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What is it like living with JME?

Tue, 08/05/2014 - 16:09

Hi,

I'm a student paediatric nurse, and I am currently working on a presentation about what it's like living with Juvenile Myoclonic Epilepsy - in particular what it is like for a teenager to be diagnosed with the condition. (aged upto 18 years). 

I was wondering if anyone would like to share their experience of living with the condition? Especially if there are any particular things that you find difficult coping with? For example, has this diagnosis affected you socially? how did it affect school? or relationships with friends etc? 

Any responses would be very appreciated!

Catherine

Comments

Presentations are good and

Submitted by Anonymous on Sun, 2014-08-10 - 13:32
Presentations are good and well intended. I do hope you get the information you need.I was diagnosed long before types of seizures came into existance. That happened in the early 90's when neurologists went into specializations. My neurologist went into ALHZ. So I was introduced to the next. I have been with the same group of neurologists since 1970.Do you know that epilepsy is more common than Parkinson's, Alzheimer's and strokes combined? Yet, little is said or writen about it, as many endure those symptoms in secret for fear of stigma.It is the stigma associated with epilepsy that we have to overcome. That stigma is because most people only know of grand mal seizures, They do not know that there are 40+ different types of seizures.Yes I had problems with friends, other students and in some cases even family members. People today have it much easiersince they can get online and get information in a few minutes. Their issue is they don't do the research. The hear the kind of epilepsy and since they have had a few seizures all the same they think that that is the only kind of seizure they will ever have. Which is the wrong thing to think.All a seizure is is "an electrical impulse going off wrong in the brain"  I was diagnosed with Grand Mal, Petite Mal and Focal Motor epilepsy. Which means I had the worst, the slightest seizures and with focal motor I had many between them.In my focal seizures which generalized I went into a convulsion which looked like a grand mal but the difference I was concious and knew what was happening. I saw the fear in my friends faces. I heard what they said and knew who said what. I heard other students telling someone to get the nurse. Yes they were kind of scary and yes I could get hurt from time to time. I had friends who didn't come around me for a period of time because they didn't know what had happened or they had heard the stigma because they had only heard the stigma associated with epilepsy  which has been around for well over 1000 years. I would talk to each person and by doing theat they learned I have an ailment which they can't see. Other than that I was just like Harry who wore flasses or mary who used a hearing aid. Or Frank who used a wheelchair. Their  ailments could be seen, I also asked them if they knew of any otehr ailments that could not be seen. Their answer was no. I answered then with "What about diabeties or a heart condition. So by talking about it they learned more and by learning they also ended up helping people with disabilities more.All it takes is knowledge and understanding but to get that knowledge people need to research. Find out the type of epilepsy they have then research the types of seizures they CAN (but not always get) have. I have been very bless by not having a convulsive seizure since 1970. I also know that there have been many advancements in the medical field. The medications today are better then those I took in the 1960's. That does not mean they didn't work because they did. It means they have fewer side effects. The shorten the time in those seizures and the time to focus. Most of my seizures 6-8 years ago lasted 2-5 minutes and focus time (getting back to normal) was 15-45 minutes or at times I needed to crash and sleep. Today thos same seizures last 2-5 seconds and focus time is also in the seconds. Today I can be in a group of people all talking about an issue and I could have a seizure in that group and they would know nothing about my seizure. I had one at my PCP's office and was talking. A few seconds later I asked him what he thought I had done since I stopped talking in the middle of the sentence. He stated he thougth I was gathering my thoughts. I informed him that those secondes were the seizures I was having now. The last time he had seen me have a seizure in his office they were minutes long and he wanted me to lay down and if need be sleep, He was amazed that the time in my seizures was reduced that much with the meds I am using today. I hope this helps 

I'm 19 (20 next month) and

Submitted by Misjoey101 on Sat, 2014-08-23 - 02:20
I'm 19 (20 next month) and just finished my second year of college.Epilepsy was hard to live with as a kid so, it has socially affected me in a very negative way. I am very shy and I am also limited. I make less friends because I can't drive, I can't drink and I can't go to the clubs because of the lights. Epilepsy has also had a bad impact on my memory. I forget people( what they look like and what their names are) which also makes socializing hard. I get lost SO easily so, I never remember where the social events take place too. Overall, I'm lucky when I find a good friend. Epilepsy hasn't helped the way I look either. Keppra has made me gain 30+ pounds over the years and a huge brain-surgery scar isn't appealing either.  

cbd**notcubs

Submitted by holey hail on Tue, 2019-05-14 - 04:33
cbd**notcubs

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