RAISING EPILEPSY AWARENESS
Warren suddenly passed away 17th March 2007, aged just 23yrs young. When Warren was first diagnosed at the age of 15yrs we had no knowledge of the condition. Of course we had heard of it, who hasn't! We asked questions as any parent would. We were confident that this could be controlled and Warren would lead a normal life. We were not prepared for the next 8 years. The mood swings, the insults, the fear, the uncontollable outburst's. We knew nothing of any of this.
Warren died alone in his rented accommadation. It was St Patrick's day. It was 24hours before I was told. MOTHER'S DAY!!!
Since Warren's sudden passing we have found out so much more about Epilepsy. We believe we should have had access to this information when Warren was first diagnosed. We feel really let down and are determined that more information will become more readily available. We can't turn back the clock, we wish we could. By Raising Epilepsy Awareness through 'myspace' we hope others will have an understanding of this very complex condition.
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EACH DAY I HAVE GOT STRONGER I FEEL I MUST THANK ALL OF YOU WHO HAVE SENT ME MESSAGES AND INSPIRATIONAL STORIES. RACHEL A TOP FRIEND HAS BEEN PARTICULARLY A POWER OF STRENGTH TO ME AND OF WHOM I AM EXTREMELY GRATEFUL. SHE HAS HELPED ME WITH DIFFERENT ASPECTS OF THIS PROFILE. THANKYOU SO MUCH RACHEL!!!!
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Warren loved to write poetry and songs. The extract below, 'Smile', is taken from a song he wrote Spring 2006.
'A SMILE' by Warren Healey
I'd say the worse feeling that we all have to go through
Is losing a loved one and a love so true
But forget that for a minute
and think for a while
Cos all you've have to do is live your life with a smile
The only reassurance we can have when somebody dies
Even though your hurting and crying inside
Is the thought that they are in a better place
Looking down on you
With a smile upon their face.
Warren had finally come to terms with his condition in the last few weeks of his life. He had a new confidence and had been in touch with Epilepsy Action to enrol as a volunteer so he could share his experiences with other sufferer's. He was accepted and was due to meet with a representative on the morning he died.
Warren wrote the following prayer just a couple of weeks before he died. When he wrote it he telephoned me and read it out. I felt so confident that things were finally going well for him........
When God sent guidance to me
I knew this was the new start
I did not question why I knew
I could just feel it in my heart
I know this was going to be about guidance,
Which in my life I've been searching for the most
I have been guided to talk to our God
And how to feel the Holy Ghost.
My mind is so much purer now
My soul has began to clear
I am realising the earth is precious
and that life itself is dear
I've began to take care of my body more
and treat it like a temple
I've started to look at life a lot sweeter
And embrace upon things more gentle...........
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The word "epileptic" should not be used to describe someone who has epilepsy because it defines a person by one trait. A label is powerful and can create a limiting and negative stereotype. It is better to refer to someone as " a person with epilepsy" or an "epilepsy sufferer." If you're sharing that you have epilepsy, simply say, "I have epilepsy." Keep in mind, if you are the epilepsy sufferer, and you don't mind using the word epileptic to describe your epilepsy, you're teaching other people that it's okay to label the rest of us. Please help us win the battle to be respected.
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EPILEPSY IS NOT A DISEASE! It's a neurological disorder. A disease is chonically progressive and it impairs normal functioning as a consequence of infection, inherent weakness, or environmental stress and can affect the entire body. However, neurological disorders only affect the nervous system and affects the arrangement, causing confusion in the nervous system.
..THE ABOVE INFORMATION IS PROVIDED BY DIANNE (EPILEPSY ADVOCATE) WHO ALSO HAS EPILEPSY. SEE TOP FRIENDS. HER PROFILE IS WELL WORTH A VISIT AND VERY INFORMATIVE!!!!!!!!!!
'COMPLEX PARTIAL SEIZURES'
What are Complex Partial Seizures?
Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect conciousness.
During a complex partial seizure, a person cannot interact normally with other people, is not in control of his/her movements, speech or actions; doesn't know what he/she is doing; and cannot remember afterwards what happened during the seizure.
Although someone may appear to be conscious becausehe/she remains standing with their eyes open and moving about, it will be an altered consciuosness - dreamlike, almost trancelike state.
A person may even be able to speak, but the words are unlikely to make sense and he/she will not be able to respond to others in an appropriate way.
Although comple partial seizures can affect any area of the brain, they often take place in one of the brain's two temporal lobes. Because of this, the condition is sometimes called 'temporal lobe epilepsy'.
Typically, a complex partial seizure starts with a blank stare and loss of contact with surroundings.
This is often followed by chewing movements with the mouth, picking at or fumbling with clothing, mumbling and performing simple unorganized movements over and over again.
Sometimes people wander around during complex partial seizures. For example, a person might leave the room, go downstairs and out into the street, completely unaware of what he/she was doing.
In rare cases, a person might try to undress during a seizure, or become very agitated, screaming, running or making flailing movements with his/her arms or bicycling movements with the legs.
Other complex partial seizures may cause a person to run in apparent fear, or cry out, or repeat the same phrase over and over again.
Actions and movements are typically unorganized, confused and unfocused during a complex partial seizure.
However, if a complex partial seizure suddenly begins while someone is in the middle of a repetitive action-like dealing cards or stirring a cup of tea-he/she may stare for a moment then continue with the action during a seizure, but in a mechanical, unorganized kind of way.
PUBLIC AWARENESS
Every day, people live with this type of epilepsy go to work, take care of children, take part in sports, ride buses, cross busy streets, go on escalators, wait for trains and - perhaps most difficult of all - risk having seizures in front of a public that too often does not understand.
Dealing with the reactions of others may be the biggest challenge of all for people with complex partial seizures. Thats because many people find it hard to believe or accept that behaviour which looks deliberate may not be.
Lack of public understanding has led people with complex partial seizures being unfairly arrested as drunk or disorderly, being accused by others of unlawful activity, indecent exposure or drug abuse - all because of actions produced by seizures.
Such actions may even be diagnosed as symptoms of mental illness, leading to inappropriate treatment and, in some cases, commitment to an institution.
The Epilepsy Foundation and its network of affiliates are committed to making the public more aware of this type of epilepsy so that painful misunderstandings can be avoided.
THIS EXCERPT WAS TAKEN FROM THE EPILEPSY FOUNDATION WEBSITE
THE WEBSITES BELOW MAY PROVIDE USEFUL INFORMATION.
Free Epilepsy Information
Downloadable Information Leaflets From Epilepsy Research UK
www.epilepsyresearch.org.uk
Epilepsy Foundation-Not Another Moment Lost to Seizures
The agency that helps individuals and families affected by epilepsy and related neurological impairments by providing education, advocacy and services.
www.epilepsyfoundation
Epilepsy Bereaved
Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths. Our work to date with leading experts has brought the taboo of SUDEP out of the shadows.
www.sudep.org
What to do if someone has a seizure
DO...
Protect the person from injury - (remove harmful objects from nearby)
Cushion their head
Look for an epilepsy identity card or identity jewellery
Aid breathing by gently placing them in the recovery position once the seizure has finished
Be calmly reassuring
Stay with the person until recovery is complete
DON'T...
Restrain the person
Put anything in the person’s mouth
Try to move the person unless they are in danger
Give the person anything to eat or drink until they are fully recovered
Attempt to bring them round
CALL FOR AN AMBULANCE IF...
You know it is the person’s first seizure
The seizure continues for more than five minutes
One tonic-clonic seizure follows another without the person regaining consciousness between seizures
The person is injured during the seizure
You believe the person needs urgent medical attention
SUDEP (Sudden Unexpected Death in Epilepsy)
KNOW THE RISKS
Research to date has not managed to identify the exact cause of SUDEP. What has come to light is that there are certain common factors that link many of the cases. These are listed below.
Forgetting to take some dosages or not taking the medication at all.
Taking more than one type of anti-epileptic drug.
Having frequent changes of anti-epileptic drug dosage .
Having poor seizure control .
Having seizures during sleep.
Being alone at the time of the seizure.
Experiencing tonic-clonic seizures.
Having brain damage.
Being a young adult, particularly male.
(I CAN TICK MOST OF THE ABOVE RISK FACTOR'S. MY FAMILY AND I WAS NOT AWARE OF THESE RISK'S).
When considering the risk factors, remember that just because some or more of these may apply it does not mean that someone will die from SUDEP.
Research indicates that there are around 500 cases of SUDEP in the UK every year. When reading this, it is important to bear in mind that in the UK there are around 456,000 people with epilepsy.
INFORMATION TAKEN FROM
Epilepsy Action
Provides information about coping with epilepsy and seizures. Deals with the various types of epilepsy, and provides advice through its email helpline.
www.epilepsy.org.uk
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