Helpful Links

My Personal Blog
I used to write on daily which helped me so much for the first year to get it all out of my system, but now I don’t post as much but while it continues to help others I will continue sharing my problems for other sufferers and family or friends to understand a bit more.
http://www.dystoniasufferer.com/

I also run a closed group, at https://www.facebook.com/groups/411621248943296/
So you can come and chat or moan. Ask questions, or just need to feel that you are with others who understand what you are going through.
I do not accept any doctors, or other medical persons, including mindfulness etc. This group is a place to be a sanctuary for the people that need it, not to be watched or asked questions for research purposes. That is what the page is for if you wish to ask on the open page thats okay, but ABSOLUTELY NO ADVERTISERS, & NO SELLING THINGS.
If I find out that anyone is a doctor, psychologist or anyone who hasn’t been open and honest about who they are, then I will delete them from the group.
If you are a doctor or medical person who suffers with this disorder, please message me and we will chat. I will then put it to the group members, whether to allow you to join.
Ours is a group to chat, just chat and ask questions. I DO ACCEPT CARERS, but again if you will just message me so I know before you ask to join. Otherwise if you come across as asking too many questions like a researcher or doctor, I may delete you.
I hope this is clear and honest enough for all to understand. I care very much about all my group members, we go through emough as it is without having any upset brought to the group. BUT, I am letting people know it is here to help, care, and enable each other to get through each day, week, and the months ahead when we feel low. As a group it makes you stronger, so I hope wwe see some of you join.
Take care, Andrea 😀

Carers and disability benefits – including PIP (old DLA) – GOV.UK
This link gives a full list of links, for all sorts of benefits you may find of help.
https://www.gov.uk/browse/benefits/disability


Citizens Advice Bureau – the charity for your community
This link will help you find your nearest bureau. They offer help with any problems you may have by providing free, independent and confidential advice, and by influencing policymakers, or help with form filling.
http://www.citizensadvice.org.uk/

The Disability Law Service
Run by and for disabled people DLS is a registered national charity. They have provided high quality information and advice to disabled and Deaf people for over 30 years
http://www.dls.org.uk/

A Neurological Movement Disorder Site
Run by a Doctor Stone whose main interest is in this disorder.
www.neurosymptoms.org

Neuronauts Website
A site mostly about Dystonia, but covers other neurological disorders too. Plus you will find links to both their Facebook page, and Twitter feed.
http://www.neuronautsnow.org/home.html

Non-Epileptic Attacks
Run by a group of healthcare professionals, interested in developing effective treatments for non-epileptic attacks. The group consists of Neurologists, Psychologists and Psychotherapists. www.nonepilepticattacks.info

The Dystonia Society UK
Providing support, advocacy and information. www.dystonia.org.uk

Personal Independence Payment (PIP)

Information for all disabled people who claim benefits, and the new upcoming change to our DLA and Mobility benefits system payments with effect from 8th April 2013. When will it effect you? Claiming PIP www.gov.uk/pip-checker This is the link to check on when you may be effected by the new Personal Independence Payment (PIP) and …

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