November is Epilepsy Awareness month

Many people may not be aware that November is Epilepsy Awareness  month, and the logo is a purple ribbon.

On Saturday, I attended the 2nd Into The Light Walk, a 3 mile walk in New York. It is about Epilepsy Awareness, and people with epilepsy can meetup, share experiences, and raise funds. It was a truly an awesome experience I must say. Never been to such an event, that is purely about  and with people with epilepsy (I  have only known one other person in my life with epilepsy). It was a larger attended event this year, as over 1200 people finished the walk, along with their friends and family, that raised nearly $100000 for epilepsy awareness.

Going along with members of an epilepsy meetup group in New York, I met for the first time (there were 10 of us). I chatted to people about our experiences, the perceptions, and difficulties of the epilepsy condition. We may of had differences in our seizure types, some even had brain surgery…but friendships developed, and contacts made.I expect it will continue to grow.There were people of all ages,genders, and race whom

Next year :March 14th 2014 there is the annual walk in Washington D.C, of which I intend to do.Therefore have a seizure free week, month, year that can lead to a driving license, and no constraints.

 

 

The role of dogs in detecting seizures

I have been asked about this a couple of times at networking events, and that is the role of dogs, or the correctly termed  Seizure-Alert Dogs. It has evolved over the past  15-20 years, and the aim is for dogs to alert people with epilepsy of an oncoming seizure minutes or hours before they occur. This is where it seems the experts disagree to the effectiveness of their intended use.

It seems  the detection of an oncoming seizure is still a bit of a mystery as to how a dog can detect this and why. Some trainers and experts believe that they can detect subtle changes in a person’s behavior or scent before a seizure occurs. A 1998 study by Delziel, Uthman and colleagues at the university of Florida, that involved 29 dog owners who had epilepsy, of these nine reported that their dogs responded to a seizure and remained close to their human companion. This was done by the dog either standing or lying next the person during or immediately after the seizure. Of these dogs, three were reported to alert their human companion to an impending seizure.

Although this was a small study, this suggested that dogs can alert such behavior regardless of breed,age or gender. This study suggested that a dog is likely to alert a person if they have a certain type of seizure, and auras. However, Dr Gregory Krauss at the John Hopkins school of medicine suggests that many patients actually have Psychogenic Non-epileptic seizures (PNES) or events resembling a seizure, these aren’t caused by the characteristic electrical discharges that is associated with epilepsy. Therefore the Neurologist has incorrectly diagnosed the patient as having epilepsy.

A study by Adam Kirton in Calgary of families of children with epilepsy. who had seizure response dogs. Forty per cent of families reported that their dogs developed an ability to respond to a seizure. The families reported that about 20%  of their dogs showed alerted behavior prior to the children’s seizures.

The training of Seizure Alert dogs for people with seizure disorders, especially the training of dogs that are able to sense and alert to a person’s oncoming seizures, is still a new and evolving field.It is a challenging area where more research must be done to answer the questions about how and why some dogs have this ability, and determine a method to easily identify these dogs.

Memory and epilepsy:Part 2

In my previous article we looked at how our memory is affected by epilepsy. This is about how using memory aids, we can provide strategies to limit these problems.We all have problems with our memory, and there are other issues  that can affect us such as dementia or old age.

To start with, It is good to use practical memory systems such as post-it notes, calendars,diaries,or drug wallets.

Post it Notes: I am a great one for making lists, whether this be for shopping,things to do that day or week eg phone calls to make, emails to send, daily tasks we all have to do.I have seen some people’s office desks covered with notes, around their computer or office wall. I often underline them as well or write in different colored pens, as I am a great highlighter.

Calendars:There are two calendars in our house, but I have my own which I can underline,circle, write comments,as I tend to do.

Diaries:I always use one, although do need a larger professional one, rather than the moderate sized one I currently have. It is good for keeping  appointments,keeping track of what you need to do, and is also good method to keep track of your seizures.However It can get clotted up, especially if you have cancellations or other adjustments to make.

Medication wallets or trays: I started using this,as sometimes I couldn’t remember if I last took my last dosage, admittedly that has always happened from time to time over the years.I  now have a weekly tray with my dosages filled, by myself for the twice daily intakes for the week ahead. I just need to check when I last took my medication, in case I forget, and I am in the habit of  topping up my tray for the next 5 or 6 days, and take it with me for vacations, plus extra supplies, if I need them or in case I lose some.

Cell phones:I suspect everybody does this now, as I routinely update my calendar on my phone, often daily and then weekly, when events occur. Some people may also have calendars on their laptop. I get reminders also for appointments whenever they occur via email.

Other techniques: Mnemonics or memory techniques can be used to help memorize information.These take practice, so you need to work out what is suitable for you. This could be by using stories,image or rhyme as methods to retrieve factual  or other information.

Ever have the feeling you have the word or words ‘on the tip of your tongue’ , you could try what is known as ‘alphabetical’ searching by searching for a word that you are looking for by going through the alphabet. It can be a prompt way to retrieve the word you are looking for.However as an afterthought, ever noticed, when hours later, when asleep or relaxed the word you are looking for pops into your head!

Remembering someone’s name:This is the one I struggle with, whether short-term or long-term. Simply ask someone else to remind you of their name, helps in certain situations, in advance if possible, as I have done and write them down. When meeting someone for the first time, get them to repeat their name to check you heard correctly, and write it down later, if they have are no business cards. You can adapt a strategy of  picturing a visual  image that goes with the person’s name eg the person sitting on a bridge as their name is Mr Bridge, or rhymes similar to the name eg Joan for a moan, and physical features to remember a person name such as a lemon for Mr Lemon. This is similar to the Image-Name technique in which you invent a relationship between the name and the physical characteristics of the person.

Remembering where you put something: Try concentrating where you put something eg keys, or get into a standard routine, of where you put something down. I always leave my keys in the same place, in a small tray, or my extra medications are all together in the same place next to my bed. This I do to see what needs to be refilled, and they are easily located.I tried putting them away in a draw, but tended to forget about refills or how much I had left. My professional files are put in the same box, my medical notes, financial/pension files are in others.These can be easily retrieved.

Using sayings or rhymes: For information involving key words or Acronym are great to recall  information, as well as studying for exams. A 10 year old me , still remembers Never Eat Shredded Wheat, for  where :North.South,East ,West lies clockwise,or Richard Of York Gave battle In Vain, can remind you of the colors of the Rainbow:red,orange,yellow,green,blue,indigo,violet, or BRASS for how to shoot a rifle:Breath,Relax,Aim,Sight,Squeeze.

Use pictures or mind mapping: by drawing  a picture or diagram that represents what you are reading or studying, helps you to recall information. Mind maps are where you draw a map or diagram of information using keywords or phrases,this can be a helpful technique to learn.The Loci Method, is used to remember about 20 items, this is used to imagine placing items you want to remember, in specific locations in a room with which you are familiar.

Simple Repetition used correctly is an effective way to convert short-term memory to long-term memory, especially with other techniques such as with visualization or mind maps it can help.

I have come across a few other techniques that you can try: Link,Chain, or Story Method, or Actively Paying Attention.

The Link,Chain, or Story method:

This method is best for memorizing long lists eg remembering the presidents in order. Word manipulation could go like this:A man washes a ton(Washington) of clothes in a river.Suddenly the river goes dry, as the water is blocked by huge dams (Adams). A man asks his ‘deaf’ son(Jefferson) to take his clothes. Thus by creating an image that coincide with items on a list, the easier it will be to remember.

Actively Paying Attention:This is something  many people are guilty of. In order to use our memory to maximum capacity, we need to be conscious of every bit of information we receive. Have you ever forgotten a person’s name as soon as you shook their hand? Or directions as soon as you are given them? Or memorizing a cell phone number, or some instructions? These are common example of not paying attention.By paying more attention, and quickly converting to images, and review it a few times mentally, and it will be easier with practice.

Memory and epilepsy

This is a topic that has been in my thoughts, and I admit my concerns for a few months now. I have long noticed, or became more conscious of  my inability to remember a person’s name,and often forget them eventually.In recent months, I have now been doing general knowledge quiz books and using dictionaries, always enjoyed certain non fiction books, to keep my brain active.Information and facts are retrieved, forgotten, or may pop into my subconscious later.I have for a long time got into the habit of writing things down, on my calendar,my phone etc, which helps.

Memory is the brain’s ability to store information and find it later.This involves learning the information, storing it, then recalling it again. The recalling it is the difficult bit. However there are other factors that affect memory, such as:

  • Mood and concentration:confidence and happiness affects the way the brain works and increases your ability to concentrate and take in information.Anxiety or stress will make it more difficult at learning stage, and worrying to recall information will make it harder to recall the correct information.
  • Lack of sleep:Tiredness, lack of sleep or feeling unwell affect memory and concentration, not getting enough sleep can contribute to memory problems.
  • Age:As we get older, storing and retrieving information is more difficult process.
  • Surgery:Memory problems for those who have epilepsy, has been known, for those who have surgery in the temporal lobe.

Epilepsy as a brain activity occurs on a specific region of the brain, such as the medial temporal lobe. However such repeated epilepsy seizures can affect the brain tissues in the most important areas of the brain eg the Hippocampus, this is important to the processing of information and memory. If damage occurs on the left side of the brain, they will find it difficult to remember words-spoken or written. If damage is on the right side of the brain, visual memory is affected. If damage is found on the frontal lobes, it can lead to short-term memory loss, let’s not despair just yet.

Memory loss is either a short-term or long-term problem.Short term memory loss is common for those who experience Complex Partial Seizures or Tonic Clonic seizures just before and during a seizure, and there are people who experience disruptions regarding long-term loss.Long term memory comes in 4 ways:

  • Procedural memory-A memory for skills that can be carried out without consciously thinking eg riding your bike, swimming, tie your shoelace
  • Semantic memory-A memory for facts and knowledge eg high school and college classes
  • Episodic memory-memories from personal experiences such as weddings,vacations,conversations,childhood memories
  • Prospective memory-remembering to do things in the future eg appointments, birthday cards

Memory problems can happen due to the side affects of anti-epileptic drugs (AEDs). Drowsiness and attention problems can affect short-term memory, and make it more difficult to learn and store new information.Always check with your doctor, if you have any concerns. I did such tests about 3 years ago on memory, during a stay in hospital.

My future articles, will be about getting into the habit of using memory aids, and methods to improve on this.

Living with epilepsy from your family, partners or friends perspective!

Yes, It’s not something you think about, oblivious to how other people feel. Since having epileptic seizures from the age of 13, you don’t tend to think  or consider,just how your condition affects your family, friends or loved ones until adulthood anyway.

The anxiety, worry and concerns  they will have if  receive a phone call from school or work , that your son or daughter, husband or wife,etc has had a seizure and is on their way to hospital. I hope he/she is OK, and not  injured they anxiously think as they make their way to the hospital, and possibly not for the first time.It has happened to me on a few occasions, and unfortunately at my wedding, as we were about to leave for our hotel. My parents,naturally were upset as were others, as they didn’t want my seizure to overshadow what was a perfect day.But feeling groggy,sore,injured and tired  afterwards, and being surrounded, comforted by family and guests afterwards at the hotel. It was embarrassing for me…still I have to smile looking back though, you have to.

To put that particular seizure into some perspective, I had been recently perscribed a new drug, on a low dose, combined with what was a stressful day.So it was possibility. My wife came out with a comment a couple of years ago that really hit home, that it can upsetting for everybody or difficult for all concerned to be around a person with epilepsy or for that matter any condition or disease. It’s not something you tend to think about, their emotions and how everybody else is feeling. The first indication that I’m having a seizure, is my head suddenly turns to the right, I spin round, fall over, leading to a full Tonic Clonic seizure. You can then understand it then, if you suddenly turn and look up in one direction for some reason, and get asked, are you OK? It would make anybody anxious and on edge!

Therefore to all families,partners and friends who know a person with epilepsy, I am sure I can speak for everybody that we appreciate the support, and realize it can be as difficult for you.

The Emotions and Frustrations of Job Search, made harder with the epilepsy condition!

I imagine most people have had to go through this as some stage.However if you are unemployed and a person with epilepsy, it can be a demoralizing, frustrating experience, and even an exasperating.  Especially when you hear of people who decided to leave a job, because they didn’t like it , BUT get reemployed within weeks (let alone getting interviews). Examples of people getting jobs at the first attempt, or even deciding to relocate to other cities or countries encounter problems. You start to wonder! WHY?? Yes you have updated your resume (had it checked) , cover letter (also had it checked), found agencies, online job boards, job fairs…but still nothing. Here’s what you may of come across in your job search experience:

  1. Unemployed for over 6 months-questions! and a skeptical response as nothing seems satisfactory(you dare not mention epilepsy)
  2.  You are overqualified or you  have reached a certain age: so you start applying  for junior positions eg High School Diploma needed, so you might get a chance.
  3. Find employment in positions, out of desperation, that could be dangerous as a person with epilepsy eg factories
  4. The stages and hurdles you have to overcome: online application, initial phone call interview, online tests, interview or two, job offer! (an emotional roller coaster)
  5. Temporary agencies ,who never call or seem disinterested, or  you can’t speak to someone in authority directly: leave your resume with us .If they do contact you, indirectly via resume posting  job sites – provide inadequate information of the job details, that takes days to process
  6. If not selected, you aren’t told why or if you do,your personality doesn’t fit their profile!
  7. Keeping track of the many applications you apply for, and they employer give the impression you were the only one you applied for
  8. Phone interview only job vacancies…noticed this one
  9. Position requires clean driving license (yes we know that one)…or in difficult locations that required many buses or train
  10. Online application only, can’t speak to a HR person even if you know the name of contact, or if you do, get told online applications only.
  11. Wonder if they ever read your application, in the first place, as the applications increase, BUT still hear nothing
  12. Employment is taking from within  the organization rather than from the outside applications
  13. Jobs already taken, before they advertise
  14. Doing something like voluntary work is considered good, yet you feel, even that is not enough to convince the employer
  15. Interviewers  disrespectful…playing with their phones or dismissive…seems a whole waste of time
  16. Is it any wonder, people with epilepsy try to make it professionally by being self employed or if they don’t, are lucky to have a great employer, who knows of your condition and provides support
  17. Finally, to end on a positive note: keep persevering, stay positive,  motivated, even when you you see don’t the light at the end of the tunnel ,  you could be employed in the most unlikely of situations! It happens.

A Brief Cultual History of Epilepsy-How Society Perceived us, and still do!

I like history, always have, but when you look deeper into how epilepsy was perceived (and still do)…we have along way to go, as regards to changing the perceptions of society as a whole.

Some historical/’public figures as Alexander the Great, Frederick Handel, Vincent Van Gogh, Alfred Nobel, Lewis Carroll, and the US sprinter Florence Griffith Joyner (1988 Olympics) had epilepsy.

The Egyptians referred to epilepsy as the ‘falling sickness’ and the earliest recorded writings about epilepsy are dated from 2000 B.C. The code of Hammurabi (Babylonian Law Code) stated that anyone who has a slave can be returned, within one month of purchase, if they have a seizure. This was also the practice of slave owners in the 18/19th centuries in the US.

The ancient Greek leader,Hippocrates, stated in the text, that epilepsy was a physical possession and was considered demonic. The Greek gods of epilepsy Pan, were associated with fertility rites, known for suddenness of appearances, swiftness of attack,fear. Hecate, was associated with the underworld and a dog headed appearance, he was also associated with the fear and anxiety of epilepsy. Seizures are thus associated with an apprehension of evil and connected to the supernatural.

This view lasted into the middle ages when the church preached the view that persons with epilepsy were possessed. The order of Jesus refused since 1540, entry for anyone with epilepsy into the Jesuit religious order. The Salem witch trials of 1692, the chief accuser, 9 year old Elizabeth Parris, had seizures. The infamous  Bedlam,psychiatric hospital in the 19th century.located in London over a third of the inmates had epilepsy. Hence the coining of the term, Bedlam, for an uproar or confusion. The choices then were Bedlam or castration.

The same can be said for other cultures. Traditional healers in Zimbabwe,Africa  believed epilepsy was caused by an angry or disturbed ancestor, as did the Youba tribe in Nigeria. The Navajo tribe in Arizona, believed that seizures were caused by incest , witchcraft or hand trembling.

In fact it wasn’t until the late 1800’s did medical doctors begin to recognize that epilepsy was a neurological condition. One of the first anti epileptic drugs were Paraldehyde (1882) and Phenobarbital (1912). Still society even now in recent times are mystified about the epilepsy condition. It wasn’t until 1965, that  people with the epilepsy condition were denied access of entry to the US. Many states discouraged marriage and having children, when at least one partner had epilepsy, as it could be inherited, this was  finally repealed in the 1980’s. They also  enacted involuntary sterilization laws.

We have come along way in the last 100years…but there is still along way to go.

Epilepsy and spreading the word!

Imagine you have only been in your new high school for 2 or 3 months and you only had your first seizure ever,a month before that.

That’s tough, but recently arrived in a new country, an adolescent and  just getting used to the fact you have epilepsy  is even tougher…

I ‘only’ ever had about 3 seizures during my high school years but the first one springs to mind!!!

It was in a science lesson, sitting on a stool, and I went into a seizure. They (two other guys sitting next to me) were trying to help out!..by holding me down and forcing a ruler into my mouth, to stop me from swallowing my tongue!!

I apparently retaliated by pushing one, and ‘stabbing’ the other on the wrist with a compass, and he told me the next day that he wanted to punch me…lovely!! I happened to ask  how everybody in the class reacted, a mixture of shock and laughter, especially my confusion and grunts afterwards.The head teacher was called, and asked me if I knew my name. Yes, this was the harsh reality of epilepsy then, and is still be happening now. The golden rule if somebody has a seizure is to NOT  to stop the seizure from happening and  limit the possibility of  injury if you fall.

Obviously the school were aware of my condition, and asked the usual questions…what should we do? However  my classmates and probably my teacher at the time didn’t.

You learn to, or is a good idea to tell your friends, the close friends, who you trust and are most likely to hang around with, what to do if the scenario does happen and you continue this when you get older.But outside that circle of friends and the school or any other environment, in general  it didn’t and the message if more difficult.

My parents told my family,sibling about the epilepsy condition and what to do if a seizure should occur, this takes the shock effect away and people are aware of what to do.Looking back…at school,college…the working environment. There were no first aid classes as such, or ones that did, epilepsy or other conditions weren’t. This is what is needed to dispel the myths and misconceptions of the condition. The compulsory classes at work if any, tended to focus more on fire regulations or maybe resuscitation and other physical injuries.

Over the years, my family and wife get asked…should we call an ambulance if I had a seizure.It’s not necessary unless the seizure lasts for more than 3 minutes or you have injured yourself when you fell. However I have just been talking about Tonic Clonic  or Grand Mal seizures, so people need to be aware there are other types  of epilepsy which are categorized into PRIMARY GENERALIZED SEIZURES  which includes Absence, Tonic Clonic or Myoclonic seizures and PARTIAL SEIZURES which includes Simple or Complex Partial.

I hope you found this useful…spread the message