Be there for them, spend time with them, get to know them, support em through the good and the bad, try to understand what they’re going through.

Here’s a few things that have helped us with this disease:

Non choke food taster

Heating blankets Helps Their Aches And Helps Them Sleep
Air Conditioners
Sensory Items (Fidgets), They are often squishy balls that feel different helps with sensory and strengthens hands, rocks springy things noisy things soft things, anything they find and feel even as simple as a rock. In sensory needed though you need to have a big sensory ball, the fuzzy/stringy play balls.
Bed Surround So They Don’t Bang Against Bed Rails Or Fall Out Of Bed


Use those wraps that have the corn in them to heat up and keep for them, always always have them available.

Walker Sometimes Full Body Sometimes Smaller

Balls From Ball Pits Often Calm Them
Body Sox Calm Them and Help With Restless Leg Syndrome
Pressurized Vests Or Weighted Item Calm Them
Stroller/ Wheelchair
Bath Chair/ Potty Chair
Cups That Monitor The Amounts That Come Out Of It (Water Bottles work too and Toddler Cups)
Special Socks For When They Rub Against Things
DVD Players or Music Players for when they get upset or overwhelmed, they now have ‘kid tough’ dvd players, music players with big buttons and that don’t break easily
Televisions yup those help alot
There’s alot of games out there that help with speaking, memory, etc like guess who
Rocking Chair helps with the calming and movements
Straws very helpful when it comes to drinking but sometimes doesn’t work due to the work it takes to suck the liquid up the straws
Ispy books
Pads of all sorts for the falls, knee pads, elbow pads, pads for under tables, around beds, pretty much anywhere that you think should be padded
Balancing Boards
Wii Fit helps improve balance, movement, hand eye coordination, and it’s just plain out fun
Excersize Balls
If they can’t drive and want to get around try a scooter, go kart
Hand Braces
Foot Braces
Therapy Putty helps strengthen hands and counts as a fidget
Flat Shoes that supports whole foot and can even find some called high tops that support the ankle too, we use bendable for the toe slipper/shoes now called muk luks
There’s page turners where you press a button and they can turn the page that way
Dynavox/ speaking device
Noise Reduction Headphones for when they listen to music or watch dvd or anything to reduce stimulation and they don’t fall off as easy with movement disorder
Non- spill cups they don’t spill over when dropped
Diaper Genie keeps the house smelling good and holds messes easily
Milkshakes/ puddings/ jellos/ wafers help when they get low on calories and have a hard time with intake
Shower Head With Detachable Sprayer
Ceiling things like star shadow or anything to decorate the ceiling when they get advanced
Ice Pack Rolls/ Gel Ice Packs
Tag-less ,seamles clothing
incline board
carnation instant breakfast, or scandi shake suplement juice boxes/by boost,ensure,water bottle at school
padded seatting in school
alternating preasure mattress
nuk/oral exercises
memory foam pads
5 point harness booster seat on chair
special needs carseat
versaform cushion
breastfeeding pillow for positioning,pillows of all sizes
cotton beeding,bathblankets
bandanas for clothing protection and bibs with the bottom catchers
sheepskin covers
pulse ox with ekg reading and recording ability and core oxegyn sensor
B.Preasure cup
baby moniotors
future phone/programable
wheelchair ramp
fingertip crayons and paintbrushes
sand tray
magnetic games
large button remote
daily medication organizers
heated mattress pad

heated blankets

picture words

memory games

I use a camcorder (flash) to document my symptoms and tape recorder to record memories or anything i want them to remember or things i want to remember. Karli used disposable cameras.
cooling mat they have large rolls that look like ice cubes probably in more of the sporting goods

punching bag,for agression
balloons,balls of all sizes shapes textures

anything that their senses like a rock a pen and eraser

button and seashell collection
beadding sets
lots of HUMOR
hammock swing/ airwalk swing/ platform swing
Food Grinder

always bring your own stuff to the hospital too blanket pillow their meds you don’t know what meds they have in supply for them that they take, keep an emergency bag packed, and you can get a small pill carrier with the chopper to cut them in half inside a small carry in purse the size of your hand.

Magic Bullet to blend, milkshakes, food, anything really

Use calenders to organize nurses, doctors, anything you need to remember it helps alot trust me, you can even use them to write down events that happened that day to help with memory
Make lists of things to remember for doctors or new symptoms, what date they happened, and things that helped them, or if they do chores keep a list of what chores
Post up little reminders when they need them about closing doors, how to wash dishes, how to shower, how to get dressed etc always get copies of medical tests and consults for helping to coordinate medical care

What i’ve found to help anxiety wise is progressive muscle relaxation and calm breathing if they get angry it usually helps to have them walk away and calm down

wreck this journal this is not a book  those kerri smith books help you can destroy them it tells you too and there’s the book of me a do it yourself memoir past present future you can fill out how you want your service the songs your life 

memory gets hard, photos maybe even write a memory by it videos stories scrapbook

recording what you were able to do once on camcorder etc

behavioral modification therapy
art therapy
massage therapy
water therapy
music therapy
Yoga is good for hd
Physical Therapy
Occupational Therapy
Speech Therapy
clapping therapy/pulminary therapy

keeping videos on hand with you of whats going on for the doctors and it seems they like to ask you questions over and over, meds, diagnosis, primary doctor, keep it written down with you so you don’t have to repeat it

Please email me so we can keep the list and information growing on here!

wristbands also help her from banging her wrist into edges of tables or doorways, her wrist protrude a bit from the dystonia, and not much fatty tissue there to protect her wrist. In fact very thin.

And the dr. soles inserts helped in her foot pain

It looks like they put long socks on Sonia’s hands to help her

Thick it works really great for swallowing food and beverage!


A gallon sized zip lock bag. Hair gel. Then I bought little rubber toys like bugs, rubber band bracelets…. Also sparkly confetti. I even found confetti that say”Elijah”. You could put anything in it. Like marbles… Etc. Then I used duct tape to seal it. I went all around the edges with the duct tape.


To Strengthen Hands, Just put the play dough in and tie the balloons, decorate them with sharpie, pom poms, googlie eyes


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