When you told a relative, friend or lover, that you had epilepsy, how did they react?
Were they curious, scared, nonplussed, accepting or in denial? Did they stick around or head for the hills? Did they ridicule you or want to know more? "How can I help you...what is it like...how does it feel?"
I can't say my early experiences were very positive. My parents were repelled and never said the "e" word. They treated me like a pariah and assured me that I would never amount to anything
These days, because of Federal budget cuts, virtually EVERY non-profit is desperately in need of funds.
I virtually get phone calls every day. The American Lung Association is calling me as I write this article. (I guess I'm on too many lists!)
But the real question you have to ask is: Not how much money you're giving, but WHERE it's actually going. How do you know how your charitable dollars are being spent?
(Fortunately The Epilepsy Foundation is a 3-star charity, according to the trusted Charity Navigator. It's also ranked as a top-rated charity by the Charity Watch Organization, part of the American Institute of Philanthropy.)
But the controversy over the best-selling Three Cups of Tea, written to raise money for the Central Asia Institute (CAI) is a real eye-opener. And they're in very hot water over the accountability of their financial practices.
Recently, CBS' 60 Minutes aired an expose about this charity and also questioned how they spent its funds. In fact it wasn't just building schools and hiring teachers in remote areas of Pakistan and Afghanistan.
The book was quoted as being as being "a beautiful story and it's a lie."
To read the controversy surrounding Three Cups of Tea — which is just one charity — go to:
When I went to the Philadelphia "Town Hall" meeting for the EEOC, it was very impressive.
The room was packed. There was a huge presentation board and someone speaking sign language for the non-hearing. There were people of all kinds of disabilities on the ADMINISTRATION BOARD — non-seeing, wheelchair bound and others.
In other words, the EEOC doesn't just walk the walk. They talk the talk!
Just to prove it, the EFA announced newly issued regulations from the Equal Employment Opportunity Commission for implementing Title I of the Americans with Disabilities Act Amendments Act (ADAAA).
Title I protects people with disabilities, like epilepsy, from discrimination in the workplace.
"The Epilepsy Foundation is pleased that the EEOC has issued its final regulations to implement the new law, which became effective on January 1, 2009.
These regulations will ensure that the original purpose of the Americans with Disabilities Act (ADA) is finally implemented, which is why I worked for the passage of that law originally," said Tony Coelho, honorary lifetime board member of the Epilepsy Foundation and former U.S. congressman from California, who served as a primary author of the original ADA.
The new regulations have listed several conditions, including epilepsy, which should—almost without exception—be considered disabilities under the ADA.
The clarified law and regulations are designed to eliminate any question of whether a person with epilepsy should be protected from illegal discrimination under the law.
"These regulations are a result of a truly bipartisan effort," said Sandy Finucane, the Foundation's Executive Vice President. "The Foundation is very pleased with the clear approach to implementing the definition of disability that the EEOC has taken.
We want, as Congress wants, to get and keep people who have epilepsy in the workforce, and the ADA and these regulations will help us do that."
Entitlements And Financial Services — From NPR 4/8/2011 If you're concerned about what government services could affect you, here's a brief low-down…
Retirees would continue to receive their Social Security checks, because those are paid for out of separate trust funds.
Medicare should also remain funded during a short shutdown. New applications for cash benefits — along with disability coverage under Medicaid — would be delayed.
States are nervous that some federal programs they help administer — particularly welfare and food stamps — could run into trouble if a shutdown endured. Those programs rely on frequent transfers from the U.S. Treasury and could run out of money quickly if the financial tap is turned off.
I've been stuffing mailboxes in my area, trying to make a dent in epilepsy awareness. You might write a letter of your own or feel free to use this as a model:
Dear Friend / Neighbor,
This isn't a note asking for money. (Although feel free to donate if you want to!)
It's about epilepsy. Because even though over 3 million Americans have it (more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson's Disease combined), no one seems to want to talk about it.
[Insert your own story here>
Anyway, this isn't a pity party. It's to tell you about epilepsy and what you can do to help a person having a seizure…and maybe even save a life.
Here's some simple first aid:
1. Turn the person on his side, so he/she doesn't choke. 2. Put something soft under his/her head. 3. Clear the area of both people and objects. 4. Do not put anything in his/her mouth. 5. And if the seizure lasts for more than three minutes, call 911.
It's nice for someone to stick around and reassure the person. Give them a hug. Tell them it's ok. Because, I promise you, it's very embarrassing to have a seizure in public.
But it didn't stop Alexander the Great…Aristotle…Alfred the Great…Alfred, Lord Tennyson… Vincent van Gogh…Charles Dickens…Alfred Nobel…Edgar Allen Poe…Gustave Flaubert… Fyodor Dostoevsky…Lewis Carroll…and Bud Abbott, among others.
I've enclosed a sheet about epilepsy myths and facts. Because there's a chance you might know someone who has epilepsy. It could be a friend, neighbor, co-worker or loved one. And I think you would help them immeasurably by knowing more about epilepsy.
Thanks for listening…
Signature Name Address Phone Number [Optional> Email Address [Optional>
Epilepsy Myths Live On… Just when you thought today's world had become enlightened, there are still a lot of myths and fears about epilepsy — fueled by lack of knowledge and misinformation.
Here are a few examples:
Myth: Epilepsy is contagious. Fact: Epilepsy can't be caught from contact with a person who has epilepsy.
Myth: People with epilepsy can't be employed. Fact: Many people with epilepsy are successful in all types of professions.
Myth: People with epilepsy are physically limited in what they can do. Fact: In most cases epilepsy is not a barrier to physical achievement. In some circumstances, when seizures are not being well controlled, persons with epilepsy may be advised to refrain from certain activities such as driving an automobile, working at heights or working with certain machinery.
Myth: Only kids get epilepsy. Fact: Although epilepsy is more common in children and teens under age 15, epilepsy happens quite often to older adults. Currently, more than 570,000 adults age 65 and above in the U.S. have the condition.
Myth: Epilepsy is rare and there aren't many people who have it. Fact:Epilepsy in America is as common as breast cancer. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy, muscular dystrophy, multiple sclerosis, and cystic fibrosis combined. Epilepsy can occur as a single condition, or may accompany other conditions affecting the brain, such as cerebral palsy, mental retardation, autism, Alzheimer's, and traumatic brain injury.
Myth: You should force something into the mouth of someone having a seizure so that they don't swallow their tongue. Fact: Never jam something into their mouth. It's impossible to swallow your tongue and YOU could get the bite of your life!
Myth: Epilepsy is no longer a problem since there are medications to treat it. Fact: Over 30% of people have intractable intractable epilepsy which cannot be successfully treated with medication.
Myth: You can't die from epilepsy. Fact: Epilepsy can become a life-threatening medical condition when seizures cannot be stopped. This year an estimated 25,000 to 50,000 will die of seizures and related causes. Patients with epilepsy have a mortality rate two to three times more than that of the general population, and their risk of sudden death is 24 times greater.View Thread