Dreaming big in difficult times

The topic for this blog was hopes and dreams for the next decade, which is a really scary prospect when you have a medical condition which isn’t necessarily going to stay stable. This is particularly relevant in this age of Coronavirus and the increasing number of cases of COVID-19.

NOTE: Join Jessica and Hayley on Instagram Live 3/24 at 12pm PT/ 3pm ET/7pm GMT as they chat about how this story is relevant to so many now!

However, I do think it’s a great incentive to those who have epilepsy and other chronic illnesses to be forward thinking and positive, as we spend so much of our time (especially if our seizures aren’t controlled) living from one day to the next, never knowing when plans might need to be cancelled.

Dreaming Big

I’m 37 and my biggest dream is one which existed before my epilepsy became unstable and is kind of ironic as now, I’m currently not working, I might actually have more time to work towards it. I really want a PhD by the time I’m 50.

Don’t ask me why, I don’t need one for any specific purpose, but I love learning and academia. And yes, it’s entirely possible to learn without working towards a PhD, but that is my personal goal. I was a teacher and as soon as I’d completed my teaching qualifications, I began contemplating what I was going to do next. It’s also one which I like as since, barring the odd very slight memory lapse, I don’t really have any cognitive impairment, it’s not something which I can see epilepsy getting in the way of (plenty of other things, such as my husband, might get in the way, but not epilepsy!). As far as hopes and dreams go it’s tangible and a little bit ludicrous at the same time.

Related:Leila’s Ideas: Don’t Give Up on Your Dreams

Setting Goals

My next dream is to make the contributions I have made towards the epilepsy community continue to count. I’ve never been driven by money (this is probably a good things since most epilepsy organisations are charitable foundations) but I’d love to continue to see my articles being published and shared and be able to make a physical contribution to ending stigma relating to hidden and chronic conditions. I’m working really hard at this at the moment to establish myself as a freelance writer and my long term goal is to be used regularly in the healthcare sector for research articles and have also been reaching out to local schools and colleges (using my past work experience as leverage) to go in and give talks to students about epilepsy awareness, not so much from a medical perspective, more in terms of helping friends or family deal with it and giving practical advice which is often not covered (for example if you have a friend with epilepsy organising inclusive activities every once in a while which don’t involve late nights or alcohol and picking up missed classwork for them).

Making a difference

When I trained to teach, I did so because I wanted to make a difference, and although I can’t teach at the moment that continues to be my driving force and using my epilepsy and whichever direction it leads me in seems to be as good a way as any other.

To read more about my epilepsy journey, please visit my blog at www.fitsandstarts.co.uk

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Telemedicine visits with your doctor during a pandemic

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.

What is telemedicine?

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.

How can telemedicine help during a pandemic?

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.

Telemedicine in Neurology

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:


Epilepsy Blog Relay: Living with Tuberous Sclerosis

This post is part of the Epilepsy Blog Relay™.

Rachel’s story

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.

Freedom from seizure activity

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.


What is Tuberous Sclerosis?

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.



Looking back at childhood

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.

Epilepsy Blog Relay: Time for a little compassion in epilepsy

This post is part of the Epilepsy Blog Relay™.

Kenny’s Story

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

Anxiety and fear

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.

The importance of compassion

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.

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