Epilepsy and DLA?Confused.

cybermum

Hi,
I have had epilepsy since I was 16(so 18 years now)and it seems to be getting more difficult the older I get.

I have tonic clonic seizures and get no warning whatsoever when they strike.
I saw a consultant last year(I was having a period of a few years when they said they didn't need to see me) and he said it may be a good idea to go on episenza (sp?) for two reasons.
To provide a steady stream of the meds through the day and also because I have terrible memory problems and instead of twice a day I can take the full dose once per day.

He also mentioned DLA.I never ever gave it a thought because I was told years ago that it is nigh on impossible to receive DLA for epilepsy unless its very very severe.

I do have a majority of seizures at night in bed which means my husband needs to be alert in case I have one.I do scream as I go into the seizure so he knows fast by the 'scream' that I am having one.

I can't take a bath alone(someone has to be nearby in another room)and can't cook alone due to the fact DH and I are scared of having a seizure unwarned and being near boiling water etc

It can cause problems as I have two small children(1 yr and 4 yr old) and I have to try to be careful which is pointless as when I do have an attack I don't get a warning beforehand.
Its the little things like I cannot bathe my children alone for obvious reasons and having cushions around when playing with them etc

But as my seizures can vary wildly I don't think it would be worth my filing out forms.
Up to three years ago I would only have a seizure once every 6 months.They have now increased,my last one was 2 weeks ago and left me ill for days(tongue,banged all my shoulder and neck etc).
The AED's also I think have given me terrible memory problems.I can forget what I went outside for,if I am meant to meet someone or many important things .
My consultant said though that he thinks its because of the seizures and the effect they have on the t/lobe.

My father has suffered from the same seizures since he was 18 and my brother also has them(though he gets an aura) and all uncles and 2 aunts on my fathers side have them.
So there is a family history(my consultant got excited by this wanting to do a study on us).

Sorry I have rambled on,my main question being is it worth my investigating this further or am I wasting my time.
I have problems concentrating for long periods and worried that this will be very lengthy and not apply to me anyway.

Thanks for reading all this.

Jojo_the_Tightfisted

Sounds to me like it's definitely worth you claiming. They know needs vary and you obviously need some form of care day and night.

The way you have explained it here seems pretty clear to me, anyway!

Prinzessilein

Yes, it definitely sounds like it would be worthwhile applying for DLA!

I also have a condition that varies wildly. (I have ASD which includes Asperger's, Dyspraxia and Dyslexia). When I applied for DLA I sat down with my mother and we looked at ho I had been in the past week and then the week before. We made notes - and included every little thing. On some days my dyspraxia is so bad that I can't handle knives and can;t lift a pan...so cooking is impossible. We made a note of which days this had happened. How often had I fallen over. How often did I black-out and how long before I came to myself again? How often did I go out and what help did I need?....Mum had to help because my short term memory is just so bad!...Then we took this information to DIAL. They were brilliant. They filled in the DLA application form for me - they know just how to express things ...(I am University educated and still found the forms daunting and with a concentration span of around 30 seconds some days, it would have taken me forever to fill them in!)...they alos dealt with the appeal (be prepared for an initial refusal - they make the occasional (!) mistake!)

What I'm trying to say - in a long winded way - is that there is help available. People to help you decide if you are entitled (and it does sound as if you are) and to help with the application process.

So, go for it. It makes such a difference to me. Iive been able to get some adaptions to my flat - in particular the kitchen - that enable me to have a little more independence. (DIAL helped there too - I had no idea of the array of stuff that is available!)I also found I am eligible for a bus pass - which makes travel easier (and affordable!). All I want is to be as 'normal' and independant as possible and DLA helps with that....and maybe it'd help you too?

Gingerbiscuit_2

Go for it, you would qualify with needing help with domestic tasks, and it is to provide extra cost for things like if you are on your own and kids need feeding do you use alot of ready made things can go in mircowave etc.
If you cant drive with kids and need to get around/go shopping are you using taxi to manage.

They might aruge that if the majority of fits happen in bed you are alrady in "a safe place" but you might need help after to look after self.

It would be worth it even if you only get the lower care or mobility parts.

jimbms

Apply for it, many with Epilepsy don't claim due to bad wording on the guidline that shows it is rarely allowed for this, whereas in fact this is intended only for certain types of epilepsy where seizures are minor and far between and not for those who have severe and sudden seizures without warning.

Molly41

Gingerbiscuit wrote: »

Go for it, you would qualify with needing help with domestic tasks, and it is to provide extra cost for things like if you are on your own and kids need feeding do you use alot of ready made things can go in mircowave etc.
If you cant drive with kids and need to get around/go shopping are you using taxi to manage.

They might aruge that if the majority of fits happen in bed you are alrady in "a safe place" but you might need help after to look after self.

It would be worth it even if you only get the lower care or mobility parts.

Yes it definitely sounds like you need supervision at night which is the criteria for middle rate care!

MrsManda

Most people with epilepsy cannot claim (me included) but does sound like your epilepsy is serious and uncontrolled therefore I would definitely suggest you applied, especially as your doctor is willing to support an application I know it's not as good as your epilepsy being controlled and being OK but every little helps

Indie_Kid

When you do the form, the help has to be from another person and it has to be reasonable - you don't actually need to be getting the help. (ie, if you had the time and help from another person, what would you like to do?)

They don't include domestic tasks (apart from cooking) as care.

[Deleted User]

If your epilepsy means you have care and or mobility issues then you must apply,i have been getting DLA for epilepsy for 11 years now,i get mrc and lrm,it sounds like you might get hrc and lrm,a GP told me when i first applied that the best phrase to use was"the threat and reallity of seizures",the fact that you like me get no warning also helps your case,if you need more advice on this post again or feel free to PM me.
Meanwhile check out the NSE website:

http://www.epilepsysociety.org.uk/Homepage

its full of great info and has a great forum(all free)

Indie_Kid

You also need to include what happens after your seizure - are you confused? And mention if you hurt yourself or others during the seizure.

cybermum

Thanks everyone.
Also thanks Woodbine for the website which I will take a look at later on this evening
I think the phrase "threat and reality of seizures" sums it up well.
I don't always have them in bed,had a couple as I was walking downstairs (one of which has left me with an ongoing arm problem) as well as early morning when I have been up and about for say 15 minutes.

They seem to be the trigger times I have been affected with them.

Yes ,I am very confused and frightened when I 'come around'.DH when he sees one says I act like I do not know them and act very scared at seeing them.
It can then take me several hours to piece together the day ,what has happened or what I would have been doing and of course exhausted.

The physical things like badly bitten tongue,banged head and muscular pain from the force of the seizure leaves me ill for days after(seems to be longer to recover older I get lol).

Thanks for your advice and I will look into it now and look into speaking to someone at CAB also.

Woodbine I may just PM you if I need you,thanks