People with epilepsy react to 1950s epilepsy video - How have attitudes changed?
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- Опубліковано 20 сер 2024
- For Epilepsy Action's 70th anniversary, we asked some of our supporters to give their honest reactions to a video about epilepsy from the 1950s. Reflecting on what they think has changed between then and now and what they want for the future for people with epilepsy.
It’s clear that our work is just as important now as it ever was. We continue to strive to make sure that everybody affected by epilepsy is able to live a full, safe and happy life.
Sadly, most of the things are still the same, especially in the rural areas. But the biggest change is people have started talking about it openly. 💜
Not much has changed.
Some, but not attitudes.
I still hide it after 50 years.
It takes years sometimes, before I tell a new friend.
I just find it frustrating that it generally isn't recognized as a "real" disability, even though it impacts nearly every area of your life.
The medication typically causes memory loss and lowers bone density. The latter point being particularly problematic, as any big seizures can cause serious injuries such as spinal fractures.
I for one have battled with JME Epilepsy since I was 15. Myoclonic jerks were just disregarded by family as clumsiness and even when a diagnosis was made, it was basically a shoulder shrug response.
There absolutely needs to be more support for us out there.
I have grand mall nocturnal epilepsy for nearly 40 years on diagnosis, took six months poked, prodded, and tested, and given all different kinds of drugs which have changed over the years until they found the perfect combination. Teg-Pheb-vitamin D & more
I had to take vitamin D supplements for my bones due to the drugs memory loss is another side-effect. Every company I told I’d had epilepsy I was removed.
My last employee big retailer on the High Street never told them and one day I thought it would be good to let them know I was removed.
Every time I go to a new surgery when I move home they asked me do I have an epilepsy nurse, I say nope they look at me in horror surgery say that they get on it. Then come back to me saying there is none in the area, Sorry.
Stigma is still there with friends or work colleagues. My friends have gone now, I tend to stay in now on my own still have issues doctors providing generic drugs 😩 I could go on all day but will stop.
That girl said it perfectly
I've had grand mal and petite mal for 32 years but It pushes you because you remember how your family treated you school and work too more then how others viewed you even in dark
Got diagnosed at age 10 in 1970, and Doctors convinced my Parents to have me sexually fixed, so I don't pass it on to anyone else. Public Safety was everywhere! I wasn't allowed to attend my High School Graduation in 1982 for the Safety and Well Being of others. Then I got classed "Unemployable", put on Disability Income for Life, and sent to live in a Home for people with disabilities.
Holy SHIT!!! That is terrible! I hope you are able to get through that trauma now, no one deserves to go through that
This is a great video. As much as I 'moan' about having the condition, I'm 'lucky' to have been diagnosed in 1991 and not 1951, at least I'm not treated like a second (or even a third) class citizen. 💪💜
Or even in the middle age, were we could've been burned, damn
This is such a good video! I think it’s sad though that our hopes for the future never seem to change because nothing changes - as in people being more educated, DWP being more medically educated on how unique our condition is, employers being more accommodating, etc etc.
I was diagnosed fifty years ago. Only med available then was phenobarbitol - effects as some say today - 'enough to fell a horse'. The damage was huge. I failed my university finals -to start - and then lost further studies and job plans gone. I lost friends. It was a very lonely time. Offered a back office job in the City - shovelling paper - but that by accident opened doors because of finance experience....and I ended up in IBM. Attitudes of others - ride it out. Story - you lose - and you can win. Keep at it. It's the determination that counts. The more you have to try - the better you can become.
Thank you for sharing your epilepsy journey with us.
I think everyone should get taught about epilepsy and other disabilities during school before starting on a job people apply for TAFE and uni no matter wat the job is or wat corse they are studying
@Kurt Bowser I’ve had tests in my teens to see if I could get the surgery but too risky 😔
Good god! I was diagnosed with epilepsy at 17 y/o, I'm 45. Sterilization of epileptics in America stopped in 1973. Not much changed but science
I feel as though sometimes i don't have the right to say I am disabled due to the fact that I know people with more severe disabilities have it worse than I do with me just focal epilepsy. Know it might be bit stupid but still. xxx
My epilepsy caused me the most trouble in high school. The staff there were too lazy than to do anything that could help. If anything the staff made it more difficult for me
These days there is much more understanding about epilepsy. I think that people are more accepting of the condition and they less willing to put down such a person. Yes there are still those people who don't understand the condition and put down the affected person. They need to realize that it can be quite difficult to live with epilepsy. The best thing for these people to do is to have at least some sympathy and even better to provide these people with encoruagement.
You know we can still go outside, enjoy life, play football, swim, take hikes, and a lot of things, do not go swimming alone tho, it's dangerous..
Just remember to be aware of any weird feeling or numbness in the arm and all things that warns you that a seizure might be happening soon..
1957, Phenobarbital would have been about only drug available then. Nasty stuff, almost impossible to wean off it even if seizures stop.
In my country there aren't any laws that denies the driving permit/license of you have a recent seizure, thanks god, i think countries need to change or loose a bit the restrictions, cause it can be very limitating to many people, and affect their lives.
Great video 👍
Great strides have been made in the understanding of epilepsy for
epileptics but not enough to the majority of population who dont have the problem ( or dont show it ).
I was diagnosed at age of 8 in 1966.
My education, social life, work and career, reationships and family life have all been affected .
But was it the epilepsy that caused the problem ?
Do you have Seizures or is it just Epilepsy?
I had my Seizure Tumor surgically removed when I was 8.
Honestly, i have epilepsy and this video was pretty accurate, it also wasn’t as bad as i thought it would be. I was expecting some exorcism thing. Ha
i think things have got worse since 1957. hospitals just don't care and say you are faking or that it is due to your mental health as it is easier to say it is all down to mental health than listen to an EEG that shows epilepsy. although there is the disability act, it is a law for us and people follow it unwillingly. it hurts me so much that if this is how little change we have made in 70 years (to which i cant decide if that small amount of change has gone back or forth) i feel so sorry for all the newly diagnosed people with epilepsy, and please God help them for getting the right support, diagnosis and medication for the condition, as it has taken me 9 years and even still i am fighting for doctors to take me seriously and that i am not faking or some stupid young adult on drugs and alcohol.
A lot has changed since that time, I'm not sure what kind of small world you are living in. Medication, science, healthcare and technology for epilepsy has vastly improved from that time. Also people with epilepsy are no longer automaticaly looked down oppon or seen as being some kind of mentally disabled person who can't handle a simple job. I've had grand mal (tonic-clonic) seizures since I was 14 and I'm 34 now. In that time research has come a long way itself in creating vastly enhanced viewing of the brain by using the enhanced computer technology that grows each day. Testing such as the EEG, MRI, CT, SEEG, etc, etc, etc. Not to mention the ability for implants such as the VNS and RNS. With brain surgery it's been drastically improved with the ability to awaken people during it and ask them questions while shocking sertain areas of the brain to determine what motor skill is affected by that area. There is also injection of radioactive dye into the blood that helps locate areas in the brain for scars. In the past they had to drain your spinal tap and insert air into it, sometimes that could cause extreme pain!
Frankly I could go on and write an essay 15 pages long (without getting into detail) about the improvements there has been both in science and socially in everyday life for us with epilepsy. But I won't, it is like comparing the technology we have now and what we know about the world now vs what we had and knew back 70 years ago. There is a difference, you just don't seem to realize what it was actually like back then.
I hate to say this but what you are going through is your issue, but that isn't the same for everyone. Not everyone with epilepsy now adays has problems with the doctors believing in them having seizures/epilepsy. Me, wasn't a problem for the fact mine are grand mal and are obvious. Medication didn't work for me and so I had many of them a week. When I was 15 I had brain surgery, but even that didn't stop them. I later had a VNS implant but that didn't work so it got taken out. I'm currently on 4 different seizure medications but I still have about atleast 10 auras a week, 2-3 petit mal a week, and 1-2 tonic-clonic a month. Honestly I have really always loved the majority of my doctors, and the people in the different hospitals I've been in seem to be relatively friendly and care about me.
@@dmraven yes there is alot more research but where I live it is dreadful. Everyone is told that they have NEAD and that is is all mental health. I know people that have almost died as of drs just saying it's drugs or mental health. I completely acknowledge you post but not all experiences are the same and in the area that I live it is shunned upon by the NHS. And sadly the NHS is not universal all over the country it varies considerably in different departments and views.
@@tayagreen7517 I'm sorry to hear what you have to experience and go through with the Dr's in your area where you live. That is unfair and definitely not right, I would definitely find another Dr and have them evaluate you. Even a different hospital all together.
My statement was pointing to global or world wide research. You yourself are just stating one area (where you live). The person above stated "i believe things have got worse since 1957." Now that is literally false. If you have spent some good time doing some decent research on epilepsy and compared 1957 - 2022 (65 years) you will find a large vast well improvement to the scientific discovery, treatment and research towards epilepsy and how to be around people with it. As well as those with it to live a more normal life and feel less struggling.
That was my point. There is no doubt that in some places around the world (even in 1st world countries like the USA, UK, Canada, etc, etc, etc) some people still think wild things like seizures are being possessed by demons, or medication for epilepsy will never work, or the Dr may just for some odd reason not believe in doing tests, or the Dr may not believe in new changes, or the Dr may just be wrong or even crazy...
Sometimes a bunch of people who believe in one scientific or/and religious belief tend to form together and create a group. At times some small areas may also come together and just believe in things. These things can happen and in turn can cause the local area to believe (including the medical Drs) crazy things and not follow logical conclusions. However this is not a large part of the world. If you go to most hospitals you will not find one that has what they had 65 years ago, the technology, knowledge, equipment, tests or way of thinking.
Imagine being an African-American in the USA in 1957 with epilepsy... or some other minority (and no I'm not African-American). Racism was very different back then as well, so was treating people with epilepsy. Back then having epilepsy was looked down upon by many more, like being mentally ill, not being able to get any jobs even if you had it under control. Now, there still is some ill will toward it, but it is less, and people know of it vastly more. The internet is world wide, epilepsy and its different kinds are shown and tought around the world. Overall it's something far less shameful to have, and much easier to be treated (especially with new medications, and types of new technologies that have come out to look in our body).
Again I was simply replying to the persons first statement "i think things have got worse since 1957." I don't doubt that it may have happened at all, that people or even Dr's claim real seizures or epileptic people are not real, but, I doubt that is a normal thing that happens on a everyday basis today.
@@dmraven I'm glad for you! But when your seizures are hard to catch on an EEG as well, then the doctors are clueless.
@@dmravenmy daughter is also refractory, 5 different meds and also had VNS surgery 6 months ago. The VNS was working great at first, but lately we haven't been able to stop her seizures with the magnet. She went 2 whole months without having a seizure once the VNS was at standard dose, however she is back to having seizures about 10 days apart, sometimes she will have two seizures back to back. But, we keep hoping for something to work. We have found there to be so much more support nowadays. I had a friend at high school who had (still has) epilepsy, and she has told me there is a big difference in technology compared to back then. She didn't even know what VNS was until I told her my daughter was getting one. My friend unfortunately, isn't a candidate for the VNS. My friends EEGS were done at hospital, and the 7 day EEGs were also done at a hospital. My daughter has her 7 day EEGs done at home. My friend was amazed and said there was no such thing as that back when she was diagnosed. So, you are correct, technology has definitely gotten better nowadays
Well maybe, but i doubt it !
It was more likely the medication i had to take to control it !
A cocktail of Phenytoin, and Pheonabarbatone would knock a horse out.
And i had to live a normal life with that lot inside me ! By the way, it also made me sterile according to a top consultant.
So take care, its not the epilepsy causing the trouble, its the medication !!
Can u please talk absence seizure
I have them
Spoon poked in mouth = broken teeth.
Great video.
I was born with my epilepsy I've never met someone else who was born with theres as well
I ,too, was born with epilepsy. So I don't know what it's like to not live this way.
I was born with my epilepsy as well.
I was born with it and have a refractory epilepsy.
Lots are born that way, it’s just that until seizures become a problem they won’t do EEG and diagnose epilepsy. On the the other end of spectrum I have a few friends who are epileptic and have never had a seizure… weird eh?
Myself diagnosed at age three but Doctor reckon it was always there. With temporal lobe seizures on a toddler it would just look like they were day dreaming.
Where can I find this video , I want to learn more about Epilepsy,I have Mild Epilepsy since I was a kid,The Doctor said it’s Inborn. Now I’m 31 no more seizures but I still take my medications.
call / WhatsApp +22965212243 for effective and definitive treatment until total healing 100% natural
What is the medication called ?
I have had epilepsy since I was 4 years old as well as mild cerebral palsy.
I’m gonna react too I have epilepsy
#DrObahistoricalherbs
What a shocking reflection of opinions in 1957