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.

Spot what's missing?

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 :)

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

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.

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 :)