Name Pain
Related to/Also known as see also Back Pain
Symptoms Pain is a common feature of many neurological conditions. Learning to cope with pain can help individuals to take control of their conditions.
Types  
Useful national contacts Action on Pain
Link opens in new window www.action-on-pain.co.uk

British Pain Society
Link opens in new window www.britishpainsociety.org


Pain Concern
Link opens in new window www.painconcern.org.uk


Pain Relief Foundation
Link opens in new window www.painrelieffoundation.org.uk


BackCare 
Link opens in new window www.backcare.org.uk


Tame the Pain
Link opens in new window www.tamethepain.co.uk


CSF Leak Association
Charity working to raise the profile and support understanding of cerebrospinal fluid (CSF) leaks, and provides support to sufferers and carers.
Link opens in new window www.csfleak.info
News and events  
Online resources

How to get NHS help for your pain (NHS Choices)
Link opens in new window www.nhs.uk/Livewell/Pain/Pages/Longtermpain.aspx

Physiotherapy works: Chronic pain (Chartered Society of Physiotherapy factsheet)
Link opens in new window www.csp.org.uk/publications/physiotherapy-works-chronic-pain

MediKidz explain Chronic Pain
Link opens in new window www.medikidz.com/gb-en/shop/brain-eyes-nerves/medikidz-explain-chronic-pain

Our resources

The library at The Brain Charity has a range of resources on Pain and on a wide range of disability-related issues.

Manage your pain: Practical and Positive Ways of Adapting to Chronic Pain This includes a copy of the book Manage your pain: Practical and Positive Ways of Adapting to Chronic Pain by Dr Michael Nicholas. Or look for this book in a library near you Link opens in new window.

Name Parkinson's
Related to/Also known as Idiopathic Parkinson's Disease
Symptoms of Parkinson's
A progressive neurological condition, which can affect talking, walking, swallowing, writing etc. Characterised by slowness in the initiation and performance of movement, and sometimes tremor, usually at rest.
Types  
Useful national contacts

Parkinson's UK
Link opens in new window www.parkinsons.org.uk
Tel: 0808 800 0303
Find a support group near you:
Link opens in new window www.parkinsons.org.uk/content/local-groups


Dance for Parkinson's Network UK
Link opens in new window www.danceforparkinsonsuk.org


Younger People's Groups
Tel. 0808 800 0303
Link opens in new window www.parkinsons.org.uk/youngerpeoplesgroups


News and events  
Online resources

Physiotherapy works: Parkinson's (Chartered Society of Physiotherapists factsheet)
Link opens in new window www.csp.org.uk/publications/physiotherapy-works-parkinsons-disease


MediKidz explain Parkinson's Disease
Link opens in new window www.medikidz.com/gb-en/shop/brain-eyes-nerves/medikidz-explain-parkinsons-disease


Parkinson's Disease (U.S. National Center for Complementary and Integrative Health)
Link opens in new window https://nccih.nih.gov/health/parkinson-disease


Parkinson's Disease (British Deaf Association video with BSL and text)
Link opens in new window www.bda.org.uk/health-parkinsons-disease

Our resources

The library at The Brain Charity has a range of resources on Parkinson's and on a wide range of disability-related issues.

Our Mum has Parkinson's Visit our library to read Our Mum has Parkinson's by Karen Goodall, who was diagnosed with Parkinson's at the age of 32. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org

Name Pituitary Disorders
Related to/Also known as  
Symptoms of Pituitary Disorders
Disorders of the pituitary gland are relatively rare. The most common problem of the pituitary gland is when a benign tumour develops. Symptoms include headaches and visual problems.
Types

Some of the problems related to the pituitary gland are listed below. For more information see the Pituitary Foundation.

  • Acromegaly is caused by overproduction of the growth hormone in adults.
  • Craniopharyngioma is a rare tumour of the pituitary region, which exerts pressure on the hypothalamus and often on the pituitary gland.
  • Cushings's Disease is a problem arising in the pituitary gland, caused by the overproduction of the hormone ACTH. This leads to the overproduction of cortisol by the adrenal glands.
  • Hypopituitarism is the underproduction of one or more of the hormones in the pituitary gland; most often caused by a benign tumour.
  • Non-functioning tumour is the commonest type of tumour in the pituitary gland. It does not produce any hormones itself, but can cause other problems, such as headaches.
Useful national contacts Pituitary Foundation
Link opens in new window www.pituitary.org.uk
Support and Information Helpline:  0117 370 1320.
Find your local support group:
Link opens in new window www.pituitary.org.uk/support-for-you/support-in-your-area
Online resources Pituitary disorder (Contact-A-Family)
Link opens in new window www.cafamily.org.uk/medical-information/conditions/p/pituitary-disorders/?page=3&f=P
News and Events  
Our resources The library at The Brain Charity has a range of resources on Pituitary Disorders and on a wide range of disability-related issues.

Name Polymyositis
Related to/Also known as Myositis
Symptoms of Polymyositis
Polymyositis is an inflammatory muscle disease that causes varying degrees of decreased muscle power. The disease has a gradual onset; the most common symptom is muscle weakness.
Types Dermatomyositis is a related condition where a particular skin rash occurs, along with muscle inflammation.
Useful national contacts Myositis UK
Link opens in new window www.myositis.org.uk
Tel: 02380 449708
Online resources Myositis (polymyositis and dermatomyositis) (NHS Choices website)
Link opens in new window www.nhs.uk/conditions/myositis/Pages/Introduction.aspx
Our resources

The library at The Brain Charity has a range of resources on Polymyositis and on a wide range of disability-related issues.

Myositis: Facts, feelings & future hopes Visit our library to read Myositis: Facts, feelings & future hopes, edited by Jenny Fenton. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org

Name Post-Polio Syndrome
Related to/Also known as  
Symptoms of Post-Polio Syndrome
'Post-polio syndrome' describes a condition where some polio surviviors re-present (on average 30 years after their original illness) with further deterioration in functional ability, increased pain and increased muscle weakness.
Types  
Useful national contacts British Polio Fellowship
Link opens in new window www.britishpolio.org.uk
Tel: 0800 018 0586
Online resources
Post-polio syndrome (NHS Choices)
Link opens in new window www.nhs.uk/conditions/polio-and-post-polio-syndrome-/Pages/Introduction.aspx
News and events
 
Our resources

The library at The Brain Charity has a range of resources on Post-polio Syndrome and on a wide range of disability-related issues.

Post-Polio Syndrome: A guide for Polio survivors & their families Visit our library to read Post-Polio Syndrome: A guide for Polio survivors & their families by Dr Julie K Silver. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org

Name Post-traumatic stress disorder (PTSD)
Related to
PTSD may sometimes be caused by Brain Injury, Brain Haemorrhage, Subarachnoid haemorrhage (SAH), or Stroke.
Symptoms of PTSD

PTSD is a mental health condition.  Mental health conditions are problems with the way you think and feel. Neurological conditions are problems with your brain, spine, or nervous system. Neurological conditions can sometimes lead to mental health problems.

"Post-traumatic stress disorder (PTSD) is a type of anxiety disorder which you may develop after being involved in, or witnessing, traumatic events. The condition was first recognised in war veterans and has been known by a variety of names, such as 'shell shock'. But it's not only diagnosed in soldiers – a wide range of traumatic experiences can cause PTSD.

"Symptoms of PTSD include:

  • "Reliving aspects of what happended. This can include vivid flashbacks
  • "Alertness or feeling on edge. This can include panicking when reminded of the trauma.
  • "Avoiding feelings or memories. This can include feeling emotionally numb or cut off from your feelings."

Source: Mind www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd/symptoms-of-ptsd/?o=14567#aLink opens in new window

Types
  • PTSD
  • Complex PTSD
Useful national contacts

The Brain Charity can offer counselling for PTSD at our centre in Liverpool.


PTSD UK
Link opens in new window www.ptsduk.org
National PTSD Helpline tel. 01282 787 172

PTSD Resolution: charity for UK Forces veterans
Link opens in new window http://ptsdresolution.org
Free helpline 0300 302 0551

Combat Stress: UK veterans' mental health charity
Link opens in new window www.combatstress.org.uk
Free 24-hour helpline:  0800 138 1619

ASSIST Trauma Care
Link opens in new window http://assisttraumacare.org.uk
Helpline 01788 560 800
Find your nearest ASSIST therapist:
Link opens in new window http://assisttraumacare.org.uk/contact

Mind: the mental health charity
Link opens in new window www.mind.org.uk
Mind Infoline: 0300 123 3393
Find your local Mind support group:
Link opens in new window www.mind.org.uk/information-support/local-minds

Anxiety UK
Link opens in new window www.anxietyuk.org.uk
Tel. 08444 775 774

The Samaritans
Phone free any time on 116 123

Online resources

Post-traumatic stress disorder (PTSD) (NHS Choices)
Link opens in new window www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd

Emotional effects of brain injury (Headway)
Link opens in new window www.headway.org.uk/about-brain-injury/individuals/effects-of-brain-injury/emotional-effects

National Center for PTSD (U.S. Department for Veterans Affairs)
Link opens in new window www.ptsd.va.gov

Post-traumatic stress disorder: Management (NICE: National Institute for Health and Care Excellence)
Link opens in new window www.nice.org.uk/guidance/CG26

OCD and PTSD – and the relationship between the two (PTSD UK)
Link opens in new window www.ptsduk.org/ocd-and-ptsd

Post traumatic stress disorder (PTSD) and driving (GOV.UK)
You must tell the DVLA if your post-traumatic stress disorder affects your driving
Link opens in new window www.gov.uk/post-traumatic-stress-disorder-and-driving

News and events

'My dog saved my life' says PTSD sufferer (BBC, May 2018)
Link opens in new window www.bbc.co.uk/news/av/uk-scotland-43995175/my-dog-saved-my-life-says-ptsd-sufferer

Our resources

Anxiety, Panic and Phobias The library at the Brain Charity has a range of resources on PTSD and on a wide range of disability-related issues.

Visit the library to read our copy of the book Anxiety, Panic and Phobias by Malcolm Lader. Or have a Link opens in new window look in your local library for this book.

Name Prader-Willi Syndrome
Related to/Also known as HHHO Syndrome
Symptoms of Prader-Willi syndrome
Prader-Willi syndrome is a genetic disorder, which is present from birth. It is characterised by a number of behavioural and psychological features, including low muscle tone, excessive appetite (leading to obesity if not controlled), and immature physical development . Most have borderline or moderate learning difficulties.
Types  
Useful national contacts Prader-Willi Syndrome Association
Link opens in new window www.pwsa.co.uk
Tel: 01332 365676
Online resources Prader-Willi syndrome (NHS Choices)
Link opens in new window www.nhs.uk/conditions/prader-willi-syndrome/Pages/Introduction.aspx
Our resources The library at The Brain Charity has a range of resources on Prader-Willi syndrome and on a wide range of disability-related issues.

Name Progressive Supranuclear Palsy (PSP)
Related to/Also known as Steele-Richardson-Olszewski (SRO) Syndrome
Symptoms of PSP PSP is a progressive brain disease, leading to the death of nerve endings (neurons) in the area of the brain controlling balance, vision, movement, speech and swallowing. Symptoms reflect problems in these areas; however, the severity and progression varies considerably from one individual to another.
Types  
Useful national contacts PSP Association
Link opens in new window www.psassociation.org.uk
Tel: 01327 322410
Helpline: 0300 0110 122
Online resources Progressive Supranuclear Palsy (NHS Choices)
Link opens in new window www.nhs.uk/conditions/progressive-supranuclear-palsy/pages/introduction.aspx
Our resources

The library at The Brain Charity has a range of resources on Progressive Supranuclear Palsy and on a wide range of disability-related issues.

Visit our library to read Charity Begins at Home, the story of the PSP Association, by Michael Koe. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org