Jaceys JHD Journey~ My Story

week could  be jhd awareness always they so deserve it

i have new glasses called theraspecs for photosensitive epilepsy, they help sooo much it takes stress out of my body and i can fall alseep better for napping.. new phone doesn’t have fb chat only my cell text which is nice.. more real seizures then shaky ones.. my head and mind have even before the glasses been blah can’t understand what they’re saying can’t say yes or no to what to eat etc.. i just sit still and watch a movie play my game, but mom says its jhd and i’m sure the seizing doesn’t help either.. but whaa it’s like who what where when how, oh. hmmm… like completely invalid in that way

and now it’s time for Juvenile Huntington’s Disease Awareness Week the very first of it’s kind.

She shouldn’t have died she was only 7. She made the world a grumpier happy one and i’ll miss her terribly!! She brought happiness in grumpiness..

https://jaceysjhdjourney.com/grumpy-cat/

This is amazing, people are messaging the jhd fb page questions about jhd mainly about the timeline but more also so i send links of videos and share photos it’s soo great asking about just the kids!! this is what these kids DESERVE and need more of!! This is soo overdue and hopefully a step forward!!

Sign The Petition

Turns out he’s really good and it’s so relatable..

Ruins my life!! Paroxysmal dyskinesias (PDs) Consciousness is always preserved. Are a rare group of movement disorders with typical childhood onset. They are characterized by their episodic nature, usually arising out of a background of normal motor activity and behavior. Characteristic clinical features are sudden involuntary abnormal movements, comprising dystonia, chorea, athetosis, and ballism or a combination of these. PD can occur spontaneously or may be precipitated by sudden movements, prolonged exercise, caffeine and alcohol consumption, emotional stress, or fatigue. The duration of attacks can vary and may last from seconds to several hours.

The difference is dystonia in other people stop but having Juvenile Huntington’s Disease I still have the dystonia. it can be set off by a heck of a lot more, and it triggers real seizures also. and why the weather is so freezing it says in some cases triggered by exposure to cold. ugh It even occurs in sleep stages!! no wonder it’s so shitty when trying to sleep. I fall asleep worn out from the events, i awake thinking i had a seizure during the night(which does happen for seconds), and wake up unable to move but also fully concious.  So basically everythings tangled together the dystonia seizures the real seizures the sensory disorder issues the sleep issues everything is just together, because it’s jhd, and because of the jhd it’s progressive.  Too fast movements too much excersize fatigue it happens during sleep too. i need an Surface electromyogram (EMG), wonder if we could find one. It would also explain why I need to use a stroller so much more because it makes me more worn out to walk and i fall and have one of these paroxysmal dystonia things, or else real seizures or just unable to walk or move or shaky and jerky or everything.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002546/ and https://www.dystonia.org.uk/paroxysmal-dystonia

and Hypnogenic Paroxysmal Dystonia:
Epileptic Seizure or a New Syndrome

and https://jamanetwork.com/journals/jamaneurology/fullarticle/775082

Here’s one about just Dystonia types and info https://www.medicalnewstoday.com/articles/171354.php?fbclid=IwAR2cxk5r50_rigUzxXTdxmopnx1FcHF9nrNM0rDye48v8JhIFHcZkDd9tmY

I can tell you about those!! These kids with juvenile huntington’s disease get so underestimated sometimes all around the world… when people assume it makes an ass about them and you. Now the important stuff, they do everything with a brave ability to do things. Just breathing is a battle, so imagine how hard it is from sitting up, to someplace, to riding a horse, to basically anything, and they’re all children, who are dying. They still live. As soon as Byron was able to walk a few steps he got on a horse because it’s his passion!! Breanna L crossed her fingers and plays hand games with her brother, she made it to the zoo recently isn’t that incredible!! To go from princess dresses to hospital gowns is just plain cruel, and if you’ve known any of these kids you know it’s sick. You make it better for them as much as possible of course. There’s things some kids have and some don’t some things some kids can do and others can’t, and every kid is unique, no matter the cag the age the dates they’re all going to present differently. I know that no matter where I am they are somewhere going through this disease also. There’s a little girl Megan who raised money for the research in Cali and in the process managed to more kids with this Herbies!! Herbie is a very special stuffed animal i’m blessed to have gotten one!! He’s a hedgehog ok, but he’s much more then that. He’s a connection to other kids knowing we’re not alone, he’s a fun guy to play with mine tends to keep taking all my candy though, he loves chocolate and smarties! It might not make as much sense to you as it does to me or the other families, but he’s incredible, he’s hopeful Megansherbies4jhd. They’re kids with jhd riding camels and swimming with dolphins, there’s kids who go to give kids the world village and run and play at parks and in the village that’s pure magic. They make friends with the staff sing on stage they meet their favorite characters and just be kids. Even there they’re brave though can you imagine how much work it is for a little kid in a sick body to do all of these things? They’re amazing!! and so is everyone who makes it possible!! There’s a girl named Rachel S she is Mrs. Rachel Styles’ she married Harry from One Direction, it’s a true story at the young age before becoming an angel in heaven at 17 years old. Kathleen just wanted to be a Princess when she grew up how cute is that, she had to say goodbye to her Mom who passed away from jhd at age 24, after a bit Kathleen then went to go be with her Mom from this monster at 9 years old. Can you imagine watching your Mom go through it, seeing her pass away and still having the heart and bravery to live life and remember her Mom until she went to be with her. The younger they are it seems the sooner they die. It’s a genetic progressive painful brain disease, that probably killed a parent of theirs and is now in them as a child form. They lose their abilities to do everything especially things they really love, but they do all they can. When they say they can’t they mean it. When they say they can truthfully let them try. When someone else says they can or can’t tell them to go away. Only they know what they can do and their constant usually parent knows most of what they can too. I’d tell you all about how incredible these kids are but there’s not that much room and there’s so many you should know more about. These are just some examples of superheroes. Like Super Terry who does have a real comic of him kicking out jhd in a comic form, he loved wearing his super hero stuff, even in hospital beds he had the muscles to show you. He passed away from this monster at 17 years old. I may have it but i’m still and will always be Team JHDKIDS. When blowing out a birthday candle is all they can try to handle, i can almost guarantee they’ll try their hardest and fullest at just that one candle. They deserve more then up to even 15 years after symptoms show. There was a little boy who died at age 4. Most don’t make it very far and they’re just kids.

jhdkids.com

https://www.facebook.com/curejhdkids/

https://www.youtube.com/curejhd

My Superheroes