Juvenile-HD

HOME

INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
Therapy Resources- Easter Seal

INDEX Page

Choosing a Rehabilitation Service

Physical medicine and rehabilitation refers to a comprehensive program that combines the talents and skills of medical professionals with those of rehabilitation specialists to assist an individual in enhancing their ability.
 
The major emphasis of this program is to minimize loss of function, enhance and/or restore function to an individual, and prevent loss of function, while ultimately, maximizing an individual's ability to fully participate in life.
 
Within the Physical Medicine and Rehabilitation programs are a wide variety of specialty services and support groups that address the specific needs of individuals and their family/caregivers.

 
Medical Rehabilitation

Photo: Therapist supporting a woman as she lets go of her walker.

Medical rehabilitation helps people with disabilities learn or relearn the skills they need to live more independently.

Physical medicine and rehabilitation primarily focuses on the prevention, diagnosis and treatment of disabilities to help individuals live as independently as possible.

Easter Seals physicians, nurses and therapists work together to help restore function lost due to a wide range of disabilities from temporary conditions that inhibit mobility, such as lower back pain, to permanent disabilities that result in complex cognitive impairment, such as traumatic brain injury. Easter Seals also promotes the quality of life and overall well-being of individuals through education and prevention programs.

Like all Easter Seals services, Easter Seals Medicinal Rehabilitation are comprehensive and individualized to meet each client's needs, family-focused to meet each family member's concerns, outcome-oriented with a goal of enhanced independence, and cost-effective benefiting from public support.

Early Intervention
Physical Therapy
Occupational Therapy
Speech and Hearing Therapy

Early Intervention

Easter Seals early intervention services include individualized intervention to meet the needs of each child and family services designed to help infants and toddlers work toward developmental goals at the time in their lives when they are most ready to learn and can most benefit from intervention.

Qualified professionals work with children from birth to age 3 who are experiencing or are at risk for developmental delays to optimize development and achieve the highest possible level of functioning. Occupational therapists, physical therapists, speech-language pathologists, social workers, early childhood special educators and others work together with parents to prepare each child and family for the eventual transition into a preschool program. Services may be provided at home or at Easter Seals centers that serve children of all abilities across the country.

Physical Therapy

Physical therapy services focus on enhancing or restoring mobility that may have been lost due to trauma, disease, aging or congenital abnormality. Easter Seals licensed physical therapists incorporate therapeutic exercise, physical agents such as heat or cold, mechanical and electrotherapeutic modalities, assistive or adaptive devices, and specialized manual techniques to encourage independence at work, home, school and in the community by:

  • improving functional mobility (including bed mobility/transfers and walking)
  • increasing range of motion and strength
  • promoting tissue healing
  • decreasing pain and swelling
  • incorporating safety, prevention and education

Link: American Physical Therapy Association

Occupational Therapy

Occupational therapy services focus on developing a child or adult's ability to perform activities of daily life, such as bathing, dressing and feeding, by enhancing or restoring function that may have been lost due to trauma, disease, aging or congenital abnormality. Easter Seals licensed occupational therapists incorporate the use of adaptive methods and devices, sensorimotor rehabilitation, purposeful activity and fine motor skill development to promote independence in self-care, work and productive activities and play or leisure skills. Treatment may aim to:

  • improve independence in self care
  • improve development of age-appropriate play and learning skills
  • improve fine-motor dexterity, behavior components and sensory or perceptual processing
  • develop specialized seating and positioning
  • achieve independence in vocational pursuits
  • develop workplace accommodations, assistive technology and devices
  • provide driver training for adults with disabilities
  • provide low vision rehabilitation

Link: American Occupational Therapy Association

Speech and Hearing Therapy

Speech and hearing therapy services focus on enhancing or restoring limited or lost communicative skills or swallowing capabilities lost due to trauma, disease, aging or congenital abnormality. Easter Seals licensed speech therapists incorporate the use of special facilitory techniques, augmentative and assistive equipment, therapeutic exercise and evaluation tools. Treatment focuses on:

  • addressing disabilities in children, including articulation disorders, language delay and stuttering
  • providing care to adults who may experience communication disorders, stuttering and cognitive impairment
  • improving oral-motor, swallowing and respiratory skills
  • providing augmentative and alternative communication systems to individuals who cannot rely on speech as a means of communication

Link: American Speech-Language-Hearing Association

Social Work

Mentally accepting a disability is something that doesn't occur naturally, it too needs to be addressed. Easter Seals social workers do everything possible to help individuals and their family/caregivers along this path of personal acceptance, which may include:

  • evaluation and assessment of the individual
  • case management
  • discharge planning
  • provide referrals to community resources
  • individual, family and group counseling for both children and adults

Nursing

Easter Seals rehabilitation programs often provide services with the assistance of a rehabilitation nurse. A certified rehabilitation nurse supports, coordinates and reinforces all aspects of an individual's therapy program. Assistance may include bowel and bladder training, as well as prevention of bedsores.

Assistive Technology

Assistive technology provides expertise in both the recommendation of appropriate commercial products, as well as the fabrication of custom equipment to best achieve each individual's highest level of independence. Services may include:

  • creating of custom wheelchair controls and seating systems
  • providing home and work site evaluations
  • modifying communication devices, access equipment for computers and environmental controls
  • supplying vehicle modifications

_______________________________________________________

Easter Seals:

Easter Seals provides services for children and adults with disabilities and
their families. To learn more, contact Easter Seals' information and referral specialist via e-mail for additional resources.
kvroman@easter-seals.org Some of their programs follow.

To find an Easter Seal Program in your state go to
http://www.easter-seals.org/resources/caregivers.asp
I checked out Florida and it  has a whole SLEW of Easter Seal locations!  Provides websites when they have one, contacts, etc.

-Camping and Recreation
http://www.easter-seals.org/services/camp/index.asp
Easter Seals addresses the need for accessible camping with 140 camping and recreation facilities across the country. Serving more than 76,000 people each year, Easter Seals camping and recreation facilities offer individuals of all ages and abilities the opportunity to experience the joys and challenges of summer camp in a fully-accessible setting. Easter Seals offers three types of camping programs nationwide to address the diverse needs of the children and adults they serve. Among the available programs are day, residential and respite camps.*

-Child Development Centers
http://www.easter-seals.org/services/survey.asp
offering top-quality inclusive care at centers across the country. Every Easter Seals Child Development Center operates according to NAEYC accreditation standards. Emphasis is placed on ongoing training for care givers; adult to child ratios to ensure small group and individualized attention; developmentally appropriate learning activities to meet the unique needs of each child; and superior facilities that meet or exceed industry health and safety standards. As a non-profit, Easter Seals can offer high quality service at an affordable cost, reinvesting revenues
back into its program services.

-Medical Rehabilitation
http://www.easter-seals.org/services/medphys.asp
Easter Seals Medicinal Rehabilitation are comprehensive and individualized to meet each client's needs, family-focused to meet each family member's concerns, outcome-oriented with a goal of enhanced independence, and cost-effective benefiting from public support.
    -Early Intervention
    -Physical Therapy
    -Occupational Therapy
    -Speech and Hearing Therapy

-Adult Day Services
http://www.easter-seals.org/services/adult.asp
Easter Seals adult day services are comprehensive and individualized to meet each client's needs, family-focused to meet each family member's concerns, outcome-oriented with a goal of enhanced independence, and cost-effective benefiting from public support. Adult day services offer respite for family members responsible for a relative who is unable to function independently, but does not require 24-hour nursing care. Participants may have:
    -a physical disability;
    -social impairment or mental confusion;
    -a need for assistance with activities of daily living that falls short
of 24-     hour institutional care; or
    -have returned from a recent hospital or institutional visit.

-In-home Care
Easter Seals in-home care aims to prevent premature institutionalization by providing the necessary support services to allow an individual to live at home. In-home care can both preserve self-esteem and dignity, and also promote increased independence.

-Assisted Living
Easter Seals assisted living residences are designed to meet special personal-service and housing needs, and sometimes health care needs, as well. Choices may vary from single to double rooms to suites and apartments.

-Medical Model
Easter Seals' medical model programs provide medical supervision and health-related services on a daily basis. Qualified staff administer medications and monitor a variety of medical conditions. Most often, therapy services (occupational therapy, physical therapy and speech therapy) are available. Some medical programs also offer additional services such as bathing and personal care. Referrals to medical model centers may include individuals who have recently been discharged from a hospital.

-S.A.F.E.T.Y First 
http://www.easter-seals.org/resources/safety.asp
    -Tips
    -Video
    -Key Considerations for Someone with Special Needs
    -Accessibility Resources
    -Contact