National Epilepsy Week ~ Myth Day 8

Can dog mess cause epilepsy? Myth-busting

Myth: Dog mess can cause epilepsy

Fact: It is very unlikely that you would develop epilepsy after coming into contact with dog faeces

 

Dog fouling and epilepsy

It has been reported that dog mess can cause epilepsy. Some local authorities have used this message in their dog fouling campaigns to encourage dog owners to clean-up after their dogs.  Recently information has been publicised in local newspapers and in the past posters have been produced that include this message.

 

The evidence

Dog mess can contain roundworm which can carries an infection called toxocariasis. It has been suggested that toxocariasis can cause epilepsy.

Epilepsy Action is not aware of any instances in the UK where somebody has developed epilepsy as a result of coming into contact with dog faeces.

 

Challenging the myth

Epilepsy Action believes the information being given about epilepsy and dog fouling is misleading. Keep Britain Tidy used to include this information in its policy documents and Epilepsy Action contacted them to update the policy.

However, the information is still being used by some organisations and we want to make sure people are not misinformed. Central Bedfordshire Council have referred to it as part of a recent dog fouling campaign. We have contacted them and asked them to remove the references to this information in their campaign.

National Epilepsy Week ~ Myth Day 7

Are seizures always triggered by flashing lights? Myth-busting

Myth: Epileptic seizures are always triggered by flashing lights

Fact: Seizure triggers can be different for different people

 

Seizure triggers

Some things make seizures more likely for people with epilepsy. These are often referred to as ‘triggers’. It is a common misconception that all people with epilepsy have seizures which are triggered by the same things. One particularly common myth is that flashing lights will automatically trigger a seizure in someone with epilepsy. Just as there are many types of epilepsy, there are many different triggers for seizures. Some people know what triggers their seizures and others do not and seizures can come out of the blue.

 

Background

Seizures can be caused by a number of different things, although they may not apply to every person who has epilepsy. It would be wrong to assume that every person’s epilepsy, seizures and seizure triggers are all the same.
There are some common triggers which some people with epilepsy will experience.

 

Stress

Stress is often cited as the most common cause of triggering a seizure in people with epilepsy. The parts of the brain which regulate the stress response are also involved in epilepsy. So it is easy to see how stress could play a role in triggering seizures.

 

Sleep deprivation

For some people with epilepsy, sleep is especially important. This is because disturbed sleep patterns, or not having enough good quality sleep, can make seizures more likely. There are also some types of epilepsy in which seizures have a particular connection to sleep.

 

Alcohol

Drinking more than two units of alcohol in 24 hours can increase the risk of having seizures. For most people, the risk is highest when the alcohol is leaving their body after they have had a drink. This risk is between six and 48 hours after they have stopped drinking.

 

Diet

Some people say that they have more seizures if they miss meals.

 

Flashing or flickering lights

Photosensitive epilepsy is the name given to epileptic seizures which are triggered by flashing or flickering light. Contrary to popular belief, not everyone who has epilepsy has photosensitive epilepsy. Around three in every 100 people who have epilepsy have this type, and it usually begins before the age of 20.

 

Missed medication

A common trigger of seizures is not taking epilepsy medicine, or missing doses.

 

Case study – natasha owen

Natasha Owen, 21, has epilepsy but is not photosensitive. She said: “People always assume flashing lights will cause me to have a seizure and question if I can go out or watch certain films. I don’t have photosensitive epilepsy so flashing lights don’t affect me.”

National Epilepsy Week ~ Myths Day 6

Mythbusting for National Epilepsy Week - day 6 - working in education

 

Myth: People with epilepsy should not become nursery nurses, teachers, or lecturers

Fact: There should be no barriers for people with epilepsy wanting to work in these professions

 

 

Working in education

People with epilepsy can work in education and with children in a wide variety of roles. This includes work as a nursery nurse, classroom assistant, class teacher, head teacher, tutor and lecturer. Epilepsy does not prohibit people from working with children. However, we are aware of people who have faced barriers in getting the training and support they need for career in teaching.

 

Background

People with epilepsy can and do, work in the nursery nursing, teaching and learning professions. Epilepsy itself is not an automatic barrier to working in these careers or accessing relevant training and work placements. To refuse a person employment or training justbecause of their epilepsy could be disability discrimination and unlawful. Decisions on fitness to teach or practice must be made on an individual basis.
However, to work as a teacher a person must meet the Secretary of State’s requirement for health and physical capacity to teach.
Occasionally we are contacted by employers wanting more information about epilepsy. Their concern is about the health and welfare of the person with epilepsy, and the students in their care. To support a person to carry out their duties safely, risk assessments, re-definition of role and reasonable adjustments might be needed. Further information about these adjustments can be found in our nursery nursing, teaching and lecturing policy statement (add link).

 

Case study

 

Teacher training – Rob Wilks

Rob Wilks worked in teaching for almost 30 years. He told us about his experience: “I was very fortunate to survive in teaching for such a long time. Initially I only disclosed that which I felt was really necessary. With time I grew in confidence and after about 10 years in the profession I became quite open about things.
“What counted was that my most professional headteachers, colleagues and the pupils saw me as a person first and someone with epilepsy second. I had simple partial and complex focal seizures occasionally whilst in school, and pupils and other teachers witnessed them. Fortunately it caused little concern probably because they knew what to expect. The children in my class who knew I had epilepsy did not seem bothered when I had a seizure. They were certainly intrigued, but not worried.”

 

Challenging the myth

It’s important to help your employer or potential employers to understand your epilepsy. The health and welfare of you and your students is important to your employer. As a first step you should try and write as much as you can about your epilepsy in the application form or cover letter.
You could also arrange an appointment to talk to your employer about your epilepsy. At this appointment try to be honest and open about your epilepsy. You should describe your seizure type, seizure pattern and what happens before, during and after your seizure. It’s also a good idea to discuss any first aid requirements, and what help or support might be required in the classroom. Epilepsy Action can give you information about epilepsy and first aid that might help.
Depending on your support needs, your employer might want to talk about the job role. This will include possible ‘reasonable adjustments’ that can be made to the job. Reasonable adjustments can be made to help you to do the job effectively. They can also be put in place to help keep you, and the people in your care safe, should a seizure occur. Epilepsy Action’s position statement on nursery nursing, teaching and lecturing might help you both to think about possible reasonable adjustments.
Ultimately if you believe that you are being discriminated against, The Epilepsy Helpline can give you further advice. This might include making a note or keeping a diary that shows the dates that you were discriminated against. You should also write exactly what happened, what you did to try and resolve the issue, and how this made you feel. If you are a member of a union, you should contact your union for advice, help and support

National Epilepsy Week ~ Myths Day 5

Mythbusting for National Epilepsy Week - day 5 - cycling and epilepsy

 

Myth: Cycling is dangerous if you have epilepsy

Fact: People with epilepsy can cycle and take part in organised events

 

 

Cycling and epilepsy

People with epilepsy can and do cycle. There is no evidence to suggest that anyone with epilepsy should be stopped from cycling or denied access to cycling clubs, and cycling events. This includes ‘electrically assisted pedal cycles’ (EAPCs). To deny people access to these goods and services just because they have epilepsy is direct discrimination, and for this reason unlawful.

 

The evidence

People with epilepsy should consider their own health and safety when cycling. Uncontrolled seizures could impair awareness and/or cause someone to fall off their bicycle. If you have uncontrolled seizures you could take precautions to reduce the risk of an accident. These precautions might include wearing a helmet, cycling only with others and not cycling on public roads.
Stewart Kellett, Director of Recreation and Partnerships at British Cycling backs the position that people with epilepsy can enjoy cycling. Mr Kellett said: “Cycling is an activity that offers many health, environmental and social benefits. There’s no reason to suggest that anyone with epilepsy should be stopped from cycling or denied access to cycling clubs, and cycling events. It’s just a matter of deciding what type of cycle, route and safety precautions are best for you.”

 

Case study – Katie Ford

Katie Ford is a 27-year-old ultra-marathon cyclist, diagnosed with epilepsy when she was nine. She had surgery to treat her epilepsy which was successful and Katie learned to drive at the age of 18. One year after passing her test though, she had a breakthrough seizure and lost her driving licence, so she took up cycling. Katie says: "After losing my licence, I made the decision never to drive again because of the long gaps between my seizures, up to three years even. It was a blow to my independence having to plan journeys with military precision and rely on others for help, but my bike is the burst of freedom I get back. I don't have to plan, I'm able to just jump on my bike and go wherever I like round London, whenever I like."
“To me, it makes sense that, rather than save up for a car, I save up for a bike. There are draw backs obviously - it doesn't have a boot, I can't carry passengers and it's not the best form of transport for long distance journeys, but then again, it's mine and it's freedom to me. Living in such a big city, there's a big part of me that smiles inside when I'm not stuck in a car during peak time traffic."
"In 2008, aged 22, I chose to do the Race Across America, a 3,000 mile cycling race. I was part of a four-woman team cycling round the clock: we officially finished in eight days, six hours and 55 minutes. It was an achievement I'm very proud of, to become the youngest British female to ever complete the race. But given my motivation was to raise awareness of the ability of people with epilepsy by taking on a really physically demanding challenge, I can't wait to do it again in purple and aim higher, with my own team, focused on raising funds for Epilepsy Action.”

 

Challenging the myth

If you have been denied access to cycling (including electrically assisted pedal cycles), cycling events and cycling clubs there are things that you can do. For example, it might help to show the service provider a copy of our position statement on cycling. This position statement explains the laws that protect people with epilepsy from disability discrimination. It also explains what reasonable adjustments can be made, to enable a person with epilepsy to safely enjoy cycling events.
As a next step you could use this template letter to further explain that you believe that you have been discriminated against because of your epilepsy. 

Myth or Fact ~ Take the Quiz

Click to take the quiz:

 

National Epilepsy Week ~ Myths Day 4

Mythbusting for National Epilepsy Week - day 4 - blood and organ donation

 

Myth: People with epilepsy can’t donate their organs or blood

Fact: You can donate your organs if you have epilepsy but in most cases not blood

 

 

Blood donation

 

According to the National Blood Service, it is very unlikely that people with epilepsy will be allowed to give blood (UK).
People who have epilepsy are allowed to donate blood if they have not taken epilepsy medicines in the last three years, and have not had a seizure in the last three years. These are rules from the Blood Safety and Quality Regulations (2005).

 

The evidence

 

Epilepsy Action does not believe that the available research and academic evidence supports this stance. These restrictions effectively stop people with epilepsy from donating blood.
The main reason for this is that the National Blood Service has stated that giving blood could trigger a seizure. We do not believe there is evidence of this.
A study in Maryland, USA in 1987 found that the difference between people with epilepsy, and people without epilepsy, having adverse effects around giving blood was not statistically significant. This means that no difference in risk could be observed.
A 1997 research paper, also from the Maryland Epilepsy Center, states:

' ... the major reason people with epilepsy are restricted as blood donors is because of confusion in distinguishing epileptic seizures from convulsive syncope (a loss of consciousness). These disorders are now understood to be clearly different. The loss of consciousness and even convulsive activity that sometimes occurs associated with a vasovagal reaction (fainting episode) after blood donation are not directly related to or precipitated by epilepsy and should be distinguished from it. A recent study [the 1987 study] presented evidence of a low risk of adverse reactions in blood donors with epilepsy, and no significant differences as compared with other donors.

...syncope ... may in rare cases trigger an epileptic seizure ... Most of the previously reported patients with generalised epilepsy induced by syncope had no established history of epilepsy ...

We are not aware that donating blood would affect the level of epilepsy medicines in your blood. This means that blood donation should pose to risk to the donor or recipient. Possible risks appear to be limited to the donation triggering a loss of consciousness, and in turn triggering a seizure, or risk of injury if a person experiences certain types of seizures while donating blood. As well as seizures caused by epilepsy, seizures before/after blood donation can be triggered by low blood sugar, low oxygen levels and low sodium, and a variety of other causes. And seizures with these triggers are not necessarily epileptic seizures.

 

Challenging the myth

 

Epilepsy Action has written to NHS Blood and Transplant, asking for clarification on the policy, evidence of why the restrictions are in place, and if the NHS Blood and Transport service will review its position. We have offered to work with the National Blood Service to improve its guidelines for people with epilepsy.
We are pleased by the response we’ve received from the Chief Executive of NHS Blood and Transplant, which acknowledges that the current policy can be improved. We hope this will see moves to change this law in the near future.

The Guardian Epilepsy Supplement ~ and we're on the cover!

The Guardian newspaper published a supplement dedicated to epilepsy today to support National Epilepsy Week... turns out we're on the front cover!!!  I didn't realise it was going to be the main part of the cover, thought it would just be a little bit in the corner!  It's great to see that pregnancy and epilepsy is being covered so much, hopefully it'll make a difference to lots of other women out there, feel quite proud to be so involved in the campaign.

Here's the link to the online supplement:

The Guardian Epilepsy Supplement

Activity of the Week ~ getting outside

Well summer is here and we've got to make the most of it!  Yesterday Riley and me went out looking for amzing wildlife... what might seem an everyday thing that you just walk past can be amazing to a baby...

So we found dandelions :)  they are now at the Dandelion Clock stage and Riley loved watching me blow the little seeds away.

 

Then we listened to the swallows in the barn, their bird song really echoes around in there and is amazing to listen to when everything else is quiet.

Then we did fond something that would be amazing to everyone...  baby Robins in one of the horses stables, they had just fledged but couldn't quite fly over the stable door yet!

So get outside and have some fun in the sun... well maybe not the sun but the outdoors anyway.

And I will just stick on the end something that not every child will have the chance to do, but Riley is very lucky to be able to sit on a very special little pony, Pipe :)

National Epilepsy Week ~ Myths Day 3

Mythbusting for National Epilepsy Week - day 3 - cosmetics and beauty treatments

 

Myth: If you have epilepsy you can be denied some forms of cosmetic and beauty treatments

 

Fact: Some treatments may be best avoided but a blanket ban on treating people with epilepsy could be unlawful

 

 

Cosmetic and beauty treatments

 

People with epilepsy can and do enjoy cosmetic and beauty treatments and spa days. However, while many treatments are perfectly safe, a small number of treatments might be best avoided until your seizures are better controlled.
Service providers should treat a person with epilepsy as an individual, and consider whether reasonable adjustments are needed to deliver the treatment safely. To deny people access to these goods and services just because they have epilepsy is direct discrimination, and for this reason unlawful.
Laser hair removal is one of the beauty therapy treatments that we hear most about when it comes to restrictions. It removes unwanted hairs by using a pulsating laser. This is a service that can be provided in salons by beauty technicians, or devices can be purchased to use at home.
We have been told by some people with epilepsy that they have been denied laser hair treatment because of their epilepsy. The explanation given is either:

• that the laser has an accompanying light that flashes when in use and could trigger seizures, or
• that the person with epilepsy could have a seizure during the treatment, and may burn or injure themselves on the laser.

 

The evidence – laser hair removal

 

The first suggestion, that the flashing of the laser could trigger a seizure, is untrue. Many devices do have a flashing light to indicate it is on. However, this flashes at a rate that should not trigger a seizure in people with photosensitive epilepsy.
It may be possible to be injured if the laser is not properly applied, or if the laser is applied to a sensitive part of the body. This could happen if somebody moves during treatment. Some providers say this is why a person with epilepsy should not have laser hair removal. However, this rule assumes that people with epilepsy all have seizures where they convulse, and this would lead to the laser not being properly applied. It makes a judgement that this risk is sufficient to prevent someone with epilepsy undergoing this treatment. But if the risks are explained and accepted by the person with epilepsy, then we do not believe a ban is appropriate.
In many cases, even people who can prove that they are unlikely to have a seizure will have to provide a letter from their doctor to support this. We believe this is unnecessary.

 

Case study

 

One person who contacted us after being refused a laser hair removal session is Claire from Cardiff. Claire explained what had happened: “I was told that I would not be treated when I turned up for a laser hair removal session. I had been before but since then my seizures had increased. This was the most embarrassing, upsetting experience and I felt extremely discriminated against. “I was refused the treatment despite the fact that I had my mother with me for support and safety purposes 'just in case'. More importantly, I explained to the clinical staff that laser treatment did not affect my epilepsy as I am not photosensitive. This was backed up by a letter from my consultant which they had requested before they initially began any of my sessions. “I was sent home crying, and because I was so embarrassed and upset, I asked for a refund for the sessions that had not been used. This request was declined, despite a formal letter being sent to the manager of the establishment. I feel I have really been discriminated against.”

 

Challenging the myth

 

A person with epilepsy can be denied access to a service if it is potentially hazardous to their own, or another person’s, health and safety. There would also have to be no reasonable adjustment that could be made to make delivery of the service safe.
If possible, contact the service provider in advance of your appointment to discuss your epilepsy. You should explain what happens before, during and after your seizure, the frequency of your seizures or how long you have been seizure free. It might also be helpful to explain your seizure pattern (for example, if you only have them at night, or on waking).
This information will give the service provider the opportunity to consider whether reasonable adjustments are required to make a service safe. This is a requirement outlined in the Equality Act and Disability Discrimination Act. Contacting the service provider before your visit gives them time to make the reasonable adjustments required. For example if you are going for a massage, there are specific oils that should be avoided. The service provider can make sure that more appropriate oils are available before your visit.
If you are wrongly denied access to a service, there are other things that you can do. For example, you could show the service provider a copy of our position statement on cosmetic and beauty therapies. This statement briefly explains the laws that protect you from disability discrimination.
As a next step you could use this template letter to further explain that you believe that you have been discriminated against because of your epilepsy.
Some beauty chains have told Epilepsy Action that they can’t offer laser hair removal to people with epilepsy because of manufacturer guidelines. We understand this position, from a safety and legal point of view. We have taken this issue up with the manufacturers of some of the leading laser hair devices. We continue to challenge this advice with manufacturers, providers and the organisations who regulate them.

Epilepsy Action Epilepsy Awareness Training

So I did an epilepsy awareness presentation for a small care home today.  Feels like a long time since I've done one (probably because it is!) I think it went ok... always difficult to judge what people think.  But it feels good being able to go out there and hopefully make a little bit of a difference. :)

Anyway to find out more about Epilepsy Awareness Training in your workplace here's a link to the section on the Epilepsy Action Website...

Epilepsy Awareness Training

National Epilepsy Week ~ Myths Day 2

Mythbusting for National Epilepsy Week - day 2 - all seizures look the same

 

Myth: All seizures are the same

 

Fact: There are around 40 different types of seizures

 

 

Epileptic seizures

 

It is a common misconception that all seizures are the same. However, this is untrue and there are around 40 different types of seizure. A person with epilepsy may have more than one type.
Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity. This intense electrical activity causes a temporary disruption to the way the brain normally works, meaning that the brain’s messages become mixed up. The result is an epileptic seizure which can happen in any part of the brain. The type of seizure people experience depends on where in the brain the electrical activity takes place.

 

Background

People tend to think all seizures are the same as they are more familiar with tonic-clonic seizures. When having a tonic-clonic seizure people go stiff, lose consciousness, may fall to the group and jerk or convulse.
There are many types of seizures and as epilepsy is an individualised condition, seizures can affect people in a way very unique to them.
Other types include:

• Focal seizures
• Absence seizures
• Myoclonic seizures
• Tonic seizures 
• Atonic seizures

Some types of seizure are not always easy to spot and signs could include:

• Chewing
• Smacking your lips
• Strange body movements
• Difficulty understanding or speaking or
• Appearing to daydream

 

Case study

Nicole Boren was diagnosed with epilepsy when she was 14-years-old and is now 35. Many people have misinterpreted her seizures and behaviour when she has a seizure. Nicole told us: “I had complex partial seizures not tonic-clonic ones, which people tend to be more familiar with. “In the past people have thought that I was behaving strangely and that this must be because I was on drugs or drunk. I don’t think people realise how confusing and frightening seizures can be for people with epilepsy. Often I couldn’t remember what had happened and could find myself in a place with no recollection of getting there.”
Challenge the myth Epilepsy Action aims to increase understanding about epilepsy and the different types of seizures. We do this through a range of epilepsy information including our videos.

From the Epilepsy Action Website... (will publish each days myth during National Epilepsy Week)

 Mythbusting for National Epilepsy Week - day 1 - epilepsy and driving

 

Myth: People with epilepsy can’t drive

Fact: Some people with epilepsy can drive depending on their seizures

 

 

Driving with epilepsy

Some people do not believe people with epilepsy can drive. Even some people with epilepsy are not aware that they might be eligible to drive.
In the UK if your seizures are controlled (for over a year), or meet specific criteria, you should be able to apply for some types of licence.

 

The evidence

 

Some studies have suggested that driving is one of the top concerns for people with epilepsy.

There is evidence to suggest, quite sensibly, that drivers with active epilepsy are a greater risk on the road than those without it. But research also suggests that drivers with epilepsy, who follow their treatment plans and the driving regulations, pose no greater driving risk than the general public. One study from 1995 found that epileptic seizures accounted for 0.15 per cent of all serious accidents. This means that for every 1,000 serious accidents only one was the result of an epileptic seizure.

 

The rules in the UK

 

There are two common types of driving licence. Group 1, which applies to cars, motorbikes and most other small vehicles. And Group 2, which applies to bigger vehicles such as lorries, heavy goods vehicles and other specialised types of vehicle.

People with epilepsy are very unlikely to qualify for a Group 2 licence. To do so, a person would have to be seizure-free for 10 years, and have not taken epilepsy medicines for at least 10 years. Epilepsy Action believes a period of 10 years seizure freedom alone should be enough to qualify.
People with epilepsy who take medication can qualify for a Group 1 licence. However, in general, they will have to have not had a seizure in the last 12 months. This has been the law since 1994. Earlier in 2013, the law was changed slightly for some types of seizure.

 

Case study

 

Alan Greg has had epilepsy for 40 years, since he was a child. He is a driver and passed his test 10 years ago. Alan told us: “As soon as I passed my driving test I had an epileptic attack and had to wait the year before I could drive again.

“I have focal seizures which are well controlled by the epilepsy medicines I take. Some people don't like me driving but the DVLA and their medical advisers would not let me drive if it was not safe to do so. Generally most people I know and people who get in the car with me are fine about me driving. They know that my seizures are well controlled and unlikely to pose a risk.”

 

Recent changes

 

Earlier this year, the rules and regulations that apply to people with epilepsy changed. Epilepsy Action gave its views on the changes when it submitted a response to the consultation on proposals to amend Driving Licence Standards for Vision, Diabetes and Epilepsy.
There are now new rules relating to whether people can drive if:

• They have only had seizures while they sleep
• They have only had seizures that do not affect their consciousness
• Their doctor changed their dosage or medication, but they have now gone back to the original dosage or medication.

Some studies have suggested that driving is one of the top concerns for people with epilepsy.
There is evidence to suggest, quite sensibly, that drivers with active epilepsy are a greater risk on the road than those without it. But research also suggests that drivers with epilepsy, who follow their treatment plans and the driving regulations, pose no greater driving risk than the general public. One study from 1995 found that epileptic seizures accounted for 0.15 per cent of all serious accidents. This means that for every 1,000 serious accidents only one was the result of an epileptic seizure.

1 year on ~ I still miss him so much

It was a year yesterday that my Grandad died.  I can't believe a year has passed since that day.  It all happened so fast at the time, one minute he was here, the next he wasn't then Riley arrived.  I don't think I had time to get used to him not being around.  He was such a huge part of my life.  Everyday things remind me of my Grandad, slowly they are making me smile more than cry.  I have so many memories of him, I feel so lucky for that.

So yesterday we went and planted wild flowers around his tree.  I hope one day I'll be able to go there and just sit and talk to him, but at the moment I still can't quite do that yet.  When I see angel rays it reminds me he's still watching over me, so I'm getting there, bit by bit.

Nursery ~ maybe we're gettin there...

Last Wednesday I was so sure they were lying to me at nursery saying she had hardly cried at all... she had screamed and thrown herself at Rich when he left her and when I picked her up she was smothered into one of their chests sobbing with big red puffy eyes...

But this week, she still screamed and tried to throw herself into my arms, when I left her (just what I needed when this week isn't exactly going great!)  But Rich said when he picked her up she didn't cry at all which is a really positive step so maybe she is starting to settle in a bit more.  I hope so, it is so hard though leaving her in such a state!  Still a way to go though.

Apparently there's another boy who has the same rabbit toy as her and they both want both of them!  Quite amusing I thought!

Starting to really get around :)

Well there's no stopping her now, she's super fast crawling around and has now started to pull herself up onto furniture and can shimmy along it all be it quite slowly.  She's also got a walker that she can push along.  It was going a bit fast for her on the wooden floors but on the carpet with some heavy books in it (I knew my uni anatomy and physiology books would come in useful one day!) she pushes it along really well :)

I am so happy she is crawling and getting around, so many people said I'd change my mind about wanting her to crawl when she starts and gets into all sorts of trouble.  But aside from me no longer worrying my meds and seizure might have effected her development... it is just so nice to watch her exploring her world and she just seems so happy to be able to get around without always needing me.  It's great :)

Epilepsy Week ~ Next Week (from the Epilepsy Action website)

National Epilepsy Week – 19-25 May 2013: lets get myth busting!

This year’s National Epilepsy Week is fast approaching and we have a range of activities taking place throughout the week.

Myth-busting

We want to use the week as an opportunity to highlight some of the myths that exist about epilepsy.  The PR and campaigns team will be tackling myths throughout National Epilepsy Week.  We’ll be posting information on our website each day to highlight the truth about some of the issues people with epilepsy told us about.
To help improve understanding about these myths we will be launching an online myth-busting quiz too. You can share it with your friends and colleagues and challenge people you know to find out how epilepsy aware they are.

Some of the issues we’ll be looking at include:
•    Epilepsy and going to the gym or leisure centre.
•    Myths about seizure triggers.
•    Epilepsy and blood donation.
•    Epilepsy and laser hair removal.
•    Driving and epilepsy.

We want to help people to challenge the myths about epilepsy, especially if they are being treated unfairly. During National Epilepsy Week we’ll be telling you how to challenge out-of-date policies or rules that have stopped you from taking part in an activity or accessing a service.

Read all about it in The Guardian ~ There will be a supplement in the Wednesday 22 May edition including a range of stories and features to help raise awareness of epilepsy. We're going to be in there!

Epilepsy Action Edwards ~ recognise up to 10 education establishments, in the UK, who are providing a supportive learning environment to pupils or students with epilepsy.

New bus adverts ~ The adverts will feature real people affected by epilepsy and will be displayed on the inside of 50 buses in the Bath area for around two months.

Some Events confirmed for National Epilepsy Week:

Saturday 18 May ~ treatment options event in Llanelli.  The day will give information to people with epilepsy about the options for treatment beyond medication in difficult to control epilepsy
 
Sunday 19 May ~ Chiltern Hills Classic Vehicle Rally, near Aylesbury.

Monday 20 May ~ We're running an epilepsy-awreness training course for Dyfed-Powys Police.

Monday 20 May ~ Collection and awareness event at London Waterloo railway station.

Wednesday 22 May ~ Ann, our national manager for Wales, will be doing a radio phone with an epilepsy specialist nurse on Mon FM (listen online) between 11am and 1pm.

Wednesday 22 May ~ With a local epilepsy specialist nurse, we're running an advice and information event in the atrium of James Cook University Hospital in Middlebrough.

Wednesday 22 May ~ There's a bridge tea event taking place at Manton village hall near Oakham in Rutland.

Thursday 23 May ~ We're holding an advice and information day in Llanelli shopping centre.

Thursday 23 May ~ We're holding street collections in Newbury and Guildford.

Friday 24 May ~ We'll be making presentations to winners of the Edwards 2013.

Saturday 25 May ~ Collection and awareness event at London Euston railway station.  I'll be there :)

Saturday 25 May ~ We're running a treatment options event in Belfast. The day will give information to people with epilepsy about the options for treatment beyond medication in difficult to control epilepsy.

Saturday 25 May ~ We're running a tombola and awareness event in the Prospect shopping centre in Hull.

All week ~ Our Aberystwyth branch will have epilepsy awareness displays in different locations across the town.  They will also be presenting six doctors' surgeries with our primary care packs and GP packs to engage more with local people and healthcare providers in the area.

Wednesday 29 May ~ We're running a collection at the Morrison's store in Guiseley, Leeds.

Thursday 30 May ~ We're running a collection and doing bag-packing at the Morrison's store in Yeadon, Leeds.

A Tribute to Mac ~ a very special horse

 Mac

I never let my epilepsy stop me doing the things I loved.  I have grown up around horses as my family run a livery yard.  I have had a few lovely horses in my life, but for the last 14years... half my life... I have had Mac in my life, I don't think I ever took him for granted, I always felt very lucky to have a horse who you could rely upon so much.  He looked after me, he was so sensible, he wouldn't make a fuss about things and he was so much fun, we used to do gymkhana, he loved it.  I always felt able to just go for a ride, think things through and get away from things for a little while.  My epilepsy didn't really bother me when I was riding Mac, I knew he'd look after me if anything did happen. But Sunday night he had to be put down, it was completely unexpected, he had a few health problems but nothing major, he got a twisted gut and so my Mum had to make the incredibly hard decision to say goodbye.

It doesn't seem real at the moment, I know some people will say he's just a pet, but to me he was more than that, he was a friend, he'd always been there for me, horses never judge.  He was there through the good times and the bad, when I was being bullied, when I was diagnosed with Epilepsy I'd sobbed into his mane.  He was a big part of all the best times of my life too, I remember revising for my exams on our Saturday rides with a friend, we'd write everything onto flash cards and take them with us!!!  Whenever something great happened in my life I'd go for a ride all happy and it would give me time to take it all in.

So this is a tribute to Mac who changed my life, there will never be another horse like him, I was so lucky to have him.

Activity of the Week ~ We love the Outdoors

I know I was focusing the activities inside for rainy days, but the weather has been so great this week (on the whole) that I thought I'd do one for outside...

Mini Beast Hunting

Riley's crawling which is great :) so basically got her out in the garden and let her crawl around, we searched for mini beasts, didn't find many but we searched anyway.  You can try putting down a white sheet and see what creatures you find land on it...  Riley also enjoyed picking the dandelions as she crawled along, after eating one I think she worked out they didn't taste very nice so picked them rather than eating them.

Washing

Then we hung out the washing, that's a great thing to do together (as long as you don't mind a few of your clothes strewn across the lawn!) Riley loves watching the washing going round and helping take all the clothes out the basket.

Basically just enjoy the outdoors, remember don't stay in the sun too long and stick some suncream on them... then enjoy :) 

We love the outdoors, there's so much to do and see... in the words of Billy Connelly...

"There's no such thing as bad weather, just the wrong clothing"

Ohhh and we're having a picnic bench delivered this afternoon so we can all eat outside :) will be great for Riley's birthday party (here's hoping for good weather...)

New Facebook Group

Hi everyone,

Just realised how difficult it is to post in this Blog so thought I'd set up a Facebook Page so people can share their experiences and experiences.  Hopefully it'll help people to make friends and get some support.

Link is Top Right above my profile.  Or click the link below:

http://www.facebook.com/groups/576561592356253/members/

Will be great to hear from you :)

Love Clair xxx

One Swallow doesn't make a summer...

...but lots do :) It's a beautiful warm day today. Spent the morning in the park enjoying the sunshine and now at the stables watching the swallows darting around. They are beautiful bird, they hold a very special place in my heart and remind me of my grandad :)