Wellness

[lovesrecess]

You are so fortunate to have your seizures under control. I guess you must have to have experienced it to know it is indeed misunderstood.

[lovesrecess]

Have had status seizures....I need no more information, but the types and names of seizures has really grown and the incidence has increased. More public awareness of what to do when they see someone experiencing a seizure is needed..
The fact you had to go on disability at age 51 says a lot. I have intractable seizures as a result of a congenital, neural-tube defect. I live with it everyday and pray for a seizure-free night...and wake up with gratitude. SUDEP is an ongoing concern. I am glad you don’t have that concern. Be grateful for each day. Do you currently takes meds?

[lovesrecess]

Many employers are wary of hiring someone who has epilepsy. Also, dentists are hard to find in some cases due to liability, they are afraid if the patient has a seizure while under their care and is injured or dies from the seizure, they will be held liable. I taught students with seizure disorders ( which is not uncommon is several other disabilities) for many years, and parents had to drive several miles to see the one dentist who would take them as patients.

[sfnative]

Based on personal experience, if you are an adult and your seizures are under control, do not admit in writing or verbally to a prospective or active employer EVER that you have epilepsy.  You will be doomed.

The only exception, again, due to personal experience later in my career, is when applying for a position with the federal government.  Though I am ignorant of all of the facts, the federal government not only must abide by the ADA, as must all businesses, but does hire people with various disabilities - lots.  It wasn't until I was hired into a niche position with them that I came to understand that I fell into that category.  Had no clue, as all I ever wanted to do was take my load of pills at night and forget about it.

[BirkiLady]

@sarahpanda  Why would working be a problem? I also have a couple of degrees and have worked in upper management positions all my life. In a position at a Fortune 500 Co. I had 43 men to supervise on a daily basis for 13 years. That was challenging!

Why would any company care about seizures any more than obesity, heart, diabetes, or a number of other health problems employers see everyday? An employee has a health screening before they are actually on the job, which would determine if they are healthy enough to work in the position they have been hired to do.

All companies are hiring people for their experience and their ambition! If she wants to work, she will never have a problem. I've never had to search for a position. Was always able to land the job when I decided it was time to change. Have never had a poor review or been asked to resign/fired.

Do admit my physicians filling out the Disability forms was devestating and humilitating.   

Years ago, a teaching position had over 100 other applicants . . . they chose me. And I have always been honest about my epilepsy due to insurance. Granted, we only stayed in that community 18 months before my husband was transferred. But I worked during that time because I wanted to work.

If someone has a hesitation about work, all potential employeers will pick up on those feelings in an interview. I could always tell when someone did not want to work and was using excuses. Needless to say, they weren't considered for employment. Our openings needed people who were ambitious, personable, knew the area or field or work, and willing to join the current employees as team players.

ETA: The people with disabilities hired in my Departments or Agency were far above average in intelligence and in their preformance on the job. They often excelled in their ambition, goals, ideas, ability to work with others. 

[BirkiLady]

We've lived in many states during our married life before returning to Nebraska. I've always found excellent dentists without a problem. By providing a complete list of my medications, all physicians and DDS are able to work around my seizure activity.

No, I'm unable to use any novacane; never have. It causes seizures for me. May not for any other epileptics; IDK. Never asked anyone else. Each DDS understood and we've worked together with all kinds of dental work. Not a big deal.

Same with my three fractures in my back (following the auto accident in Dec.). I couldn't have surgery because of the risk of anesthesa. My Ortho. Surgeon understood exactly what would happen and he decided let my back heal naturally. Painful? Of course! It was the worst pain I could imagine for months. I'm currently in PT in an attempt to alleviate the constant ache. I've been told those disks don't ever heal so don't know if this is as good as it gets. If so, I'll live with it. But PT feels good while I'm working on it!

Yes, of course I take a cocktail of meds for epilepsy. I also take medications for diabetes, RA, lupus and a diuretic. I've been honest about all of this many times. Seldom do I have breakthrough seizures (as I mentioned) during the day, but I do have noctural seizures. I don't want a pity-party ever. 

Everyone has problems of some kind. This is my normal now and I intend to enjoy life with gusto. I could turn into a pathetic old woman and feel sorry for myself OR I can make the most of my life with friends, various interests, volunteering and my love of reading and gardening. The latter is so much more enjoyable for my family and me!

Don't let epilepsy stop you (or anyone) from living a full life. That went out the door 100 years ago with the Old Wives Tales about witches. Good grief.  

[chrystaltree]

I don't think Epilepsy is misunderstood at all.  I think it hasn't been discussed here because it's one of those conditions that can be diagnosed and treated with a variety of drugs and there are surgical options for the most serious cases.  For those who don't respond to medications.  I have a cousin who was diagnosed when she was 6, she's 56 now.  Her seizures are well controlled on medication but she does occasionally experience break through seizures.  She says that happens once or twice a year.  My brother experience seizures from childhood until his mid twenties but I don't know if he had formal diagnosis of epilepsy.  

[BirkiLady]

@lovesrecess  Of course I've had SUDEP all my life. It not something I'm going to dwell upon. We are all going to die sometime and I've always wished to go in my sleep. Who could ask for more? Beats a lengthy illness in Assisted Living or (worse yet) Skilled Care; both of which would take a good chunk out of my finances. I would much rather leave those monies to my family than a medical "community"! 

This has been a life well lived; full and rewarding. I've done everything (and more) than ever anticipated. Family and friends have returned the love unconditionally. Death is something I've never feared; and honestly, feel like I have beat the odds.

Years ago I donated my body to Univeristy of Nebraska Medical Center (UNMC) in Omaha for research by their medical students. Now that I have other health problems,  hopefully they will find something to help other patients (especially Lupus which is a wicked and mysterious health problem for each individual).

My death will hurt my family deeply . . . not me. In the meantime, why worry about it? All legal and financial documents are up-to-date. Nothing else I'm able to do to make it any easier for my loved ones.    

[LadyAlice]

My twin sister has had epilepsy since she was eight years old. There is no definitive answer as to why. Because of the location in her brain that’s affected, surgery helped but could not cure her. She is on medications that must be monitored because of serious side effects. Epilepsy is still misunderstood by some of the public, including the entertainment industry, which has been addressed by the Epilepsy Foundation and other advocacy groups. As her caregiver, I will always fight for her!

[wishmoon]

I DO believe, as an epileptic, that this disease is misunderstood. If doctors understood it, they'd be able to "cure" it, they can't. Many doctors have opinions of why you have epilepsy, but they don't know. Stress doesn't give you epilepsy. If that were the case, ppl would quit their stressful jobs/situations and be seizure-free. Many times, as you get older, seizures become less and less. Also, you wouldn't have to take medication.

I've been to many hospitals, seen the head neurologists and can truly say that NO doctor knows the reason. The only "cure" is medicine and sometimes, if you're lucky, time. I'm not willing to take the chance on my growing out of it, so rely on medicine.