:

The Branch has a team of six professionally trained and supervised Association Visitors.

All our Visitors are volunteers who have been carefully selected and have undergone a thorough training programme. Our Visitors are based in the local community as members of a team and usually have contact with people over the phone, via video or email or will visit them in their own home. (Social Distancing permitting).

Talking with an AV and knowing that there is someone at the end of the phone often helps relieve the feeling of desperate isolation which can overwhelm people when they have just found out that they have MND.

An AV will let you know how the MND Association can be helpful, when and where meetings are held, how to apply for benefits and how to access specialised equipment. The branch is able to provide equipment which is either not available or not available quickly enough from statutory services and can facilitate any necessary Financial Aid grants to assist you.

For more information on our AV’s please visit Your Visitors page.

How do I find someone to talk to?2020-10-14T17:14:39+01:00

Please contact us via email or Facebook Messenger and we will get back to you very quickly.

We can arrange a call by phone or video, or a home visit or meeting as appropriate. Whatever you are comfortable with.

If you would like to talk to someone now please do call mnd connect.

MND Connect is part of the Association’s care information service and is open to anyone who wants information about MND including people with MND, family members, health and social care staff, students and members of the public. MND Connect is more than just a helpline. MND Connect offers people access to a quick route to get advice, practical and emotional support and directing to other services and agencies.

MND Connect is available 9am to 5pm and 7pm to 10.30pm Mondays to Fridays. Calls charged at local rate. Contact Number 08088 026262

What about Research into MND?2020-10-14T16:58:38+01:00

Research to find a cure or – at the least – effective treatments, is always top of the list of priorities for people and families who have been personally affected by MND.

There is a great deal of research into the disease to look for causes, treatments and cures happening right now. Every year a proportion of the money raised locally is directed specifically towards research.

As a branch we work closely with The Sussex MND Care and Research Network at Brighton and Sussex medical school. We are also currently funding a specific and exciting new research project with King’s Motor Neurone Disease (MND) Care and Research Centre in London.

People with MND are encouraged to take part in clinical research projects if they so wish.

Often people undertaking sponsored challenges decide that all or part of the money raised will go to research.

The MND Association has over 30 years of experience identifying and funding the most promising MND research. As of 31 December 2019, the research portfolio is approximately £14 million. Please visit the Research section of the national site to access up to date information on all aspects of research and to see which projects the Association is currently funding.

How do you raise awareness of MND?2020-10-14T17:17:41+01:00

‘What’s that?’ is still a common response when people hear the words Motor Neurone Disease.

We aim to raise awareness of the disease via this website, social media, campaigns and events, newsletters, engaging MPs and local media and by word of mouth.

We want everyone to know about MND and what it means for people and their families so that they will join us in fighting for the best standards of care and for more research.

Awareness raising can involve talking to groups, acting as the voice for MND at meetings, using displays and leaflets, writing to MPs, making the case for service funding with the Primary Care Trust (PCT).

Once people find out about the impact of this devastating disease on families we know they will be keen to support the fight for better care and more research.

Why not consider joining one of our Branch meetings, join our mailing list for the latest news or coming along to one of our fundraising events?

Support for Health & Social Care Professionals2019-11-28T17:36:22+00:00

The branch plays an active part in liaising and networking with health and social care professionals aiming for the best possible care for people with MND.

Because MND is a relatively rare disease the branch supports extra training and education about MND care for health and social care professionals. We are able to offer part sponsorship for people to attend local seminars, regional and sometimes national and international conferences.

The MND Association produces a very wide range of publications including leaflets and comprehensive guidelines on aspects of care management all of which are available via the main website www.mndassociation.org and follow links to publications either as downloads or to order by post by contacting the MND Connect team on 08088 026262

“When diagnosed with MND life goes on, but it is different.

We live in the 21st Century and we can adapt in ways that were not possible 10 years ago. The future will bring more and more.” Lee

Living with MND

The challenges can feel overwhelming. Planning ahead can help you maintain the best possible quality of life.

Mobility & Personal Care

Movement and mobility are likely to be affected by MND and these symptoms progress over time. This can impact on how you do things, get around and manage personal care.

Speech & Communication

MND can cause speech to become faint, slurred or unclear. It can also affect gesture and facial expression. This means communication can become increasingly difficult over time.

Eating & Drinking

If MND affects your swallow, you may find it harder to eat and drink. If movement and mobility are affected, mealtimes can take longer and you may lose weight or struggle in social occasions.

Emotions, Thinking & Behaviour

Any diagnosis of serious illness brings mixed emotions. Feelings can be unpredictable and intense, which is natural and expected. Thinking and behaviour may also be affected.

  • “People may not want to discuss things immediately, but they can always seek help later.” – Person with MND

Relationships & Family

Over time, support will be needed with MND and those close to you are likely to become involved in your care. This can raise questions about how relationships and social networks will change.

Breathing & Ventilation

Breathing may be affected, but there is a lot of support available. MND does not stop your body processing air, but it can weaken the muscles that help your lungs to inhale and exhale.


Keep on moving

Learning to maximise your life with MND is something that many of our members are passionate about – and eager to share their own experiences in order to help others.

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