P - The Brain Charity

The Brain Charity

P.T.S.D.

Name	PTSD (Post-Traumatic Stress Disorder)
	See: Post-traumatic stress disorder (PTSD)

Pain

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 www.action-on-pain.co.uk Pain Concern www.painconcern.org.uk Pain Relief Foundation www.painrelieffoundation.org.uk BackCare www.backcare.org.uk Orofacial Pain www.orofacialpain.org.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. www.csfleak.info
Children & young people	"Do you know someone whose body always hurts?" (The Walton Centre) A new guide to helping children understand chronic pain https://tinyurl.com/y5ad6tzk Families and children (Pain Concern) http://painconcern.org.uk/resources/families Chronic pain (Great Ormond Street Hospital) https://tinyurl.com/y39t47un Why Do I Have Pain? (KidsHealth) https://kidshealth.org/en/kids/pain.html
News and events	Volunteer for pain research (University of Manchester) http://research.bmh.manchester.ac.uk/pain/wanttovolunteer Medicinal cannabis products to be legalised (BBC, July 26th 2018) www.bbc.co.uk/news/health-44968386
Online resources	Pain Management in Lockdown (Pain Concern) https://painconcern.org.uk/pain-management-in-lockdown Painkillers 'mask, not kill' long-term pain (BBC, February 2020) www.bbc.co.uk/news/health-51154621 How to get NHS help for your pain (NHS Choices) https://tinyurl.com/pxz3ns4 Physiotherapy works: Chronic pain (Chartered Society of Physiotherapy factsheet) https://tinyurl.com/qaazafg People living with Pain (British Pain Society) www.britishpainsociety.org/people-with-pain Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Pain and on a wide range of disability-related issues. This includes a copy of the book 0 days off by Edward Stevenson, about his struggle with chronic pain.

PANDAS

Name	PANDAS (Paediatric Autoimmune Neuropyschiatratric Disorders with Streptococcal Infections)
	See PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

PANS

Name	PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)
Related to/Also known as	PANDAS (Paediatric Autoimmune Neuropyschiatratric Disorders with Streptococcal Infections) Sydenham Chorea, Sydenham's Chorea OCD, ADHD
Symptoms of PANS and PANDAS	"PANS is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child's brain." Source: PANS PANDAS UK www.panspandasuk.org/pans-pandas "PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in an inflammation of a child's brain. "Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics." Source: PANS PANDAS UK www.panspandasuk.org/pans-pandas "Sydenham chorea is a movement disorder occurring in conjunction with rheumatic fever, an inflammatory condition that may develop in children after an infection with Streptococcus A bacteria. "Chorea describes a disorder of constant, abrupt, involuntary movements and this is a common symptom. Muscle weakness is present in all affected individuals with varying severity. Difficulties with eye movements, voice, and hand movements also occur. Swings in mood and other disturbances of feelings have been described. Children may develop features of obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD), although the full disorder (known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections or PANDAS), might not develop." Source: Contact, charity for families with disabled children https://contact.org.uk/advice-and-support/health-medical-information/conditions/s/sydenham-chorea/?page=5&f=S
Useful national contacts	PANS PANDAS UK www.panspandasuk.org www.facebook.com/panspandasuk www.instagram.com/pans_pandas_uk Email This email address is being protected from spambots. You need JavaScript enabled to view it. Contact, charity for families with disabled children free helpline 0808 808 3555 https://contact.org.uk
Online resources	The Brain Changer Arts Project (The Brain Charity) Pediatric acute-onset neuropsychiatric syndrome (U.S. Genetic and Rare Diseases Information Center) https://rarediseases.info.nih.gov/diseases/13087/pediatric-acute-onset-neuropsychiatric-syndrome Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) Care (Stanford Hospital, U.S.) https://med.stanford.edu/pans.html PANDAS - Questions and answers (U.S. National Institute for Mental Health) https://www.nimh.nih.gov/health/publications/pandas/index.shtml Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections (U.S. Genetic and Rare Diseases Information Center) https://rarediseases.info.nih.gov/diseases/7312/pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcus-infections Sydenham Chorea (U.S. National Organization for Rare Disorders) https://rarediseases.org/rare-diseases/sydenham-chorea/ Sydenham Chorea (Contact, charity for families with disabled children) https://contact.org.uk/advice-and-support/health-medical-information/conditions/s/sydenham-chorea/
News and events	"Understanding the impact of PANS, PANDAS and Long Covid in a school setting" April 8th Register Here "These children were told they have autism and mental health problems but the cause was a bug – and ‘thousands’ like them are being misdiagnosed" (iNews, September 2018) https://inews.co.uk/inews-lifestyle/people/autism-adhd-mental-health-problems-bug-thousands-misdiagnosed-pandas-199848
Our resources	The library at the Brain Charity has a range of resources on a wide range of disability related issues.

Parkinson's

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. • The British Deaf Association has information in BSL about Parkinson's.
Types
Useful national contacts	Parkinson's UK www.parkinsons.org.uk Tel: 0808 800 0303 Find a support group near you: www.parkinsons.org.uk/content/local-groups • The Liverpool Central Parkinson's UK Support Group meets at The Brain Charity Dance for Parkinson's Network UK www.danceforparkinsonsuk.org
Children & young people	Talking to children and teenagers (Parkinson's UK) https://tinyurl.com/y3e3nxge Younger People's Groups Tel. 0808 800 0303 www.parkinsons.org.uk/youngerpeoplesgroups
Online resources	Coronavirus vaccine and Parkinson's (Parkinson's UK) www.parkinsons.org.uk/news/coronavirus-vaccine-and-parkinsons Understanding Coronavirus and Parkinson's (Parkinson's UK) www.parkinsons.org.uk/news/understanding-coronavirus-and-parkinsons Supporting Patients With Parkinson Disease During COVID-19: James Beck, PhD (Neurology Live, February 2021) www.neurologylive.com/view/supporting-patients-parkinson-covid-19-james-beck-phd Dance for Parkinson's (English National Ballet on YouTube) www.ballet.org.uk/project/dance-for-parkinsons Coronavirus vaccine and Parkinson's (Parkinson's UK) www.parkinsons.org.uk/news/coronavirus-vaccine-and-parkinsons Parkinson's disease (NHS website) www.nhs.uk/conditions/parkinsons-disease Muscle cramps and dystonia (Parkinson's UK) https://tinyurl.com/y49j24ya Physiotherapy works: Parkinson's (Chartered Society of Physiotherapists factsheet) https://tinyurl.com/nb2bjv8 Parkinson's Disease (U.S. National Center for Complementary and Integrative Health) https://nccih.nih.gov/health/parkinson-disease Understanding Parkinson's (U.S. Parkinson's Foundation) www.parkinson.org/understanding-parkinsons information in Accessible Formats and Other Languages (Parkinson's UK) www.parkinsons.org.uk/information-and-support/accessible-formats-and-other-languages Living with a condition (The Brain Charity)
News and events	11th April 2021 is World Parkinson's Day https://parkinsonscare.org.uk/worldparkinsonsday
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. For example, visitors to our library can read lots about diet and 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 look in your local library.

Pick's Disease

Name	Pick's Disease
	see Fronto-temporal Dementia (F.T.D.)

Pituitary Disorders

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 (a form of pituitary adenoma). 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. Diabetes Insipidus or Vasopressin Insufficiency: This condition should not be confused with Diabetes Mellitus
Useful national contacts	Pituitary Foundation www.pituitary.org.uk Support and Information Helpline: 0117 370 1320. Find your local support group: https://tinyurl.com/y9f5tj95
Children & young people	Advice for parents (Pituitary Foundation) https://tinyurl.com/u4o997r Children (The Pituitary Foundation) Other useful links https://tinyurl.com/uqrrx8o Living with Diabetes Insipidus (for teens) (The Pituitary Foundation) https://tinyurl.com/wr3q2kx
Online resources	Coronavirus Advice (The Pituitary Foundation) Coronavirus Advice COVID Vaccinations (The Pituitary Foundation) www.pituitary.org.uk/news/2020/12/covid-vaccinations Diabetes insipidus awareness card (Pituitary Foundation) https://pituitary.org.uk/information/publications/essential-free-publications/diabetes-insipidus-awareness-card/ Pituitary disorders (Contact, charity for families with disabled children) https://tinyurl.com/qu7j77e Pituitary tumour and driving: you must tell the DVLA if you have a pituitary tumour www.gov.uk/pituitary-tumour-and-driving Living with a condition (The Brain Charity)
News and Events	'Diabetes Insipidus - time to change the name?' (Pituitary Foundation, July 2018) https://tinyurl.com/y7m5y29d
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. This includes copies of the Pituitary Foundation's magazine Pituitary Life.

Polymyositis

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 www.myositis.org.uk Tel: 02380 449708
Children & young people	Patients and Parents (Juvenile Dermatomyositis Research Centre) https://tinyurl.com/y3zp6edq
Online resources	Coronavirus and myositis (Myositis UK ) www.myositis.org.uk/myositis-info/coronavirus-and-myositis Coronavirus update from Myositis UK (Myositis UK ) www.myositis.org.uk/2020/03/19/coronavirus-update-from-myositis-uk Myositis (polymyositis and dermatomyositis) (NHS Choices website) https://tinyurl.com/y7evq6kj Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Polymyositis and on a wide range of disability-related issues. Visit our library to read Teddy-Bo's Feeling Tired: A Story all about living with myositis

Post-Polio Syndrome

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 www.britishpolio.org.uk Tel: 0800 018 0586
Children & young people	Polio: What happens next? (Great Ormond Street Hospital for Children) https://tinyurl.com/y4ywbncm
Online resources	Post-polio syndrome (NHS Choices) https://tinyurl.com/ycsn6q4o Covid-19 Vaccination Information (British Polio Fellowship) w www.britishpolio.org.uk/covid-19-vaccination-information Polio (NHS Choices) www.nhs.uk/conditions/polio Living with a condition (The Brain Charity)
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. Visit our library to read Post-Polio Syndrome: A guide for Polio survivors & their families by Dr Julie K Silver. Or have a look in your local library for this book.

Post-traumatic stress disorder (P.T.S.D.)

Name	Post-traumatic stress disorder (PTSD)
Related to	PTSD may sometimes be caused by Brain Injury, Brain Haemorrhage, Subarachnoid haemorrhage (SAH), or Stroke. See also: Functional neurological disorder
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 https://tinyurl.com/y8k32fnk/p>
Types	PTSD Complex PTSD
Useful national contacts	• The Brain Charity can offer counselling for PTSD PTSD UK www.ptsduk.org National PTSD Helpline tel. 01282 787 172 PTSD Resolution: charity for UK Forces veterans http://ptsdresolution.org Free helpline 0300 302 0551 Combat Stress: UK veterans' mental health charity www.combatstress.org.uk Free 24-hour helpline: 0800 138 1619 Mind: the mental health charity www.mind.org.uk Mind Infoline: 0300 123 3393 Find your local Mind support group: https://tinyurl.com/yaat3k8b Anxiety UK www.anxietyuk.org.uk Tel. 08444 775 774 The Samaritans Phone free any time on 116 123
Children & young people	Symptoms of PTSD in children and adolescents (PTSD UK) https://tinyurl.com/yxhcjq43 PTSD (Young Minds charity for children and young people) https://tinyurl.com/y4htd8td Children and Trauma (ASSIST Trauma Care) https://tinyurl.com/y3w4xvlm
Online resources	Online self-help resources during COVID-19 (Combat Stress) www.combatstress.org.uk/mental-health-support-during-covid-19 Covid and PTSD: Dispelling misconceptions on those who may have it and why (BBC, February 2021) www.bbc.co.uk/news/av/health-56132395 Coronavirus and your mental health (Mind) www.mind.org.uk/information-support/coronavirus Mask anxiety, face coverings and mental health (Mind) www.mind.org.uk/information-support/coronavirus/mask-anxiety-face-coverings-and-mental-health Post-traumatic stress disorder (PTSD) (NHS Choices) https://tinyurl.com/y9rwpvjc Emotional effects of brain injury (Headway) https://tinyurl.com/y92eusgo National Center for PTSD (U.S. Department for Veterans Affairs) www.ptsd.va.gov Post-traumatic stress disorder: Management (NICE: National Institute for Health and Care Excellence) www.nice.org.uk/guidance/CG26 OCD and PTSD – and the relationship between the two (PTSD UK) 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 https://tinyurl.com/y9w9y5kf Living with a condition (The Brain Charity)
News andevents	Coronavirus: Front-line NHS staff 'at risk of PTSD' (BBC, May 2020) www.bbc.co.uk/news/uk-52258217 'My dog saved my life' says PTSD sufferer (BBC, May 2018) https://tinyurl.com/ybxo39ue
Our resources	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 NICE (National Institute for Clinical Excellence) guidlines 'Post-traumatic Stress Disorder (PTSD): the treatment of PTSD in adults and children in adults and children'.

Prader-Willi Syndrome

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	PWSA-UK (Prader-Willi Syndrome Association) www.pwsa.co.uk Tel: 01332 365676
Children & young people	PWS by age (PWSA-UK) www.pwsa.co.uk/pws-by-agecfc0767f
Online resources	Easy-Read guide to Coronavirus from Mencap Prader-Willi syndrome (NHS Choices) https://tinyurl.com/c7wl5z6 Living with a condition (The Brain Charity)
News and Events
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.

Primary Progressive Aphasia

Name	Primary Progressive Aphasia
	see Fronto-temporal Dementia (F.T.D.)

Progressive Supranuclear Palsy (P.S.P.)

Name	Progressive Supranuclear Palsy (PSP)
Related to/Also known as	Steele-Richardson-Olszewski (SRO) Syndrome Corticobasal Degeneration (CBD)
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	PSPA Helpline: 0300 0110 122 https://pspassociation.org.uk
Children & young people	Progressive Supranuclear Palsy (U.S. Child Neurology Foundation) https://tinyurl.com/rbhyzoc
Online resources	PSP & CBD and Coronavirus (PSPA) PSP & CBD and Coronavirus Progressive Supranuclear Palsy (NHS Choices) https://tinyurl.com/lpvclo6 Corticobasal degeneration (NHS Choices) https://tinyurl.com/sq9oqw5 Living with a condition (The Brain Charity)
News and events
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. This includes a copy of the PSPA booklet "An Introduction to PSP and CBD"