Wednesday, 23 April 2014

All change on the meds front...

Ok so now it’s definitely going to happen… 2 seizures in 3 months is not good for me. A med change is inevitable.  I know I could just call my epilepsy nurse and we could start the transition to Keppra straight away, but that just seems such a light way to make a huge change.  

I feel I need to discuss it with my consultant, I don’t know why really, I guess I just have lots of questions and would rather ask them face to face.  How long will it take? (I know the answer will be we don’t know) What happens if I get side effects? Is Keppra even the only option? The list goes on and on…

I guess the truth of the matter is I’m really anxious about it all, I mean 10 years of being on 1 drug, at least I know where I am with Lamotrigine.  I’m worried Keppra is going to change me and I won’t know it.


Anyway at the moment I’m trying not to think about it too much, the sun is out and I’m just going to enjoy it.  My appointment is at the beginning of June so after that I know there will be challenges to face but for now I’m going to try not to worry too much.

Sunday, 20 April 2014

Our amazing American adventure in pictures

Where do I start?  It was amazing!  I think it will be easier to put it into pictures so here it is…

We're on our way :)



Welcome to America (at 1am London time)


Riley's behind bars! (at Alcatraz)



Gotta get a Tram in San Francisco

]

Baby, Mummy and Nanny


Winchester Mystery House


#DancingRobot


Exploring Gold Country


The Big Trees



Exploring the wild west (film country)


The beautiful Emerald Bay at Tahoe


Snow!!!




Rich and me on skis together


My wonderful Dad who looked after me during my seizure


So Cool!


Auntie Nikki and Riley on a sledge


Some apres ski



Groveling around in the dirt :)


Fun in the desert



How old are we????


Enjoying the Oasis



Badwater


The view from our beautiful hotel on the last night


Seaworld



One exhausted baby!


Last stroll along the beach


Sleepy, happy baby flies home :)


All I can say is it was an incredible 2 and a bit weeks :)

The Crash Reel

I watched The Crash Reel yesterday...

The dramatic story of one unforgettable athlete, Kevin Pearce; one eye-popping sport, snowboarding; and one explosive issue, Traumatic Brain Injury.  A comeback story with a difference.
This eye-popping film seamlessly combines twenty years of stunning action footage with new specially-shot verité footage and interviews as it follows U.S. champion snowboarder Kevin Pearce and exposes the irresistible but potentially fatal appeal of extreme sports. 
An escalating rivalry between Kevin and his nemesis Shaun White in the run-up to the 2010 Olympics leaves Shaun on top of the Olympic podium and Kevin in a coma following a training accident in Park City, Utah.  Kevin's tight-knit Vermont family flies to his side and helps him rebuild his life as a brain injury survivor.  But when he insists he wants to return to the sport he still loves, his family intervenes with his eloquent brother David speaking for all of them when he says, “I just don’t want you to die.” Kevin’s doctors caution him that even a small blow to the head could be enough to kill him. Will Kevin defy them and insist on pursuing his passion?  With his now impaired skills, what other options does he have?  How much risk is too much? 
The Crash Reel - The Ride of A Lifetime - Directed by Lucy Walker
It is an amazing film which portrays brain injury in a very real way.  It is filled with amazing stunts and highlights the sacrifices behind them.
It really got me thinking... do I think about the risks enough?  Am I so intent on not letting epilepsy stop me from doing anything that I can't accept that there are things that I just can't do.  Like my job, I felt like I'd failed because I couldn't do the job I wanted, but am I too focused on succeeding in everything that I can't accept when there are things I just can't do.  Like running the marathon... it's something I could have done, before my epilepsy started... but my epilepsy may mean I just can't do it and I shouldn't see it as I have failed.  But at the same time maybe I need to think about my family, how hard am I going to push myself? I can't do it in a year, I'm not like I was before and I need to accept that.
I guess what I'm saying is maybe I shouldn't get so obsessed about not letting epilepsy stop me doing anything and then feel I've failed if something doesn't work out.  I think part of me doesn't want to look at the risks, just keep going without thinking about the possible consequences, but maybe there are things which I have to say no too, I think I need to learn to accept that.
It is definitely a film everyone should watch, it will really make you think...

Saturday, 19 April 2014

My aim - to run the 2016 London Marathon

Ok, I’ve always wanted to run the marathon.  The only problem is I have had quite a few seizures while running.  I’ve been told that it’s unlikely they are linked but it is still quite daunting to start running again.  

But I am determined to run the London marathon, I was think of going for the 2015 one but I don’t think anyone else is quite so confident and I know with my meds changing it will put a lot of pressure on my family as it is.

So my aim will be the Royal Parks half marathon in October 2015 and then the London Marathon 2016.   I am going to start running next week and we will see what happens, but it’s good to have a plan.

I plan to run for Epilepsy Action hopefully helping other people with epilepsy achieve their goals.

Thursday, 17 April 2014

We're on Neuro Nula

Neuro Nula is a website, currently underdevelopment (I think possibly nearly finished...) but which when it's finished aims to share stories and connect through a forum people affected by neurological conditions.  It looks like it's going to be fab (click below to see more).

Anyway, we have shared our story and it's been on social media a bit which is pretty exciting :)

Wednesday, 16 April 2014

Please everyone read this :)

So I went to the Epilepsy Action ‘Weekend For All’ last year and I know I said at the time how amazing it was. Well the 2014 dates have been revealed:

31st October 2014 - 2nd November 2014

It’s going to be in Southend this year (apparently at a pretty nice hotel!).

Marie is looking for speakers at the moment, so I’m calling all health professionals with an interest in Epilepsy, could you give a few hours of your time to share your knowledge with people affected by epilepsy?  It would make a huge difference to so many.

It also needs at least 120 people to attend to make it possible so if you would like to come along please also contact Marie.  For a very reasonable price (I think £50, possibly a bit more) you get accommodation for 2 nights, food, the chance to speak to specialists and socialise with other with epilepsy.  It really is so so cheap for such an incredible event.

So what are you waiting for? Email Marie now and I'll see you there!  medgar@epilepsy.org.uk