Living with hidden disabilities

In the UK alone, 1 in 5 people has a disability, with 80% of those having an invisible disability.

What is an invisible disability?

A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).

Invisible disabilities, also known as Hidden Disabilities or Non-visible Disabilities, are disabilities that are not immediately apparent. Typically, they are chronic illnesses and conditions that significantly impair normal activities of daily living.

Living with these conditions can make daily life more demanding for many people. They affect each person in different ways and can be painful, exhausting, and isolating. Without visible evidence of the hidden disability, it is frequently difficult for others to acknowledge the challenges faced and as a consequence, sympathy and understanding can often be in short supply.

Examples of Hidden Disabilities
While this list is by no means exhaustive, some examples of hidden disabilities include:

  • Autism
  • Brain injuries
  • Crohn’s Disease
  • Chronic pain
  • Cystic Fibrosis
  • Depression, ADHD, Bipolar Disorder, Schizophrenia, and other mental health conditions
  • Diabetes
  • Epilepsy
  • Learning difficulties, including dyslexia, dyspraxia, dysgraphia, and language processing disorder
  • Lupus
  • Rheumatoid Arthritis
  • Visual and auditory disabilities. These could be considered visible if the person with the disability didn’t wear support aids such as glasses or hearing aids

During the COVID-19 pandemic, invisible disabilities have become a talking point, which is why it is important to raise awareness of them.

Epilepsy

Epilepsy is a common condition where sudden bursts of electrical activity in the brain cause seizures or fits. There are lots of possible symptoms of epileptic seizures, including uncontrollable shaking or losing awareness of things around you. The main treatment for epilepsy is medicine to help prevent seizures. It’s often not clear what causes epilepsy. Sometimes it runs in families or is caused by damage to the brain from trauma such as a severe head injury.

Useful Resources

Epilepsy bed sensor

Footprint GPS Alarm

Seizures and me: Charlotte’s story

Epilepsy Action – Free online course What to do when someone has a seizure

Epilepsy first aid poster

How we can help

Assistive technology can promote a sense of independence for those living with epilepsy, whilst providing peace of mind and reassurance for loved ones and carers.

Epilepsy sensors are used to monitor people with epilepsy while they are asleep in bed. Patented sensor technology detects a person’s movement in bed and is able to differentiate normal movements from epileptic seizures enabling tonic clonic seizures to be detected the moment they occur. They help carers respond quickly when needed, and avoid disturbing a person’s sleep when they are not. The sensitivity of the sensor can be adjusted to best suit the person’s requirements.

This sensor is suitable for use with children as well as adults.

Outside the home                                   

Our GPS falls detector recognises when a person falls and connects straight through to our alarm response centre – ensuring help is on its way when you need it most. The alarm can be set up to alert an emergency contact or we can request an ambulance right away – the plan can be tailored to your individual needs.

This is a great solution for teenagers or adults with epilepsy. In many cases a parent or carer for someone with epilepsy will undertake regular checks or need to be on hand 24/7. This means constant worry for the care giver and a loss of independence for the individual. Our Footprint device will automatically raise an alert if it detects a fall, (no need to press a button) as well as being able to locate where you are. This enables appropriate care to be provided quickly, without the need for manual checks. 

A Helping Hand

Our products and plans are tailor made to help you or your loved ones stay safe. Explore the range below and see how Progress Lifeline can assist those with Epilepsy.

Epilepsy bed sensor

These are used to detect seizures whilst in bed. They are able to detect movements that are associated with a tonic clonic type seizure.

Footprint GPS Alarm & Falls Detector

The Footprint is a GPS location device, pendant alarm & falls detector all-in-one.

Falls Detector

The Falls Detector can be worn as a pendant or as a watch. When a fall is detected, the device automatically connects the wearer to our alarm response centre – no need to even press the button.

Key Safe

A KeySafe can be installed externally to allow safe and secure emergency access to your home. (A code is used by contacts that you approve to help in an emergency).

Emergency Home Response

Add our Emergency Home Response service to any alarm package for just £11 per month. Our responders provide 24/7 assistance to you at home if your family and named contacts can’t get there.

  

Spastic Cerebral Palsy

Spastic cerebral palsy is the most common form of the disorder, affecting around 70% to 80% of all people diagnosed. This form of cerebral palsy mainly affects the muscle groups, but may cause associated disorders as well. [1]

Spastic cerebral palsy occurs as a result of brain damage, usually before or during birth, or sometimes within the first years of a child’s life. It’s a disorder that affects coordination and control of motor function. This causes the child to be delayed in reaching normal developmental milestones, and that is when it becomes more evident. [2]

Muscles need enough tone in them to maintain correct posture, to enable standing and walking, and to maintain speed and flexibility. Motor nerve fibers, via the spinal cord, interact with the muscles to help control how they move.

For someone with spastic cerebral palsy, brain damage affects muscle control, coordination, and movement, mainly in the arms and legs. In turn, this influences the way the spinal cord and nerves react, which then causes the muscles to become tense, and spastic. [3]

Children born with spastic cerebral palsy do not usually have limb deformities at birth, but over time these may develop, due to muscle tenseness and stretching limitations.

Spastic cerebral palsy may be classified as quadriplegic, diplegic, or hemiplegic, according to how and where it affects the body.

Spastic Cerebral Palsy Symptoms

Spastic cerebral palsy, also known as hypertonic cerebral palsy, is characterized by hypertonia, meaning increased muscle tone, and leads to stiff, and sometimes painful limbs. [4]

Symptoms may include:

  • Involuntary limb movements
  • Continuous muscle spasms and contractions
  • Abnormal walking, marked by knees crossing in a scissor-like movement
  • Joint contractures
  • Limited stretching abilities
  • Flexion at the elbows, wrists, and fingers
  • Poor coordination and control of muscle movements

These symptoms can make it difficult for those with spastic cerebral palsy to walk, get dressed, brush their teeth, use the bathroom, and take a shower without assistance. The limitations on activities of daily living (ADLs) will depend on how severe the disorder is. Children with mild cases of spastic CP may not need any help but may still have mild difficulties with ADLs.

If both legs are affected, children may also have problems transferring from one position to the next, standing and sitting upright, walking, and running.

Children with spastic cerebral palsy may also develop other nervous system-related symptoms, which may include:

  • Speech difficulties
  • Hearing problems
  • Vision abnormalities
  • Cognitive, learning and behavioral disabilities [5]
  • Seizures

Related problems may include:

  • Drooling
  • Difficulties with chewing and swallowing
  • Hoarse voice or speech problems
  • Breathing irregularities
  • Failure to thrive or poor weight gain
  • Gastric reflux
  • Constipation and bladder incontinence
  • Spinal and joint deformities

Treatment Options for Spastic Cerebral Palsy

Although there’s no cure for any form of cerebral palsy, there are a number of treatment options available to help control the symptoms, including:

  • Physical therapy, as well as language, occupational, and behavioral therapies
  • Medications to control symptoms, such as muscle spasms or seizures
  • Baclofen pump (to help control muscle spasticity)
  • Spine or spinal cord surgery (to repair scoliosis or reduce spasticity)
  • Muscle-release and tendon-lengthening surgery
  • Devices to aid in communication
  • Orthotics, braces or other devices to help with positioning, standing or muscle control
  • Constraint-induced therapy (CIT)

Keep in mind that treatment options will depend on the age of the child, how severe the symptoms are, and any associated disorders. Most parents will work with a team of medical experts to implement the best treatments for the child, including therapists, surgeons, dietitians, and neurologists. [6]

Spastic Cerebral Palsy Prognosis

Again, there is no cure for spastic cerebral palsy, but with the proper treatment, children can grow up and thrive as adults. It’s essential, however, to start a treatment plan as early as possible for the child to have the best outcomes, not only as an adult but as he or she grows along the path through childhood and into adolescence.