Epilepsy Talk

How to Start Your Own Adult Epilepsy Support Group

August 14, 2019
2 Comments

One thing I’ve discovered is the search for support groups is endless — and seldom successful.

Especially now that charitable contributions are tight and epilepsy centers have had to cut expenses. (Yes, our support is considered an “expense”.)

That’s why I’ve put together this short guide on how to form your own Epilepsy Support Group.


FREE Legal Resources

March 27, 2019
28 Comments

I think that pro bono legal aid is perhaps more difficult to find than almost anything else in this country, except perhaps, FREE medical care. 

But here are six resources where you can find FREE legal aid and assistance.

It’s tricky, because each state has its own laws. 

But these organizations can help guide you to the resources available in your area.  (The other option is to Google your local Legal Aid office.)


Epilepsy — Top Financial and Medical Assistance Programs

March 19, 2019
3 Comments

With so many people at the end of their resources, we could all use a helping hand.

Below is my attempt to research viable resources for financial and medication aid.


Epilepsy and Education…Coming Out Of The Shadows

December 6, 2018
10 Comments

It starts in the playground.  A kid has a seizure and everybody freaks out. 

Nobody knows what to do.  Maybe not even the school nurse. 

Even though epilepsy first aid is a cinch.

It’s frightening to see a child seize and then, based on that fright, they think:

“I can’t deal with this.”


Health Insurance — No-Cost & Low-Cost

August 17, 2017
10 Comments

These days, health insurance costs an arm and a leg (literally), if you can even get it. But before you lose hope, here are some resources that might just make the impossible become possible…


24/7 Epilepsy Foundation Helpline

July 5, 2017
19 Comments

Do you have questions about seizures or epilepsy?

The Epilepsy Foundation’s Helpline is now available 24 hours a day, 7 days a week.

Trained information specialists are now standing by to answer your questions about epilepsy and seizures.


Expanded Guide to Epilepsy Books for People of All Ages

August 31, 2014
10 Comments

When I decided to begin an epilepsy library for reference, I was absolutely overwhelmed by the millions of books out there.

So, I went to Amazon, rolled the dice and ended up spending needless money on a lot of duds.

Don’t get me wrong, some were of value, but most were a waste of time.

So, to save you from my disappointing experience, I’ve combed the web, epilepsy foundations, blogs and wherever else I could think of, to find books that would actually inform, explain and even sometimes, entertain.

I hope you’ll find something of use on this list, which is truly a labor of love…


Where to Go When You Need Help — Directory of Epilepsy Resources

November 21, 2013
6 Comments

Here are some wonderfully useful links I’ve found along the way. Some may be familiar and some may be new to you. If you have any additions or suggestions, please, speak out…


Special Education — Expectations and the Law

September 8, 2013
16 Comments

Special educational ensures that your child needs are met (legally) if they have learning difficulties that need special help at school.

Technically, it’s called a special education provision.

And there may be a special educational needs coordinator (SENCO) at the school who can look at your child’s needs, alongside the school’s governing body (often the local authority’s education department).


Your Child Has Just Been Diagnosed With Epilepsy…

January 23, 2011
6 Comments

The diagnosis comes in. It’s epilepsy.

Your heart drops to the bottom of your stomach. You may panic…or cry…or call in the troops for support.

Whether your child is an infant, toddler, grade schooler, adolescent or young adult, how you behave now will make a world of difference to their future.

Here are some resources to help you help your child…


    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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