Some of us Mainers on the website for the Epilepsy Foundation of America were trying to figure out what to do for November, as it is national Epilepsy Awareness Month. We complained that the Foundation didn't even have an office here in Maine because we are still, as a state, considered a suburb of Boston. Also, we complained that there didn't seem to be any epilepsy support groups here in Maine.

Some of us are working to change all of that.

We began a letter writing campaign to get Gov. Baldacci to proclaim November to be Epilepsy Awareness Month for the state of Maine and we are waiting for the final process to occur and final word from Dan Cashman at the Governor's office to be received by our e-community representative on the Epilepsy Foundation of America website at http://www.epilepsyfoundation.org where we have an e-communities forums pages for support and advocacy for those with epilepsy and their families/caregivers and those interested in first aid for seizures, diagnosis and treatment, legal rights, etc.

One of the forum members has also been in touch with national representatives so that an Epilepsy Foundation of America affiliate office can be up and running for Mainers the newly diagnosed or those with epilepsy and their friends/family/caregivers etc. I will let you know how that progresses and when the proclamation is made by the Gov. for recognizing November as Epilepsy Awareness Month here in Maine.

Two of us have scheduled Epilepsy Support Groups and wondered if we could get them listed on the Ability Maine calendar of events. Their dates, places and times are as follows :

Saturday Nov. 11 from 2-4pm at Maine General Med. Augusta, Conference Room #1

Nov. 29 from 6-7:30pm at Eastern Maine Med. Center.
Contact Nicole at NDemont@emh.org

Anyone wishing to contact me about the Augusta support group can reach me here at scribelac@earthlink.net. I do not have an e-mail address right now for the woman who set up the Bangor support group but people who are interested should contact EMMC for more information. Both of these group meetings are the initial meetings so agenda etc. will be discussed then.

Leslie Collins

The state of Maine is served by the Boston office of the Epilepsy Foundation of America. The website for the Epilepsy Foundation of America ( EFA ) is www.epilepsyfoundation.org . One of its campaigns is to educate people on how to recognize a seizure and how to give emergency first aid to a person experiencing a seizure.

It is an absolute myth that people with epilepsy may swallow their tongue. Therefore, nothing should be placed in the mouth of a person experiencing a seizure.

Would you be able to recognize the many forms of seizures especially those that are not grand mal seizures, known as Tonic - Clonic events ?
Would your physician be able to recognize complex-partial seizures or distinguish the difference between Temporal Lobe Epilepsy and mental illness ?
Epilepsy is a chronic neurological disorder affecting the electrical activity of the brain and not a mental illness. It is not contagious.

Some people having seizures are mistakenly arrested and die in the back of police cruisers because they are restrained and placed face-down, or are they are blue papered into emergency mental health beds because first responders and even some emergency room personnel cannot recognize the various forms seizures can take. Here in Maine it is common to receive a ride in a police cruiser instead of an ambulance when experiencing a seizure.

First responders and even emergency room personnel have ignored Medic Alert ID bracelets and necklaces in the past.

Panic, anxiety, phobia, and even psychosis can be a direct manifestation of a seizure, either pre-ictally ( before ) or post-ictally ( after ). Spending five or more days in a mental health unit in a hospital without an experienced neurologist on staff for evaluation and consultation is not a proper placement for a person with or suspected to have epilepsy. A misdiagnoses of mental illness such as bi-polar disorder can result in treatment with anti-psychotics or other medications that lower the seizure threshold, inducing more seizures and the exact symptoms the medication was used to treat.

Mentally ill Mainers who are on medication for their illnesses may have seizures as a direct result of their medications. Diabetics may also experience seizures, as can those with thyroid disease or iron overload disease. Many women may have seizures in direct relation to their menstrual cycles such as in catamenial epilepsy.

The Epilepsy Foundation operates the Jeanne A. Carpenter Epilepsy Legal Defense Fund to assist those with legal questions relating to their rights as persons with epilepsy. The EFA website describes many cases of inappropriate seizure response by police and first responders, some of which have lead to the death of people with epilepsy or their inappropriate incarceration, prosecution, and conviction . The foundation is working to have police and other first responders adopt their appropriate seizure response protocol.

In 1994, the Foundation joined with the Police Executive Research Forum to develop a video training curriculum entitled "Take Another Look : Police Response to Seizures and Epilepsy" in order to promote a better understanding of the responsibilities of police and first responders under the ADA. According to the EFA, The US Department of Justice uses a shortened version of this streaming video on their website entitled "Police Response To People With Disabilities". Information on obtaining the current EFA training curriculum for police and first responders is available by contacting the Epilepsy Foundation at 1-800-332-1000.

It is difficult for those with epilepsy to obtain and then maintain employment especially when their medication loses effectiveness or is changed for other reasons. In a rural state, such as Maine, it is also hard to obtain transportation to a job. Transportation to medical appointments is also difficult to obtain. The current income limit for transportation assistance in Maine can be lower than the income received under Social Security Disability.

The closest comprehensive epilepsy center is in Boston and I only know of one epileptologist in the state of Maine. An epileptologist is a neurologist who specializes in epilepsy. As one could guess, she is located in Portland where most medical specialists have clustered. Her name is Dr. Heidi Henninger.

On March 29, 2006, Senator Olympia Snowe received the Distinguished Leadership Award in recognition of her support of people with epilepsy. Currently, the Epilepsy Foundation is still working to help restore the full 7.6 million dollar funding to the CDC Epilepsy Program after the US Senate voted to cut the program back to only 3 million.

Seizures may be triggered by fluorescent lighting found in some stores and offices or even the contrast on a computer screen. Flashing elements on computer screens such as those found in pop-up adds, tech support chat windows, or on video games and TV commercials can also trigger seizures in some susceptible photosensitive individuals. Loud noises, reading or drawing, as well as music can trigger reflex epileptic seizures as well.

Children can encounter multiple difficulties in their learning as a result of epilepsy and the medications that are prescribed to treat it. Perhaps the most severe side effects of treatment are poor memory and sleepiness.

It would be wonderful if Maine could acknowledge November as Epilepsy Awareness month so that people would be able to recognize seizures and be able to respond appropriately to them. Eradicating stigma is another goal of epilepsy awareness education.

As a guide, I suggest people go to the Epilepsy Foundation website (http://www.epilepsyfoundation.org) and learn all they can about how to recognize tonic - clonic seizures, complex partial seizures, temporal lobe seizures, and adapt the first responder/police measures found on the site for those witnessing or responding to a seizure.

Leslie Collins
scribelac@earthlink.net

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