Latest posts from Living Well With Epilepsy
During this age of hand sanitizer, quarantines and national lockdowns, how will the current health system handle the needs of those living with chronic illness. In order to quell my own curiosity, I developed a survey on telemedicine. Since knowledge and understanding is an early barrier in healthcare it was important to have a sense of how well the general public understood the term “telemedicine”.
So, we ran a quick poll on Facebook and found that more than 60% of respondents did not know the terms “telehealth” or “telemedicine”. This quick poll was viewed by more than 1000 people, and more than 75 people actively participated in the poll.
According to the Health Resources Services Administration, telemedicine refers to remote clinical services offered by a healthcare provider. This can be done using technology such as videoconferencing.
As noted in an article featured on mHealthIntelligence, “COVID-19 is different because we do not know all the factors surrounding transmission and its effects on patients,” Jason Hallock, Chief Medical Officer for SOC Telemed, points out. “Because coronavirus is new and there have been a significant number of deaths, the uncertainty surrounding that is scaring both patients and the general public. Our healthcare workers do not have all the answers yet. Telehealth providers are challenged to make recommendations when there are still many unknowns. Telemedicine can be useful to evaluate and reassure patients in alternative settings, and also can be used to help patients decide who needs to be seen in the hospital or an alternative setting like an urgent care.”
Hallock says telehealth can help by enabling healthcare providers to treat isolated patients, thus preventing the spread of what has so far been an extremely contagious virus.
If your neurologist has not yet suggested a visit using telemedicine, you can bet the opportunity will come up soon enough. Please take a minute to complete our survey on telemedicine in neurology below:
This post is part of the Epilepsy Blog Relay™.
My name is Rachel Skaug, formerly Rachel Kaalberg, and I had epileptic seizures as a child. My seizures started at four months old, which was in 1988, and lasted until I was 10 years old.
I am from Madison, Wisconsin. Much of my testing happened at Mayo Clinic in Rochester, Minnesota. I had many tests such as blood tests, EEGs, PET scans and MRIs. I tried many medications and the ketogenic diet (a diet high in fat, low in protein and low in carbohydrates). The diet forces the body to burn fats rather than carbohydrates. It is sometimes used to help control seizures under strict medical supervision.
Medication and dietary changes did not work for me. Therefore, I had to have surgery — I had five surgeries. Three in 1997 and two in 1998 at a hospital in Rochester, Minnesota.
My parents stayed at the Ronald McDonald House in Rochester, Minnesota, during my hospital stays. My younger brother stayed with numerous relatives. The last surgery I had was the miracle that stopped my seizures, and I discontinued medications a year after my surgery. During the last surgery, they removed a 50-cent-sized piece of my right temporal lobe, which stopped my seizures. Today I have been seizure free since June 10, 1998, and still going strong.
After my surgeries, the doctors diagnosed me with Tuberous Sclerosis (a genetic disease that causes benign tumors to form in many different organs — primarily in the brain, eyes, heart, kidney, skin, and lungs). I do have a few issues with comprehension, such as remembering what I read, but I work hard remembering things in picture format to understand what I read.
According to the National Institute of Neurological Disorders and Stroke, Tuberous Sclerosis is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It usually affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.
The disorder affects as many as 25,000 to 40,000 individuals in the United States and about 1 to 2 million individuals worldwide, with an estimated prevalence of one in 6,000 newborns. Tuberous Sclerosis occurs in all races and ethnic groups, and in both genders.
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Now I am a healthy adult with a family and no medical issues for me or my daughters. Every two years I continue checkups for lesions on my brain and in my kidneys. My experience was tremendous, and all the doctors and nurses that worked with me were great in helping me beat epilepsy. I am thankful and grateful for all the people involved that helped me try anything and everything to overcome my seizures.
Find my book called “Epilepsy Through A Child’s Eyes” on Amazon paperback and kindle.
NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.
This post is part of the Epilepsy Blog Relay™.
One thing that you should never say to someone with epilepsy is, “You’ll be okay, I’m sure!” Only recently, has this been getting on my nerves.
I have to go in to get another EEG. I have aged out of pediatrics and they want to do a check-up before prescribing my medication. Since this has come up so suddenly, I have tried to talk to my friends about it because I’m nervous and stressed. What if something goes wrong and I am forced into regular hospital visits? I’m almost halfway through my college career and the last thing I need is to be flooded with treatment again.
When I have texted my friends the overall answer for me being stressed and nervous is this one sentence: you will be fine. What hurts me the most about this is the underlying feeling that they do not care enough to listen. This is something that I was only diagnosed with four years ago when I was a teenager.
»Related: Epilepsy Blog Relay: Life with epilepsy in high school
Maybe someone can explain to me why I find this answer so annoying? Maybe I am overreacting, and the nerves of my upcoming appointment are taking over? All I can think when I hear this is, are you a doctor? Are you 100% confident that I will be okay? Do you know what this means for my day to day life if something is wrong? What if I have had a few seizures and because they aren’t as often as they used to be, I don’t notice them? I don’t want to make it seem like my issues are more important than others, but I don’t think people get that epilepsy is a disease. Just because they cannot see it, they don’t think it is a big deal.
Epilepsy is a physical issue, isn’t it? There are millions of us living with epilepsy all over the world and for once I just want someone to say, “I know you’re nervous and I cannot understand it myself, but do you want to talk about it?” I’m not expecting people to understand what we go through because they don’t have our condition, but what I hope is that someone will take the time to understand that I do have this disease and it does interrupt my life.
Seizures made my life hell for two years. When my friends were all getting their licenses, I was told that I had about 20 seizures a day. I went to New York about once a month to have someone attach electrodes to my head. I was going to the grocery with my EEG on children approached me asking what was wrong with me. So, I hope that people who don’t experience the life we do, start understanding that being there and listening is all we want.
I don’t want someone telling me I will be okay all of the time. I want someone saying, “I know you’re scared and I’m here for you.”
NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.
This post is part of the Epilepsy Blog Relay™.
I was first diagnosed with epilepsy almost one year ago at age 49. I quite literally thought I was having a stroke so I went to the Emergency Room. After the ER visit I was referred to a neurologist for follow up. In the meantime, I researched my symptoms and suspected I had epilepsy.
I also discovered I have a rare condition called Todd’s Paralysis or Todd’s Paresis, which causes weakness on the side I have my seizures. Now, after a few months, medication controls my seizures but not the weakness I experience throughout the day. It is incredibly debilitating and is a huge struggle in my daily life.
Even if I’m just cooking or actively moving around my house doing chores I will experience weakness. At times the weakness is so bad that I’m forced to sit down and rest until it subsides, which is usually one hour. Then I’ll go through it all over again shortly thereafter. Others notice, especially when I am out in public and l appear drunk, stumbling, and uncoordinated. But the really hard part is the exhaustion that comes with the weakness and seizures.
Todd’s paralysis, also referred to as Todd’s paresis, Todd’s palsy, or postictal paresis. According to the National Institute of Neurological Disorders and Stroke, Todd’s paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis. The paralysis may be partial or complete but usually occurs on just one side of the body.
The paralysis can last from half an hour to 36 hours, with an average of 15 hours, at which point it resolves completely. Todd’s paralysis may also affect speech and vision. Scientists don’t know what causes Todd’s paralysis. Current theories propose biological processes in the brain that involve a slow down in either the energy output of neurons or in the motor centers of the brain. It is important to distinguish Todd’s paralysis from a stroke, which it can resemble, because a stroke requires completely different treatment.
LEARN MORE»Related: Epilepsy Blog Relay: Michael takes a positive approach to an epilepsy diagnosis
I try to remain positive and tough through my daily struggles but honestly, the fatigue gets in the way of my ability to do most physically normal activities that I am used to. I am also 15 years widowed and raising a young son by myself. Usually the strong one among my family and friends, I now am the one who needs to maintain a less stressful life — as stress, sleep, and dehydration are all major triggers of mine. Thank you for letting me share my story.
NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.
