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England Rugby League’s Men and Women return to international action on Saturday 29 April for the first time since last year’s Rugby League World Cup – a double-header with France at Warrington which is the launchpad for a game-wide fundraising effort in aid of the MND Association. Some of our sheets have been converted into small booklets to bring similar subjects together. Explore the option above for guides and booklets. Overviews Guidance on intimacy for anyone affected by MND. The booklet explores ways to maintain physical connection with disability, this inclusive content offers support whether in a relationship or not, and regardless of sexuality. An outline of the services provided by MND care centres and networks, as part-funded by the MND Association. Information to help if you are supporting someone with MND who may be affected by changes to thinking and behaviour.
This section of our guide about planning ahead, looks at how to handle sensitive conversations to help everyone feel better prepared. Information for use by children and young people An A5 flyer mentioning the range of information we provide for people living with and affected by MND, or Kennedy’s disease. An interactive version of the ADRT form included in information sheet 14A - Advance decision to refuse treatment (ADRT) and advance care planning. If you become unable to make decisions or communicate, an ADRT allows you to state in advance which treatments you wish to refuse or withdraw in specific circumstances. A gift from you today will not only help to support families living with MND, like Rob’s, but will also fund vital research in the search for a cure. With your help, we hope to save other families from the heartache of a motor neurone disease diagnosis in the future.Information about Kennedy’s disease, which is a separate, but similar condition to MND and is supported by the MND Association. Our booklet on finding emotional support when bereaved. Includes a practical overview of what to do when someone dies, and supporting children and young people who may also be grieving.
A guide to help you if you have reading difficulties or learning disabilities and have been diagnosed with MND. This resource has been endorsed by Mencap.
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Detail on environmental controls and how they may be helpful if you're living with MND. End of life support Our booklet containing information answering possible concerns about sexual expression and intimacy, for anyone affected by MND. I have a physical problem which affects my speech, but I can hear and understand you. Your help and patience would be appreciated. Thank you.” How to open conversations about your diagnosis with family, children, friends, colleagues and health or social care professionals. This guide includes information on difficult conversations, planning ahead and using advocates to help you raise awareness of your needs.
The shirt represents three things I love dearly: England Rugby League; the MND community and, of course, Rob. Throughout Rob’s diagnosis the Rugby League world has got completely behind him. It shows the impact he had and continues to have on the sport. And the players who get to wear it will feel incredibly proud to represent Rob and their country – they’ll feel 10 feet tall. It can feel challenging to plan ahead for future care and end of life, but this can help ensure your wishes are respected. It may also help those close to you feel better prepared. Guidance on how ventilation can be withdrawn, if wished, and questions to raise with the professionals who support. Developed by SITraN – the Sheffield Institute for Translational Neuroscience and made in collaboration with people living with MND, their videos help explore decision-making about assisted ventilation and how it is used in daily life. An explanation of why we ask for information and how it is used. This sheet also explains how we protect confidentiality and your rights. Disease types
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Our storybook, featuring three family-based stories to help young children identify with the characters and begin to adjust to the changes that MND can bring to family life. You can also visit our online activity hub for children, MND Buddies, to read and listen to the stories, along with games and other activities. An outline of hospice and palliative care, with details of how this type of care can support you and help improve quality of life. This sheet also includes information on planning ahead, read when you feel ready to do so. Medication Support for raising awareness about the needs of someone with MND, including use of an advocate who can speak on behalf of the person who has been diagnosed. This may be needed if they have problems with their speech. Information about available options if you are living with MND and considering whether to continue or leave employment. If you have MND, the following resources can help you make decisions about therapies, treatments or care. Often called patient decision making aids, this type of information is about understanding the choices available and how these might affect you and those close to you.
An overview of the range of care available to help you if you have MND or Kennedy's disease, from primary care through to specialist. Guidance on riluzole, which is the only drug licensed in the UK to help treat MND. Physical therapies See also references to forms in the next drop down as further ways to raise awareness of your needs.Identifying difficult emotions that may happen for people with a diagnosis of MND and their carers. This guide includes how to seek support and the different therapies available. Researchers at Southampton University have developed a web-based patient decision aid for people with MND considering a gastrostomy tube. It aims to help people living with MND choose whether they want to have a gastrostomy tube fitted now. If they decide not to go ahead, they may want to revisit the decision later.
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