Justin's Evening News 2

Today was a good day

I got my mum to drop me off at Tower Park, so I could go and see The Grand Budapest Hotel.

Ever since coming out of Hospital, and because I have had some falls of late, my mum and my older brother watch me like a hawk. Spending the last few days telling them I will be fine today came and my mum dropped me off and then left.

FREEDOM 

I rolled into the cinema and got my ticket for one (Now I must say I do love people, but ever since I was a kid I just love being by my own, it’s just the way I am) so yeah got my ticket to The Grand Budapest Hotel, and the guy at the desk goes “do you want me to open the screen door for you – my reply no it’s okay I’ll be fine. I had a little wonder round and then headed to my screen, then a lady checked my ticket, and then went “I’ll come grab the door for you, I was like I’m okay I’ve got it, and then she was like “are you sure you don’t want me to hover just in case, I was think no thank you I’ll be fine.

The Grand Budapest Hotel

A brilliantly entertaining fantasy outing, The Grand Budapest Hotel is the latest from Wes Anderson, and what great fun it is. This was my first Wes Anderson film, but if any other of his films are like this then I think I may like them too as I really enjoyed this. 

I found it funny, 4 other people were in the cinema, and I don’t think any of them laughed. It’s well written and the cast is brilliant.

After the film I hopped on a bus and went to Poole for the rest of the day (I didn’t tell anyone but this was my plan all along, I phoned my mum and told her when I was on the bus)

I know I am naughty but I just wanted a day by myself, like I used to the good old days. I didn’t do much in Poole just looked around a few shops, brought a film Man of Steel on Blu-Ray

.

It just felt so good to be out by myself, just me, my wheelchair (Betty) and my IPod.

I knew if I told anyone before they would have said no and stopped it, so that’s why I left it to the last minute, to say anything because then they just had to deal with it. 

On the bus on the way home, on my iPod came Bob Dylan – Like a Rolling Stone 

How does it feel
How does it feel
To be on your own

It was wonderful and great to have spent the day on my own and only relying on myself. :-)

London UFC Fight Night

Last night I was @The 02 Arena for UFC Fight Night, I’ve been watching UFC for a few years now and last night was my first time seeing it live in person. 

I have to say a big yes, I would go again. My seats were good, the view I had of the fights was good, and the atmosphere was the best. It was like a big party, everyone was excited and having a good time and it was just really good and enjoyable to be a part of. (Just few snaps i took from last night)

Here’s The Fight Card 

Main Card:

Alexander Gustafsson vs. Jimi Manuwa
Michael Johnson vs. Melvin Guillard
Gunnar Nelson vs. Omari Akhmedov
Brad Pickett vs. Neil Seery

Prelims:

Brad Scott vs. Claudio Henrique da Silva
Luke Barnatt vs. Mats Nilsson
Cyrille Diabate vs. Ilir Latifi
Phil Harris vs. Louis Gaudinot
Igor Araujo vs. Danny Mitchell
Davey Grant vs. Roland Delorme

A friend of mine was going up there to the show, and he was kind and gave me and my other friend a lift up and back which was very cool. As we hit London with all traffic it took us some time to get to The 02 Arena, So we missed the first fight, and me and my other friend went to get some food when we got into The 02 Arena and we got to our seats as the second fight was in the 3round so I guess we missed 2 fights, but this was only prelim fights.

No doubt at some point in future the UFC will be back in London, and after last night’s great experience I hope to return when they do.  

It's just one of those days!!

It's just one of those days!!

This is a saying us FA’ers know all too well, maybe you use a different term for it I use this to describe a bad day. I am having one today and I am going to try my best to guide you through it.

A bad day, or as I put it It's just one of those days!!

Here goes, so I woke up this morning and it took me some time to get out of bed (I didn’t get my 10hours sleep, so I was like a non functioning robot) got myself into my wheelchair and rolled off heading for the bathroom.

Now in the bathroom, using the toilet was fine, apart from transferring as on days like this my legs tend to get a mind of their own and just go in any direction they want to, and not where I want them too.

FA has a lot to do with messages from the brain and on days like this they defiantly get lost in translation. Usually I have to put 100% concentration into everything I do, on days like this it’s more like 80% and that other 20% just gets lost.

For example, after using the toilet I got myself back into my chair to the next step of brushing and teeth and so on. I am there brushing away, and this is where concentration comes in because in a split second I go from brushing to my left and knocking a few things of my bathroom cabinet, how I have no idea just lost concentration and I didn’t fall out of my chair or hurt myself. Even things like picking up soap, simple for most I dropped it like 5 or 6 times, thank god I’m not in prison. (Hahaha sorry bad joke)

Today I am just going to take things nice and slow, and hope for the best. If i don't break something or myself by the end of the day i'll be highly surprised - It's just one of those days!!

I hope i have giving you some inside knowledge to a bad with FA - Friedreich's Ataxia. Take this and add few falls, and dropping cups and smashing a few things and then you got a really, really bad day on you're hands.

They do happen, believe me but they are a rare thing to just like FA - Friedreich's Ataxia.

And in other news

Tomorrow i a going to London for this 

UFC Fight Night, and i got cage-side seats i am very excited. I'm going up with some friends, which we haven't hang out for ages so that's going to be really cool too :-) it's going to be a fun day.

March 4th The Big Talk

Today the 4^th of March, I and mum did our talk to the 30 trainee (Had to do a edited here, because i am a dumb ass sometimes, i don't know why for the life of my why i referred to them as trainee's because they were not they were students, studying to become) OT’s occupational therapists.

It was 3 hours going from 10am – 1pm, and there was me, my mum and another lady who was also a career. The group of the 30 was split up into 3 groups of 10 and we all took a group to run through a check list.

Here is the check list

How can I? 

Consider my client as an individual?

Listen to what say?

Inform them about I am doing in a way they will understand?

Educate them about occupational therapy?

Naturally approach them in a genuine and honest manner?

Treat them with respect and value their opinions?          

Cut down barriers to ensure they feel welcome in my service?

Engage then in a partnership throughout the occupational therapy process?

Negotiate with them about goals and outcomes?

Treat them politely and equally?

Respect them when they change their minds and re-focus their goals?

Ensure they understand about risks, safety 0issues and resource limitations?

Demonstrate confidence in my practice?

I Believe I covered the entire check list, well I hope I did with the experiences and stories I shared. I always started out with Hello I’m Justin and I have Friedreich's Ataxia, and not one of them knew what it was. They do know so mission accomplished, 30 new people in the world now know about FA, as Tesco says every little helps but that wasn’t why I was there. 

I was there to help them and they helped me back, I very much enjoyed doing it. I was very nervous and a little scared going into it, yes I know I have spoke to random people before about FA and things with my life but I have never done a talk about it to groups of people.

They made me feel very welcome and relaxed, and when I got going I couldn’t stop talking, I got to the put where I was losing my voice by the time the 3 hours was up. The time flew by, I guess time dose fly by when you’re having fun. 

Each one of the 30 took one of the Awareness cards I had made, so that’s really good more awareness raised for FA.

I had such a good time today, with it being positive and productive that if the opportunity arises again I’d like to do it again.

Thank you

To any of the student occupational therapists who maybe reading this from today I just want to say thank you, for making me feel welcome and thank you for positive and productive 3 hours.

Justin's Evening News

News Time 

Friday I had Hospital to see one team of Doctors I am under, I got there early and they were running 20mins late they said more like 59mins late.

Anyway I got in there and it was my first time seeing them in 3months so we had a lot to talk about.  We started off with talking about my abdomen scan and my little gallstones and my over lagged spleen, and they listened to my reason why I believe I got them, having read up a little on these two things. It said gallstones can come on by rapid weight loss, and as for the enlarged spleen maybe it’s enlarged because of FA. It said the spleen can enlarge its self by overworking and the spleen fights of infections, and when I was in Hospital for the first operation I lost a lot weight rapidly and had a big infection in my foot.

My Doctor is still going to refer me to a specialist for my gallstones, so that’s good. 

Next up was 

Just before Christmas she sent me a latter in the post for a blood test, for something she didn’t like the look of with my liver.  So I brought it up because I wanted to know and turns out I was on the high scale of Jaundice, that’s right people I am becoming Justin Simpson. Hahaha

My mum said I went a bit yellow in the face and that when I was in Hospital, and my Doctor turned around and asked if I had ever been starved as a child, my mum just looked and her and said dose it look like we starved. 

I talked about the problems I’ve been having with my left leg/hip and explained it all to them and they have giving me some exercises to do, which so far I have only done a few times but it’s loosening my leg which is good.

In other news 

Over the weekend I discovered a slow puncture on my wheelchair wheel, I went to a bike shop today to get it sorted. The man who put a new inner tube in for me found a bit of metal on the inside of the tyre, and to him this maybe why it keeps puncturing, this is the 2^nd time I’ve had to change the inner tube. WHY CAN’T MY LIFE JUST BE EASY FOR ONCE, yeah I wish anyway I rang the company and left a message now wait for someone to get back to me, r yeah the man in the bike shop said if this was on a bike then they wouldn’t even put the tyre back on because it’s too dangerous.    

   

I had some Awareness cards made for when i do my talk, I Don't Wanna Stop till the aliens in the universe know about Friedreich's Ataxia.