For all of my Epilepsy Warriors, if you haven’t seen Incredibles 2, you may want to wait and see it at home, in a well lit room. While I LOVED the movie, I’m really disappointed that @pixar
did not think about seizure disorders when creating this movie. Not only did they put in several potentially seizure triggering scenes, they issued NO warnings before the movie, with the movie trailers or releases, before the scenes...NOTHING. [I will say - our awesome theater, @amctheatres
DID have signs up, but we didn’t notice them until after we mortgaged our home for our family of 4’s movie tickets. 😬] I’m very thankful that my Micah did not have a seizure 🙌🏼, however it did affect me and I’m still feeling the effects today!! 😩
Again, if you have epilepsy or any type of seizure disorder, please take precautions and be safe seeing this movie!! 💜
#epilepsy #epilepsywarrior #seizuredisorder #strobelights #disneypixar #incredibles2 @disney @theincredibles @epilepsyfdn @epilepsysociety @epilepsy.talk @epilepsyaction @epilepsysociety @epilepsy_sf @epilepsypositivity @epilepsy_association
June 18th - #BlivingwithCDKL5
Seizures. One of the biggest problems with CDKL5 is seizure control. Some get seizure freedom and some never do. Some go thru a "honeymoon phase" of no seizures, but they eventually return. I wish I could say there is one medication that helps and that all the kids react well too but unfortunately that's not the case. Some work really well for one child while that same medication can make seizures worse for another child. CBD? Yes. We would love to add THC to help sleep at night but no pediatrician will sign off to legally allow us to use it :-( All night Brooklynn was awake and happy, all morning she's been happy. Then a damn seizure hits and she screamed afterwards for a good hour before calming down and now taking a rest. #seizuressuck
I can take the developmental delay, the non verbal and even the CVI along with the not walking or self feeding. But these seizures, I wish I never had to see another one again!! #CDKL5 #CP #CVI #epilepsy #corticalvisualimpairment #cerebalpalsy
There are no photos of me during my talk with my mouth closed - so much to say with so little time. Hoping to change the world one person at a time. 1 in 100 people has epilepsy. A ketogenic Diet is not for everybody but it should be included in the options for managing seizures right from the very first diagnosis. Share this post and you never know who it will benefit. Most of us only come to this way of eating when we are out of options, scared and suffering. I want to change the world so it doesn’t have to be that way anymore. #foodismedicine
reach out to me at www.ketoalldayeveryday.com
To learn more about ketogenic diets for therapeutic uses.
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Start off by doing the small things in life, making your bed or putting the shopping cart back. I promise you will feel accomplished when those small tasks are completed.
What are some of your small task that help you feel accomplished?
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Joshua had his appointment with his Pediatrician today. His results come back from his EEG too have Absence seizures and Myoclonic seizures as well. There's no doubt about him definitely having epilepsy. He's now been referred too a neurologist for further testing either a MRI scan or blood test. He's now trying out some medication twice a day, to see if that works for him - Epilim too calm his brain & hopefully stop the seizures. Obviously comes with bad side effects (Loose hair, thin his hair, liver problems, bruises, drowsiness) If not, he'll have to try a different one. Epilepsy does cause behavioural problems, this is why he is abit 'Wild or a stresshead' not his fault he's like this. I'll definitely be going above and beyond too help him but that doesn't stop the constant worrying !!!!!! #Epilepsy #EpilepsyAwareness #AbsenceSeizures #Myoclonic #Seizure #Epilim #MummysBoy #LittleSoldier
Going to see #TheIncredibles2
with your family? You may want to read this. Theaters across the country are warning moviegoers seeing "Incredibles 2" about possible adverse health effects related to the flashing lights used in the film. #Disney
warned the movie contains a sequence of flashing lights, which may affect customers who are susceptible to photosensitive #epilepsy
. (Photo: @DLJGameReviews
Meltdowns happen even on vacation. Autism doesn’t take a break. (Seizures don’t either unfortunately). That’s why it’s so important that I travel everywhere with my boy, so I can help him through it. ❤️💛💚💙 #meltdown #diffused
Incredibles 2 Warning:
(Not a Spoiler)
The main villain uses a strobe light effect to get people to do their bidding. The effect is used multiple times, sometimes without warning, and one time is used 90 seconds straight. If you or someone you know suffers from a condition that would be set off, such as epilepsy, migraines, PTSD, or other neurological/psychological conditions, please share this heads up!
I know how highly anticipated this film is and how excited pretty much everyone is for it. I just want to make sure people go in aware. I have an article with more details without spoiling anything in the movie below.
#incredibles #incredibles2 #warning #disney #pixar #movie #strobe #strobelights #epilepsy #anxiety #migraine #ptsd #mentalillness #neurology #sensitive #awareness #nospoilers #staysafe
Think “Peace of Mind” learn to meditate and practice everyday!
6 MONTHS AGO I passed my driving test. 6 months of loving every second of getting in a car and finally having my independence. Finally being able to take my boys on adventures. I don’t think I will ever take this for granted. 6 months down the line and I still feel giddy when I get behind the wheel. I’ve had epilepsy for 33 years now and I’ve never let it stop me doing anything.... and now this..... a very long wait but worth every second #epilepsy #epilepsyawareness #epilepsywarrior #independence #goodthingswillcome
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To most people, this probably just looks like a small notebook that one may keep in a purse, but to me it is so much more. You see, what's written inside is what shoved me into being an artist. On November 29, 2008 one of my four year old twins had a seizure in the middle of the night. Subsequent testing revealed that he had Benign Rolandic Epilepsy, basically meaning his seizures were induced by sleep. I started this journal to record the date, duration, and description of each seizure. We were told that if he went a year without a seizure then he had probably "grown out" of them and wouldn't have any more. This journal sat unused for nearly 2 years. I thought we were good to go and then he had 2 seizures in one night and then had a total of 27 seizures over the next 3 years (all at night, while he was sleeping). So, in this little journal are the descriptions of the 28 seizures that we knew about. I handled his diagnosis well to begin with, but then having the seizures come back with a vengeance after nearly 2 years being seizure free, I crashed. I was pregnant with our 3rd child and could not sleep at night for fear of waking up to my son having a seizure. I felt this overwhelming desire to paint (I had only dabbled in it before). I found that I HAD to paint. I painted late at night, until 2 or 3 in the morning, until I was so tired that I could actually fall asleep. So my son's epilepsy literally shoved me into being an artist. It was my coping mechanism. But I'm happy to report that as of June 13, 2018 my son has been seizure free for 5 YEARS! And what is left? An artist, created from pain, worry, and helplessness. The journey has been so difficult, but I cannot regret it.
#saraaycockart #epilepsy #benignrolandicepilepsy #seizurefree #momsworry #idahoartist #boiseartist #createfrompain #itmademewhoiam
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Here's some MOTIVATION for you
I was sick and tired of starting over on Monday's and almost 3 years ago decided to commit to a workout program and and daily shake. Has it been easy? No! But it has been soooo worth it!! I haven’t only lost weight and a crazy amount of inches, but GAINED my life back👐👐 Are you sick and tired of BEING sick and tired? Are you ready to STOP starting over every Monday? Are you ready to put YOU and your health first? Then keeping ready 👇👇 My group will start Monday with a prep week so we are setting you up for SUCCESS👐👐 It's the PERFECT time to get back on track and before swim suit weather is upon us.
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Went in this morning to get kiddo up for school... got a different wake up call instead. She was already seizing when I went in. We quickly administered her rescue and dialed 911. By the time the ambulance got there, she had been seizing for 16+ minutes.
3 medications, several doses, and nearly 3 hours later, she's finally responding to the medication. She seized over the whole course of those 3 hours, calming down only to seize up again. We dont know why she seized, usually these ones come when she is sick but she has no fever or signs of illness. And she is never this resistant to medications.
Waiting to be moved to a hospital room. She is finally stable but under the circumstances they arent sending her home. One more seizure sends her to ICU. At this point she's had enough medications we are starting to be concerned about her airway, but so far she is maintaining oxygen levels with mask support. #specialneeds #epilepsy #seizures
I’m not sure what I’m doing with this account. I just wanted to share these to hopefully help. Though I’m extremely late for both so probably won’t be much help for anyone.
We love this heartwarming quote from Superman. What makes a person super is the kindness of their heart. Tell us about the Superman in your life in the comments.
Several studies have already been done on cannabis and its effects on even the most intractable pain. It can control neuropathic pain caused by diseases of the peripheral nervous system, and it can also relieve intractable pain caused by cancer. Medical cannabis therapy is also effective for pain caused by chronic inflammation such as rheumatoid arthritisand Crohn’s Disease.
I’ve found my how, have you found your how? Ask me and I can help you.