What do I do now?
A diagnosis of motor neurone disease (MND) or Kennedy's disease can feel overwhelming and it may take time to adjust. Select from the following for what to think about next.
“The MND Association provides a bridge to direct people to access care and support through its publications and helpline.” Person with MND
MND is a complex disease that requires a wide range of support from a variety of health and social care professionals. There is a lot to think about, which may feel overwhelming.
Try not to make instant decisions about treatment, care, equipment or finances, until you have all the information you need. Being informed about the way your condition may affect you can help you feel prepared and plan ahead.
Ask your GP for referrals to health and social care professionals who can provide guidance. Having your needs assessed is important to help you make timely choices and maintain the best possible quality of life. For information on the professionals who may be involved in your care, see our page on types of care and who provides them.
You may also find your choices change over time. This is not unusual and you have the right to change your mind and review your plans at any point.
Life will not be the same with MND. Symptoms will progress and cannot be reversed, but the speed at which this happens can be different for each person. Appropriate support can help you live life as fully as possible.
There is a lot of information available, so we provide a simple information map: Where can I find the information I need? to help meet your individual needs. When ready, you can explore our wide range of information and resources.
To find out more about our services and support at the MND Association, see: Support and information.
While Kennedy’s disease may not be life-shortening, it will change the way you live. Appropriate support can help you live life as fully as possible.
As the symptoms are very similar to MND, you may also find our resources about MND useful. There is a lot of information available, so we provide a simple information map: Where can I find the information I need? to help meet your individual needs. When ready, you can explore our wide range of information and resources.
The MND Association supports people with or affected by Kennedy’s disease. To find out about the services we provide, see: Support and information.
If you have recently been diagnosed with MND, you may be able to take part in a clinical trial called MIROCALS, funded by the MND Association.
To take part, you need to be within two years of your symptoms first appearing and either have not been taking the drug riluzole, or only been taking it for less than one month. Your neurologist can refer you to a recruitment centre to take part in the trial. We provide more information on MIROCALS and other trials on our treatment trials page.
You can find more information about research opportunities on our get involved in research page.
Kennedy's disease research
If you have Kennedy's disease, you can join the Kennedy's disease national register by emailing: firstname.lastname@example.org Joining the register means that you give your consent to be contacted by the National Hospital for Neurology and Neurosurgery, and kept up to date with the latest information about the disease. They will also be able to contact you about new studies, drug trials and other initiatives for people with Kennedy’s disease.
The MND Register of England, Wales and Northern Ireland aims to collect information about every person living with MND. The information gathered in this database will tell researchers more about what might be causing the disease and help improve care for people living with MND.
For example, the data will help work out the number of people diagnosed with MND each year, how many people currently have the disease and how this changes over time. Information such as gender and ethnicity can be used to look for characteristics of people more likely to develop MND.
If you have MND, you may be invited to join the register through your local MND clinic. You can also join the register at: www.mndassociation.org/mndregister