Some very Interesting things are Coming

Some very interesting things are coming, had this emailed to me yesterday.

Dear All

I’m writing to a number of you from the BU Carer and Service User Partnership; some of you I’ve managed to speak to, but to others this will be new.

The Adult Nursing team are hoping to set up a ‘simulation activity’ with Year 2 students.

The aims of the activity are:

1.    For students to undertake a simulated assessment of a “real” patient as part of a small peer group

2.    For students to “handover” the patient in a simulated ward report  to peers and academic staff

3.    For students to receive feedback on their performance through a)a short written report from the patient b) peer and academic verbal feedback.

So the essence of  the exercise is that you (as the patient) will undergo an admission to hospital or a first (home) visit in order for the student to do a nursing assessment and care plan. You won’t have to undress and the activity will take place in our skills labs which are set up like hospital wards or home settings.

The student will then do a handover in another room and you will then complete an evaluation form on how the student conducted the assessment.

That is pretty much all of the detail I have at this stage. We are holding a meeting to plan this and hear your thoughts about it. I would love you to be part of this, but by coming to the meeting you aren’t committing yourself. The activity is timetabled for February and May 2015, but we need to plan early because of the large numbers of students!

The meeting will take place

On: Friday 8^th August 2014

Time: 11am – 1pm

Place: Bournemouth House

            19 Christchurch Road

            Bournemouth

            BH1 3LH

Tea/coffee will be provided.

Of course I replied with a “yes I'm on board count me in.

This is all part of working with the Bournemouth University Carer and Service User Partnership, a group of fantastic wonderful people. I am a Service User, and I like being one I feel like I am giving something back to the people of tomorrow. For now this is just a meeting on the 8^th, but fingers crossed it can turn into something more. I have had some hospital experience, so I have something I can bring to the table. (Because you know as the say sharing is caring)

I hope I bring some good by the things I share.

And it's another step in the right direction to help get the message of FA - Friedreich's Ataxia to those who don't know anything about it.

One of my all time Favourite Gigs

In the last few years I have been quite fortunate, to seeing some of the biggest bands in Rock/Metal from the likes of AC/DC, Kiss, Ozzy Osbourne, Judas Priest, Motorhead, Iron Maiden & The Big 4 (Which is Metallica, Megadeth, Slayer & Anthrax)

Some pretty cool band name dropping right there \m/ 

I’m going to share a story of one of my all time favourite gigs. As today is the release of Fozzy’s new album - Do You Wanna Start a War (In the USA)

So we have to go back to 2010, the night I saw Fozzy in a little small pub in Southampton called The Talking Heads.

As you all know I’m a big time wrestling fan, it was through wrestling that I got into Fozzy (For the ones that may not know, the lead singer of the band is professional wrestler Chris Jericho)

At the time I use to listen to the wrestling radio talk show called Ministry of Slam, and that’s where I heard about this gig. Back in the day that radio show was ran by people that I call friends now, and one of the radio show’s host at that time was Lawrence Case (Who is the lead singer of a band from Bournemouth called Voodoo Vegas and they are Fantastic)

Voodoo Vegas were one of the support bands that night and anyway going back Lawrence had a few tickets for sale, I talked to a few friends and because the gig was a Tuesday no one wanted to come.

I thought screw it, I go one my own, and that’s what I did I got talking to Lawrence over facebook and I got my ticket. 

I got the train up from Bournemouth to Southampton, and when I got off the train and left the station. I got a taxi as I had no idea where I was going. Outside the station was a line of taxi and you are meant to get the first taxi but with me being a wheelchair user, I went to the second taxi and asked the driver if he could take me to The Talking Heads. He was reading a news paper, so he wasn’t looking at me and goes “you gotta use the taxi in front” to which I replied I’m in a wheelchair and you’ve got a bigger car, he sorted it out and he took me to The Talking Heads.

The reason I loved this gig so much and hold it so close to my heart, is not because I did it all on my own, but because I was the only one in there in a wheelchair and I was right at the front and during the show when Fozzy were on the stage the lead guitarist Rich Ward, used me as a stool and was strumming away on his guitar pretty much on my lap, it was Awesome \m/ and one hell of an experience, I hope those guys remember it because I sure as do it’s one of those moments that will live with me forever. 

It was my first ever close and personal gig and it rocked, it was a great night Fozzy are so much fun to see live and I have now seen them twice as I saw them this year at Download on the main stage, they rocked it again. \m/ As Chris Jericho would say if you haven’t checked Fozzy out then, get on it People but seriously give them ago and check out Voodoo Vegas too.

Here's some links, go my friends and Rock \m/ 

http://www.fozzyrock.com/ 

http://www.voodoovegas.com/

And also Chris Jericho podcast Talk Is Jericho it's a great show and so much fun

http://podcastone.com/Talk-Is-Jericho

Super Fun Times had at the London Film & Comic and Con

Super Fun Times had at the London Film & Comic and Con

I and all my friends dressed up for it, I was a broken Punisher we also had Snow White, Marty McFly, Bagman, Tank Girl and Shaun and Ed.

I had 2 guys the whole day who both high fived me, and said how Awesome my costume. One of those guys even said it was genius so that was pretty cool. :-)

Spent some money though, just on food and drink, and I also got some pretty sweet Braking Bad action figures. A Heisenberg one and a Walter White one in his cooking meth suit.

Oh and I also got to speak to pro wrestler Mickie James, I meet her back in 2006 and he was hoping that she would recognise me... but she didn’t but it’s cool, it was so long ago and she has most likely seen a ton of face’s since then. It was still great to see and speak to her. 

The only one person I really wanted to meet, but couldn’t find her and apparently I passed her a few times, that person is Summer Glau kind of gutted I never saw her, maybe next time though i0f she goes again.

Had an absolute blast yesterday, loads of fun, loads of laughing and great company in my friends and fellow geeks who were at the con, thank you for a fantastic first con.

After spending a fair few hours at the con, we headed for home it took a 2hours or just over to get out of London as the traffic was crazy.  On the way home I put Snow Whites wig on and my friends started saying it suits me...

Oh yeah i should also add, that the night ended with an Epic sing along to Bon Jovi's - Always as it come on the radio, it was a Magical Moment (Yes! i was rocking the wig, and singing too)
https://www.youtube.com/watch?v=9BMwcO6_hyA

                                                           (I'll let you decide, that one)

 and then we got on the topic of what to go as next year... and one friend said Ariel the little mermaid,

                                                     (They want to turn me into this)

and it went off big time we got talking about how we could paper mache a rock around my wheelchair so it looks like I am sat on it, yes shit got real. 

I am up for doing it going as Ariel, you only live once (so they say) and to be honest it will be a laugh.

So yeah if you want to help out in any way of transforming me into Ariel the little mermaid then drop me a message.

The Power of the FA community is a Beautiful Thing

A pretty wonderful thing happened last night; I got added to a private chat on facebook. Where this Mother of a 9 year old son, has just been was diagnosed with FA - Friedreich's Ataxia (That part not so wonderful)

But what was wonderful, was what followed 

The community of FA’ers 

That got added to the chat, we all came together to answer what questions, and share our knowledge and experience with this Mother. 

It was a beautiful thing 

Even though I am super tired for it (As I up to the early hours of the morning) and I fell out of my wheelchair this morning just after I got up, but none of that matters because last night I helped a person who was lost in an unknown world. (We I hope i/We the FA community helped)

The FA community is amazing; we are like a league of extraordinary gentlemen and ladies.

Amazing stuff

Thanks to the power of the internet and social media, I have got in touch with so many FA’ers from all over this world... I just hope someday I get to meet some of you for real.

I remember when I was diagnosed with FA - Friedreich's Ataxia I spent a lot of time, pretending it wasn’t happening and just trying to live a normal life, who know maybe if I had a way to talk to people who were in the same boat... maybe it would have been easier. (I don’t know, I can’t go back to the past... I’m no X-Man)

I have always said this, and last night was just another case of it... No one knows of FA - Friedreich's Ataxia until someone you know is going through it... So Come on People get Learning about FA - Friedreich's Ataxia Today.

http://www.ataxia.org.uk/

https://www.facebook.com/ataxiauk 

http://www.curefa.org/ 

https://www.facebook.com/CureFA