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
Resources-Drinks/Shakes

INDEX Page

This picture is a promo I made up when I was thinking
 about having these holders made.  Haven't, yet!
Maybe some chapter or support group could have
them made for a fund raiser?
hddrinkholder.jpg
There are many excellent ideas and easy-swallowing recipes
submitted by HD familes on HDAC section on  Food Recipes
 
Eating/Drinking Helpful Hints
Jean E. Miller
Some things we used and/or read about
    Eating/Drinking Helpful Hints

    At some point, a person with Huntington's Disease may have difficulty
    eating and drinking. Some of this difficulty is related to the weakness
    of the swallowing muscles. Other difficulties are a result of weakening
    hand, arm and shoulder muscles.

    With chewing and swallowing weakness pHD's must make changes in
    their dietary consistency meaning they have to eat softer foods and
    avoid thin liquids.

    This deals with adaptive equipment that will help pHD's who are still
    able to eat and drink on their own.

    EATING UTENSILS

    Finger and hand atrophy or weakness may make it difficult to hold a
    conventional knife, fork or spoon. Utensils with built-up handles are
    much easier to use. A sample can be seen at

    http://store.yahoo.com/healthline/surgriplarha.html

    However these can also be bought in most retail stores for people
    with arthritis.

    Another idea is to use the foam rubber larger curlers (removing the
    plastic curler) and place those over the utensil. This makes them
    easier to grip, is soft on the hand and they can be washed or thrown
    away. We used pink, or course, for Kelly!

    For someone who has a tendency to bite too hard on their utensils,
    there are some with rubber coatings that can be used. To see a sample

    Some brands of bicycle handlebar grips fit ordinary household cutlery,
    the "fatter grip' can lessen choreic movements.

    PLATES

    Use plastic plates that will not break when you drop them!  Special
    plates with raised edges make it easier to eat. You can push the
    food against the edge to make it easier to get it on your fork.

    Make sure any plates that you buy are microwave safe. Speaking of
    mircowaving a tip I use is to wet a paper towel, squeeze dry, and
    use to cover food to keep from splattering and keep moisture in!

    There is a handy little device that clips onto plates to keep food from
    being pushed off. A sample can be seen at

    http://www.wisdomking.com/product16110c250.html

    Or they make plates with suction cups on the bottom. To see a
    sample go to

    http://www.wisdomking.com/product15794c246.html

    Also, the microwave type plates with dividers help keep foods from
    getting mixed up on them.

    CUPS

    Cups or mugs with handles are easier for pHD's to grab. Plastic cups
    are the best. The plastic travel mugs with lids work great.

    So do the sports jugs. If you happen to tip over or drop one of these
    mugs, you end up spilling a lot less liquid. There are several special
    cups for Dysphagia.

    One is "Limited Flow"
    http://reliantmedicalproducts.com

    You can also find sports drinking cup holders that can be placed around
    the neck where the cup sits on the chest and the straw is accessible
    by just bending the head down. Kelly used one of these when her
    hands were too shaky to hold a cup.

    The sports drink containers Kelly used were shaped like an hour-glass
    making it easier for her to grasp.Go here to see a picture of the shape

    http://www.imagestation.com/picture/pb0fc82a90612520eacd8b03aecc8ac9d/feb0e3bc.jpg.orig.jpg

    Straws

    Straws are essential for pHD's. Straws are also helpful to drink with your
    chin tucked down, which helps prevent aspiration and choking.

    There are some straws with clear plastic tubing with a wider diameter
    opening which requires less effort to drink more which are used by a
    hospital x-ray department for patients who had to swallow barium prior
    to x-ray.

    Check with your local radiologist or hospital to see if you can obtain some
    of these straws or if they will order some for you. Most hospital social
    services or patient administrators will assist you in ordering special products
    to help with meals and baths, often ordering them for you if your doctor
    approves and your insurance covers them.   If insurance doesn't cover
    them, typically they'll order and you pay them when the product is received.

    Molds (Pureed foods)

    One common dislike of pureed food is that most of it looks like a big blob
    of gunk on the plate!

    Just because a meal has to be pureed is no reason not to make it appear
    appetizing!! One thing I did was to prepare the food normally, then show
    Kelly what it was before pureeing it. That way she got a visual picture of
    what she was going to eat.

    You can also use molds for pureed foods to make them appear more appetizing.
     

    Sometimes it is easier for a pHD to eat sitting on a couch or recliner.  A
    bed-type tray with edges large enough to fit over a pHD's lap can be used.
    Lining the tray top with a rubber mat or non-slide material will help keep
    plates from sliding.

    Chorea

    A velcro weights can be secured to the wrist, helping to steady the hand
    used for eating. These can be found at most sports stores or if you get
    the primary care physician to write a prescription for them, the cost is
    covered by insurance. Samples of these can be seen at

    http://store.yahoo.com/healthline/wrisandanwei.html

    The ankles ones come in handy for people whose legs have chorea and
    who have a difficult time keeping them still, especially at meal time.

    Clothing Protection

    With unsteady hands accidents with foods are a natural. Protective coverings
    help preserve clothing and with clean ups.

    Normal bibs can be used but are sometimes an embarassment for an adult.
    Attractive aprons can be bought, or even made. I stocked up on plain ones
    from arts and craft places like Michael's that could be left plain or decortated.
    Plus they have some really cute/cleaver ones in the BBQ departments
    especially for men.

    Support

    Bolster pillows to help person upright during meals can be placed on both or
    one side of the body if the person has a tendency to lean.

    Those rolls of rubber you can put to line your cabinets also help by cutting
    pieces to place under buttocks or back to help keep the person from sliding
    during meals.

    Or cutting the egg-crate foam rubber you can buy in bath/bedrooms sections
    of Walmart, etc. can be cut to fit to help from sliding.

    Rubber mats under dish, drink, etc. helps keep them for sliding. I bought the
    rubber sheets you can cut to any size at Walmart.


    Some Product Catalogs: (do a search for Aids In Daily Living)

    Aids in Daily Living
    http://www.curvware.com/

    Dr. Leonard's Home Health Catalog


    Thickners

    Diamond Crystal pre packaged shakes, bev., thickners
    http://www.diamondcrystal.com/

    Hornel Foods

FOOD CONSISTENCY
Jean E. Miller
Description of 4 types of consistency for various stages of eating.

Overview

    By modifying the consistency and texture of foods and fluids, the risks
    of aspiration are decreased. Diets have been devised that will help
    maximize your intake of nutrients, calories and protein while conforming
    to your limitations in swallowing certain food textures and consistencies.

    These diets can be divided into four stages. The diets progress from
    regular foods to pudding consistency. Frequent small meals (chosen
    from the appropriate stage) are preferable to three large meals.

    When changes in consistency of foods become necessary, it is useful
    to think in terms of familiar foods. Four diets for patients with swallowing
    problems can be:

    Steak Consistency Diet - regular food

    This diet consists of regular foods and liquids without restrictions and is
    recommended only for persons with normal chewing and swallowing function.
    No modification in texture or consistency is made.

    Pot Roast Consistency Diet - soft food

    This diet consists of foods that are easy to chew and that can be held
    together in the mouth. It requires active chewing of soft cooked meats
    and vegetables. Foods that provide needed fiber should be allowed
    whenever possible.

    Care should be taken to eliminate foods which contain particles (i.e.,skins,
    seeds, raisins, nuts) or foods that can easily break apart in the mouth
    (i.e., dry cottage cheese, dry scrambled eggs, dry cereals). 'Crumbly' foods
    should be eliminated (i.e., crackers, corn bread, cookies, dry cakes) to
    minimize swallowing difficulty.

    It is suggested that you eat three balanced meals. Snacks can be added
    as needed to maintain adequate weight

    Meat Loaf Consistency Diet - soft, chopped food

    This diet consists of soft textured foods that are easy to chew and swallow.
    All meats are finely chopped or ground with added gravies and all vegetables
    are chopped. Foods should be easily held together in the mouth and require
    less chewing. Foods that provide needed fiber should be allowed whenever
    possible.

    Foods containing particles (i.e., skins, seeds, raisins, nuts) or foods that
    can easily break apart in the mouth (i.e., dry cottage cheese, dry
    scrambled eggs, dry cereals) are eliminated.

    All liquids including soups should be thickened using agents such as dried
    skim milk powder, cornstarch, pudding and pie filling mix, strained fruit, flour,
    or commercial thickeners such as Thick 'N Easy or Thick-It. All "crumbly"
    foods are omitted (i.e., crackers, corn breads, cookies, dry cakes) to
    minimize swallowing difficulty.

    Pudding Consistency Diet - soft, pureed food

    This diet consists of foods that require minimal chewing, and foods that are
    easily swallowed.

    Foods may be blended with gravies and sauces to increase calories and to
    make the food easier to form into a bolus in the mouth. You may use a
    blender to blend foods or you may wish to purchase strained or pureed foods.
    Foods that provide needed fiber should be allowed whenever possible.

    All foods containing particles (i.e., skins, seeds, raisins, nuts) or foods that
    can easily break apart in the mouth (i.e., dry cottage cheese, dry scrambled
    eggs, dry cereal) are eliminated.

    All liquids including soups are thickened and all "crumbly" foods are omitted
    (i.e., crackers, corn bread, cookies, cake, etc.) to minimize swallowing difficulty.

Suggestion

Delicious Beverages

OTHER RESOURCES

Smooth Smoothies (tips) - Chowbaby - Forget spending cash for healthy beverages. Make your own at home and get it just how you like it.

Free Smoothie Recipes

Smoothie Recipes - Whole Nectar

Everyday Cook Recipes - Smoothies & Beverages Recipes
... Smoothies & Beverages Categories Smoothies (16) Beverages (13) Punch (4) Favorites Mango Smoothie Iced Tea Eggnog Orange Punch Irish Coffee Peach Melba Smoothie Add A Recipe! Send us your recipes to be included in ...

Everyday Cook Recipes - Smoothies Recipes
... Home > Recipe Box > Smoothies & Beverages Smoothies Banana Smoothie Triple Fruit Smoothie Frosty Fruit Smoothie Mango Smoothie Peach Melba Smoothie Fuzzy Banana Navel Wild Berry Freeze Banana Pineapple Colada ...

Smoothie Central:

Strawberry
Pine-Orange-Banana
Blueberry
Apricot-Nectarine
Strawberry-Banana
Carrot
Tangy Summer Blend
Apple Coconut
Papaya Raspberry
Tropical Tofu Berry
Macho Power Shake
Strawberry Pineapple
Apricot Mango
Melon Madness!
Pineapple Berry Crash
Papaya Nectarine
Artic Forest
Chocolate Banana
Kiwi Strawberry
Pistachio Banana
Pina Colada
Peaches & Dreams
Chocolate PB Banana
Apple Peach Kick
Black and Blue
Cantaloupe Cherry
Hawaiian Silk


PRODUCTS

http://www.bigtrainsuperstore.com/
http://www.blenders.net/flavors.html
http://www.slush-at-home.com/
http://www.customcoffee.com/paradise-bay.htm
http://www.floridanaturalflavors.com/
http://www.trisco.powerup.com.au/
http://www.freshjuice.com/
Fruitfull Fruties
http://www.fruitfull.com/fruitfull_smoothies.htm
you can dance while listening to the music here