My name is Beauty. I am 26 years old. I live with my nephew who is 16 years old. late last year, he started experiencing involuntary jerking of his muscles. And one Sunday morning he experienced a seizure. We rushed him to the hospital and after weeks of going for brain scans, we were told that he has some form of epilepsy.
Ever since he has been having episodes of seizures and I see how this has affected him. I was wondering if there is some kind of coaching that for people with epilepsy to help them build their confidence?
He has been affected in that his self-confidence has dropped so much. He feels scared t go out and play like before as he is scared that he might experience a seizure when he's not home.
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Hi Beauty - I have lived through this before. I also experienced lack of confidence and self esteem back then. I trust he has been to a neurologist and is on medication. The medication is not always easy to balance just initially as it needs to be in the bloodstream a while and it takes careful monitoring of his condition to reach good control and medical management of the condition.
Most with this condition underestimate themselves and tend to withdraw in case they may have a seizure. Epilepsy is primarily stress related and we can help ourselves in better managing our lifestyles to manage unnecessary stress.
I realised in my twenties that there is a possibility that subconscious stress may make me more susceptible to seizures. I had various imaginary barriers holding me back from doing what I wanted in the event I would have a seizure. This is where the focus of seizures tends to take control and creates subconscious stress. Breaking down these barriers pushed epilepsy aside and I then took control of my condition.
I then stepped out and decided to do what I wanted, within reason of course and, yes, I did have seizures, but I rose above them and got on with my life. I know its not easy but one needs to start somewhere. I did swimming, cycling and all the things that made me happy and it lifted a load.
I also started a support group in my twenties as I established that it was easier talking to others with the condition and sharing - it need not cost anything. There are Facebook support groups as well. Don't hide the condition, speak to others about it. People are a lot more accepting and educated today than they were in my day 30 to 40 years ago.
Important is to keep a diary and after each seizure, write details, when, where, what activities, what you ate or drank in the past 24 or even 48 hours. Some foods stimulate people like caffeine, alcohol, coke, coffee, or other fizzy drinks, sugar, chocolate, etc. This does not mean that he has to stop them, but maybe reduce quantity. Use this diary to understand his condition - he is an individual and needs to accept what he has. We all have different metabolisms, blood pressures, body size, lifestyles, etc. so we are unique and one person may have a different threshold to the next so knowing his limits and how he ticks will go a long way in better managing his condition. Regular medication is important - get used to taking it at regular times - place them in a place where you will see them or set a reminder. The medication maintains a certain level in our blood and if left too long, those levels may drop below a threshold, which may make him more susceptible in having a seizure. May not but there is the risk.
Another important factor is to keep hydrated with water. Dehydration is a contributor. I drink a litre per day, we should really be drinking 1.8 litres per day. Cool drinks and coffee don't count.
Try to live as much of a normal life possible. It is possible that with his development and growth as a teenager, this condition has surfaced.
I turned my whole life around and epilepsy has fallen away - I am a mountain biker, cyclist and basically lead an active lifestyle - I also have a very demanding job as a Senior engineer. I may have one seizure per annum but only due to my own stupidity - not listening to myself.
Wishing you and your nephew all the best and feel free to call if you need more assistance.
Thank you so much for your response. I have been online since morning, trying to find out more about my nephew's condition and my biggest concern being - Will he ever have an active life like all of us, will he be fit enough to stand the pressures of life, will he be able to build his career and so many others.
You really gave me hope, you have no idea.
I believe that my nephew like any other teenager can and will enjoy life and live it to fullest.
I am now looking for a support group which he can be a part of, in order to help him see himself as bigger than this, that He is much more than his condition and be able to make a conscious choice to integrate facts about his condition, who he is as a person and everything that he is capable of achieving in life, allowing for a meaningful life in the here and now. I acknowledge that this will be a process, I would like for it to start as soon as possible.
I will definitely call if I need more assistance, I am even going to show him this conversation with you. I feel that it will help him realize that someone actually went through what he is going through and is living their lives to the fullest.
Its a pleasure - it is a passion of mine to help where I can.
Your nephew must never give up on his dreams or ambitions - needs to be positive and there is a good rule I live by and often tell my wife or others when facing tough times, "Everything will be Okay" and it usual works out like that.
He must not underestimate himself - I am sure he can be a success and have an active life.
Support groups are hard to come by. It may be an idea to ask one of the Epilepsy SA Branches if they know of one in your area. If he attends a clinic / hospital where there are others with epilepsy, he can try to get to know others and you never know things grow like that. I knew 5 people with epilepsy and so decided to arrange a venue and advertise in the local newspaper - a few people and parents arrived, which was daunting but the group grew to an address list of 250 people. Not all could attend as they were from all over the country. That was then - before the advent of the telephone LOL.
Today, with social media, you can join a group and start that way.
Incidentally, I edit a biannual newsletter for Epilepsy SA called Epinews. - it comes in hard copy or email. Alternatively, you can see it on the Epilepsy SA web site
I just subscribed to receive the newsletter. I am going to take some time and read it with my nephew. The stories there are very inspiring, I appreciate the link on the newsletter on " How can I introduce
epilepsy to children?"..... The cartoon is very informative, I am thinking of sharing it with His friends, I'll wait for him to give me the go ahead.
This is a new curve on our journey, and I am prepared to make it an exciting one for my nephew and my entire family.
Hi Beauty, I have had epilepsy for 44 years now... At 16 stress was the main reason for my seizures, as well as puberty (hormonal changes)... One does feel isolated and lonely when one is initially diagnosed, but having the support of friends and family makes a big impact on our lives. I co-edit with Tim whereby we do a bi-annual magazine, Epinews, with personal stories of people with epilepsy... Our next issue will be out soon. Feel free to contact Epilepsy South Africa and get your name added to the mailing list! Keep in touch.
A pleasure... Glad to hear you have done so! Epinews is currently being printed and will be distributed soon. Let me know your thoughts when you have seen it.
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The clinic throw me out because of me having my service dog with me
scared
Recent diagnosis, really looking for guidance.