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Paratransit
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Norton47 posted:
Hi everyone,
I'm searching for advice from all of you concerning how you get around. Not only am I epileptic, but serve on a number of boards and commissions in my city of Worcester, MA. Lately the local RTA has been reevaluating people with seizure, but have no real experience about the condition, partial or generalized. With this in mind many are having their paratransit rides listed as conditional, or eliminated all together. Will this take your independence away? It seems to be a matter of discrimination for all that have hidden dissabilities, including seizures. I have given the Executive Board, Bus Drivers, and other riders a good show at times. With noone knowing what was happening, due to the lack of education regarding our condition. Many are being asked to schedule their seizures 24 hours in advance, if I could do that I would never schedule at all! Travel training is of little help to many only because of their inability to speak, or predict when a seizure is going to happen. But I need all of you to speak up now, and provide me with some ideas on how to fight this issue. I'm currently working with veterans returning from Iraq, many who now suffer from various types of seizures due to traumatic head injuries. But the only way they are able to recieve assistance if if their legs were blown off. If Dancer or others, including physicians can provide some insight I would greatly appreciate your assistance.
Thank You
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dancer86442 responded:
Hi Norton,

First I want to Thank You for replying to Gator. Thank You!

Norton, this is a problem that faces all of us. I Wish there was a simple solution. But, besides Public Transportation (Bus or Cab) the Only resource left to us is Family, Friends & Neighbors. Even, possibly, co-workers. Share Ride Makes Sense to me.

You are dang Rite! It's discrimination! I'm not sure Education of Seizures would change these PPL's minds. Especially, since they have seen You in 'action'. But, if you think it Mite help, then contact your nearest Epilepsy Foundation. (Site/link listed in Resources) They have Videos Info Pamphlets that may prove useful. I know the Videos are being used to educate Police & EMT's in some areas. That may be the way to get the ball rolling. Also, if you can prove discrimination, you could ask the EFA about the Jeanne Carpenter Legal Fund, set aside to assist those w/ Ep & Legal issues.

Hon, Our noted 'Expert' didn't last long. Sooo, No Physicians on this Board at this time. Although WebMD is searching for a New Dr for us. But, if his/her replies are anything like the last 'Expert', welllll, it ain't worth having any 'Experts'. Except those who 'Have Been There, Done That'!

I truly wish I had a Solution for you. Maybe Angie or others' may have some Ideas. Let's Hope. Keep cheking in. Angie is on Vacation at this time. Hope to hear from her soon.

Love Candi
 
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saxofone1 responded:
Hi Norton47,

I understand your frustration regarding transportation.

Some five years ago I lived in Mpls. Much of my transportation was provided by the city bus lines and the medical vans. There was a time when they tried to cancel my eligibility for such services because my seizures had been, at that time, under control. I talked with the local EFA and my doctors about that concern. The doctor(s) wrote a letter basically saying that because of my ineligibility to drive due to epilepsy(regardless of the seizure infrequency) that it the med vans and buslines were needed for me to get to/from appts, stores, work, etc. My services were not revoked because I had the medical right to such transportation.

I now live in Vegas. Since my time in vegas I have used their paratransit system to get me to appts, stores, etc.

In the resources I posted the Minnesotahelp phone and website. This group is often able to supply answers to many concerns or lead you to the place to find them.

Is there a CENTER FOR INDEPENDENT LIVING near you?
They too help many people with disabilities(visible or not) find the services that are helpful to them.

Hi, candi. I'm still in mpls and should be back home july 6. Dana says, "HI."

If I think of any other source that might be helpful, I'll let you know. Check with all of you as soon as I can.

good luck, norton47
angie
 
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Norton47 replied to saxofone1's response:
Thanks, I appreciate any additional input. I took the local RTA's advice and plan on seeing a travel trainer. They plan on teaching me how to get from one location to another assuring me that there won't be any seizures. This should be interesting seeing the doctors have been trying to teach me this all my life. I have already provided them with a good show, having aseizure on the busas well as before the RTA executive board. I would note that they had no idea what was taking place, and the public needs training regarding our condition. I refuse to be instituitionalized inside my home. As for the local independant living center, they only recognize visual disabilities as well!
 
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dancer86442 replied to Norton47's response:
Hi Norton,

How do they Train you? That makes No Sense! Are they 'rocket geniuses' or what? I could understand "training" if you were Mentally incapable, but, we have Full mental Capacity, even if it is 'disrupted' periodically. HEHE I'd just Love to be a fly watching them 'Train' ya to have No Seizures while en route. HEHE

As for the Local Independent Living Center, Wel, Hon, That is Discrimination, also. At least it is in my Book! How Awful!

If we want these 'ignorant' PPL to Learn, we have to teach them ourselves. For Now! But, Some Day, Maybe, our Disorder will out rank Cancer, Alzheimer, Erectile Dysfunction, etc & the Public will be Informed.

We can Dream or we can Do! You are doing a Great Job. Keep Going. One Step at a Time. Your efforts Will be Rewarded. Don't let the Ignorant stop you!

Love Candi
 
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Norton47 replied to dancer86442's response:
Thank you for all your support, it's easy to loose all your energy fighting such a battle. I only wish that people like us could gain recognition without having to display our conditions.

Have a happy 4th of July, even if your can't drive, your friends are still there for you.
 
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dancer86442 replied to Norton47's response:
Hi Norton,

You regain your energy. You educate yourself. You continue to be You. Have Faith in yourself & don't let Epilepsy Rule.

My Friends will be All around me. And I got a Good view of fireworks off my back porch. Hope you have a Happy 4th of July, too.

Love Candi
 
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saxofone1 replied to Norton47's response:
Hi Norton47,

Have you reviewed the ADA? Check it out; there should be a law that states your rights about receiving transportation in regards to your concern.

Let us know how things are going.

I think that if you are to be denied of those transpo services, you have been discriminated against. FIGHT FOR THOSE RIDES/SERVICES.

chat with you later,
angie
 
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Norton47 replied to saxofone1's response:
It's good to hear from you, I needed some excitement this 4th of July. Theres little excitement being stuck at home due to no public transporation, including fixed route service. Hope you live in a better area with more accomodations.
 
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pennsygardener responded:
Its just ironic that I'm posting this a day after the 4th of July. When you are no longer able to drive, you feel helpless and no longer independent. It helps when I am able to ride the public transit, or walk. I've occasionally taken a cab.
Maxine
 
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galivantstom responded:
If you live in metropolitan Detroit, you have the worst public transit system in the nation, and you have my sympathy.I expect Worcester is better. I have epilepsy and live in the Detroit area so I know from whence I speak. Not driving is a big pain but, it is is a relatively small price to pay when you look at it from the perspective of 1.) the financial exposure you incur by driving contrary to state laws and/regulations. In fact, this could even invalidate your auto insurance making you personally liable and 2.) the very physical threat you are to others and yourself. When your seizures are controlled and you can driveonce again, you'll recognize driving for the privilege it is. During the 35 years I've had epilepsy I found out who my real friends were. I had friends at work who immediately offered to share their transportation to and from work, friends from a civic commission who made sure I got home after the meeting ended as did friends from my local Rotary Club. My wife, mother and sons also helped make my life better. To do this, the very first thing I accomplished was to NOT hide my epilepsy. It is only then friends and family know to step up and help. You'd be amazed to find how many do, even some co workers you don't even care for. Remember, friends and family, your true support system under conditions are what makes the world go round. Just give them a chance.
If you envy the support given to wounded veterans, it exists because others recognize the need. Keeping your "hidden" handicap a secret is effectively denying yourself from the very support you desire. As for your job and possible employer discrimination, epilepsy is a disability under the ADA and as such, there is nothing they can do because of that unless you drive for them and they have to make every effort to accommodate your handicap.
 
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galivantstom replied to dancer86442's response:
Dancer just keep in mind that there are some protections in the ADA. All too many people with epilepsy don't realize that epilepsy is a handicap under ADA. Job issues can be addressed at the federal level and in many states as well. As for EMT training to recognize deal with seizure victims is much better than it was 35 years ago when I had my first seizure. Locally, it is necessary that individuals and epilepsy educate the general public. Epilepsy is similar to diabetes in many ways. Diabetic groups and individuals with it have done a great job educating the public and eliminating the misconceptions about. We need to do the same.
 
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saxofone1 replied to Norton47's response:
Hi Norton47

I have been in mpls the past two weeks. The transpo service out here is still great. I feel comfortable using it since I lived in this area for 14 years. I've been here and there. I had the chance to visit with my former doctors at an epilepsy clinic. I also visited the hospital where I had my lobectomy done in '02. Many of the nurses remembered me. I'm hard to forget. Outspoken, helpful, supportive and rather cute.

Las Vegas has good transpo service for the individuals who can't drive. There are many bus lines and there is also a paratransit service that provides door-to-door service.

I understand how you feel about being stuck at home. I broke my ankle on some ice in '05 and was stuck with nothing to do and having a short range of travel. BORING!!!

Is there a school, library, VA hospital near you? Activity(away from home) might bring you some peace of mind.

Take a walk to a local coffee house and become a regular. You'll be surprised as to where your support comes from.

Keep moving forward.
angie
 
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dancer86442 replied to galivantstom's response:
Hi galivant,

Welcome to Epland & Thank You for your responses to soo many posts, last nite.

I am well aware of the ADA & that Epilepsy falls under it's protection. I wish I had taken advantage of the ADA 35 yrs ago, when my T/C's reappeared. I didn't consider myself disabled, even though I knew I was. I just made up my mind that I didn't Need disability. That the Poor & Viet Nam Vets deserved it more than I did. I had Family & Friend Support. That was enough for me. As they say, Hindsight is better than foresight. And now, I can't get disability. I re-married when I was 38 & Hubby, now, has to many Cars (assets) for me to be eligible. I've tried to get him to remedy this. (Place a non-op vehicle in my son's name & sell his Bike (which he Wants to do) & I can apply again. ) I think! I just read SSI considers any material possessions over $2000 as Assets. But, 1 Vehicle Home was allowed.

You are rite about educating Others. We must All be More Outspoken about our Epilepsy. Like you, I have Never tried to Hide my Epilepsy. Anyone who will listen, gets an earful. It mite drive PPL Crazy, but, it Keeps me Sane.

Again, Thank You for your Input. I do hope you will chek in again & share More w/ me & others who need advice/Input & Support. HUGS!

Love Candi
 
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Norton47 replied to saxofone1's response:
Hi, I like your idea about a walk to the local coffee shop, especially since I consume so much to keep going. As for other activities I serve on the Worcester Commission on Disabilities, Housing and Urban Development, City Managers Advisory Cabinet, and finally the Transoportation Advisory Board. It may not seem it, but all of these groups and work that I do, center around the elderly and disabled. Trying to ensure that they have proper housing, public transportation, easy access to medical and shopping facilities, and even my work on emergency preparedness and homeless individuals. Many of whom have physical an mental disabilities. There is no salary for this work, but advocating for those in need is payment enough. I have never tryed to conceal my condition, and my seizures made sure of that. Theres nothing like a hands on experience for those in need of educatiion. Thanks once again for all of your assistance and concern.


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