This page is filled with resources designed to help various needs. There are different sections including helpful websites, free downloadable documents and signposting to charities that can provide support and advice.

Free downloadable documents:

Campaign For My Brain’s “HD & Me” – a personal profile all about how Huntington’s affects you as an individual.

https://drive.google.com/file/d/1Mlpdw5WHtwfPrsKQ3zRX6Z9SseruRZ3B/view?usp=sharing

Campaign For My Brain’s “All About My Brain” – a personal profile all about how your neurological condition affects you as an individual.

https://drive.google.com/file/d/11EpxtEuXOZaO7BV5Y9YrYwUCyDbHN7YQ/view?usp=sharing

PSP ‘All About Me’ Document: file:///C:/Users/Emma%20Davis/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/All-about-Me-web-excl-guidance-notes.pdf

Alzheimer’s Society ‘This Is Me’ document: https://www.alzheimers.org.uk/sites/default/files/2019-03/Alzheimers-Society_NEW_This-is-me-booklet_190318.pdf

Hospital Passport NHS Document for individuals with Learning Disabilities: http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Documents/Hospital%20Passport%20Template%20example%20from%20South%20West%20London%20Access%20to%20Acute%20Group.doc

Huntington’s disease:

Huntington’s Disease Association https://www.hda.org.uk/

Huntingon’s Disease Youth Organisation https://en.hdyo.org/

Melanie cared for her brother Nick, who sadly passed from Huntington’s disease earlier this year. She is a beautiful writer, and writes raw blogs about being a carer, unpaid, and about the grief that follows when you are no longer a carer. http://a-carersjournal.blogspot.com/

A blog created by someone who has a Dad positive with HD, and a Nan. She shares the journey of hers, and will be posting up to date research and information to raise awareness. On Instagram : @youmeandhd https://youmeandhd.wixsite.com/huntingtonsdisease/post/my-story

This is a blog that a lady has started following her Husband’s diagnosis of Huntingtin’s Disease. The latest post focuses on their participation in clinical trials. https://ourlifeinhd-familyof3.blogspot.com/

I’m Not Drunk: Lifestyle blog. A young carer’s blog about her Dad’s life with Huntington’s Disease. https://kyraashley.wordpress.com/2016/09/04/imnotdrunk/

Michael’s wife has had Huntington’s disease for 11 years, and is in advanced stages. He blogs about grief to try and help others come to terms with it. https://www.reachingout.love/

Advice from the Huntington’s Disease Association on genetic testing for HD: https://www.hda.org.uk/getting-help/if-youre-at-risk/genetic-testing

Family planning advice for those at risk of Huntington’s Disease:https://www.hda.org.uk/getting-help/if-youre-at-risk/starting-a-family

Huntington’s Disease Youth Organisation offer a range of pages for young children, teenagers, adults, parents, and also information on Juvenile Huntington’s Disease. There are interactive resources for children to get them engaged https://en.hdyo.org/

Parkinson’s disease:

Parkinson’s Disease initiative to raise awareness and provide vital information of new ways to help those suffering from Parkinson’s Disease https://www.drugscience.org/parkinsons/

Parkinson’s Society UK https://www.parkinsons.org.uk/

Motor neurone disease:

Pain in the ‘ALS’: One Man’s journey with Motor Neurone Disease http://www.painintheals.co.uk/

MND Association https://www.mndassociation.org/

Understanding my needs document from the MND Association, helps you to document your needs in one place. and you can find it in the Forms to help you communicate your needs drop down at: https://static.mndassociation.org/app/uploads/2017/05/19135707/understanding-my-needs-interactive.pdf

Multiple Sclerosis:

Overcoming MS – A charity that advocate using a positive evidenced based lifestyle, to manage MS and improve symptoms and well being! Check them out https://overcomingms.org/

MS Society UK https://www.mssociety.org.uk

Information on neurological diseases:

Genetic Alliance UK https://www.geneticalliance.org.uk/

Disabled World: A to Z of Neurological Diseases https://www.disabled-world.com/health/neurology/disorders-list.php

National Organisation For Rare Disorders https://rarediseases.org/

Support avenues:

The Samaritans https://www.samaritans.org/

Carers UK https://www.carersuk.org/

Public Health campaign ‘We are Undefeatable’, the aim is to encourage people with long term conditions to be more active, with lots of tips and testimonials https://weareundefeatable.co.uk/

Care advice:

NHS England: Continuing Healthcare Funding https://www.england.nhs.uk/healthcare/

Care to be different: Resource on NHS Healthcare funding https://caretobedifferent.co.uk/

Government information on the responsibilities of local authorities within the Care Act: https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-factsheets

Resources for genetic testing:

NHS advice on genetic testing:https://www.nhs.uk/conditions/genetics/services/

Advice from the Genetic Alliance on Pre-implantation Genetic Diagnosis:https://www.geneticalliance.org.uk/information/service-and-testing/preimplantation-genetic-diagnosis-how-does-it-work/

Resources for young people:

Gloucestershire Young Carers http://www.glosyoungcarers.org.uk/

The Honeypot Children’s Charity offers both respite breaks and outreach support to young carers and vulnerable children, many of whom would otherwise have nowhere to turn https://www.honeypot.org.uk/what-we-do/how-we-help/

This charity raise awareness of their needs, campaign for policy change, support schools, and work to see that these young people get the future and support they deserve https://www.childrenssociety.org.uk/

‘Kids’ charity provide support to young carers under the age of 18, whose lives are restricted in some way because they are supporting a person who is ill, has a disability, mental illness or misusing a substance.  This could include a parent, sibling or close family member. This allows the young carer to take time out for themselves, socialise and cope with the demands placed on them as carers https://www.kids.org.uk/

Resources for professionals or employed carers:

‘Understanding Neurology’ e-learning course – This was created by the Essex Neurology Network for health and social care practitioners (throughout the UK) who provide services and support for people affected by neurological conditions. The course provides insight into what it is like to live with a neurological condition including brain injury, epilepsy, multiple sclerosis, motor neurone disease, Huntington’s disease, Parkinson’s, Progressive Supranuclear Palsy and stroke. Available at: https://www.understandingneurology.co.uk/

Huntington’s Disease Association resources for professionals https://www.hda.org.uk/professionals

Epilepsy UK resources for professionals https://www.epilepsy.org.uk/professional

Parkinson’s UK resources for professionals https://www.parkinsons.org.uk/professionals/uk-parkinsons-excellence-network

Progressive Supranuclear Palsy Association resources for professionals https://pspassociation.org.uk/information-and-support/for-professionals/

Charities

Here a few charities, some of which you may already know. If you are early in your journey, don’t underestimate the positive impact and support that a charity can provide.

***If you know of a charity, please email me and I will add it on!***

PSP Association https://pspassociation.org.uk/

MSA Trust https://www.msatrust.org.uk/

Alzheimer’s Society https://www.alzheimers.org.uk/

Cerebral Palsy https://www.cerebralpalsy.org.uk/

Brain Injury Association UK https://www.headway.org.uk/

The Brain Charity https://thebraincharity.org.uk/

Stroke Association https://www.stroke.org.uk/