STORIES ABOUT CHRISTIAN AND EPILEPSY.

It could easily be a bleak negative story because epilepsy is "a

bugger" "the inevitable waiter in the wings" "the black crow on the
shoulder".....but, on the positive side

1. A can do attitude ....go everywhere and anywhere but scan a
room when you go in, clear a space seamlessly, move the
glasses from a restaurant table, never sit behind the driver in
a car.

2. Everyone offering support and friendship to Christian ( his
circle and support team) got together and talked about what
his seizures looked like to them..reached agreement on what
we were all seeing and how we would describe...to ensure a
really clear flow of information for good support. Christian
has a big book ( his epilepsy is complex and so far,
intractable) called "me and my epilepsy" which records
everything we know about Christian's epilepsy and what we
have learnt from him and from each other about how he
prefers to be supported.

3. Oxygen is often needed. ... So to avoid over dramatisation
we have strategically and subtly placed cylinders behind the
sofas, beside the bed, in backpacks.

4. Advocacy. People around Christian who know him well and
are ready and able to speak up for him. They are informed
about the Mental Capacity Act and Consent. Quality of Life
and Best Interest are high on their agenda. All of this is
particularly important when you support someone who is non
verbal in their communication and manages a complex drug
regime. All of this is built into recruitment and induction (the
very formal terms for our experiential, learn on the job, taught
by Christian and his circle approach!) we use recording that
does not negatively dominate Christian's life but supports
inclusion and participation.

5. It can be very difficult to know what is epilepsy and what is
not ....uninformed opinions can cause misery. When epilepsy
is mis interpreted or missed ( eg in absences or in complex
partial activity) then great difficulties can ensue ...that
convenient label of "challenging behaviour" may appear.
When you are possibly/ probably feeling dizzy, disorientated,
scared and are pre or post seizure ......you may need to
simply hold hands. Christian has always needed to do this
...but at school there was a behavioural programme to "break
him of the habit".

6. Timetables can be challenging when you sleep all day after a
seizure and are then awake and full of beans all night. We
have thrown away those time related plans and are very
flexible ....we make lots and lots of plans not just one so that
there are multiple options. 24 hour supermarkets have been
a great resource!

7. Build safety and "surveillance" in without limiting quality and
opportunity. We found an architect ( in Sheffield!!!) who got
to know Christian before helping him design his part of the
house ....now we have doors which fold back in his bedroom
to bring the outside in on days when epilepsy enforces a day
in bed , a bath in the middle of the room and porthole in the
bathroom door ( privacy and dignity+safety). Sofas where
recovery can happen and life go on around and with
Christian .... Epilepsy can be very isolating.

8. See people in the mainstream of life who also have epilepsy
as a great resource. They can tell you how they feel on their
medication, how they experience their seizures and you can
check up that the standard of care that someone with
capacity and no learning disability has is not too different
from that of someone with a learning disabilty ....rights and
equality.

9. It is very helpful to remind oneself and other people that
epilepsy is a long term condition and that support is needed
to develop strategies to live a positive healthy life with that
condition. It is a main focus for NHS England and again we
need to ensure that people with LD are treated very fairly in
this respect. An example ..Christian's medication is not good
for his teeth so we advocated for 3 monthly ,double dentist
appointments not the usual fleeting 6 monthly arrangement.

10. Safety gear...to wear a helmet or not to wear a helmet?
Christian has a drawer full of rugby helmets which he
customises with a choice from his rainbow of bandanas and
often a beanie hat. All quite groovy and individual ....it also
means that he can stand alone when he wants too and avoid
a head injury if and inevitably, when he falls. A couple of
times Christian has made it quite clear that he wanted to be
without any headgear and whilst we supported him in the
wish it was difficult not to be incredibly intrusive .. Standing
close to catch him!

11. Christian has seizures every day, a varied picture,
unpredictable and often very debilitating ....however, he
travels, works, is a regular at his pub ...... And so much
more.