Epilepsy Talk
Do you consider yourself as “disabled” or a “person with disabilities”? | May 31, 2022
It’s an interesting and provocative question.
One that author Erica Mones brings up in her new article: “I Refer to Myself as Disabled, Because My Disability Is Central to Who I Am.”
I think each of us will react differently and defend our decision in a unique and personal way.
Hence, the reason for this article.
Does your disability define you or are you defined by your disability?
One of my favorite quotes which I came across years ago (I can’t remember where) is:
Disabled = Dis+abled.
And that is where I stand.
See Erica Mones’ argument in the link below and tell us what you think…
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Reblogged this on Disablities & Mental Health Issues.
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Comment by Kenneth — May 31, 2022 @ 10:39 AM
I agree that we’re all unique and therefor everyone can chose what’s right for them. I came up with my own word a few years ago, difability. It sounds weird, but describes me best (and who knows, maybe I am weird). It’s not that I can’t do things, I just do some of them differently, or make modifications. If anyone asks, that’s how I want them to see people who have differences from most people.
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Comment by Lara Nowak (LahLa) — May 31, 2022 @ 11:14 AM
Lara, I love difability and your whole stellar outlook.
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Comment by Phylis Feiner Johnson — May 31, 2022 @ 12:33 PM
Thank you, Phylis 😊
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Comment by Lara Nowak — May 31, 2022 @ 5:39 PM
I feel that I am a person with a disability. I’m Disabled makes it sound like I have many disabilities.
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Comment by bradleyballardrocketmailcom — May 31, 2022 @ 1:23 PM
While I understand that I live with neurological disorder which restricts my mental & physical functions to fully operate 100% without any form of disruptions 24hrs a day, I hate to be defined by my neurological disorder. Therefore I resent the terminology & classification which makes me feel like dysfunctional person relegated to “disability or inability” category.
I hate to disagree with the traditional structure & social custom of classification to medical disorders but the definition to medical hardships need NOT to be punitive psychological torture for victims] to carry on like a badge for a lifetime.
Gerrie
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Comment by Gerrie — May 31, 2022 @ 8:50 PM
In addition to Lara’s “difability”, I also like “differently abled”.
And then there’s the cliche, “I have epilepsy, but epilepsy doesn’t have me.”
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Comment by Phylis Feiner Johnson — May 31, 2022 @ 9:05 PM
I grew up knowing that I had disabilities. I proved a lot of people wrong about what I could and couldn’t do!
Sorry for being dramatic but it’s been traumatic the past 13 years with people who have been triggering my Epileptic Seizures so traumatizing the police had to brought to me for my safety because of it was happening to much, too often I was being brought to the hospital with no contact with family and friends (closest family blocked numbers even of the hospitals)…
Anyway I was covered with my own blood from severe Epileptic Seizures and it was worrying a lot of people and pissing them off as “who the hell was doing this to her?! Enough is Enough with rumors!!”
Before I relocated to the building that I was warned about the week of and thereafter my Epileptic Seizures were obnormal!
I was prepared for a SRD working with my employment counselor, who I was told recently passed away. He was a positive attitude and great to talk to. He and my previous counselor got me to seek out a school that I wanted to go to … talk about it… I had a college interview with one school that 😶😡 everything was going well until August 2018
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Comment by Tabitha — May 31, 2022 @ 11:59 PM
Epilepsy and seizures are not a disease. Any disabilities that may result don’t necessarily mean inability. Progress WILL be made, we just must be optimistic because of the frustration, prejudice we may face, and struggles. Everyone has some problems they face today. Epilepsy is just one of mine. I get frustrated when I don’t go as fast as others and make progress. I finally got my bachelor’s degree after 20 years because I had to take years off due to the epilepsy issues. I see myself as an epileptic….not disabled.
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Comment by scorpiochic12 — June 1, 2022 @ 11:50 PM
Great attitude…great accomplishment. BRAVO to you!
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Comment by Phylis Feiner Johnson — June 2, 2022 @ 9:07 AM
Hi Phylis:
Wow–your subjects are really interesting and so thought provoking.
And so, here's my thought: epilepsy is a spectrum and should not
really be considered a disability. Does anyone consider asthma a
disability? I had a friend in college who practically lived on Ventolin
and no one ever called her disabled.
I take my medication (now Keppra, formerly Depakote) religiously and
have had very few grand mal seizures,
which has alllowed me to take flying lessons (Cessna 140), race car
driving lessons (one class taught by an Andretti–that was nerve wracking!),
and given me the chance to live a normal life in general. I even graduated
from college within 4 years. My life now as a caregiver is really boring,
but I'd never call myself disabled, even though I don't drive much anymore.
The reason I don't drive? Too many wacko drivers out there. I don't feel safe.
Also, I tolerate Keppra pretty well, but the medication has given me weird dreams.
I had one dream where I was chased by John Cleese (as he looked in 1975),
yelling, "I want you! I need you! You stink of elderberry juice!" Ugh. I'll
never look at Monty Python stuff the same way again!
Best,
Desiree 🙂
Sent: Tuesday, May 31, 2022 at 10:03 AM
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Comment by Desiree Rye — June 2, 2022 @ 12:51 PM
Desiree, I like your spectrum analysis AND your bravery. Minus the John Cleese part. 😄
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Comment by Phylis Feiner Johnson — June 2, 2022 @ 2:02 PM
I do not consider myself as ‘disabled’ because there is so much that I am able to do. I deal with some functional limitations (driving – by my choice), but that has never stopped me from doing the needed work to meet goals & dreams. I chose to finish my Occupational Therapy studies on a part-time basis (to keep my health & sanity!). Currently I work with clients who have so many more physical problems,.. How can I complain?
During a job interview I was asked: What are some of your weaknesses? My reply: I’m still a human being who makes mistakes & has a lot to learn. He told me that he liked my answer!!
Part of my medical care included 2 brain surgeries, where I needed to relearn to do so many simple things in life (that we all need and frequently take for granted). Yes, the surgeries really helped. I think the hardest part of dealing with seizures is when the MD’s really don’t & won’t take the time to really listen… and base their Plan of Care on their own prejudiced decisions. I’m so grateful that I am able to go in to help others. — I have also learned that God shows Himself the strongest in the lives of those who have the greatest of needs.. and are not too proud to pray & trust Him.
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Comment by Maire Archbold — June 2, 2022 @ 2:07 PM
Your humility and persistence are astounding. Along with your reply: “I’m still a human being who makes mistakes & has a lot to learn.” Inspiring for sure.
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Comment by Phylis Feiner Johnson — June 2, 2022 @ 2:27 PM
I was on your site trying to find an article you had written a couple years ago, but couldn’t find it. The article was on natural foods that helped treat epilepsy and the only one I could remember was garlic. If you could help me out I would definitely appreciate it.
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Comment by justinkelley1135 — June 3, 2022 @ 4:45 PM
Brain Food For Your Health… https://epilepsytalk.com/2022/03/31/brain-food-for-your-health-2/
Foods That Fight Stress… https://epilepsytalk.com/2021/03/02/foods-that-fight-stress/
Fighting Seizures Nutritionally https://epilepsytalk.com/2020/12/07/fighting-seizures-nutritionally-2/
Natural herbal remedies for epilepsy https://epilepsytalk.com/?p=15794&preview=true
Garlic:
Most easily found in every home, garlic is full of medicinal benefits. To use it as a home remedy for epilepsy, take equal quantities of water and milk. To this, add 3-4 crushed cloves of garlic. Boil the mixture well and drink a glass of this mixture everyday. The water and milk keep your body hydrated and replenished with minerals, while the garlic has many properties for improving neurological health.
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Comment by Phylis Feiner Johnson — June 3, 2022 @ 5:35 PM
I appreciate you getting back to me so quick with all of those. I’m assuming the last one, Natural Herbal remedies for epilepsy, is the one I’m looking for, but the page is no longer up. I remember some of the other things, but I can’t remember all of the things or the amounts to be taken. I can remember turmeric, valerian, ash gourd, blue vervain, chamomile tea and epsom salt. Not sure if you can get the page back up or list where you found the info so I can get all of that. Thank you again
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Comment by justinkelley1135 — June 3, 2022 @ 7:50 PM
Ok, Justin. Here we go.
Natural herbal remedies for epilepsy
Long before Dilantin and Phenobarbital, there was epilepsy. And herbal remedies.
Of course, these herbal epilepsy remedies are NOT substitutes to anti-seizure medications, but are more like a supplementary support. Most of them work by preventing a seizure and other symptoms of epilepsy.
(NYU Langone Medical Center estimates that 20 percent of people taking prescription drugs also use herbs.)
Some may sound weird and others familiar. But hey, how can you argue with success?
Ash Gourd:
For some reason, this particular type of gourd is believed to have healing powers for those who suffer from seizures. Therefore using ash gourd as a home remedy for epilepsy can help to relieve the symptoms and prevent seizures.
Eating the gourd or drinking the juice of it can help, but turning to a supplement featuring this type of gourd can provide the best relief and is highly recommended as a natural cure.
Bacopa Leaf:
Used for centuries in Ayurvedic medicine, the Bacopa leaf, or Brahmi, is an effective home remedy for epilepsy. It is a powerful nerve health promoter and is known to enhance memory, concentration as well as treat epilepsy. It enhances nerve health and protects the neurons against damage, keeping seizures at bay.
Black Cohosh:
Highly recommended in numerous respected publications. Like many of the herbs already mentioned, it’s considered a sedative and antispasmodic and has been extensively used for epilepsy.
Blue Vervain:
Worth mentioning here after reading old American herb doctors tales of their successes with stubborn cases of epilepsy. Blue Vervain is another wonderful herb used by many cultures all over the world. It is an American Indian remedy for several diseases including nervous afflictions.
Basil:
Packed with several medicinal properties, it can be used as an effective remedy to reduce the episodes of seizures, as it helps stimulate your brain and strengthen the nerves. Take few fresh basil leaves and extract juice from them.
Castor Oil:
A natural emollient that penetrates the surface layers of the skin, making it softer and more supple. The effects of externally applied castor oil can be enhanced through the use of a “castor oil pack” — a piece of wool flannel saturated with the oil and applied to the body. Use of a pack allows the greatest penetration in a specific area of the body. The application of heat further increases this penetration, allowing the oil to better impart its qualities to the body.
Chamomile Tea:
Known for its antioxidant and cleansing properties, chamomile tea can also abate the symptoms of epilepsy. It’s a natural soothing agent and works by calming the nerves. If you feel you have a seizure coming, you should definitely try this remedy. Sipping a strong chamomile tea can be of great help. Boil some water and add a teabag of chamomile tea. Allow it to steep for at least 15 minutes, making sure that the tea is very strong. Sipping it will immediately soothe your on-edge nerves.
Coconut Water:
Ever experience that totally refreshed and cool feeling after drinking coconut water on a sweltering day? That’s because coconut water is a magic potion loaded with vital minerals, electrolytes, and water. These three things promote better neuron health and keeps the neurological system cranked up, ensuring proper functioning of the brain.
Garlic:
Most easily found in every home, garlic is full of medicinal benefits. To use it as a home remedy for epilepsy, take equal quantities of water and milk. To this, add 3-4 crushed cloves of garlic. Boil the mixture well and drink a glass of this mixture everyday. The water and milk keep your body hydrated and replenished with minerals, while the garlic has many properties for improving neurological health.
Epsom Salt:
Magnesium sulfate, as it is also known as, has a wonderful effect on nerve health. This is a naturally found salt that is rich in magnesium and sulfur, which are both responsible for better absorption of calcium by the body. The magnesium also helps by maintaining proper nerve functioning, reducing stress, and eliminating toxins. Simply taking one tablespoon of Epsom salt every day with a glass of water can prove beneficial for epilepsy. Some businesses focus on selling entirely pure “food grade” Epsom salt, which contains magnesium sulphate. Whether there’s truth to these claims is unproven. The best amount to take is about a tsp. every morning, should you decide to use Epsom salt.
Essential Oils:
Essential oils are natural soothing and calming agents. Oils of lavender, ylang ylang, and chamomile can be used daily to keep up nerve health and to reduce anxiety and stress related to epilepsy.
False Pepper:
False pepper is a vine with tiny flowers that are yellow-green in color, and are typically found throughout India. Alternative medicine makes use of the bark, leaves and fresh fruit to handle a variety of problems. These problems include parasites, rheumatism, stomach difficulties, skin diseases, tumors, psychological problems, and convulsions. The active component in the plant is embelin, and it has anti-fertility, anti-inflammatory, anti-tumor and anti-oxidant properties. Embelin is a member of a chemical class called benzoquinone, and derivatives of quinone have anticonvulsant properties.
Frankincense:
The essential oil of choice for any kind of brain disorder. Frankincense has a molecular makeup that includes sesquiterpenes, derived from plants, that is able to cross the blood/brain barrier. These sesquiterpenes stimulate the limbic system of the brain and other glands within the brain, promoting memory and releasing emotions. Frankincense slows down and deepens the breath. The therapeutic properties of Frankincense oil are antiseptic, digestive, diuretic, and sedative.
Indian Gooseberry:
Amla, is a wonderful fruit, whose benefits never ceases to surprise. Not only is it the richest source of Vitamin C, it also has loads of antioxidants and minerals. One glass of amla juice taken on an empty stomach can help relieve the symptoms of epilepsy and prevent seizures.
Licorice:
Once again, licorice or Mulethi, proves that it is much more than what we know it to be. Grind some licorice and add it to a tablespoon of honey. Take this homemade medicine every day to find relief from epilepsy and its symptoms. CAUTION: Do not consume licorice during pregnancy for any reason as it may cause premature labor!
Motherwort:
This is a historic way of treating epilepsy since this serves as a nerve tonic and sedative. The tonic is extracted by boiling the herb in hot water. Daily consumption is effective in treating epilepsy.
Omega-3 Fatty Acids:
These are a group of essential acids that promote overall good health. These fatty acids reduce cholesterol and artery blockages, which in turn reduces the effects of ageing and improve nerve and brain health. Foods rich in omega-3 fatty acids are fish and nuts. Make sure you include these in your diet on a regular basis to prevent seizures. These foods are also rich in vital minerals and nutrients that are important for healthy nerves and brain functioning.
Onion:
For treating epilepsy, extract the juice of 2-3 onions and mix it well in water. Drink a glass of this mixture daily for at least 2 months and you will find great relief from your symptoms.
Skullcap:
Traditionally, it has been used for delirium tremens, St. Vitus’ dance, convulsions, seizures, hysterical states, lockjaw, tremors and epilepsy.
Sesame Oil:
A massage of this lesser known oil can help to immediately soothe the symptoms of epilepsy. Take a little warm sesame oil and massage it well onto the soles of the feet, temples and palms. This works well if done at bedtime after which you can get a good dose of calm sleep.
Turmeric
Turmeric and its chemical compounds have been studied for its anticonvulsant benefits in treating epilepsy and other conditions of our central nervous system such as mood disorders, bipolar disorders, pain, tremors, schizophrenia and even neurodegenerative diseases.
Quite a bit of research points toward the fact that turmeric is good for brain health. Additionally its bioactive constituents also demonstrate anti-epileptic and anti-seizure effect.
Valerian:
Currently one of the most popular orthodox antispasmodic medications in Russia and Germany according to Daniel Mowrey author of Herbal Tonic Therapies. It’s anticonvulsant action has been useful in treating epilepsy. Valerian was used in the First World War to prevent shell shock in front-line troops. Valerian is classified as a tonic herb. It can regulate and balance opposite extremes. Recent research has shown it to be a sedative but more research has reported it can also stimulate in a way as to improve coordination, increase concentration and energy. This tonic nature of Valerian allows it to depress or stimulate where necessary depending on the current needs of the nervous system. Another way Valerian has been characterized by clinical studies is that it has neurotropic effects directly on higher centers of the central nervous system. One of the most remarkable aspects of Valerian is the almost total lack of toxicity, even with long-term use.
Violet Tree:
The violet tree is a little tree with fragrant purple flowers indigenous to the more tropical parts of Africa. Alternative medicine practitioners use the roots to handle a variety of physical and psychological problems such as discomfort, irritation, nervousness, headache and epilepsy. Research has compared the extract of the root of the violet tree to phenobarbital, which is an anti-convulsant drug. This research confirmed the conventional usage of the violet tree as a natural treatment for epilepsy. More studies are necessary to support these results.
Herbs you should not take according to http://www.epilepy.com
Fennel
Hyssop
Rosemary
Sage
Tansy
Tarragon
Wintergreen
Note: Precautions with herbs. Evening Primrose Oil and Borage can lower your seizure threshold. Sage and Hyssop can be pro-convulsant.
Some herbs decrease the level of anticonvulsants in your body. Watch out for toxins and pesticides in unregulated herbs. And most herbs should be avoided by pregnant women.
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Resources:
https://www.botanical.com/botanical/mgmh/comindxb.html
https://www.healthline.com/health/natural-treatments-epilepsy#herbs
https://www.turmericforhealth.com/turmeric-benefits/turmeric-and-epilepsy
http://www.homeremedycentral.com/en/home-remedies/natural-cure/epilepsy.html
http://healthwyze.org/index.php/component/content/article/311-natural-approaches-for-treating-epilepsy.html
https://www.onlymyhealth.com/natural-and-effective-remedies-for-epilepsy-1473326933
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Comment by Phylis Feiner Johnson — June 3, 2022 @ 9:30 PM
Phyllis, thank you for this information. Another great source of healthy info is: PRESCRIPTION FOR NUTRITIONAL HEALING by Phyllis A. Balch. ISBN #:158333236. It contains info about so many other physical problems/ illnesses. It also includes dietary suggestions. I know that this has helped so many of my friends with other medical problems. Maire’
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Comment by Maire Archbold — June 4, 2022 @ 1:13 PM
Thank you sooooo much, I’ve already found the garlic to work so well.
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Comment by justinkelley1135 — June 4, 2022 @ 1:15 PM
In my case, I just need to create and figure out a few adjustments of my own in order to meet a goal. It might be improbable to some, but it’s possible for me. I Just have to think outside the box. However, I do have my sense of reality. I Have trouble remembering and concentrating on tasks that were assigned to me, few days after my seizure, (That’s why try to get ahead at work and hopefully get approved of my own ideas), avoid certain lighting, always alert someone I can trust as to where I’m heading, (even though my seizures are nocturnal), can’t sleep without a monitor, I’ve been spending weeks rearranging my bedroom with mats and corner guards (like a baby), But just to do the basic things in life, is a blessing for all of us. Or just being able to get up and move around, after a seizure is a milestone for a lot of people. Jmo
~kate
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Comment by kate — June 3, 2022 @ 11:05 PM
Kate, I think “thinking outside the box” is brilliant and a good survival strategy. We ARE different and must develop strategies to surpass those differences as you have so cleverly done. Hats off to you!
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Comment by Phylis Feiner Johnson — June 4, 2022 @ 9:49 AM
Thank you phylis 🙂 I’m also preparing to put corner guards around the house. I wasn’t sure if I should at first, thought that my only visit to the ER would be when I was first diagnosed. But I recently had my second visit a month ago, which was really alarming. So I had to think of ways to limit further injury too. Anyways, thanks for the herbal list, always open to something new and helpful 🙂
~kate
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Comment by kate — June 4, 2022 @ 9:01 PM
Kate, you might find this article useful:
Is Your Home Seizure-Proof? https://epilepsytalk.com/2021/05/31/is-your-home-seizure-proof-2/
Good luck.
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Comment by Phylis Feiner Johnson — June 5, 2022 @ 8:54 AM
Another great article is: How to talk about disability sensitively — from NPR https://www.npr.org/2022/08/08/1115682836/how-to-talk-about-disability-sensitively-and-avoid-ableist-tropes
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Comment by Phylis Feiner Johnson — August 8, 2022 @ 3:21 PM