This information is for people newly diagnosed with motor neurone disease.
We realise this may be alarming news to you and hope to outline some basic information about this condition. We will also signpost you to more information, support and advice if needed. It is important to remember that not everything you may read about MND will necessary be relevant to you. There is a great deal of variability in how the disease affects each person, how it progresses and how long people live with the disease.
The name motor neurone disease (MND) describes a group of related diseases.
What does it affect?
In MND, nerves involved with some of the muscles are affected making the muscles not work normally. Motor neurones (or nerves) are progressively lost in the brain and spinal cord. The motor neurones job is to pass messages to muscles in the body telling them what to do. When messages don’t get through, the muscles become thin and weaker.
The muscles first affected tend to be those in the hands, feet and mouth but this is dependent on which type of the disease you are diagnosed with. Muscles can be affected leading to loss of mobility, difficulties with speech, swallowing or breathing.
How is the diagnosis made?
MND can be extremely difficult to diagnose because it is comparatively rare and early symptoms may be very slight. These can include clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other causes. There is no definitive symptom which would immediately indicate diagnosis and no test available to diagnose MND. Most of the tests you will have had are designed to eliminate other causes and sometimes the diagnosis is only definite after a period of time.
How can I find out more?
A variety of information is available for people affected by MND via the Motor Neurone Disease Association. They can be contacted on 08088026262 or you can look at their website at www.mndassociation.org.
They employ area support co-ordinators who can offer professional support and advice as well as local branches of volunteers you can be in touch with.
In Addenbrooke’s Hospital the co-ordinator of the MND Care Centre runs a specialist clinic for people with motor neurone disease.
The Care Centre team can be contacted for more information by telephone on 01223 216631 or by email at: firstname.lastname@example.org. Contact address: Department of Neurology, Box 165, Addenbrooke’s Hospital, Hills Road, Cambridge, CB2 0QQ.
We are smoke-free
Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151