Remember Juvenile Huntington’s Disease mixed with a disorder is completely different then just having the disorder, it even can act differently
When my legs started randomly giving out, no doctor wanted me to get a wheelchair because of them being afraid i’ll be too dependent on it, but I needed it. We went to a doctor who looked at me feet and heard about me falling like that and he said of course i’ll prescribe you a wheelchair why wouldn’t I your legs keep giving out.
Jhd wears away your teeth even if you think you keep them perfect, you’ll always hear about how you need to brush better, the right way, more times. There’s a point where they stop believing you and they laugh when you talk about it being jhd. They tried to keep telling me to calm down when i was shaking in a chair during it. They forced the teeth xray thing into the back it felt like it was going to bleed they said i wasnt opening enough, if i wasnt it was dystonia not me.
I used to run fevers all the time, they never got up though, they just stayed low grade.
It’s hard when people don’t understand you have a mental issue from jhd too, it messes with everything even your mind.. i could be fine today and throw a chair in the wall tomorrow. I could get extremely depressed, i have random ptsd moments. I get get ocd and upset and calm and depressed all in one day. It drives me crazy because I am also extremely sensitive about this stuff.
I used to get so tired all of a sudden, we thought maybe it was the season or something. I would need to bring pop to school for energy. Always carry water. It got so bad that I couldn’t even shower without falling out from exhaustion. One shower can take a whole day out of you. One hour with a child can make you pass out for the rest of the day. It is very easy to get very tired.
The feeling of things everything can feel like styrafoam. It can all feel like wet hands on paper. There are special paper feeling texture you can find that work, at least i did.
Shirts socks jeans, let them feel them and decide, and if they move into pajamas, don’t force them back into regular clothes. I’m now in a housedress. Senses are very tricky. I made a fidget spot so i can keep fidgets, great for when you can’t sit still at the doctors because they’re always watching you, or it feels like it. It can also be sound. Anything you find that feels good to your senses, rocks, marbles, maraca, clackers, squishy things, hard things, velvet things, bubble wrap, when it feels good add it. You can have days where your senses are too much. And there are days when they’re too little. You grab your fidgets and it helps a lot.It can make an aweful day feel much better to your body. Then there’s the days that everything just feels aweful the sheets the clothes the sounds everything and you put your hands over your ears and just scream, in my situation attack. Puppies Help.
Some days are just so frusterating.. everything falls over when you touch it, it’s like a domino effect. You trip on everything. Just aweful days.
When you get sick when you have jhd, you don’t just get sick. You have a virus, that causes symptoms to get worse. And you’d think the virus would go away, no. You keep it for months..that is until something else comes around and it doesn’t always have to be just a virus and jhd, it can be virus jhd and a uti.. it hits you where it hurts always.. you always have to keep faith and remember Jesus went through life and asked God to let him go let his pain go away don’t make him do this.. Jesus stuck to God’s will for him. Faith
The immune system is in overdrive and won’t turn off.
When dystonia gets your eyes focused on one thing and you can’t move until it unsticks. It’s annoying but not painful unless you’re staring at something painful.
I hope randomly, people don’t believe it’s the disease but I do.
I eat crazy slow and don’t even understand how.
Dairy makes you very sick.. You can drink pop, eat what you want, then you can only eat specific things and drink specific things.. dairy gets terrible.. if you don’t eat and drink only what’s comfortable, you’re going to get terribly ill from the pain. You have to weigh the worth. Sip of pop, day with the flu like symptoms. Your favorite potato chip, extreme stomach pain. Some days you’ll be so sick of it you’ll eat something you’re not supposed to, it’s weighing the options. That we found, is no type on tylenol to help. Most things are unhelpable even doctors can tell you that. When it all comes down to it, that’s what i hear. They came back and now i’m evening my odds, i eat parts of food and some candy when i feel i can handle it enough. Sometimes it just hits you hard all of a sudden. I ate tuna salad for a long time, then moved on to mashed potatoes, tv dinners, poptarts, hot chocolate, and you can stay on them for a long time.
All tests come back normal, even if it’s completely irregular. Don’t really understand why. Heart tests, blood tests, swallow tests, etc.. even brain monitoring on camera while taking away your meds over and over
JHD Stomach Aches.. feel so bad it feels like you should die. They can range in severity. You feel like going to the bathroom and throwing up at the same time, because it hurts that bad. Extreme cramps that come and go, and you have to wait them out, you could take sleep medicine and get extremely tired, if there’s a sleep thing that works, and you might be able to beat it with sleep at 6 in the morning after a whole night of pure pain.. I slept on the recliner, the couch, eventually i made it back to a regular bed, after a hospital bed for propping me up during sleep. After awhile it will settle, but it might take awhile, but there is hope. For main digestive issues we do use something that isn’t fiber, but i’m not supposed to list names on here, but it’s a miracle worker for pain too..
Menstrual cycles in jhd are so more severe because of cycts that come with the disease and make it hurt a billion times worse, every time you get your menstrual your on the floor plastic bag, doubled over rocking, rocking helps a lot, but if you stop rocking, it’ll hurt a lot, so when it starts feeling numb, don’t stop rocking, try to fall asleep. Only one time of generic med helps me here, it takes forever for you to find the perfect thing. Perfect thing you can handle in your stomach, perfect thing to help pain go away, and always prayer, He does help you even if you can’t see it
*Things Needed* Heating Blanket Heating Mattress Pad One Of Those Things You Put In The Microwave And Heat Up With The Bean Or Corn Stuff In It ( Preferably More Then One) Regular Heating Pad
Nerves, I used to get so nervous that even before an appointment i’d get really sick. They’d have to schedule things so I didn’t know when they were so I could go and feel fine during it. It works that way now too you get nervous for no reason and it drives you insane, even to the point of it hurting.
Itching, Mom says that it is a form of neurological pain coming out in itching instead of pain. You could say some days that itching feels better, others it feels so itchy and you can’t find the spot, that you’d rather have the pain.
Dystonic storms, we just found out were a mix of seizure with jhd, we call them attacks, we don’t know what they for sure are. They hurt so bad, they twist and contort your body, make it move it ways you never thought it could and you can’t stop it, and the doctors try to tell you you can control it, yeah right. There’s nothing to be done once you have had you’re main stuff to try to stop it, you might end up in the er if it gets bad enough for long enough. It can get irritating, unable to move, painful, even sometimes boring if it lasts a long enough time. Pad the area because you can’t stop the movements and they’ll hit you on yourself, they’ll hit you on furniture etc.. They do progress though, they started as dystonia shaking, and went to rocking, and just gradually continued to get worse.. be careful when your fists close they might be stuck on a fork or something, it hurts when you pull on it to get it out, and if your fingernails are really long, i have to chew mine they go into my hand. I’m completely conscious during these and your eyes rolling up hurts bad. yes, im using spell check on some things. and often dragon speak.
You can unconsciously bite your tongue sides of your mouth especially when you’re sleeping, your dystonia is also unconscious during this time so we got hand braces to try to keep my hands open during the night. We also use chew tubes for your mouth, be careful anything little or shaped odd anything can slip in your throat.
If a doctor and nurse, if you’re in the hospital and you need nausea meds, I always get the stomach ones, have them put it in straight, it’s more painful if they put it in sideways, and even though straight leaves bruises its worth it compared to the pain of having it put in sideways.
Sometimes dystonic forms are painful, it makes you twist it and it hurts, sometimes you twist it in that position because it feels better, i used to sleep with my arms above my head. Sleeping is really tricky, your body can get rls restless leg syndrome, and it can affect your whole body so your whole body is uncomfortable.
did u know you fall too much and catch yourself with your hands you can break your wrist, well this can prevent it, it’s just a skateboard gloves for your hands
You know that painful tingling you get when you sit down too long, you’ll have that often. Except it takes a long time to go away and it gets so strong you can hardly bear it. Mostly in your legs and feet still though. Standing on it will help though, you have to stand awhile a lot.. it feels like pins and needles. Just learned that these are a type of seizure.
Lean your head all the way back then bring your chin all the way down, my fingers tingle when that happens, just curious if anyone else has a reaction to that haha
One side of your body is worse then the other when it comes to everything.. my right side is worse then my left side.
If your ears are driving you insane and you can’t hear all the time very well, jhd comes with earwax buildup that’s aweful. I have to go to the doctors for them to fix it.
Getting a good antacid, you need that. I used to have to carry things around with tic tacs because I would randomly throw up, i call it spewing, because it’s not all throwing up as letting up.. antacids help a lot with that. It does feel better also to feel the relief. I’ve always wanted the gtube just for the meds and throwing up part, but i can only have one if i want feeding too, no.
Dystonia can all of a sudden form you, and it lasts awhile, but it’s not permanent, yet at least for me. It can last at bedtime too i’ve fallen asleep in it. It can cause cramps in your whole body or even the whole thing at once.
It gets really hard to breath. Like i yawn all the time, other people like Karli had breathing issues in a different way like a weird breathing. and Yawning all the time unable to fully yawn, hurts bad.
A Lot of people might think it sounds ridiculous to tell things like this, but people need the truth.
My hips dissaligned from how I walked, my feet turn and I had to use foot braces for awhile, then high tops for support, now i use muk luks because even the toes are bendable and I go up on my toes. It hurts bad to have things not aligned right my knees go inwards and my feet go up into my legs, causes huge aching, and needed heating stuff is major important. I used to use feet braces but I toe grabbed.
Your heart can feel frozen cold, painful, i’ve been told that is also neurological. That experience can also turn off and on, can’t find something to help it though.
My head hurts all the time, it feels like it’s so busy thinking and doing, but it gives me thoughts that aren’t mine and is so annoying, it feels like i’m running a race or something.
My body all of a sudden gives out I go limp and can’t move any part of my body. This can happen after seizures also.
I have night seizures especially during storms, the easiest way to tell if you’ve had a seizure is if you’ve had an ‘accident’ or not. There’s also a huge memory loss and a lot of tiredness.
Sleep medicine doesn’t work, i use something for a boost it’s an allergy med, you have to get creative on what makes you sleep. I sleep when I can, I wake up when I can. Just do whatever your body feels like it can do. Even if you have to put school in the afternoons for half days. You can stay up for days, I’ve never beaten Karli’s record though.
Memory loss is aweful I can be talking fine and forget what to say next. I can talk fine and then be unable to talk fine later the same day. Most memory loss seems to be post traumatic stress disorder, memories will all of a sudden come back to you. but even if you try your hardest you can’t remember them all, very frusterating and irritating, i’ve done scrapbooks and photo albums because of this.
Getting lost in schools, they had to make me a book.. teachers picture, class name, what time, a clock showing the time, what time i go and what time i leave. Room number in the same picture as the teacher. spare books so you don’t have to carry them to and from school, books in the classroom, so you don’t need to use your locker, leaving a few minutes earlier will help a lot too, no classroom hustling with classmates thing, taking a friend with you, to help show you where your next class is, to supervise you incase of an attack or seizure or something, and if you are using a locker, to open it for you. I never felt like part of that class anyways.
I have passed out in school and turned blue. I got up and could barely stand up or see or understand anything.. It’s heart stuff, you get heart palpitations in your hand or side or toe, your toes also cramp up very easy, very painful, the palpitations though are just odd. I was fine after i passed out. I also blacked out during gym class and was still standing but all of a sudden everyone was yelling for me to move, and i thought i had moved and i didn’t i blacked out. Your heart can go fast or slow do whatever it wants. It can become irregular. It
Friends do have a habit of leaving. Maybe they’re scared of the disease killing you and watching. Maybe they’re scared of how hard you are to manage now. Maybe they couldn’t handle you anymore. Maybe you left them because it was too hard. I know I get so scared around people I can’t handle it and attack a lot. I did stop contact the friends who didn’t leave, because of how hard it is, they graduated went to college had a kid moved away new car stuff like that hearing it, and there’s the fear of expectations, if they visit, are you expected to let them visit your house all the time stuff like that also, as in people who live here that i’ve given up. I love having friends who understand visit, who’ve had to go through to understand it.
It is painful. and very scary. and very comforting also. the whole dying thing. Your scared it’ll take you and you won’t be there for your family and dogs, scary you see yourself not there and the effect. It’s nice through the pain knowing it does and and you’ll be with your loved ones soon. Pain free.
Your eyesight will also get blurrier and blurrier over time. I’m also photo sensitive, so lights like you’d expect to cause a seizure, might cause a seizure and attack and make me really sick. So can depth perception.
I think i’m one of the only people who gets the flu sick from staying in hospitals.
We learned from an er doctor, that the muscle movement in jhd causes blood sugar to drop so they put glucose in me and i got to rest, not recently, but i thought you might like to know because i randomly need something to eat and something sweet also, peanut butter works good, like nutty buddy bars however you spell that but its from the muscle movements and everything and probably the spasming too
Extreme ocd. When i think i need something and can’t have it until whenever, it kills me. My family can vouch for me on that one haha I also have to count, even when i can’t tell i am i’m counting there can’t be 6, so give the one with the 6 to me and the others to them and make it 5 but then 5 plus the one i just got rid of is 6. It’s very frusterating and annoying.
I’ve been twisting and contorting lately and my sister told me it looks like when Karli did acrobat tricks and we didn’t know how she could do them, it’s not as painful as i thought, but it is still painful
I remember when I kept doing tests, say the color word say what color the word is i know i did it a lot, not just for clinical trial but also for school tests and other stuff it sort of just follows you like that
No matter how many times you’re told it or how many times you think it might be true, there are always side effects to being taken off of any medication, learned that the hard way.
Myoclonus, when your leg starts shaking up and down uncontrollably and you put pressure on the bottom of your foot to make it stop
The physical therapist tried to do things that I wanted to not do like that and they wouldn’t let me change it so I couldn’t do pt anymore like that
Doctors etc, are a lot nicer to your kids when you’re around even at the dentist, I found that out the hard way too, stay by your kids.
I loose a ton of hair all the time, you can fill a hairbrush by brushing it once. You never go bald, my sister wears extensions because of this. My mom likes to keep mine short so it doesn’t get tangled from everything.
I always feel like I have to go to the bathroom!! Even if i don’t have to, it just all of a sudden decides when you do and don’t have to go. You can sit there and wait forever just to go pee. No matter how many uti tests you get it still comes back clean even when it hurts like a uti and burns. You also get chronic hemorrhoids with jhd.
I’m telling you everything because it’s not easy, but it’s the truth.
I’m tired of trying to figure out what everything is. It just exists is the theory that I decided, it just exists, my leg hurts my head hurts i had another seizure, it exists and they can’t help it.
If the doctors or someone tells you it’s sudo, that you’re faking it, they’re not worth the time. They thought I caught it from watching Karli and Daddy have it or watching the kids have it, you can’t catch it!!
I’ve watched my Dad have it and know that jhd is way faster and more painful then adult hd. It gets a lot less help. They need different things and can’t use all the same things, the brains don’t lose neurons, they get damaged and scarred in jhd.
My little sister and dad passed away and it’s so hard to deal with the change in life, and the change in doctors, and change everywhere. It’s like everything in one place and then it all changes and you need to rotate it back and it won’t.
It’s like your on a plateau, you go up a little a good day. Then you drop on the bad day. Then you go up on the good day again, but then you drop farther the next time.. and so on.. hence sicker and sicker and sicker and sicker.
I’ve found out i’m able to flip chairs over, even my wheelchair, I know use my walker to get to the broda chair hahaha I don’t think i’ll flip that one hopefully. When i’ve been falling lately I go straight down and the time before last I hit my funny bone hard on a medal dog dish, the er said it’s a bruised ulna bone.
There’s days i’m stuck in bed days i’m stuck in a wheelchair and days i go from bed to chair or walk around or go to town too on good days or sometimes good parts of days.
Don’t push me when I say I can’t do it I mean I can’t. I know what I can do and can’t do it’s only fair you respect me in that way.
Babbling like a record stuck playing in your head you’re drooling all you can hear is pieces coming out of what you were about to say or have said
It’s like my body bites itself, i feel bugs and it itches and hurts but i can watch it and almost every time there’s never a bug there it’s like it’s biting itself
My memory’s getting worse with all the seizures, all of a sudden get confused, my arm forgot how to eat for awhile i had to eat sandwiches etc no bowl for awhile
Instructions require step by step slowly
I cant drink hot chocolate anymore, water mainly, if im lucky milkshake with medicine, usually powerade or gatorade with medicine at night because it feels like i always have a uti, i even take uti medicine to feel somewhat better
A ton more nighttime seizures, then im stuck in sleep and awake and get stuck in my body
Muscle spasms in my body that you can physically see from the outside
Lately inability to eat hard foods even french toast.. i eat jello chicken noodle soup soft mac n cheese stuff that can go down easy, my digestive system is so messed up.
Severe stomach aches that make you feel like death
Always thirsty and still dehydrated so weird
My bones have been itchy, yes it feels possible, drives me insane unable to scratch like that
Depression has gotten worse by a lot
Ipad is used to listen to books play games at my pace and as a communication device, my easy to hold non break cover with handles on it will be here soon
I have a magic healing want hoping it helps
My mom dresses me a lot of the time after I shower, it’s so hard to shower I fall, then I use a shower chair and I have seizures on it, sometimes my Mom and Sister just wash my hair for me. I can’t keep it brushed very well because everytime I do i have more seizures.
I fall a lot because walker doesn’t help all the way and wheelchair will get rid of my ability to walk faster, canes are too little help.. falling hasn’t extremely hurt me yet, i’m actually quite good at not getting hurt from it recently i fell on the porch and hurt my head but not bad just enough to hurt
My teeth have gotten really really bad, so it really affects everything
I do chew my lip lately its like putting pressure on a wound it feels good to do it
I have a ton more pain and being sick it’s gotten chronic so it’s probably symptom that only get worse, a lot of the time i’m in my hospital bed in my bedroom with a tray table holding computer etc up so i can be not as bored when i feel good enough to be on a device, otherwise i look up at the beautiful ceiling full of special butterflies made for me to watch and look and my favorite movies, i armed myself with online storage that connects to roku so i dont have to worry
They say i’m still so active and able mentally because of the computer all the time
My memory is so bad i’m like 10 second tom, if i dont do what im thinking i forget and have to do it fast before i forget again
I choke so bad i went a whole day without food or liquid.. mom makes a special pie with boost i can handle, when i choke im at risk for pneumonia and it’s a matter of time thing and someone said its when i take sharp breath in when i choke it could go in my lungs im severely allergic to all antibiotic and don’t want a feeding tube. I can choke a whole day on chicken nugget or even pancake.
We have a baby 2 way monitor mom can talk to me and she can see and hear me so i can yell for help when i have seizures or hurt too bad or can’t sleep and during the day i use a bell to ding for someone yelling doesn’t work very well only at night the dogs also help get me help by barking and pressing emergency button
I’ve been falling a lot and a ton more seizures, so we got a helmet from the danmar website and rollerblade hand braces and basketball player knee pads i got locked in a seizure and almost died but the er got me out of it luckily
I’ve noticed a lot of questions about this stuff so I added what i thought might help, if there’s anything more just ask and i’ll try to add it
They say Juvenile Huntington’s Disease, used to be called parkansonianism, is extremely rare, than why are so many people showing up? You might think we found most of the kids with jhd, but the truth is this is only a small portion of them.
Just because it say’s jhd and hd on it, doesn’t mean it helps the kids too. You have to be careful.
Many people just call them spoiled or lazy or bad kids.
They say a small percentage gets seizures, but they’re finding it’s closer to half or more.
Each child’s different even in siblings.
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
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
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
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
Wii Fit helps improve balance, movement, hand eye coordination, and it’s just plain out fun
If they can’t drive and want to get around try a scooter, go kart
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
carnation instant breakfast, or scandi shake suplement juice boxes/by boost,ensure,water bottle at school
padded seatting in school
alternating preasure mattress
memory foam pads
5 point harness booster seat on chair
special needs carseat
breastfeeding pillow for positioning,pillows of all sizes
bandanas for clothing protection and bibs with the bottom catchers
pulse ox with ekg reading and recording ability and core oxegyn sensor
fingertip crayons and paintbrushes
large button remote
daily medication organizers
heated mattress pad
a battery operated doorbell with add on a ble buttons you can take with you
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
lots of HUMOR
hammock swing/ airwalk swing/ platform swing
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 relaxationhttp://www.anxietybc.com/resources/pdfs/MuscleRelaxation.pdf and calm breathinghttp://www.anxietybc.com/resources/pdfs/CalmBreathing.pdf 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
Yoga is good for hd
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! firstname.lastname@example.org
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!
i use an ipad with nikitalk for speech when i need it