Teresa participated in our interviews during Epilepsy Awareness Month in November 2012. Teresa impressed me because she not only had to navigate advocating for herself because of her epilepsy, medication issues, insurance problems and severe periodontal disease but because she was also a caregiver to her mom!
|Teresa Stallone with her|
Teresa continues to have a full plate of advocating for herself and her mom but she perseveres. (That seems to be a common characteristic in the people being interviewed.)
Teresa and I have kept in touch over the past few years and even play Words with Friends together. It is a great way to stay in touch and to take a minute from our caregiving duties. Every little bit helps!
Let’s see what life has been like for Teresa since the last interview.
Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.
Epilepsy has affected my life in many ways and continues to do so. I do my best not to allow it to interfere as it does not define me. It isn't who I am. Unfortunately, it does interfere with life, especially because it is not completely controlled.
Seizures affect every area of my life. They affect gainful employment, my formal education, socialization, relationships, appointments, commitments, and participation in certain activities, and most of all, my independence. I cannot drive as a result. Spontaneity is all but gone. Transportation is a great challenge and doesn't seem to be any easier to deal with as the years go by. I find it to be even more frustrating. It also affects the level of my ability as a caregiver.
Robert’s Sister: What is the most significant change in your life since our last interview?
The most significant change is my medical team. I rebuilt it from the top down so to speak after my primary care physician left her practice. I also experienced several life changes and a hospitalization that resulted from heatstroke, which triggered a combination of seizures and an intractable vertigo and migraine attack.
Despite having to do so, it was time even though it felt scary. I knew I needed a fresh pair of eyes as my treatment became stuck in a rut due to the complexity of my case. Lack of communication between my physicians became the norm. I felt like a ping-pong ball and somehow lost control of the management of it. I had to be the captain of the ship along with my primary care physician and specialists.
Since the change, there has been a huge difference in my care. My physicians communicate with one another, especially when I request it. With the exception of a couple, they all belong to the same healthcare system so my information is readily available for each to review. I am treated well and acknowledged as the head of my team. I have the final decision as I am the one who chooses the route to take based on their expertise. They do not treat me as if I am a burden to their caseload because I have a complex case. It helps a great deal to trust and know my physicians care about my health through the peaks and valleys. These days I hear, "I am on your side." That is a direct quote from my general neurologist.
Another significant change is I was accepted into a program that helps medically compromised patients who otherwise cannot afford major dental work. After a year of work, all infection was cleared. It is no longer compromising my health or jeopardizing my life. I have teeth now and can smile again!
Robert’s Sister: Has the treatment changed for you?
One of the first things my neurologist did when I first began to see him was increase the dosage of my primary anti-convulsant. Desired results were not achieved so another medication was added and he referred me to an epileptologist. I was taken off of medication for another health issue as it was learned that it was causing me to have more seizures. From that point on, it was decided that one or both must clear me when adding certain medications, having procedures that require sedation or anesthesia, and partaking in high-risk activities. I am provided with more guidance.
I will be having an inpatient EEG soon to learn more about what is going on as I have a working diagnosis of intractable seizures. My neurologists want to learn which part of my brain the seizures originate from so they can provide me with better treatment.
Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?
I've experienced more memory loss, issues with retention, comprehension, and focus, in addition to weight gain, muscle cramps, and irritability. My level of frustration has increased as well. The long-term effects of seizures and medication side effects have taken their toll.
Robert’s Sister: What caregiving help do you use?
My friends, including online and a couple of family members lend emotional support. When in my presence during a seizure, they do take charge and provide seizure first-aid and care. My friends and neighbors drive me to doctor appointments and to run errands when they are able to do so. If I have seized and cannot do it on my own, I have a friend who will go to the store for me when available. It is all very helpful. I also see a neuropsychologist who helps me with my coping and cognitive skills, in addition to the side effects of living with seizures. Otherwise, I'm the caregiver in my household.
Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?
In some ways, it has improved as a result of treatment, behavioral, and lifestyle changes. Even though my seizures are still not controlled, I am having less of them now than I did four years ago. On the other hand, it has remained the same because desired seizure control or management has yet to be achieved.
Robert’s Sister: What has been your favorite moment these last four years?
My favorite moment has been completing major dental work! As a bonus, I finally found a very kind, understanding dentist who does phenomenal work!
Robert’s Sister: What do you see for yourself or your loved one in the next four years?
I see my health stabilizing to a manageable level. I also see myself turning my life experience, passions, and advocacy skills into a substantially gainful career as a result. In addition, I see myself having the time to dedicate to writing whether it be starting a blog (finally!) or a book.
Robert’s Sister: Is there anything else you want to say?
Make it a habit to let people and places, such as dentist's office know that there may be times last minute cancellations will occur due to seizures. Ask if there if appointments can be scheduled around that chance happening to minimize inconvenience for all involved. Stress the fact that you have no control over a seizure occurring or how you may be afterwards. Recovering from a seizure is priority.
I would like to stress the importance of educating those around you about your seizure type, patterns, and any set protocols you may have so they know what to do in the event one occurs while in their presence. This also includes healthcare professionals as not all of them are trained in seizure first-aid. I've learned this by experience.
I also encourage people to educate themselves and ask questions. It helps in order to support the person in their lives who experiences seizures, in addition to dispelling many myths surrounding epilepsy. Sometimes, we forget to inform you. Remember, there are general guidelines and similarities; however, every person experiences something different. Do not fear! We know seizures look scary and are difficult to witness. Imagine being the person going through it! Keep in mind that holding awareness is key in helping and supporting your loved one.
Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.
My website as a doTERRA Wellness Advocate is https://www.mydoterra.com/tmstallone. My photography website is http://www.artistrising.com/galleries/tespics.
I support the following organizations and support sites:
Epilepsy Foundation of Chicago: http://epilepsychicago.org/
The Epilepsy Network: http://theepilepsynetwork.com/
Robert's Sister: http://www.robertssister.com/
Many thanks to Teresa for her time! What I love about this follow-up interview is the hope that shines through in Teresa’s answers.
I am happy to hear she found such a great dentist during these last four years. It is amazing how being comfortable enough to smile again makes such a difference.
I am also thrilled to hear about the positive changes happening with Teresa’s healthcare team. Every patient (and caregiver) in the healthcare system should be recognized as the captain of their ship and to be told “I am on your team.”
We should settle for nothing less.
(Oh, by the way, it’s your turn Teresa.) J