Frequently Asked QuestionsAnswers to Frequently Asked Questions about TM
Booklet from the Brain and Spine FoundationA booklet on Transverse Myelitis
Managing SymptomsBladder & Bowel Community Information, support and help line for bladder and bowel control problems. Go to their site to get a 'Just Can't Wait' card to gain access to toilets not always open to the public or to jump queues. Keys to disabled toilets are readily available from several sources - search on 'RADAR keys' to purchase one.
British Pain Society Multidisciplinary professional organisation 020 7269 7840 Continence Foundation Treatment of incontinence Depression Alliance Information and support services Fatigue Management Tips Family Relationship Coaching offered by Return to Wellness A Guide to Encephalitis in Children (relevant for ADEM) A Guide to Encephalitis in Adults (relevant for ADEM) InContact Incontinence products and supplies. Mobility Product Guides, and help to remain active. Pain Concern Information, help line, forum and magazine 0300 123 0789 Pain Support UK Find advice and support - and relief from pain. Information on neuropathic pain from the Brain and Spine Foundation. Wheelchair Yoga Health Related OrganisationsAssociation of Chartered Physiotherapists Interested in Neurology (ACPIN)
Brain & Spine Foundation UK charity giving info and support Devics Association UK based info site (sponsored) Encephalitis Society relevant for ADEM List of UK neurology departments and spinal units Neurological Alliance Collective voice for over 70 organisations Neuromyelitis Optica (NMO) NHS NMO specialised services Spinal Injuries Association (SIA) who have a variety of services including an Nurse Advocacy Service for people going into a hospital that may not know how to care for someone with spinal injuries. Transverse Myelitis Association USA / worldwide member organisation for those with TM and related conditions Transverse Myelitis Society UK based member organisation for those with TM and related conditions CarersCarers Direct (NHS) Information, advice and support
0808 802 0202 Carers Trust Action, help and advice 0844 800 4361 Carers UK The voice of carers 0808 808 7777 Contact a Family For families with disabled children 0808 808 3555 Home Start Support and friendship for families coping with children with illness or disabilities 0800 686 368 TM Society LeafletsTM Society Introductory Leaflet
TM Society Health Condition Insight Report, prepared for ATOS and CAPITA PIP Assessments |
Organisations for Disabled NeedsDisabled Living Foundation Impartial advice on equipment
0845 130 9177 The Disability Equipment Register Used equipment listing Disability Now Magazine Website for, about and by disabled people Recreation
Creative Minds - offers activities such as gardening, art and drama
disabled ramblers Access to the countryside for the disabled Euan's Guide - recommended to find disabled friendly places Gardening for the Disabled Trust Grants to people to continue gardening despite disability or advancing illness Recovery College - offers skills for various life skills geared to people recovering from long term health conditions Stitchlinks Therapeutic benefit of knitting Yoga for wheelchair users - links in this newsblog Wheelpower British Wheelchair Sport Disabled MotoringDisabled Motoring UK Campaigning charity for disabled drivers, passengers and Blue Badge holders
01508 489449 Driving with a Disability General Information from GOV.UK site 0870 600 0301 Motability Car Scheme Enables disabled people to use their government-funded mobility allowance to lease a new car, scooter or powered wheelchair 0845 456 4566 Mobility aids: Just Mobility News, reviews, vehicle sales and directory services for the mobility market 01923 265 577 Disabled Holiday InformationCarers UK Links to further sites for disabled holidays and breaks
NHS NMO Links to further sites and helpful advice Spinal Injuries Links to sites helpful for planning a holiday HertsActionDisability List of accessible holiday providers Conference presentations - YouTubeThe TM Association has loaded over 250 presentations from various conferences on to YouTube. Talks cover a wide range of subject matter from research to symptom management.
The TM Society had a UK Conference in April 2011 - the videos can be found on the YouTube Playlist. Johns Hopkins TM Center 2013 Regional Transverse Myelitis Clinical Care Symposium - June 15, 2013 YouTube Playlist. The Rare Neuroimmunologic Disorders Symposium - Dallas, Texas October 2013 - introductory comments and download or simple playlist here. Programmes and some of the presentations from our May 2014 one day conferences in Oxford and Liverpool. Acute Flaccid MyelitisLink to the AFM day, with presentations, at Birkdale Clinic in February 2020.
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