Epilepsy Sparks

Epilepsy Sparks Follow

International organisation educating regarding #epilepsy and making people smile. ๐Ÿ’œ Neuros, Scientists & patients: guest-blog with us!๐Ÿ‘‡

http://www.epilepsysparks.com/blog

859 Followers  97 Follow

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You are! People coping with an invisible illness/condition like epilepsy are pretty amazing. ๐Ÿค—๐Ÿ™Œ๐Ÿฝ
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Give yourself credit every day for:
- Dealing with the AED (Anti Epileptic Drug) side-effects;๐Ÿ’Š๐Ÿ’Š
- Coping with any comorbidities* (additional illnesses);๐Ÿง ๐Ÿค•
- The after-effects of seizures (if you still have them); ๐Ÿค•๐Ÿฅด๐Ÿ˜ด
- The restrictions that you are held with;๐Ÿ˜ด๐Ÿ˜”๐Ÿ˜ฉ
- Not being defined in whole by your condition.๐Ÿ’ช๐Ÿป
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You are an amazing person. ๐Ÿ‘‘
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Thank you for:
- Making people smile; ๐Ÿ˜Š
- Making people laugh;๐Ÿ˜
- Being you;๐Ÿ‘๐Ÿพ
- Being positive on our page;๐Ÿ‘๐Ÿพ
- Giving everyone else realistic hope; ๐Ÿค—
- Not talking rubbish ๐Ÿ˜
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Reference: * Wikipedia-cormorbidities: https://en.m.wikipedia.org/wiki/Comorbidity
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Whether affected by epilepsy directly or indirectly, remember: you are amazing. ๐Ÿค—๐Ÿ’ช๐Ÿพ
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Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog
~
Turn on post notifications to never miss our posts! โ†—๏ธ Do share and tag us!๐Ÿ”–
๐Ÿ‘ฅTag a friend โฌ‡๏ธto show them this! 
Follow us on @epilepsysparks ๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น
~โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €
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#epilepsy #neurology #seizures
The holiday season can be one of those times where we want to spend time with families, to have fun, chill, and give as well as feel loved. ๐Ÿ’ž
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Thereโ€™s heaps of advertising about how great the holiday season supposedly is and how people spend time with their loved ones. ๐Ÿค—๐Ÿ’•
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But, not all of us are lucky to have this. Many people with epilepsy can be or feel very alone, particularly over the holiday period. ๐Ÿ˜”
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If you are going to be alone or you worry that you will FEEL alone (we can feel alone even with people around us!) this holiday season, make some plans to keep yourself busy and try and enjoy it ( that means plans beyond social media!! ๐Ÿ˜)!*
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Ideas:
- Arrange a Skype with a friend or two-maybe one from overseas that you e met on social media?!๐Ÿ’ป
- Write that book youโ€™ve always said that youโ€™ll would!๐Ÿ–‹
- Clean the house/apartment/room ๐Ÿงฝ
- Play/learn to play that instrument ๐ŸŽน๐ŸŽป๐ŸŽธ๐ŸŽบ๐ŸŽท
- Listen to relaxing music ๐ŸŽง
- Have a million movies/TV series lined up (Netflix anyone?!) ๐Ÿ“บ
- Read a book ๐Ÿ“š
- Try colouring-in books and even Lego (seriously therapeutic!) ๐Ÿ‘๐Ÿป๐ŸŽจ
- Do some puzzles (hey low-tech can be cool!)
- Do some cooking (if you are able) or having some nice food that you like ready ๐Ÿฅข๐Ÿฅก๐Ÿช๐Ÿณ๐Ÿ‘
- Play some  games ๐ŸŽฎ๐Ÿ•น
- Have a shot at one of those old hobbies your left behind years ago ๐Ÿ”ญ๐Ÿคน๐Ÿฝโ€โ™€๏ธ
- Have a go at knitting/embroidery ๐Ÿงถ
- So some gardening (if itโ€™s not winter in your country!) ๐ŸŒธ
- Keep company with/walking your pet(s) (if you have any) ๐Ÿถ๐Ÿฑ
- Go for a walk/run ๐Ÿšถ๐Ÿฟโ€โ™‚๏ธ๐Ÿƒ๐Ÿปโ€โ™€๏ธif possible -we know that some people have physical disabilities too); whether that be in the  snow or the warm sunshine! โ„๏ธโ˜€๏ธ
- Learning a new skill on the phone apps: ๐Ÿ“ฑ
โ€ข Udemy
โ€ข Coursera
โ€ข Skillshare
โ€ข Check out the Lumosity app for working your brain!
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Tell a close friend that you are feeling worried, depressed or/and anxious about this time of year. Ask if you can do a call with them. They might even invite you over! Oh maybe you can invite yourself over?! ๐Ÿ‘ญOr, cal The Samaritans at any time. ๐Ÿค—๐Ÿค—๐Ÿค—
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If you have any ideas for people feeling alone over the festive season, please share them with us below! โคต๏ธ
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Continued on first comment!! โคต๏ธ
The vast majority of doctors practices and pharmacies close over the holiday period (in the West anyway). How dare they?! ๐Ÿ˜โ €
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This means that we all have to prepare and ensure that we have enough medication to see us through to mid-January! ๐Ÿ’Š๐Ÿ“…โ €
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Running out of AEDs (Anti Epileptic Drugs) as well as any other drugs you take can be a nightmare. Seriously. Itโ€™s almost like an invitation for seizures... ๐Ÿง โšก๏ธโ €
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Get your pill-box/drawer/wherever you keep your drugs stocked to see you through until the doctors and pharmacies are open again. ๐Ÿ‘๐Ÿฝโ €
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We are running out of time... check your pills today if you havenโ€™t already. Actually, perhaps check them again just to make sure!! ๐Ÿ’Š๐Ÿ•๐Ÿ’Š๐Ÿ•โ €
~โ €
Whether affected by epilepsy directly or indirectly, remember: you are amazing. ๐Ÿค—๐Ÿ’ช๐Ÿพโ €
~โ €
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blogโ €
~โ €
Turn on post notifications to never miss our posts! โ†—๏ธ Do share and tag us!๐Ÿ”–โ €
๐Ÿ‘ฅTag a friend โฌ‡๏ธto show them this! โ €
Follow us on @epilepsysparks โ € โ €
๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”นโ €
~โ €โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €โ €
~โ €
#epilepsy #epilepsysparks
Who knows what their seizure threshold is? ๐Ÿค”
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Your seizure threshold is a bit like a stress/exhaustion/over-excited (sigh...) line; which, when you cross, can lead to seizures. ๐Ÿ˜ซ๐Ÿ˜ดโšก๏ธ๐Ÿง 
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Identifying your seizure threshold means that you recognise how far you can push yourself before you are likely to have a seizure. Please donโ€™t push yourself too far! ๐Ÿคฆ๐Ÿฝโ€โ™‚๏ธ
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E.g.s:
- Sleep: You do long hours at work and donโ€™t get enough sleep. ๐Ÿ˜ดOr the baby is crying ๐Ÿคฑ๐Ÿป; youโ€™re up for feeds and then you donโ€™t get enough sleep. ๐Ÿ˜ด Say that you normally need 9 hours sleep and you only get 4 as a result of the above. The lack of sleep could mean that you cross your seizure threshold and that you might have a seizure. ๐Ÿง โšก๏ธ
- Stress: say that you did have a steady job, ๐Ÿ‘ฉ๐Ÿผโ€๐Ÿ’ปbut got made redundant ๐Ÿ˜ซso you stress out way more than usual. Or that you have a new boss who is a bully/putting too much pressure on you. That excess stress could mean that you cross your seizure threshold and that you might have a seizure. ๐Ÿง โšก๏ธ
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Some psychotropic* drugs and antibiotics can also lower a personโ€™s seizure threshold. Hence itโ€™s always really important to disclose your AEDs to doctors. ๐Ÿ’Š๐Ÿ’Š
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There are unlimited scenarios, but hopefully you get what we are saying. ๐Ÿ˜€
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Here is a more professional way to describe your seizure threshold: โ€œThe term seizure threshold is used to describe the balance between excitatory and inhibitory forces in the brain which affect how susceptible a person is to seizures.โ€** ๐Ÿง โšก๏ธ๐Ÿง โšก๏ธ See first comment for more info!!!โคต๏ธ
Thereโ€™s a reason that Epileptologists specialise in epilepsy. In helping you and I!! ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ (Of course we are all rather wonderful darling!) ๐Ÿ˜โ €
~โ €
Please:โ €
- Name a Epileptologist or Neurologist that has provided you with amazing treatment for your epilepsy ๐ŸŒŸand (is you have any) guidance for related illnesses;โ €
- The hospital in which they treat you, and;โ €
- Why you love them!! โ €
~โ €
We have to give credit to the amazing ones out there!โ €
~โ €
Please donโ€™t mention any โ€œbadโ€ ones ๐Ÿคซ (they will be gutted for not having been mentioned haha!). โ €
~โ €
Yes there are some Epileptologists/Neurologists who are not good enough, hence we must really give credit to those who are great!!โ €
~โ €
Names & hospitals in comments below please!! โคต๏ธ We will then randomly select one and contact them to give them the fabulous feedback ๐Ÿ˜€ (we will keep you anonymous should you wish.). If youโ€™d prefer to message us with feedback directly then thatโ€™s ok too. ๐Ÿ‘๐Ÿปโ €
~โ €
PS you must not BE the wonderful Epileptologist ๐Ÿ˜‚ or be related to them! โ €
~โ €
Whether affected by epilepsy directly or indirectly, remember: you are amazing. ๐Ÿค—๐Ÿ’ช๐Ÿพโ €
~โ €
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blogโ €
~โ €
Turn on post notifications to never miss our posts! โ†—๏ธ Do share and tag us!๐Ÿ”–โ €
๐Ÿ‘ฅTag a friend โฌ‡๏ธto show them this! โ €
Follow us on @epilepsysparks โ € โ €
๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”นโ €
~โ €โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €โ €
~โ €
#epilepsy #epilepsysparks #neurologist #epileptologist
WHO Is An Epilepsy Expert?? ๐Ÿค” Check out the video by Derrick Kay, featuring Torie Robinson. 
Full link: https://youtu.be/UgL5rKjyh-c
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#epilepsy #epilepsyawareness
Our brains are amazing. They enable us to do so much. Hey; youโ€™re reading this...! ๐Ÿ˜Šโ €
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But, we can get more than a little โ€œirritatedโ€ by our brains too. They can feel amazingly โ€œLOTS OF RUDE WORDS!!โ€! ๐Ÿ˜‘๐Ÿง 
~โ €
The trouble with epilepsy is that it isnโ€™t โ€œjustโ€ a brain lesion, or โ€œjustโ€ a genetic issue, or โ€œjustโ€ seizures. ๐Ÿง 
~โ €
Epilepsy affects much more of our brain than โ€œjustโ€ the source of the seizures. Thereโ€™s the AEDs, the life restrictions and social, professional and personal impacts that can negatively affect our mood, sense of well-being, our choices in life, etc. ๐Ÿ˜”๐Ÿ’Š๐Ÿ’Šโšก๏ธ๐Ÿง ๐Ÿ˜”โ €
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The underactivity and/or overactivity of even just one part of our brain can affect the rest of it negatively. Which in due course affects other parts of our lives negatively. Hence....โ €
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...weโ€™d love to get rid of our epilepsy so we can appreciate the rest of our amazing brain! ๐Ÿฅด๐Ÿง โ €
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Sometimes we need reminding of how incredible we are. Youโ€™re here reading this. If youโ€™re frustrated with your brain-we get it. But you have already achieved so much. โ €
~โ €
Read our blog to see inspiring stories from other people affected by epilepsy. epilepsysparks.com/blogโ €
~โ €
Whether affected by epilepsy directly or indirectly, remember: you are amazing. ๐Ÿค—๐Ÿ’ช๐Ÿพโ €
~โ €
Turn on post notifications to never miss our posts! โ†—๏ธ Do share and tag us!๐Ÿ”–โ €
๐Ÿ‘ฅTag a friend โฌ‡๏ธto show them this! โ €
Follow us on @epilepsysparks โ € โ €
๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”นโ €
~โ €โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €โ €
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#epilepsy #neurology #seizures
We can get as frustrated as we like about the general publicโ€™s lack of understanding of epilepsy. But if we donโ€™t have some understanding of it ourselves then we are hypocrites. ๐Ÿ˜‘๐Ÿคฆ๐Ÿฟโ€โ™€๏ธ
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Research and medical discoveries continue to change professional understandings of epilepsy. We and epilepsy charities help convey these to you so you donโ€™t have to talk to your Epileptologist all of the time! ๐Ÿ‘จ๐Ÿฝโ€โš•๏ธ๐Ÿงฌ๐Ÿ”ฌ
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What helps is for those with epilepsy/their carers, to have a good view of epilepsy overall ๐Ÿ“š- not just from a personal perspective, but from the perspective of other people affected by epilepsy differently, and indeed those who arenโ€™t directly affected. ๐Ÿ˜€
This enables us to find better ways of explaining our epilepsy, and โ€œforgiveโ€ people for misconceptions. ๐Ÿค—
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What are your experiences regarding the above? ๐Ÿค”
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Whether affected by epilepsy directly or indirectly, remember: you are amazing. ๐Ÿค—๐Ÿ’ช๐Ÿพ
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Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog ๐Ÿ’œ
~
Turn on post notifications to never miss our posts! โ†—๏ธ Do share and tag us!๐Ÿ”–
๐Ÿ‘ฅTag a friend โฌ‡๏ธto show them this! 
Follow us on @epilepsysparks ๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น
~โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €
~
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#epilepsy #neurology #seizures #discrimination
The more we learn about epilepsy, the stronger and more confident we feel talking about it. ๐Ÿ’ช๐Ÿฝ๐Ÿ—ฃ
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Ignorance induces fear in not just โ€œeveryone elseโ€, but also ourselves.
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Our purpose is to build that bridge between the epileptologists, neurologists, epilepsy nurses and scientists - and patients, families and employers. ๐Ÿ˜€
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Remember our blog - featuring patients, medical and science professionals, patients and more! www.epilepsysparks.com/blog ๐Ÿ’œ๐Ÿง 
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Whether affected by epilepsy directly or indirectly, remember: you are amazing. ๐Ÿค—๐Ÿ’ช๐Ÿพ
~
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog
~
Turn on post notifications to never miss our posts! โ†—๏ธ Do share and tag us!๐Ÿ”–
๐Ÿ‘ฅTag a friend โฌ‡๏ธto show them this! 
Follow us on @epilepsysparks ๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น
~โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €
~
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#epilepsy #neurology #seizures
Ahhh 800 followers! Thank you to you all!! ๐Ÿ’œ๐Ÿค—๐Ÿ’œ๐Ÿค—
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We are slowly but surely educating people-both those who have epilepsy and those who donโ€™t!
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We are the bridges/translators between patients, medical/science professionals and the general public! ๐Ÿ‘๐Ÿฝ
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You are not as alone as you may sometimes feel. There are 65million people with epilepsy in this world. ๐Ÿค—๐Ÿ’œ๐Ÿค—๐Ÿ’œ
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Whether affected by epilepsy directly or indirectly, remember: you are amazing. ๐Ÿค—๐Ÿ’ช๐Ÿพ
~
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/blog
~
Turn on post notifications to never miss our posts! โ†—๏ธ Do share and tag us!๐Ÿ”–
๐Ÿ‘ฅTag a friend โฌ‡๏ธto show them this! 
Follow us on @epilepsysparks ๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น๐Ÿ”น
~โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €
~
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#epilepsy #neurology #seizures
Isnโ€™t it interesting that so many influential, inspiring people have/have had epilepsy?!*๐Ÿ˜ฒ๐Ÿ’œ๐Ÿง 
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There are heaps more, but thereโ€™s only so many we can fit on one page! ๐Ÿ˜ฒ
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Some of these people have sadly passed away, one of whom did die from SUDEP. ๐Ÿ˜”
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*Note: we have done extensive research for names of famous people with epilepsy, but unless we look at a personโ€™s medical records we cannot be 100%! ~
You and/or someone your know/know of; copes with epilepsy (controlled or otherwise). You and/or they are amazing. ๐Ÿ’œ๐Ÿง ๐Ÿค—โ €
~โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €
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#epilepsy #neurology #seizures
โ€ชThere are heaps of epilepsy treatment myths out there, featuring: eggs, spoons, mythical creatures, spirits, and more. ๐Ÿณ๐Ÿฅ„๐ŸงŸโ€โ™‚๏ธ๐Ÿ‘๐Ÿ‘ปโ€ฌโ €
โ€ช~โ€ฌโ €
โ€ชSee Torie Robinsonโ€™s advice and blog regarding this! โ€ฌhttps://www.epilepsysparks.com/Trusting-a-Qualified-Neurologist-Over-A-Spoonโ €
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โ€ชThere are people perceiving myths to be truths and refusing AEDs (Anti Epileptic Drugs) ๐Ÿ’Š๐Ÿ’Š in exchange for someone trying to remove โ€œevil spiritsโ€๐ŸงŸโ€โ™‚๏ธ๐ŸงŸโ€โ™€๏ธfrom their bodies. Frightening and dangerous! ๐Ÿ˜ฒโ€ฌโ €
โ€ช~โ€ฌโ €
โ€ชMany in the Western world are shocked that beliefs such as this still exist but indeed they sure do! Even within pockets of western nations. โ€ฌโ €
โ€ช~โ€ฌโ €
โ€ชEducation, education, and more education is required!! ๐Ÿคฆ๐Ÿปโ€โ™€๏ธ๐Ÿ“šโ€ฌโ €
โ€ช~โ€ฌโ €
Check out our amazing blog by patients, Employers, Neurologists, Neuroscientists and more! https://www.epilepsysparks.com/โ €
~โ €
By @torierobinson10 โ €
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You and/or someone your know/know of; copes with epilepsy (controlled or otherwise). You and/or they are amazing. ๐Ÿ’œ๐Ÿง ๐Ÿค—โ €โ €
~โ €โ €
Think about our other readers before sharing information and commenting. We are a public information page and many sensitive people read both posts and comments. We welcome understanding, non-judgemental, and overall positive and encouraging comments only.โ €โ €
~โ €
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#epilepsy #neurology #seizures