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.

 

 

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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.

Quote of the Day!

I like both these quotes, so decided to share these with you today:

‘In between goals is a thing called life, that has to be lived  & enjoyed’

Sid Caesar

and

‘Remember that happiness is a way of travel, not a destination’

Roy Goodman

Quote of the Day!

I am getting to the stage, where friends or family of a similar age are discussing:

  •  Remember about the good old days regards to socializing…and still have change at the end of the evening!
  • Complaining about there is no respect any more from younger generation,,,getting attitude,no manners!
  • The cost of everything these days from groceries,transportation to house prices’…you could get a beer/pizza for…
  • The weather…but this more from a British perspective eg We always had long,hot summers and snow for the holidays

BUT the thing is this seems to be a recurring generational view repeated over and over!

Therefore:

‘Age is an issue of mind over matter.If you don’t mind, it doesn’t matter’

Mark Twain

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

Employment and epilepsy disclosure!

Finding employment is tough at the best of times, but even more if you have have epilepsy it’s even tougher, WHY?

You have to consider the following:

1.Your career choice is a difficult process anyway, even more when you can’t drive, your own personal safety and that of  others.

2.The process of finding employment and when to disclose your condition is a difficult experience.

3.The fear of discrimination and ignorance decreases chances of being hired or even promoted.

Most people who have epileptic seizures, do so by their mid to late teens. Therefore when old enough to be of age to learn to drive will of gone through the stages of acceptance,that being qualified to do so will never happen.

Thus when taking careful consideration of your career, despite your usual reasons of choice: interests,passion,skills which can be based on your personality and your values. You have to take in account your own safety(and those of your co workers etc) as to the potential of having a seizure in a workplace environment.

An environment that is office based or anything that doesn’t require driving as a job requirement, which is not easy in this day and age. You need to consider a location where there is good public transportation.

When you have come up with a suitable career choice, you then start applying and then the hurdle is of going to interviews,and filling out application forms with the fear you won’t get hired because you have disclosed you have epilepsy. If you did ,was it because you weren’t the right candidate eg lack of experience, knowledge,qualifications OR was it really the employers fear or ignorance of the epilepsy condition ie don’t want the responsibility/hindrance.

There is no correct or perfect solution to this dilemma, unfortunately. In my experience, honesty is the best advice, for application forms I would write in the medical section: epilepsy- but well controlled…which was generally true, and then they occurred  at home. I have disclosed  this at the interview stage only, when I was hired. I have also disclosed this information, when I was in the company for a period of time, and therefore they knew I could do the job, was reliable,punctual and had very few sick days.

This is where your knowledge and education about epilepsy condition and the law is the key:

You therefore have to decide yourself when you do or don’t disclose this information as I have done. There is NO RIGHT TIME TO DISCLOSE. In most cases prospective employers can ask if you have any specific diseases, medications,hospitalizations. The U.S Equal Employment Opportunity Commission states ‘ Before making an offer of employment an employer may not ask job applicants about the existence, nature, or severity of a disability. Applicants may be asked about their ability to perform job functions.’

They also state ‘ A job offer may be conditioned on the results of a medical examination, but only if the the examination is required for all entering employees in the same job category.Medical examinations of employees must be job related and consistent with the business necessity’.

Work situations may be covered by the Americans with Disabilities Act (ADA) , A federal law that offers protection to those with disabilities for companies with 15 or more employees. Most states have their own laws supplementary to the ADA, and they sometimes apply to smaller companies as well.The ADA protects against discrimination in all employment practices, including job application procedures, hiring, firing, training,pay, promotions, benefits, and leave.

You therefore have the right to be free from harassment because of your disability, and an employer may not fire you or discipline you for asserting your rights under the ADA.

Therefore to summarize on disclosure:

On a job application:

  • Peace of mind/honesty  OR may disqualify you with no opportunity to represent yourself

During the Interview:

  • Opportunity to briefly discuss specific issues/concerns OR puts the responsibility on you to handle epilepsy issues clearly

After the interview/when job is offered:

  • If disclosure is revealed and they change the hiring position (Possible legal action) this may lead to Mistrust

After you start work:

  • Opportunity to prove yourself and doesn’t affect ability with peers OR nervousness or fear of possible seizure/ employer accusing you of falsifying your application and identify who you need to tell.

I hope everyone finds this useful and somewhat reassuring.

Epilepsy-All you need to know, A personal perspective for parents and young adults

This is my self styled name of my book that I will hope to finish and publish within the next few months.

There is nothing I know more about, have  experience off and understand more than epilepsy…it is why this is my niche as a life coach.

It is often misunderstood, myths still arise and employers are nervous about employing you. In fact I can recall  being hired for one particular job with my immediate supervisor and then having some kind of meeting to discuss the condition with the CEO about what to do, feeling somehow ‘abnormal’ as I didn’t want to make a big deal about it. Another job I had to write a paragraph which the office girls kept describing my seizures and again what to do, which they kept in case a seizure did occur.

Yes you may say they were just being careful and responsible…but it did make you feel awkward and different, when all you were trying to do was go about your daily business and  really didn’t want the whole world to know or make an issue of it. Application forms are another dilemma, you don’t want to jeopardize your chances of being hired because you have to inform them, and if you don’t and get to the interview stage , do you tell your potential employers then or later on?? It’s never easy, despite  current legislation to protect us.

I would recommend as a career choice something that doesn’t put you at risk of injury,that is  non- driving and being office bound would suffice. However with the economy as it is and to pay rent… you perhaps can’t be so choosy, even if it was temporary( you hope).

Where you live can be a problem in this car-driven society. I have been to some places in this country where you can’t walk , catch a bus unless you have a car, therefore being totally reliable upon someone to go from A to B. I always chose to live in a large town, city where public transportation is good.

Friendships are important and you need a set of good friends who know of your condition, what to do and not to panic. Witnessing a seizure for the first time can be unnerving and brings on a sense of panic. The tendency is to phone for an ambulance. This is not required unless an injury occurs and just let the seizure run it’s course. A person will go through their teenage years and young adulthood into social situations where everything is ok and the consequences aren’t thought through…alcohol, staying up late(repeatedly), test drive a car/bike. This is all down to peer pressure and so being assertive and having a good set of friends who care and know of the consequences is imperative.

In the coming weeks, I shall post chapters or stages of my book. I hope you find it rewarding and enjoyable as well as educational and interesting.

Till then…

Sickle Cell Disease

Part of my job as a Life and epilepsy coach is networking.

Yesterday I was able to go to a great event and for a fantastic cause: Sickle Cell Disease and possible cure in the near future.

The event was in New York, which was hosted by the Children’s Hospital of Philadelphia. This is the children’s hospital that is the center of Sickle Cell treatment.

In attendance were a number of speakers and sufferers of this disease. The director of the Comprehensive Sickle Cell center is Dr Kim Shelley-Whitley, They are looking for funds and donations which they hope can treat this disease  before it is allowed to develop in the early stages of pregnancy, see http://www.hopeonthehorizon.org  .The hospital’s twitter is @ChildrensPhila .I spoke to a sufferer by the name of Dextor Darden , http://www.dextordarden.com/index/html , twitter is @DextorDarden who also works to educate and inform fellow sufferers and the public of this disease.

Sickle Cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. This distorts the red blood cells into a sickle, or crescent, shape.

This begins in early childhood and characteristic features include a low number of red cells(anemia), repeated infections and periodic episodes of pain. The signs and symptoms of sickle cell disease are caused by the sickling of red blood cells.When red blood cells sickle ,they break down prematurely, which can lead to anemia. Anemia can cause shortness of breath,fatigue, and delayed growth and development in children. The rapid breakdown of red blood cells may also cause yellowing of the eyes and skin, which can lead to jaundice. Painful episodes can occur when sickled  red blood cells, which are stiff and inflexible, get stuck in small blood vessels. These episodes deprive tissues and organs-rich blood and can lead to organ damage, especially in the lungs,kidneys,spleen, and brain.

Sickle cell disease affects millions of people worldwide and is most common among people whose ancestors came from Africa, Mediterranean,Arabian peninsula and India as examples. It is the most common inherited disease in the United States.

The common aspect I learned was that despite being two different conditions (Sickle Cell and epilepsy), we all suffer from the same consequences of  misinformation, ignorance and general issues with the general public throughout life.

 

 

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