Epilepsy Foundation

Hi everyone, new member here, so you get to see my first post. I'm glad I finally found a forum full of people like me who seem to be on here pretty often and about the important stuff too!

So here's my burning question for you guys. How has transportation (in general) affected your professional life? Has it made you unable to get a job, gotten you laid off, made you work from home, retire?

Five years ago, when the moniker "epileptic" was pinned to my lapel (oh, how I hate that term,) I didn't realize how big a shift it was going to cause in my professional life, due solely to getting around. I originally had to quit my job since I had brain surgery and post-op therapy, but then came the challenge of even getting out to interviews! Now, I live in a pretty big city (Atlanta) where you would imagine public transportation would be fundamental to its growth. But, the routes would be as inconvenient as the times the buses came by to pick you up (if they even did.) As you move towards the suburbs and other counties, however, other "locally-run" buses take over and it just becomes a mess in trying to figure out how to get from Point A to Point B. And don't even get me started with the lack of sidewalks. 

So, I'd love to start a discussion with my new friends on here about their own experiences, how they've dealt with it, or their own frustrations. Please feel free to add your location as well.

Tags: transportation

Views: 384

Replies to This Discussion

Mark,

I really didn't start having issues with seizures until about 6 years ago, and I worked from home at the time. By they time I worked in a office, things had cleared up enough I was fine to drive. Which was good, because though we have public transportation where I live, if you don't go a straight show north or south it is difficult to get around.

I have been working from home again since 2007 for the most part, so I don't have this issue. HOWEVER, I am interested to see how others handle it. I can drive right now, but due to some things coming up in the future (in patient testing and rehab) I probably won't be able to for a while.  Atlanta seems to be a hard place to get around. I haven't never lived there, but that is what I have heard.

Does the public bus service have any on call services they offer? Here you can call in and get a small bus to come get you within a certain time frame. It costs a little more but is very helpful for those that cannot always work with the regular bus schedule.

Hi mark,

I had to leave work 4 years ago. Got depressed, home - bound, the whole 9 yards. Until three years ago when I started working from home full-time (I worked from home part - time for about 8 years now) and its been a blessing in disguise. I've done more for people in the last 4 years I've worked from home than in my 20+ years of working a job and driving.

If you want information on working from home, let me know. In fact, I have a blog in the works exclusive to us epileptics as to why working from home is the best thing we can do for many many reasons. Once my blog is completed, I will post it on my profile for all to see.

Alex

SK

Thanks for your reply and I'm glad to hear you can get behind the wheel (even if temporarily :) ). I'm now able to drive too, as I've passed through the legal time interval. Atlanta IS horrendous. It was even a reason I moved up to DC so I could actually get around! Moving back down, I've been looking more into community services that help populations like us and it's really dismal.

I believe there is one or two organizations here in Georgia aimed at helping the generally disabled (and elderly) get around (both state run) but most you would find would be 'initiatives' set up within the already mucked-up public transportation system. (ie - people with disabilities get to ride free on our bus, but only if you make it there first!) There IS a call service, but of course that entails lots of paperwork and red tape in order to get your bus to come pick you up. And it is only available in the main county in Atlanta, not in the surrounding counties. 

It would be interesting to see if there were any successful non-profits or businesses who have catered solely to the pick-up drop-off needs of people like us.

Hi Mark, welcome aboard. Living in the Boston area I've always had great access to trains and busses. Due to my seizures getting worse I can't work anymore. The same system that runs the trains and busses also has cars and mini busses that take the disabled from door to door. So I concider myself very lucky.

I know this sounds extreme, but I took in a friend. In Exchange for free room and board, he drives me everywhere. It's been a huge help and has saved me from the stress and confusion of public transportation.

Hi Mark - glad you are here.  The forums are a great source of info, commiseration, or just a place to vent.

@ S. -- sounds like a good trade off.  And if you are both OK with it, why not?

I live in TX in the boonies near Austin.  There is no bus service out to here, and even if there was it doesn't go where I need to go. My husband drove me to and from work everyday for 2 years plus- about 30 mins each way. 

My seizures are well controlled now and I am cleared to drive, which is good (waaay too much togetherness!). My problem is that I'm OK for local trips - grocery, church, etc. - but nervous driving in traffic or on the highway.  I'm 53 and have been driving for more years than I care to admit and the seizures only started 4 years ago, so it's not like I'm an inexperienced driver.

Anyone else run into this?

Used to drive until seizures started up. Now rely on public transportation. I miss driving but like everything else,I look at the bright side. What's gas cost now?

I'm glad to know that a few of you are in a place where you can drive now or are able to rely on public transit. I lived in DC for 2 years and the ability to get where ever I needed to because of the subway changed my life. Coming back to Atlanta is a shock to the system. Thankfully, I'm out of the woods myself and can drive as well. I feel for those in my area that can not, though.

@Kathy, my seizures began five years ago and had always been just spaced out enough that it wouldn't allow me to drive (one every 3-4 months). I too get very anxious when I begin driving long distances. My mind starts into warning mode, asking me "what if I were to have a seizure right here, on the highway??" I've actually had to pull off on the side of the road because of it before. No seizures of course have ever come from it, but I did go in to check with my neurologist. She told me that it is likely anxiety and I could have even developed a form of panic disorder. I can see how this makes sense, seeing what we go through each time we have a seizure. Maybe something like this applies to your nervousness on driving in traffic?

Mark it makes a very big difference in your life! I had family that said if you ever need help just call but when I called just recently my aunt to see if she would take me to the hospital because I was having problems her excuse of not being able to was that she had an appointment to get her dogs hair cut. To me that was a big cutdown that my health problem was less important than her dogs hair. I paid almost forty dollars using a cab to get to the hospital and back and must say I was a little upset when I was told to come back in a couple days and when asked my sister if she would take me she too found an excuse not to. I have to find an answer to this because I can't keep paying this much to get around and hate being by myself all the time so would like to find a job. Believe me I understand and so do many others.

@ Mark  Yes, I think a lot of it is probably anxiety. And not driving for nearly 3 years.  And having the attention span of a gnat.  I think the last two cause the first as my reflexes, reaction time, and all those things you do while driving that you don't even think about, are affected. So I know it's all in my head (technically and figuratively), but I'm still freaked out by it. My husband says I'm just out of practice and I've lost confidence.  Well duh, dear. Having something unpredictable that affects every part of my life will do that.

With meds, I haven't had an actual seizure in a while -  just massive dizzy spells and this weird leaning to the right thing. In theory, I should be able to just pull over, but in reality, I don't know.  Not near as bad as having a seizure, I know, but still could cause a wreck. Then I start worrying about driving and having a spell and having a wreck.  Stress is one of my triggers, so I worry myself into one...  Aarrg. 

So driving locally and keep trying to stretch myself to more.  So glad to have such a supportive husband who doesn't mind driving.

Welcome to the club, Mark. I just had my driving taken away last March. Had a seizure while I was driving. Living in a small town in Texas, public transportation is mostly friends ,mom & dad. And my brothers when they were home last summer. There is one bus company here, it serves like 6 or 8 counties. But you have to call them on Friday & schedule all your rides for next week. So it's really inconvient, because you can't just up & deside I want to go to Walmarts & go catch the bus. It's gotta be planned in advance, or you gotta call all your friends & cousins , & hope one of them isn't busy. But I'm driving again , my fear now is that one day I'll walk in to the doctors office & he'll say I gotta perminantly quit driving.

 

Hi everyone, I am also a new member of this group and this is my first response. Mark, I totally understand your situation. Personally, except when with family and friends, I am dependent on public transportation for everything. I do not know if you are a home owner, but if not you just may have to decide what is more important to you time or location and what is less stressful getting to and from where you want to live or living somewhere which is not your first choice. I say this because from my personal experiences of living and working in the Boston, NYC and the DC areas. When having to depend on bus transfers 10 seconds can cost an hour, the most frustrating being when you are just getting off one bus and you see your transfer drive away. Then sometimes have to wait up to an hour because that is when that bus returns. My experience has resulted in having to live closer to the city. As far out as possible, but with in walking distance from one of the last but stops on the main bus route, which may come every 15-30 minutes.

 

I also know the challenge of obtaining employment. Like you I have again been laid off. Finding a new job is like everything revolves around public transportation, especially the challenge of successfully matching employment opportunity, work location and public access. It is like playing the lottery and knowing you need a three way match to win. Winning just being getting the job, not if you like it or not.  Some people take how good they have it for granite which is obvious based on the amount of respect they show other people.   

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