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Understanding the Disabilities of Participants CONNECTIONS TO INDEPENDENCE Objective This presentation is designed to give you an overview of many different disabilities you may encounter during your contact with consumers. It is not meant to be an in-depth look at various disabilities. Disabilities included in this presentation are: ALS Cerebral Palsy Fibromyalgia Lupus Osteoporosis Stroke Depression Anoxic Brain Injury COPD Huntington’s Disease Multiple Sclerosis Para/Quadriplegia Traumatic Brain Injury Schizophrenia Asperger’s Diabetes IDD Muscular Dystrophy Rheumatoid Arthritis Anxiety Disorder Amyotrophic Lateral Sclerosis ALS (Lou Gehrig’s disease) ALS is a progressive disease in which the nerve cells that control voluntary muscle movement gradually deteriorate, leading to muscle weakness and eventual paralysis. ALS is rare, usually diagnosed between 35-70 Cause is not known Symptoms: weakness begins in hands, then progresses up the arm. Can also begin in feet and progress up legs. Muscle cramps, spasms, and tremors. Does not affect mental function, the senses, bowel and bladder function, or eye muscles. ALS is a fatal disease, caused by weakened respiratory and swallowing muscles. Most likely cause of death is aspiration. No cure, although there are medicines taken early in the disease can slow the progression. Emotional support is extremely important because it is difficult to maintain a positive outlook in the face of ALS. Anoxic Brain Injury Brain cells begin to die when oxygen levels are significantly low for four minutes. After five minutes permanent anoxic brain injury can occur. Term anoxic means total lack. Greater the lack of oxygen, more widespread and serious the injury. Common causes: respiratory arrest, electrical shock, drowning, heart attack, brain tumors, extreme low blood pressure, carbon monoxide inhalation, etc. Symptoms: loss of consciousness or coma, wakeful unresponsiveness, cognitive problems, short term memory loss, difficulty using and/or processing words, lack of coordination, inability to do common tasks, headaches. Chances of recovery may be minimal. If moderate, may have a better outcome but will take months or years. People with the mild form may live near normal lives with almost full recovery. Love and emotional support vital during the rehabilitation phase. Asperger’s Syndrome A developmental disorder that affects a person’s ability to socialize and communicate effectively with others Doctor’s group Asperger's Syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. Asperger’s Syndrome is generally thought to be at the milder end of this spectrum Symptoms, engaging in one-sided, long-winded conversations, displaying unusual nonverbal communication, showing an intense obsession with subjects, appearing not to understand, empathize with or be sensitive to others’ feelings, having a hard time “reading” other people, speaking in a voice that is monotonous, moving clumsily, may experience depression or anxiety. Treatment: communication and social skills training, cognitive behavioral therapy, medication Cerebral Palsy Cerebral palsy, also referred to as CP, is used to describe a group of chronic conditions affecting body movement and muscle coordination. It is not genetic. It is caused by damage to one or more specific areas of the brain, usually during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain's ability to adequately control movement and posture. Is not a cognitive disability. Cerebral palsy is not "curable" in the accepted sense, training and therapy can help improve function. Cerebral palsy is characterized by an inability to fully control motor function, particularly muscle control and coordination. "Management" is a better word than "treatment." Management consists of helping the child achieve maximum potential in growth and development. This should be started as early as possible with identification. Certain medications, surgery, and braces may be used to improve nerve and muscle coordination and prevent or minimize dysfunction. Chronic Obstructive Pulmonary Disease (COPD) COPD is a common disease of the lungs affecting millions of Americans. Stages and Symptoms: Mild: patient unaware that lung function is starting to decline Moderate: shortness of breath develops during exertion Severe: shortness of breath worsens, increased cough and sputum production, wheezing, chest tightening Very severe: quality of life may be impaired, symptoms may become life threatening. Causes: active or passive smoking major cause. Exposure to other irritants and pollution can cause COPD. Treatment: There is no treatment to cure COPD, treatment aims to ease symptoms and improve quality of life. Medications such as bronchodilators, and steroids, chest therapy, antibiotics and possibly supplemental oxygen are used. If patient lives a healthy lifestyle, quits smoking and avoids pollutants, can function relatively well with few limitations. Diabetes Diabetes is a condition where Insulin is not doing its job. Insulin is a hormone made by the Pancreas in response to high blood sugars. The body breaks down food into sugar and insulin allows it to enter the cells in the body to be used as energy. Three main types: Type 1: the body attacks the insulin producing cells, making a person unable to produce insulin. Need to inject insulin to stay healthy. Type 2: body has trouble using the insulin it makes or the body cannot make enough insulin. Can be controlled with diet, exercise, pills or insulin. Gestational: caused by changes in hormones during pregnancy and usually disappears after delivery. Symptoms of undiagnosed diabetes: Increased thirst, increased urination, weight loss in spite of increased appetite, fatigue, nausea and/or vomiting, blurred vision, slow healing infections. When blood glucose is poorly managed over long periods of time, the blood vessels in multiple tissues throughout the body start to show abnormal functioning and can even undergo structural changes. These changes often result in an inadequate blood supply reaching the tissue, and depending on which type of tissue is affected can lead to heart attack, stroke, kidney disease, retinopathy, blindness, and occasionally gangrene of the limbs. Complications can also involve the peripheral nerves and the autonomic nervous system which can result in heart arrhythmia, impaired bladder control, decreased sensation in the extremities and a number of other symptoms associated with peripheral nerve damage. Fibromyalgia Fibromyalgia is a chronic disorder that causes widespread pain and tenderness in the muscles and soft tissue as well as sleep problems and fatigue. It is a syndrome of chronic pain, not a disease or a psychological disorder. Symptoms: along with pain, fatigue, and sleep problems, can also include headaches, morning stiffness, difficulty concentrating, and IBS. Anxiety and depression are common. May have flares and remissions. Can only be diagnosed when other conditions are ruled out. There are no tests that can confirm it. Although there is no cure, it can be somewhat controlled and does not damage the muscles, joints or internal organs. Huntington’s Disease Huntington’s disease is a genetic disorder passed down through families in which nerve cells in certain parts of the brain waste away or degenerate. The most common form of Huntington’s is adult-onset which occurs typically in mid 30’s and 40’s. Symptoms include: behavioral changes, abnormal and unusual movements and dementia that slowly gets worse. Other symptoms include anxiety, stress and tension, difficulty swallowing and speech impairment. No cure for this disease and no known way to stop the disease from getting worse. Some medications may slow the symptoms of the disease. Depression and suicide are common. As the disease progresses the person will need assistance and may eventually require 24 hour care. Huntington’s Disease cont. The progression of HD after a person is diagnosed can be divided into five (flexible) stages: Early Stage - the person is diagnosed as having HD and can function fully both at home and work. Early Intermediate Stage - the person remains employable but at a lower capacity. They are still able to manage their daily affairs despite some difficulties. Late Intermediate Stage - the person can no longer work and/or manage household responsibilities. They need considerable help or supervision to handle daily financial affairs. Other daily activities may be slightly difficult but usually only require minor help. Early Advanced Stage - the person is no longer independent in daily activities but is still able to live at home supported by their family or professional careers. Advanced Stage - the person with HD requires complete support in daily activities and professional nursing care is usually needed. People with HD usually die about 15 to 20 years after their symptoms first appear. The cause of death is not the disease itself but complications such as pneumonia, heart failure or infection developing from the body's weakened condition. Intellectual and Developmental Disabilities There are five different types of developmental disabilities. Cerebral Palsy: Autism: Epilepsy or Seizure Disorders are characterized by recurrent seizures. The stereotypical, or grand mal seizure is just one of many types. Other neurological disorders: Characterized by extreme withdrawal, language disturbance, difficulty in forming affective ties, frequent lack of responsiveness to other people, monotonously repetitive motor behaviors, an inappropriate response to external stimuli, an obsessive urge for the maintenance of sameness and/or impaired intellectual capacities. Epilepsy: A developmental disability that occurs during or shortly after birth. Characterized by permanent motor impairment. May consist of traumatic brain injury, Tourette’s syndrome, Prader Willi syndrome, specific learning disabilities, and a variety of other disorders. Intellectual Disability: Characterized by significant sub-average intellectual functioning with substantial limitations in adaptive skill areas Four levels: Mild, Moderate, Severe, Profound Lupus Lupus is a lifelong disorder of the immune system. Immune cells attack the body’s own healthy tissues, leading to inflammation and tissue damage. Symptoms: joint pain, butterfly rash, nail change, fever and fatigue, light sensitivity, hair loss, Raynaud’s phenomenon (fingers and toes become painful, numb, and tingly in response to cold temperatures or emotional stress). Treatment: corticosteroid creams for rashes and NSAIDS for joint pain and fever. People with severe lupus may benefit from drugs that suppress the immune system. Depression and anxiety are a risk for people with lupus due to the affect on the nervous system and the emotional strain of dealing with a chronic illness. Multiple Sclerosis (MS) MS is a chronic disease that damages the nerves in the spinal cord and the brain, as well as the optic nerves. The body’s own immune system attacks these nerves. Symptoms: weakness or numbness, vision problems, speech problems, mild memory loss, loss of bladder control, and fatigue. MS is a progressive disorder. Medications, pain management, and physical therapy are all used to treat MS Muscular Dystrophy Muscular dystrophy is the term used to describe a group of inherited disorders that cause progressive muscle weakness. It is caused by genetic defects. Nine types: Becker MD: affects older boys and young men. Causes progressive muscle weakness usually beginning in the legs. Congenital MD: a rare form present at birth. Symptoms progress slowly and include general weakness, flaccid tone, bent joints, slow motor development. Distal MD: symptoms begin in middle age or later. Causes weakness in the muscles of the feet and hands. Duchenne MD: most severe form. Affects young boys and causes progress weakness, usually beginning in the legs. Emery-Dreifuss MD: Affects young boys, causes muscle contractions in the calves, weakness in the calves, shoulders and upper arms and problems in the way electrical impulses travel through the heart to make it beat. Facioscpulohumeral MD: also know as Landouzy-Dejerine disease, begins in late childhood to early adulthood. Affects both males and females. Causes weakness in the muscles of the face, shoulders and upper arms. May also affect the hips and legs. Muscular Dystrophy cont. Nine types cont. Limb-girdle MD: Begins in late childhood to early adulthood. Affects males and females. Causes weakness in the muscles around the upper legs and shoulders. Myotonic dystrophy: Also know as Steinert’s disease. Symptoms may begin any time from birth through adulthood. Affects males and females. Generalized weakness first occurs in the face, hands and feet. People with this disease also have myotonia, the failure of the muscles to relax normally after use. Oculopharyngeal MD: Affects adults of both sexes. Cause weakness in the eye muscles and throat. Treatment: there is no known cure. Treatment is centered on physical and occupational therapy. Surgery may be necessary to correct severe contractures, compensate for shoulder weakness, lift eyelids that are affected, correct scoliosis and to keep the airways open in cases of sleep apnea. Brittle Bone Disease (Osteoporosis) Osteoporosis is a disease in which the bones become weak and brittle. If left unchecked it can progress painlessly until a bone breaks. Any bone can break but fractures of the spine, hips and wrists are of special concern. Symptoms: severe back pain, loss of height, with stooped posture, fracture of the vertebrae, wrists, hips or other bones. Treatment includes: nutrition, smoking cessation, exercise, dietary supplements, hormone replacement therapy and medications. Paraplegia and Quadriplegia Paraplegia: complete paraplegia is a term used to describe complete and permanent loss of ability to send sensory and motor nerve impulses to the muscle groups and body functions that are controlled by nerves leaving the spinal column. Incomplete paraplegia: refers to a spinal cord injury in which some feeling or movement is still evident below the point of injury. Quadriplegia: cervical injuries usually result in four limb paralysis, Injuries above the C-4 level may require a ventilator or electrical implant for the person to breathe. Quadriplegia is more debilitating than paraplegia as the arms are paralyzed too. The extent of the injury is important. A complete severing of the spinal cord will result in complete loss of function from that vertebra down. A partial severing or even bruising of the spinal cord results in varying degrees of mixed function and paralysis. A common misconception with quadriplegia is that the victim cannot move legs, arms or any of the major functions; this is often not the case. Some can walk and use their hands, as though they did not have a spinal cord injury, while others may use wheelchairs and they can still have function of their arms and mild finger movement, again, that varies on the spinal cord damage. Rheumatoid Arthritis (RA) RA is a chronic disease. Symptoms can come and go and each person with RA is affected differently. Some people have long periods of remission, others may have near-constant RA symptoms for months at a time. Symptoms: stiffness, swelling, redness and warmth, and pain of the joints, fatigue, malaise, loss of appetite leading to weight loss, muscle aches. Treatment: may include medications, injections, joint exercises, rest, and surgery. Stroke Types of stroke: Ischemic stroke: caused by a blockage of a blood vessel that supplies blood to the brain. Hemorrhagic stroke: caused by a rupture or hemorrhage in a blood vessel. Brain stem stroke: A person may have vertigo, dizziness and severe imbalance without the hallmark of most strokes – weakness on one side of the body. The symptoms of vertigo dizziness or imbalance usually occur together; dizziness alone is not a sign of stroke. Brain stem stroke can also cause double vision, slurred speech and decreased level of consciousness. This type of stroke can result in death, since the damaged brainstem can no longer control the body’s vital functions Symptoms: include sudden onset of numbness, weakness or paralysis of the face, arm or leg, typically on one side of the body, trouble seeing in one or both eyes, confusion, trouble speaking or understanding, trouble walking, dizziness, loss of balance or coordination or a severe headache. Use FAST (face, arm, speech and time) to determine possibility of a stroke. Treatment: Immediate treatment is needed to: Dissolve or remove a clot (for ischemic stroke) Stop bleeding (for hemorrhagic stroke), this may include medications and/or surgery. Traumatic Brain Injury (TBI) A TBI may range from a mild concussion to a severe head injury. It is caused by a blow to the head or body, a fall or another injury that jars or shakes the brain. This can cause bruising, swelling or tearing of the brain tissue. Symptoms: may include not thinking clearly or having trouble remember new information, having headaches, vision problems or dizziness, feeling sad, nervous or easily angered and sleeping more or less than usual. If your brain has been damaged, you may need treatment and rehabilitation perhaps on a long-term basis. This might include physical and occupational therapy, speech and language therapy, counseling, social support and support groups and medicines to help relieve sleep problems, chronic pain, headaches, anxiety, depression or memory problems. Anxiety Disorder Anxiety is a normal human emotion that everyone experiences at times. Anxiety disorder is different. It can cause such distress that it interferes with a person’s ability to lead a normal life. It is a serious mental illness and for people with anxiety disorder, worry and fear are constant and overwhelming. Symptoms include: feelings of panic, fear and uneasiness, obsessive thoughts, flashbacks of traumatic experiences, nightmares, problems sleeping, shortness of breath, palpitations, numbness or tingling in hands or feet, nausea, muscle tension and dizziness. Anxiety disorder is not the result of personal weakness, a character flaw or poor upbringing. Many mental illness are caused by changes in the brain and environmental stress. Treatment: Medication, psychotherapy, cognitive-behavioral therapy, dietary and lifestyle changes and relaxation therapy. Depression Sadness or downswings in mood are normal reactions to life’s struggles. Depression is much more than this. Some people describe it as living in a black hole or having a feeling of impending doom. Symptoms: feelings of helplessness and hopelessness, loss of interest in daily activities, appetite or weight changes, sleep changes, anger or irritability, loss of energy, self-loathing, reckless behavior, concentration problems and unexplained aches and pains. Depression is a major risk factor for suicide. The deep despair that goes along with depression can make suicide seem like the only escape. Treatment can include: making healthy lifestyle changes, building emotional skills, and if support from family and friends isn’t working, seeking professional help. Effective treatments can include medication and therapy. Schizophrenia Schizophrenia is a serious brain disorder that distorts the way a person thinks, acts, expresses emotions, perceives reality and relates to others. It is the most chronic and disabling of the major mental illnesses and people with this disorder have problems functioning in society, at work, at school, and in relationships. It is a life-long disease that cannot be cured but usually can be controlled with proper treatment. Symptoms: delusions, hallucinations, catatonia, using nonsense words, shifting quickly from one thought to the next, moving slowly, unable to make decisions, forgetting or losing things, writing excessively without meaning, pacing or walking in circles, having problems making sense of everyday sights, sounds and feelings. Also may have lack of emotion, reduced energy and reduced speech, lack of motivation, loss of pleasure and poor grooming. Treatment: medications such as antipsychotics, psychosocial therapy, and hospitalization Contact Information If you have any questions, would like more information or come across a disability that was not covered during this training please contact the Education and Quality Manager at: 717-737-3477 ext. 363