Regaining independence.

[lunacy]

First let me start off by saying, I'm sorry if this subject has been covered here before but I'm completely new here and I used the search function and came up with nothing.

So then, a little about me: I do not have epilepsy, however a couple years ago I had a serious car accident and because of this I have had a few seizures. They seem to come around once every six months (we're coming up on six months on the eleventh. Fingers crossed!) and at least in Georgia (not sure how this applies in other states), you have to be seizure free for six months before you can even THINK about getting your driver's license back. Because of the accident and the seizures, I have completely lost my independence. So I was mainly wondering, what has anyone else done to regain their independence despite their seizure activity? I've tried to come up with a few ideas on my own but I've been unable to really think of anything. Any input (or links to other threads on this forum about this subject) would be greatly appreciated! And once again, I greatly apologize if this subject has already been covered here. I also apologize if this is the incorrect sub-forum for this topic.

 

[Jfpinell]

Basically don't let anyone tell you "no". Everyone has been so overly sheltering of me ever since I started having seizures at 2 weeks old. Even today I hear the same shhhhhhhugar more or less. People try to get me to back down by saying "We're just trying to help" or "You're in denial", "You''l get hurt", or what have you. My response is, "Did it ever occur to you that I HAVE TO be a bit more insistant, or stubborn, or whatever you wanna' call it?" I've been in firefighter training, police training, storm spotting, First Responder certification..... like, HELLO! I've never gotten hurt or hurt anyone else. Depending on how long you've had them, and if you have plenty of warning, you are the best judge of your body and what you can handle.
Another thing I do is tell myself it's not my fault. I don't always look at it as "loss of independence". I guess after having these for 39 years, I'm just more able and willing to admit when I need help than most people -especially most men I know! Which I actually look at as a gift from Someone. You need a bit of extra help at times (I'm not sure how severe your's are), but it's nothing that should make you feel like you've lost everything.
By the way, by definition, that is epilepsy you describe....even if it isn't documented. ....Sorry.

 

[epileric]

I've been in firefighter training, police training, storm spotting, First Responder certification..... like, HELLO! I've never gotten hurt or hurt anyone else.

First of all didn't you say that you had also not even got half-way through being trained for those jobs because of your seizures? I guess that is why you've never gotten hurt or hurt anyone else.

Needless to say there was a mess to say the least about me finishing the Firefighter 1 course!) Police training, EMT, machine tool, truck driving (yes, I know. But that was more of a desperation thing. Not so much at that point anymore to complete A degree, but just to complete ANY degree.), CNA, farm technology, and Firefighting training! None of which I got halfway through.

It is illegal to drive for safety reasons & rightfully so. When I lived on the West Coast you had to go a year without seizures before you could drive. One person had only 1 seizure a year and one year it came late. He got his license, had the seizure while driving & drove into the ocean.

There have been numerous other occasions where seizures have caused accidents. The problem is that you are not only putting yourself at risk but others as well.

Seizure causes accident on Evansville's East side


As far as independence goes, I've never driven and I have to admit that sometimes I wish I could but I have learned to compensate in how I make appointments & schedule responsibilities. Something else I've found is that because I walk everywhere I work off a lot of my stress whereas my friends who drive (especially those in bigger cities) seem to get much more stressed while driving.

I'd also like to welcome you Lunacy. There are a lot of people here that I'm sure you'll meet who have had the same trouble.

 

[Jfpinell]

For your information the main reason I've never been able to complete anything is due to my processing and memory issues and remembering everything straight.
I'll be frank and blunt....it seems as though with many of your posts with people you like to play devil's advocate or knock down what they are saying. Perhaps it isn't meant that way, but I've read other posts where people have felt that way too. Could you please try to tone it down a bit? Your (perhaps misinterpreted) tone can many times cause people who are more sensetive or looking for some uplifting of their spirits to lose much of their enthusiasm. (It's not you personally...my father is the same way, and he doesn't seem to understand that his bluntness quite often causes us kids to feel cut down inside.)
Don't get me wrong. It's just that for me at least, these type of programs with their intense challenge give me something to shoot for inside. After so many years of being looked at by everyone I know like I have to be handled like a piece of antique china, if you will, things this challenging give me at least SOME kind of hope inside and feeling of accomplishment. (Even some of my hardest-nosed police instructors understand why I'm trying so hard.) Even if I never have a "badge and gun", at least it's the feeling that I did SOMETHING myself. (Long story, but with all the special Ed. classes in K-12 -except for 2 years- and the way things went, I don't truely feel I EARNED my H.S. diploma....that much of it was given to me, as is so often the case with people in these classes in grade and high school -at least in my State.)

 

[Endless]

People will have all kinds of opinions on all kinds of things. Our disorder can be especially confusing.

1. Information & Share the love. First there are the treatments that have been proven effective through scientific studies. And then our own experiences and emotional feelings, all very valid. With some possible room for debate on the validity of an experimental design and/or possible conflicts of interest.
2. Looks promising but not sure. Second there are the gray areas. Treatments that are promising with some science behind them, but not enough. So they are still considered experimental. Neurofeedback and seizure alert dogs are two of them. IMHO, use your best judgement on those.
3. Urban legends. The third type is things that are urban legend. People say it helps but it really doesn't. Or they say it hurts but it doesn't. The objective (not emotional) science says the exact opposite. This category is where our more lively conversations happen.
4. Must-Do's. Fourth there are cut and dried things - yes or no. No wiggle room. There are driving laws that must be obeyed. Driving - sure, we may be willing to risk an accident and take ourselves out but we have no right to take someone else out with us. We have no right to take someone else's life when it can be prevented. That's why the law is there. We can debate it all day, but there it is. People will make their own choices around this but it is wrong to ever suggest that someone else break the law.
5. Strangers with candy. The fifth is the category I have a really big problem with - things that are harmful that someone says is helpful. Or to do something that is so clearly wrong that it is astounding that anyone would suggest it. It actively hurts other people. The person doing the suggesting may want it and do it for themselves and they have the right to make that choice, but it's wrong to pull others in that direction. Especially people in here who may be confused by seizures, postictal states, or medications. I say stop it. Don't do it. Enough.

Things in categories 1-3 are either a matter of supporting each other, education and facts, or a matter of opinion, and we always do have a friendly, and sometimes lively conversation.

Things in categories 4 & 5 people will usually shout out loud and clear that it could be a deadly error, and hopefully provide references why.

Lunacy, I just took something for my headache about an hour ago, so lucky day, here's a reply to your original question.

• Some people get around by bicycle. Court is one famous example in here. He is a master bike rider and gets almost everywhere that way. I have a balance problem and dizziness and a regular bike isn't a good option for me, but there are some cool adult-sized tricycles I've been looking at.
• I take the bus a lot, but on bad days I can't do the walk to the bus station. It makes it hard. Pride has made me not apply for a disabled bus pass, where they will pick me up door to door. So I guess I've created my own situation on that.
• In some states people can ride golf carts in the -- whatchamacallit -that area beside the road.
• Sometimes I hitch a ride with neighbors or family. But that resource is scarce.
• People in the city hoof it. They walk.
• I would really like to get an electric scooter. I don't know if they are legal here to ride, or for a person with seizures to drive one, or if they come in the tricycle form. There are electric bikes, but I've never seen one in tricycle form. I'll have to do some research on all this.
• Cabs are expensive, but in an emergency they are there. I keep the numbers for the three major cab companies in my cell phone just in case.

Oh, and on not driving. Many of us don't physically turn in our licenses if that's allowable in our state because it is too hard to get them back once surrendered. We just stick it in the back of the wallet. We also keep auto insurance for the same reason, just change it to the much cheaper never driven type of insurance. Tell 'em you are environmetally/budget concious and are riding the bus.

Now I'm going to go back and ice my head. Too much thinking, too much eye strain, everything is blurry and my head really hurts.

 

[Meetz1064]

Hi, hello

and how do you do, Lunacy. It's nice to meet you. Welcome to CWE. I'm sure you're going to like it here.

As someone blessed with E from the day they were born more than 46 years ago, I have a few things to chip in here.

I'm on a slightly different end of the spectrum here, as I have more control than quite a few here, and am legally allowed to drive. I've had the pleasure of losing my independence as well on several occasions--but those were done voluntarily. Yes, voluntarily.

My doc and I have an agreement that if I have a seizure or THINK I have had one (I wake up and am super-sore etc, but am not completely sure) I will take myself off the road for a specific amount of time. The minimum amount of time is 6 months--but I usually do it for a year to be safe.

Yes, it's a pain getting around. But I would much prefer adjusting myself and the loss of independence than be responsible for the loss of life of someone else or some accident that could have been prevented.

I do look at alternative means to help me, but I also happen to have a number of other issues that I'm dealing with as well. However, it is VITALLY important to THOROUGHLY RESEARCH what you're considering, and not just do something on a whim.

While some alternatives may be the perfect solution for Joe S, the same ones may be horrible solutions for Jane K. That's something to keep in mind--not all of us have the same body chemistry, even though we are E patients. That's well-proven by the fact that many of us have quite different reactions to various AEDs.

Driving laws are non-negotiable and there for a reason. Gray areas such as the ones mentioned by Endless are negotiable, and in many cases VERY useful.

As for the other things that Endless mentioned, these can be judgment calls. Things like herbology--and there are specific herbs that E patients SHOULD avoid--and the use of marijuana are not only judgment calls, but possibly dangerous to your health.

Check out our Library for a lot of useful information on neurofeedback and on various diets that have been useful to many members. You'll be interested to see the results.

Take care, and remember--we'll be here for you no matter what!!

 

[Bernard]

The age old issue of independence / driving / safety gets rehashed here pretty regularly. Government/State laws try to establish a best fit threshold, but as we all know - every case of epilepsy is different. Epilepsy doesn't always fit into a neat box.

Some people are very passionate about this issue (on both sides). Let's try to keep discussions civil please. As with all controversial issues, its always safe to discuss how you see the issue or what decisions you've made for yourself, but please be very cautious in telling another member what to do.

 

[elizzza811]

I'll be frank and blunt....it seems as though with many of your posts with people you like to play devil's advocate or knock down what they are saying. Perhaps it isn't meant that way, but I've read other posts where people have felt that way too. Could you please try to tone it down a bit? Your (perhaps misinterpreted) tone can many times cause people who are more sensetive or looking for some uplifting of their spirits to lose much of their enthusiasm.

I've felt the same way, though I do agree you have to be careful approaching the driving issue with epilepsy. I only have about 2-3 seconds of a warning before a seizure...no real warning, except on days where I wake up confused and apparently had seizures in my sleep (and can therefore predict I'll have more). Everybody is different.

 

[Rae1889]

In regards to Epileric's attitude:

As much as I hate to sound "rude" myself, but Eric is just trying to show you all sides. He isn't looking to knock you down, start a fight or crush any dreams. He is simple pointing out that your story didn't match up. For your information, processing issues, memory problems etc are all side effects of Epilepsy. So yes, your epilepsy caused you to quit halfway through. Think about it. If you didn't have seizures (which can screw with your processing if your having seizures you don't notice, not to mention forgetting thingd due to be being pre or post-ictal) and you didn't take meds for your seizures (which cause all those side effects too) the likelyhood of you having memory and processing issues is almost nil.

When it comes to epilepsy, everyone has different ways of viewing things. Obviously yours and Erics personalitys clash, because you don't agree on certain subjects, but its good to see both sides of an argument even when its frustrating. To be honest, he's gotten me frustrated at times, but I blow it off. I personally like hearing his opinions.

 

[elizzza811]

He does offer some good advice/opinions - I agree. In fact, usually he does. But his tone hurts sometimes.

Like starting his replies with 'first of all' just sounds kind of...?...I don't know? It can make somebody who is sensitive (like me) feel outright stressed, or even stupid...instead of valued, excited, or even liberated.

 

[Jfpinell]

It can make somebody who is sensitive (like me) feel outright stressed, or even stupid...instead of valued, excited, or even liberated.

I'll admit I'm the same way. That's the other big reason I wasn't very good in police training. I just found it rather hard to scream at times. I'm getting better, and I fully credit those courses more than anything else in helping me with that and to not take almost everything personally. But I'm just pre-wired to be more sensetive than most -or at least more willing to show it than most men are! (funny, but true!)
There are PLENTY of times I've told people "I don't feel up to driving today". So to me that's not the issue. (Pa is the one in fact, I recall one time saying "Don't tell them [Doc.] about the little seizures you're having." -I was at home yet, and he desperately wanted me to have a life like everyone else in the family. Hmmmm...which one of us is in denial here? First everyone treating me like I'm as fragile as an egg, then 20 years later "oh you're fine. there's nothing wrong with you, don't tell them about the little seizures you're having", and what-else-not.) What it boils down to for me is that, after almost 40 yeas of having the same exact sequence of events (aura wise), having the same kinds of seizures, knowing how far each one is going to progress by the intensity of it, etc., I feel perfectly safe doing jobs involving public safety or I would be able and willing to tell myself, just as I have my driving, I don't feel at ease doing it. I guess what I'm saying is what bugs the heck out of me is when other people think they know you better than you do. (To me, there's only 1 man who can do that...and He can walk on water!) Other people have no more right telling me (us?) what my (our?) seizures are like and what's safe and what's not, than I would telling a diabetic (which I am not) what their condition is like and what they can and can't do, or trying to tell a mother that childbirth doesn't hurt that much. (I'm a guy) -I think the saying is "Don't judge a man until you've walked a mile in his shoes".....?

 

[Rae1889]

The phrase "First of all" just means that he has more than one point to make...

 

[epileric]

The phrase "First of all" just means that he has more than one point to make...

Thanks Rae, that is exactly what I mean & I"m glad you understand it. I do however also appreciate elizzza811 letting me know how I come across.

We're communicating online where we have no use of body language, eye contact, or verbal intonation so the likelihood of misinterpretation is much higher. I never intended that phrase to be condescending but now that it's been mentioned I do see how it can be read that way.

elizzza811, I do apologize for that. I myself am often hypersensitive and always have been so I'm surprised at myself for not being more aware of how I've previously come across.

 

[elizzza811]

Epileric, thanks...it means a lot...and I apologize, too. I am especially sensitive though and do tend to zero in on anything and everything possibly negative (or perceived as negative), and you probably didn't mean it that way.

I've been fighting with doctors though for sooo long...doctors telling me my symptoms were 'all in my head'...that everything was coming back normal and there was nothing (physically) wrong with me...accusing me of 'doctor-hopping' and 'psychosomatic tendencies' in my records...refusing to order any neurological tests on me until I turned over my psych records (just because I have OCD)...and I knew something was terribly wrong with me. It took crashing my car to be believed, and that was psychologically very painful and damaging to me because it now affects how I react to everybody in my life. I used to be painfully shy (voted the 'shyest girl' in high school), but not anymore after all that with my doctors. Now I speak up...probably more than I should at times.

 

[Endless]

I've been fighting with doctors though for sooo long...doctors telling me my symptoms were 'all in my head'...that everything was coming back normal and there was nothing (physically) wrong with me...accusing me of 'doctor-hopping' and 'psychosomatic tendencies' in my records...refusing to order any neurological tests on me until I turned over my psych records (just because I have OCD)...and I knew something was terribly wrong with me. It took crashing my car to be believed, and that was psychologically very painful and damaging to me because it now affects how I react to everybody in my life. I used to be painfully shy (voted the 'shyest girl' in high school), but not anymore after all that with my doctors. Now I speak up...probably more than I should at times.

Elizza, oh, how true that is. After awhile it beats people down. Take heart, though. You stuck with it and that makes you one of the strongest people your friends and family will ever know. Know you are loved and valued here.

Lunacy, So sorry we hijacked your thread. We are usually a bunch of fuzzy bunnies nibbling grass in the yard.

 

[Jfpinell]

We are usually a bunch of fuzzy bunnies nibbling grass in the yard.

Cute. I gotta' remember that one!

Anywho, nothing personal Eric, don't mean to come across off-key. I've just always had a hard time "reading" people. Especially the extreme extraverted, tell it how it is, kind. (Part of my heavily wired sensetivity for people). I've just tried SO many things from so many different angles, some of which (like the truck driving program) were more of a desperation...not a goal of completing something but just to complete anything. Every time I took those interest/apptitude things, one never matched up with the other. I've spent about 15 years at Tech. college trying to complete just something for myself to have a "normal" life. (Actually the last 8 or 9 I've been volunteering every semester for Defense and Arrest Tactics simulation testing at school. Even if I never get to be a sworn officer, if this is as close as I can come to law enforcement, so be it, I tell myself. -At least it's given me something to feel like I've been at least partially successful in something.) I'm more able, cognative and physically, than to spend my life at some sheltered workshop earning less than min. wage (how/why they get away with that is beyond me), or sweeping floors or pumping gas all my life. I've been in that atmosphere, and it never went anywhere (even though it was supposed to I was promised). Some of it I'll admit may be psychological: after being overly sheltered and then suddenly looked at as "perfectly capable" like everyone else at home was, there's probably a piece of me that feels that I have to succeed to make the rest of the family happy. (I should be able to tell myself otherwise, but it's getting to me.)
Part of it for me though is, as I've said in posts before, there's only 1 man who can know you better than you know yourself....and He can walk on water. Part of me is saying "go for it! Among other reasons, to prove to others that we can do anything we feel safe doing if we know our condition good enough. We've been told "no, no, no, no, no" for so many years -many times out of fear and ignorance- it's time to tell and show the "average person" we can do anything they can. Actually in Defense and Arrest Tactics scenarios (that are required for D.O.J. certification) even though my instructors were paranoid to say the least about me being the guy that actually is the "prime target" (the one with the padded suit on they actually physically test out their arrest/take down stuff on) because of the ever popular "you'll get hurt" line, I proved them wrong. Getting thrown around and "arrested" in class didn't bring on any seizures. Now they see me different and actually ASK me if I wanna' be the prime suspect! If I didn't feel safe doing it, I certainly wouldn't. But just like anyone else, if I get hurt, it's my own fault. I'm willing to take that risk for something I like -just like anyone else. The difference is, because of fear and ignorance, many times we have to fight to show society we don't need to be handled like an antique china piece. Am I making more sense I hope?