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| Teresa and her mom |
Robert’s Sister: When were you or your loved one first diagnosed with epilepsy?
I was diagnosed with Primary Complex Partial and Secondary Generalized Seizures almost 15 years ago.
My mom was diagnosed in March of 2011 with seizures that seem to be originated in the temporal lobe. She is undergoing tests to determine whether her seizures are epileptic in nature or if it is a seizure disorder.
Robert’s Sister: How did you feel when you and then your mom were diagnosed?
I was young when first diagnosed. I was surprised; never suspecting to hear “You have seizures.” I did not know enough to understand the weight of the diagnosis. I soon learned all of the frustrations and disappointments that can arise when seizure control is not gained, in addition to how it can interfere with daily activities.
Fast forward almost 15 years later and my mother is diagnosed with seizures unexpectedly. My mom was hospitalized after she went missing for eight hours. She was found safely and admitted into the hospital. It was learned that in addition to a medication side effect, she was having seizures that caused her not to know where she was or what she was doing. When the diagnosis came, I was devastated. I know all too well what comes with the diagnosis.
Robert’s Sister: Did your family treat you or your mom differently after the diagnosis? If so, how?
When my mom was better than she is now, she had a tendency to be overprotective even when I was stable. On the other hand, she did not realize the importance of treatment and planning protocols concerning the stages of a seizure, triggers, the affect they have on cognition, emotional feelings, stamina and endurance, in addition to the periods of stabilization.
I experienced disbelief of seizures from other family members, some of which acted as if they did not know even when I held conversations with them about it and/or medications. Seizures were witnessed and then ignored. It was thought that if it was “over” after five minutes of “rest,” I was fine. Whether it is denial or just not wanting to deal with it, I don’t know. The majority of what I have received is being told what “so and so with epilepsy” can do and/or does regardless of medical advisement. I am compared to this one or that one. Everyone is different as is every case. What is not different is we all deserve support through care and concern. There is concern, yet it manifests in fear and misunderstanding.
The greatest support I received was from my cousin’s son. He was a young child when I was diagnosed. He understood what my triggers and limitations were, in addition to knowing signs, symptoms and what to do when I had a seizure. He understood what an adult denied. He is 17-years-old now. When I am around him and ask if he still remembers what to do, he refreshes it by informing me, which leaves me feeling safe knowing I have someone who has my back so to speak. I am forever grateful to him.
The family is concerned, yet not involved in my mother’s treatment and care. They do not wish harm to her.
Robert’s Sister: Did the kids at school treat you differently because you had epilepsy?
No. I was not treated differently when I began college. I am in a one-of-a-kind that supports individuals with waxing and waning chronic illnesses. I have been very fortunate. All of my classmates, who are adults, understand and lend support which makes me feel more comfortable. I know I will be cared for if I do have a seizure.
Robert’s Sister: What treatments have you or your mom tried? What has worked? What hasn’t worked?
Primarily, medication therapy has been used. Some medications have hurt me more than they helped. Therefore, they were removed from my treatment regimen. I have also utilized neurological rehabilitation, neuropsychological testing and treatment, psychotherapy, cognitive behavioral therapy (CBT), meditation/relaxation, support groups, vitamins and supplements and diet changes have been used. Avoiding triggers and minimizing stress to the best of my ability helps tremendously as well. They all have worked in their own ways. Another medical condition overlaps, causing seizures to breakthrough. This is currently being investigated to find a new avenue to take to alleviate the issue.
My mother is currently undergoing further testing. A medication is being slowly introduced to her regimen. When it is at a clinical dosage, my mom will then begin to wean from her current medication. Otherwise, she is advised to use stress management techniques and take supplements.
Robert’s Sister: Do you think the medications affect how you or your mom feel?
Medications affect cognition, which leaves me either on another planet or what many call “brain fog.” I was fortunate enough to go through neurological rehabilitation to learn a new way of learning which constantly needs modification. I believe medications do affect behavior and feelings. Seizures do the same thing. The addition of medication side-effects increases frustration, irritability, moodiness, anxiety and depression.
My mother has experienced changes to her feelings since being on anticonvulsants. Right now, it is believed that there may be psychotic symptoms triggered by the medication. Her moodiness, anxiety and depression have worsened since she has been taking the medication.
Robert’s Sister: Have you or your mom done any advocacy work (individually or with an organization) or participated in any research studies? What made you want to be involved?
I have advocated individually for myself and mother. In addition, I have done so with a program, called The Chronic Illness Initiative (CII) at DePaul University The School for New Learning. CII is in transitioning into the Center for Students with Disabilities at the university. I led a student group in advocacy for all of our related illnesses, including my seizure disorder relating to higher education, employment, socially, and by speaking at annual Symposiums and in the press. I have done so with my advisors, instructors, professors, physicians and community at large. I wish to do so with an organization, such as The Epilepsy Foundation. I have never participated in any clinical research studies other than completing market research interviews.
Advocacy is one of my passions. I have done it because I believe empowerment leads to liberation within, which can pave way for much positivity and strength. I believe awareness is necessary to break stigmas and to gain more community and public support. Organization and individuals within a community need more assistance. Awareness brings attention to their needs, which can be integrated with community support and/or continuing research for a better tomorrow living with epilepsy. Most of all, I want to do it to give individuals a voice. Everyone needs an extra voice to speak on their behalf. I know I need one besides my own.
My mother has not advocated or participated in any clinical research studies related to epilepsy.
Robert’s Sister: How has epilepsy affected your life?
Epilepsy has affected my life is many ways. Transportation is a great difficulty for me. I am unable to drive and living on a fixed income does not help with costs. I am not able to utilize public transportation when I am not stable as it can trigger a seizure and severe vertigo.
Seizures and the effect of them have interfered with attempts at maintaining gainful employment, missed deadlines, missed appointments, missed social events, not being able to be on a computer long, reading comprehension slowing, higher education classes, caregiving for my grandmother and now, my mother. Medication side-effects have caused havoc in my life ranging from weight gain to a suicide attempt (I was quickly weaned from that medication!).
It has affected my social life as well. Places I can go are limited as a result, which keeps me from one of my passions: supporting the local music scene! I have experienced those afraid I will have a seizure and have been treated differently. I use caution and plan as best as I can. I also educate whenever I can. However, everyone has their own perception. Even when I am stable and have not seized in months, I still experience others’ fears of it. Some relationships have changed or diminished as a result, in addition to the process of dealing with all that comes with epilepsy. When I have support, I am better off emotionally. The emotionality that comes with the disease is overwhelming at times. It peaks and valleys with the progression and stabilization of seizures. I also have the tendency not to open myself up to romantic relationships in fear of rejection. I am not epilepsy. Unfortunately, I have experienced many who think I am.
The main issue I continue to deal with today is severe periodontal disease and severe decayed, eroded and broken teeth. I only have 10 teeth left with no partials that fit. A great cause of the decline in my oral health was my medication. I had to take a custom-compounded version, which was pure chemical. Within two years, it affected my oral health. Due to lack of finances and public assistance, the work could not be completed. Now I am in a situation that can result in death. I have an infection which is treated with ongoing antibiotics. When my primary physician can no longer prescribe it, I will not have any. It can lead to my death. I am experiencing major health consequences as a result, including more breakthrough seizures thanks to medication to ease relentless pain.
I believe I am capable. My stamina and endurance is on a differing schedule than the modern world. I become frustrated with it. I do my best to go with the flow. I know I have it in me. I wish I had more support. However, I cherish what I do have and rely on the support I do have, in addition to my faith to gain strength when I have days I want to give up. My determination is something to reckon with.
Robert’s Sister: What is your favorite memory?
Relating to epilepsy, my favorite memory is having it acknowledged and treated like I was no different than the norm. However, precaution was set in place. When I did seize, I was in good hands. One good thing that has resulted is awareness and the ability to share my story with others to help another relate, feel better, be inspired or motivated and learn.
Robert’s Sister: Do you ever wish you didn’t have epilepsy?
There are many times I wish I did not have epilepsy. I would not have to be concerned about losing insurance benefits or medication which keeps me functioning; loss of my ability of caring for myself; a need for more assistance; having yet another seizure; injuring myself; dropping in public while alone and so on. The main issue is this: I could drive if I did not have epilepsy!
I wish my mother did not have seizures too. I do not think anyone wants another to have an illness. She is still grieving the loss of her driving privileges.
Robert’s Sister: What do you want people to know about epilepsy?
Epilepsy is a very real condition. There are many different types and causes of seizures that are epileptic and those that are not. Regardless of the cause, a seizure is a seizure. It affects the brain the same way. A recovery period comes after a seizure. It varies from person to person. Do not compare one epileptic to another. An individual may not remember the episode or how they behaved. They cannot help it. It is part of the disease. Once the seizure recovery period ends, the person you love will return to their norm.
Robert’s Sister: Is there anything else you want to say?
I kindly suggest being supportive when concerned about a family member, friend, co-worker and/or neighbor. Epilepsy is often misunderstood and carries many myths. If you are not sure, please lend an ear to listen and learn. Ask the person you love questions. If they do not know, assist them and yourself by seeking information together or go with to a doctor visit. Keep in mind, each case is not the same. Just because Person A can drive, it does not mean Person B can. Epilepsy may be challenging at times; however, many live productive and successful lives. It just may not be on the “norm’s” timetable sometimes. Each bit of your understanding and support can assist in one doing so. Get involved in a positive way!
Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or busine
I support the following organizations:
Thresholds (Emotional/Mental Needs);
Chronic Babe (CI Support);
Rest Ministries (Christian CI Support;
www.caregiving.com (Caregiver Support);
I am working on my starting own blog. Until then, I have a photography website where my photographs can be purchased at www.artistrising.com/galleries/tespics. My work is also featured on www.art.com and www.allposters.com. Search “Teresa Stallone” and my name will appear leading one to my work for purchase.
Robert’s Sister: Thank you, Teresa, for sharing your epilepsy story and your mom's too!
Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.” Check back tomorrow for our next story! If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net. Robert’s Sister: Thank you, Teresa, for sharing your epilepsy story and your mom's too!
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