Monday 28 April 2014

Riley's Swimming Lessons

Riley is still doing swimming lessons on a Sunday and it really is amazing what she can do at only 2.  I’m not saying she can swim lengths; she can’t even swim a metre.  But she jumps in off the side, can turn herself round in the water and can climb out of the pool.  I think the most amazing thing is she is just so confident in the water, she goes underwater and just looks so happy in the water.  She really is a water baby.
But the biggest thing she can do is climb onto a big float, run across it and then jump into the water.  It really is amazing, I wish I could show you a video but alas it takes other children and parents to hold the float so I can’t.  But you’ll have to take my word for it, it is amazing!

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


Exploring Gold Country

The Big Trees

Exploring the wild west (film country)

The beautiful Emerald Bay at Tahoe


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


The view from our beautiful hotel on the last night


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!

Tuesday 15 April 2014

Enjoying the Sunshine

Yeap, with the amazing sunshine this week it really feels like summer is here.  We’re making the most of it and here is a lovely picture of Riley and her best friend Noah (or Nono as Riley calls him) at Nonsuch park.

Photo: Best friends in the sunshine :)

Thursday 10 April 2014

Another seizure...


So the only negative about the holiday was I had another tonic-clonic seizure... that's 2 in 3months, for me that's a lot, that hasn't happened since before I started my meds.

It happened on a chair lift at Alpine Meadows ski resort, luckily I was wearing the harness that I talked about in an earlier post - it could have saved my life.  I think I really frightened my Dad, I hate seeing how my seizures affect the people I'm with.  I think in a way it's worse for them than me.

I can't thank the snow patrol team at Alpine Meadows enough, they were incredible.  They looked after me then took me down in a blood wagon which was definitely an experience!  The nurse in the first aid unit looked after me and even managed to make me smile :) I am pretty sure (however my ability to remember names is pretty poor at the best of times!) that it was Shaun and Chrissy who looked after me, I want to say a huge thank you to them and to the whole amazing team.

It could have easily ruined the whole holiday for me, but the way I was looked after by the team, having my whole family there and none of the pressures of life back home helped me recover pretty quickly. I think it shows how there is a psychological side to recovery, not just a physical one.

I wasn't going to let it stop me skiing though.  I took one day to recover and then went up the only resort with a gondola and just loved being out there (even though the weather was pretty bad).

The next day I was a bit upset and frustrated, I didn't really like the other resort and I could only get to 1 run from the gondola.  It was Alpine Meadows I really wanted to ski at.  My amazing Dad went and had a chat with the ski patrol and I got a lift up on a snowmobile!  It was amazing and I am so thankful for that, just one run down made me smile so much.

On the final day I was planning to go to the resort I wasn't so keen on... I just wanted to be able to ski!  Someone had said I should go down to the disability sport place at Alpine and mention my harness in case they were interested in it.  So I thought I'd do that before I headed off skiing.  They said they already use harnesses and quite often have people with epilepsy ski.  Their harness was a bit better than mine and the attachment a bit different so I rented one, got on a chairlift and skied at Alpine all afternoon.

I think just being told it was OK and I wasn't a huge liability gave me the confidence to go up on the chair again, and I am so glad I did.  I love skiing so much and their is no way I will let epilepsy ruin that :)

So finally I want to thank the whole ski patrol at Alpine Meadows, you are all amazing.  But I'd like to say a special thanks to Shaun who took me down the mountain and Chrissy who looked after me afterwards.  I'm sorry if I missed anyone else, my memory is pretty shoddy after a seizure, but it is you 2 I can remember really well - so thank you :)

Can't believe it's been a whole month!

Wow I can't believe it has been over a month since I last wrote anything.  So much has happened!

The main thing is we went away for almost 3 weeks to California.  It was an amazing holiday.  We did so so much and Riley was a star.  We haven't sorted out any of the photos yet so I think I will wait to talk about everything we did until we have them.

All I want people to know is that we had an incredible time before I talk about the next bit - because I don't want it to seem like the next post ruined any part of the holiday.

Here's one happy Riley - it was such a huge adventure for her and I really do think she loved it :)