Interview #1: Janice Coffey (Focal Onset Aware Seizures)

  Рет қаралды 31,886

The UD Project

The UD Project

6 жыл бұрын

Hear about how life is affected by focal onset aware seizures, also known as simple partial seizures, due to scar tissue from a removed meningioma - a noncancerous tumor on the meninges surrounding the brain.
Janice's Profile: universaldesign.org/who/janic...

Пікірлер: 74
@irpacynot
@irpacynot 3 жыл бұрын
I'm in tears now watching this. There are some minor differences in the symptoms she experiences from my own, but her descriptions, in most ways, so perfectly match my own. I am still continuing my treatment (surgery was not possible for me due to the location of my cancer -- intertwined with delicate vessels, etc.), but it seems to be going well. Thank you both for speaking about this. Thank you so very much.
@BornTrespasser
@BornTrespasser 12 күн бұрын
I've always had this "blank stare, etc. condition", but I'm just now learning about it after recently developing full tonic clonic seizures. What I have is Uncus Temporal Lobe Epilepsy. Now, I'm very much dependent on other people to take care of me. I live in a rural area where nothing can be done without a car. This video is so helpful for me 😢❤ Thank you very much!
@Kristinetamano
@Kristinetamano 2 жыл бұрын
What a great video that shows and describes what focal impaired awareness seizures look like. God bless your mom, and you're a wonderful daughter.
@VSBHRhianna
@VSBHRhianna 3 жыл бұрын
Thank you for sharing! This information is every helpful in understanding how we are affected but these Focal Seizures
@vivianfarrales8479
@vivianfarrales8479 2 жыл бұрын
Oh God! I can't help but to cry, bec that's what really happens . I am in the same situations that first my family didn't understand. I had to explain it to them the way your mom explain it.
@melody_burg
@melody_burg 3 жыл бұрын
Thank you for making this video! I've been going through all the same things and I'm going to go to the doctor now and get everything checked out
@tenacioustonya9639
@tenacioustonya9639 3 жыл бұрын
Bravo to both of you! This video is Powerful! I came across this video ( three years after original publishing) while researching for the greater good of people with Epilepsy. I look forward to hearing more from you. Keep Thriving!
@fraudisacrime
@fraudisacrime 2 жыл бұрын
Thank you for this video and I pray your life gets easier for you . You have a very sweet daughter .
@faithworks4633
@faithworks4633 Жыл бұрын
I'm not alone in this :') (((hugs))) thank you sincerely so much for sharing this! The description of the slideshows I've always tried explaining to people & they never understood ... I have scar tissue as well frontal, temporal lobe... diagnosed with epilepsy after having a few full blown seizures as baby & child then later on diagnosed with focal motor seizure disorder. I've never heard anyone describe the exact same symptoms.. the lights also... People must assume I enjoy being in the dark all the time.... the 20-30 sec staring spells.. I've felt very alone and confused until I watched this video. I have spent 30 something years trying to understand why these things are happening and u've explained it all. Things people don't understand. Thank you sincerely. I admire your strength. ((Hugs))
@poerava
@poerava 2 жыл бұрын
Thanks for posting this vid. It was very useful. The interviewer has a stunning presence and warmth.
@mckenziehartman5804
@mckenziehartman5804 3 жыл бұрын
Thank you for this video. Very educational. Brought me to tears because I experience some of the same things.
@jeniclancy3898
@jeniclancy3898 Жыл бұрын
I hear music a lot. When this started in my early 30’s, I’m now 53, I thought someone in the house or next door was listening to music and I was hearing it, but I go look to see where it was coming from and I couldn’t. That’s when I realized I was hearing things…it scared me so much I couldn’t tell anyone for a while since I was afraid of hearing what they said it was.
@melissayoung8917
@melissayoung8917 2 жыл бұрын
I can so relate to Janice. I had a stroke in 2014. I have no memory of at all of anything of 2014 & have no memory of half of 2015. Then in late 2015 strange things started to happen. When Janice spoke about having times when she knows when someone would be speaking and not Abel to process it. I was at the grocery store one time and I knew what I wanted but could reach and pick it up. I didn’t tall anyone not even my family because they might be losing my mind. I actually crashed my car and I don’t where I had been before the accident. Thankfully no was inured. Thankfully and was when I was Abel to drive. My husband said to me that I get a glaze over my face and I’m not there. I appeared to be somewhere else and I would only sAnd over over. I have a lot of hallucinations. It is hard because you appear normal. Well I could go on and on. I was diagnosed with partial epilepsy in 2017. I really liked this video because sometimes I will tell my family that they can’t understand how it’s for me to deal with it. I suppose I feel lonely. So thank you so much for this video.
@jeniclancy3898
@jeniclancy3898 Жыл бұрын
@MY Your not alone. I feel lonely all the time…even in a room full of people or alone with my husband or BFF. It’s hard when no one understands what you’re feeling. Especially when mine went on for YEARS and none of the doctors could explain what was happening to me. When they FINALLY told me I was having Temporal Lobe Epilepsy I thought I’d cry from not only having a name for these feelings, but after years of being told they couldn’t find anything they actually had found something was such a relief because sometimes it felt like I was going crazy when these feelings are n my head overwhelm everything in my life yet every single doctor would say “nope, everything is normal.”
@robbiebobbie9508
@robbiebobbie9508 Жыл бұрын
Thank you so much for making this video. Sadly I know exactly what your talking about. Good on you for doing this to help others understand what their going through. I had my first seizure when I was 38 and it was roughly 4weeks after starting to suffer these symptoms
@AtomicNewsTV-USA
@AtomicNewsTV-USA 2 жыл бұрын
Thank you for this video. I was just diognosed with the same seizures at 46. I thought that was just me as I got older but it began post occipital nerve surgery. I had no idea anything was wrong until now
@amanda4of6
@amanda4of6 4 ай бұрын
Still waiting on my EEG that I just got scheduled, but I relate so much to this. Everything she's describing is so familiar. I feel so seen.
@jinkyaleluya33
@jinkyaleluya33 3 жыл бұрын
Me . focal and partial epilepsy.every time trigger my epilepsy I'm aware.alert.ready. and I heard it.all person inside me.and I can see but sometimes Im not Carry to control my self to trigger my epilepsy but I know what's happening .to me because my brain is already opened to the situation . always .more more . something that the sign for my self ..like smells.and .color .and sound and something .not feeling well. and etc . But I don't have nervous because the nervous are more given to your to more going the push electric inside the whole .body The most important is .calm down .relax.and dont panic..and my epilepsy almost 17 years old.and now Im still survive.thanks god for your guiding me on my situation .everyday.and to all my family.😊🙂❤️❤️🙏🙏🙏🤲🤲🤝🤝☝️☝️
@babylopez8979
@babylopez8979 3 жыл бұрын
Thank you for the information. God is good and I I wear a partial seizure bracelet where ever I go. I can drive and carry a whistle. My son and I use"what's up" on phones in case I'm not sure where I'm at. I put my location on my phone. He can identify my location, because I'm not able to speak. These preparations might be helpful. I was also offered a dog if I wanted one. I'm a veteran and I might consider. God bless you in the name of Jesus.
@SuperButterfly217
@SuperButterfly217 2 жыл бұрын
This video is so helpful!
@stoneyshow
@stoneyshow Жыл бұрын
Good video. These focal seizures have been a little bit different for me gave me something called postictal psychosis as well and when I have one of these events I go a little bit crazy. Has gotten me in trouble with the law and DCF which are both getting dropped because of the medical condition but it has completely uplifted my life. It just randomly decided to happen to me in 2020
@fallonhunter7239
@fallonhunter7239 10 ай бұрын
This is what happy to me
@RealexcelEpilepsyPortal
@RealexcelEpilepsyPortal 6 жыл бұрын
This is a great video. Thank you for sharing your story. Btw, Mom is very smart by having someone with her all the time. I wish more people realized this is the kind of change that should occur in their life for their own safety reasons. Documenting your seizures is also a great practice. Lots of love to both of you
@theUDproject
@theUDproject 6 жыл бұрын
Thanks for your note! This was the first time she had ever seen herself having a seizure so it was interesting for me to get it on video and for her to verbalize later what she was feeling internally while watching herself. Thanks for your note and for watching!
@samanthalambert323
@samanthalambert323 2 жыл бұрын
Not everyone has someone to be with them constantly. She’s very lucky.
@kelviannaepperson3677
@kelviannaepperson3677 2 жыл бұрын
This happens to me and I wasn't aware that it is a seizure and I have motor focal seizures in my legs. I have cerebral palsy
@fraudisacrime
@fraudisacrime 2 жыл бұрын
I would love to hear you sing .
@incognitonegress3453
@incognitonegress3453 2 жыл бұрын
I do this n they keep tryna pretend they dont know whats going on. Makes me so sick! But thank u 4 this!!!
@leona9876
@leona9876 Жыл бұрын
mine didn't happen from a tumor.. mine was 2 traumatic brain injuries... I have pretty much have the same episodes as she goes through and have had to change or do things differently same as she has had to do in her life as well
@gabrielpadilla7839
@gabrielpadilla7839 Жыл бұрын
i have a right hemisphere TBI and sometimes Tithe left side of my body feels like its unparalyzed and so i try to articulate but doing so starts horrific seizures; i can feel my left side trying to move, yet the very will power i use sort of rebounds and cause the shaking and trembling to get worsen so in response i try to relax and stop moving my left side, but again, that willpower rebounds and makes the seizure worse.. at this point I'm usually in an ambulance and i focus intently on how I'm moving my right side. i feel panicky; the seizures suffocate me sometimes and i feel like I'm dying yet focusing on my right side seems to help prevent another episode...
@ramprasadpokhrel9895
@ramprasadpokhrel9895 3 жыл бұрын
Im suffering from a kind of seizure since 7/8 year more , I had been diagnosed Calciofied granuloma at temporal lobe region , and Mesial temporal scelorosis through MRI SCAN, Now I'm taking medication name clobazam and this medicine didn't able to control my problem and later I started take Divalproex but same didn't able to control my problem, and then started taking Lacosamide but this also not able to control my problem, I feels suddenly discomfort at head and too much difficulty all over the body too much discomfort till 20 second to last 50 second and after then I feels normal. During that time I always in normal condition everything can sense normally my surround environment and can talk with anyone normally and do everything, only too much difficulty and discomfort which is out of tolerate and I feels relief after 20 to 50 second later and becomes normal, I feels such types of difficulty daily 1/2 times or more repeat and some time 2/3 days gap and 1/2 attack. Some time condition repeat so much more than 50 per day , Really bothering EEG test only can detect during that attack of 20 to 50 second other time not able ti detect and always show normal EEG , I haven't been unconscious never and can feel everything normal during attack. Really don't know which medicine can control this types seizure.
@rosalindabloodflowers7909
@rosalindabloodflowers7909 2 жыл бұрын
I've been having symptoms and the Dr. said take a Tylenol.
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I had problem seizure about falling and husband and son help get me up
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I need take care of myself and son and husband also
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Husband and son does take pills and do same thing to
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Elipsery seizure and mind shut down and can't wake up and go to hospital
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I have disability for long time ago and from Georgia
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Don't be afraid to ask questions about me and know them
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Problem seeing and eyes 👀 get take care of and went doctor and can have upstairs and downstairs be careful with them because fall
@MsCherylB183
@MsCherylB183 4 жыл бұрын
Is a complex partial and a simple partial the same thing?
@psychopat4402
@psychopat4402 2 жыл бұрын
Probably already learned but I can’t resist. No they’re not. Simple partial means no loss of consciousness, memory, or awareness, a complex partial means there is a loss of consciousness, memory or awareness, or maybe 2 or all 3.
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Take me time what said
@natalie__lu2500
@natalie__lu2500 3 жыл бұрын
I am coming on here because I deal with confusion , and imbalanced and feelings of wanting to throw up and not breathing properly and swallowing
@chilipepper71
@chilipepper71 2 жыл бұрын
You should talk to a neurologist if u have not by now.
@sashascarlet6651
@sashascarlet6651 2 жыл бұрын
Do u know tnataha Coffey or mark Coffey Isabel Coffey
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I husband and son has disability also
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I have three more other seizure but doctor know them
@poohbear0320
@poohbear0320 2 жыл бұрын
do you still interview people? I would love to be interviewed.
@theUDproject
@theUDproject 2 жыл бұрын
Hey Courtney! We do, but primarily for our podcast (Good Fit Poor Fit) these days. Shoot an email to sarah@universaldesign.org with your idea(s) and we'll go from there. Thanks!
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I like walking and exercise
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Problem seeing and eyes 👀 get take care of
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I have friends and family members and transportation
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I like talk people
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I can't go work at all and drive
@Spicynoodle2.0
@Spicynoodle2.0 Жыл бұрын
I know for a fact so many people pass away with brain tumors because the American medical system has failed them. I am only 25 and if something happens we know why!
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
We both take medicine and husband take medicine what he got
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
My pills that take have take at mourning and night
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Son has seizure to
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Grandma seizure I have go hospital also
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I watch animal and television
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Study god 🙏 words and go church and love 💕 shop and drive somewhere
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Bills and medicine and doctor appointment bills and food and things need for family and rent for trailer who pay for very important
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I seizure since was baby 🍼
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
Walking around husband together and son
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I watch god 🙏 show and movies
@lachellewade5552
@lachellewade5552 Жыл бұрын
I'll have mild seizures My name is Lachelle Wade
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I like eat and drink coffee ☕ and coke and juice and milk
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
I like read books about god 🙏
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
His seizure small not big but can't work at all and drive
@valsavoy4029
@valsavoy4029 Ай бұрын
M and s
@GenaJohns-kl2ib
@GenaJohns-kl2ib Ай бұрын
But don't give information out at all and don't give money 🤑 at all if don't be favor
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