Family & Caregiver Support

Understanding the injury and prognosis

• How severe is my loved one’s injury?
• What does the severity of the injury mean for future recovery?
• What is the neurological level of injury?
• What is my loved one’s ASIA/ISCoS score, and what does it mean for recovery?
• What other injuries occurred in addition to the primary injury?
• What level of independence can my loved one expect in the future?

Current treatment and immediate care

• What are you doing right now? How will it help my loved one?
• How will the treatment you are doing right now help me/my loved one?
• Can you take me through the basic care tasks you are performing (e.g., bathing, grooming, and feeding) so I can possibly help with them, too?

Therapy and rehabilitation goals

• What is the goal of rehabilitation therapy?
• What is cognitive therapy, and how can it help my loved one?

Complications and prevention

• What secondary symptoms should I be aware of?
• What kind of complications can arise from this type of injury?
• How can I help prevent complications for my loved one?

Next steps and long-term planning

• What are the next steps in my loved one’s care?
• When will I know my loved one is ready for the next step?
• How can I learn to take care of my loved one at home?
• What should I be looking for in a rehabilitation center?

Discharge planning and transition

• What are the next steps after my loved one is discharged from inpatient rehabilitation?
• What outpatient therapy or day programs are available, and how do we enroll?
• Will my loved one need home health services, and how do we arrange for them?
• How do we coordinate follow-up medical appointments after discharge?
• What adaptive equipment or home modifications should we prepare for before discharge?
• Will my loved one need caregiver support at home, and what resources are available?
• What should we do if we have concerns or questions after leaving Shepherd Center?

Medical and therapy follow-up

• What ongoing medical care will my loved one need, and which specialists should we follow up with?
• How do we transfer medical records to our local healthcare providers?
• How often should my loved one continue physical, occupational, or speech therapy?
• Are there specialized programs available for long-term recovery and wellness?

Insurance and financial planning

• What insurance coverage is available for outpatient therapy, home health services, and durable medical equipment?
• How do we apply for financial assistance or support programs?
• Are there grants or funding sources for adaptive equipment, transportation, or home modifications?
• What legal or financial considerations should we be aware of for long-term care planning?

Daily living and independence

• What assistive technology or mobility aids would be beneficial for my loved one?
• Are there community resources or support groups for patients and caregivers?
• How can we prepare for daily routines like dressing, bathing, and meal preparation?
• What transportation options are available if my loved one is unable to drive?
• How can we help our loved one regain independence and confidence

Mental and emotional well-being

• What emotional or psychological challenges might my loved one face while here and after returning home?
• Are there counseling or mental health services available for both patients and caregivers?
• What strategies can help with coping, motivation, and adjusting to a new normal?
• How can we encourage social engagement and prevent isolation?
  Returning to Work, School, or Community Life
• What resources are available for returning to work, school, or volunteering?
• How does vocational rehabilitation work, and who qualifies?
• Are there educational resources to help employers or schools understand my loved one’s needs?
• What adaptive sports, recreation, or wellness programs are available for ongoing engagement?

Long-term planning & lifelong support

• What are the signs that my loved one may need additional rehabilitation in the future?
• How often should we check in with Shepherd Center or our case manager after discharge?
• Are there Shepherd Center alumni programs or peer mentorship opportunities?
• What research or clinical trials might be available in the future for continued recovery?
• How can we stay informed about advancements in care and rehabilitation?

• ASIA/ISCoS exam and grading system: A system used to describe spinal cord injury and help determine future rehabilitation and recovery needs. It is based on a patient’s ability to feel sensation at multiple points on the body and tests motor function. Ideally, it’s first given within 72 hours after the initial injury.
• Autonomic dysreflexia: A potentially life-threatening condition caused by painful stimuli below the level of injury that the body cannot respond to due to non-functioning nerve cells. Symptoms include a sudden increase in blood pressure, slowed heart rate, abnormal sweating, red blotches on the skin, and restlessness. Common triggers include an overfull bladder, impacted stool, infected pressure ulcers, or ingrown toenails.
• Complete injury: No function or sensation below the level of the injury.
  Incomplete Injury – Some sensory or motor function remains below the primary level of injury.
• Motor function: The ability to voluntarily control muscles and their resultant use.
• Motor Index Score (MIS): A portion of the ASIA/ISCoS exam that determines muscle strength of 10 different muscles on both sides of the body.
• Paraplegia: Paralysis that typically affects the trunk and both legs but not the arms, usually resulting from injuries at the thoracic and lumbar levels.
• Tetraplegia (Quadriplegia): Paralysis from approximately the neck down, resulting from injury to the spinal cord in the neck. It is associated with total or partial loss of function in both arms and legs.
• Sensory Index Score (SIS): Part of the ASIA/ISCoS exam that measures a patient’s response to light touch and pinprick sensations in 28 points on each side of the body to determine what they can feel. Combined with the MIS, it helps determine the level and severity of injury.

• Anoxia (or hypoxia): A lack of oxygen that can be caused by a heart attack, airway obstruction, near drowning, lightning strike, or electrical shock.
• Axonal shearing: Damage to the brain’s axons (main channels of communication) due to stretching forces, leading to cell death.
• Brain herniation: A dangerous condition in which rising pressure inside the brain or a hematoma causes brain tissue to shift out of place.
• Cerebral atrophy: The loss of nerve cells in the brain and the connections between them.
• Coma: A deep state of unconsciousness in which the patient cannot be aroused, does not respond to stimuli, and cannot make voluntary movements. It can sometimes be medically induced to give the brain time to heal.
• Coma recovery scale: A tool used to measure hearing, vision, movement, communication, arousal, and other functions to help determine a patient’s long-term prognosis. It can also be used throughout rehabilitation to track recovery progress.
• Edema: Swelling inside the skull that squeezes brain cells and can interrupt blood flow and oxygen supply to brain tissue.
• Hematoma: A pool of blood or bruise inside the skull caused by damaged blood vessels. It can increase pressure inside the brain.
• Hemorrhage: Internal or external bleeding caused by damage to a blood vessel.
• Intracranial pressure monitoring: The process of monitoring the pressure inside the skull to prevent further brain injury.
• Mild traumatic brain injury (TBI) (Concussion): A type of brain injury where the patient may briefly lose consciousness for 15 minutes or less, experience memory loss about the trauma event, or feel dazed, disoriented, or confused. Most traumatic brain injuries are initially rated as mild.
• Minimally conscious state: A condition of severely altered consciousness in which the patient shows minimal but definite behavioral evidence of self-awareness or environmental awareness.
• Moderate traumatic brain injury (TBI): A brain injury where the patient may initially lose consciousness for 15 minutes to a few hours and experience more significant symptoms than a mild TBI.
• Neuropsychological assessment: A series of tests that evaluate cognitive functions such as hand-eye coordination, higher-level thinking, and everyday functional skills.
• Semi-coma or vegetative state: A state in which the patient’s eyes may open, but they remain unaware of themselves or their surroundings.
• Severe traumatic brain injury (TBI): A brain injury where the patient loses consciousness for six hours or longer after the injury or after a period of clarity. Those who remain unconscious for extended periods may be in a coma, vegetative state, or minimally conscious state.
• Shock: A body response triggered by loss of blood flow to the brain, which can indirectly injure brain tissue.
• Stroke: An interruption of blood flow to the brain caused by an artery blockage, hemorrhage, or aneurysm. This lack of oxygen can cause brain cell damage. Stroke effects depend on the location and severity of the damage. It is sometimes called a “brain attack.”
• Sympathetic storming: A stress response that can include agitation, fever, irregular vital signs, and excessive sweating. It can occur anytime from 24 hours to a week after an injury and is thought to be a sign of returning activity in the nervous system.