Tuesday, July 09, 2013

All the SMAll things

When was a kid I loved all things mini! Not the car but small things. Actually who am I trying to kid I still love anything mini now :0)
I was only in Tesco the other day when I found this little cutie :0)
 Mini Chilli Tomato Ketchup

So I have been meaning to share a post for a loooooong time about mini stuff. Small, light things are easier for someone with SMA to handle, things that Max & Millie are just too heavy handed for or have tiny pieces to lose, are ideal gifts for me.
So here are some of my favorites:
Mini food - mostly from M&S

As a kid I loved all the travel games, sometimes magnetic, but mostly small and fiddly. Travel; connect 4, monopoly, battleships... see here. More recently you can get tiny keyrings with Hungry Hippos & Frustration see here :O)
I also love the table top games like; pool, table football and air hockey.
I am easy to buy for at Christmas - just go for the mini ...
Some of my xmas gifts on the left - yes they are mini clementines!  A mini Henry - a gift for a fellow SMAer

I am going to finish with my two most favourite SMAll toys from my childhood.
1) Mini China Tea Set
I went to visit a relative who had grown up kids BORING!!! How wrong could I be? I don't remember her name but I can still remember the mini china tea set that we had tea, yes real tea from :O)
2) Mini Lego
A fellow SMAer gave me some of her mini lego (you can no longer get hold of it - I have tried googling) when I visited once.  I have unfortunately got no idea where it went when I grew up and left home. It's building bricks for architects but it never really took off! Luckily Dan kept hold of his so I could take a piccy :O)

Monday, December 12, 2011

She's Electric

For Millie's Birthday we bought tickets for her and a friend to go to the T4 concert in London at Earls Court, she wanted One Direction tickets but they were sold out within minutes! So it was to be a bit of Ed Sheeran, Pixie Lott, Jessie J, The Wanted, Dappy & Example thank you very much! :O) We had a fab, but very long, day.

After we missed out on One Direction tickets, we were desperate not to miss out on T4 tickets, there aren't many concerts around December, Millie's birthday month, we didn't want to end up at a pantomime! Caz rang and rang and rang the disability line and eventually got through only to find the system was down and they promised to ring us back. I don't want Millie to look back on her childhood and feel it was restricted because of my disability, so I was keen to get tickets bought before they were sold out - the plan was if there were no wheechair spaces left that Caz would just get abo seats and I would stay at home. They did eventually ring back and had reserved us a wheelchair space and one other!!!!! In short we had to be split up! So we asked if there were steps to the area for standing, there weren't, so we bought 4 standing tickets in with everyone else :O)

That reminds me of one of the best concerts I've ever been too. I arrived pretty early at a Levellers concert at Middlesbrough Town Hall and found myself right in the middle, just one person behind the front! I raised my powerchair to the top and sang at the top of my voice. A guy I'd never met before took it upon himself to protect me from the crowds behind and to the side and i swayed and bounced with the rest of the crowd - it was wicked!

Anyway back to T4, we didn't head to the mosh pit, we had to act responsibily, we had two children with us!!!! As there were lots of different acts there were lots of gaps between the acts - everyone had Iphones and Ipods that were being used to take photos as well as playing games to pass the time so we were all very grateful for my charging socket on my dragon.

As T4 Stars is a one day event we had to travel to London. Although I travel to London by train quite often for work purposes I had never travelled on a Sunday. In the week you can get to London from Middlesbrough way before 9am. On a Sunday you can't!

We found out if we drove to York, about an hours drive, we could catch the first train from there that got us to London at around 11am. Darlington is my station of choice, nothing is ever a problem, the staff are always helpful and friendly. York is the complete opposite! York station is, in fact, the reason for this blog post, on this occasion though, the incident that adds to the reasons that, in my opinion, York should win 'Worst Station Award' didn't happen until our return journey.

We travelled from Kings Cross to Earl's court smoothly via two buses and a short walk, anyone that knows me well knows how much I love the fact that the majority of buses in London are now wheelchair accessible and I love the independence this brings. They will also know how much I hate using London Black Cabs (and not just in London), another blog post is needed for reasons for this. Therefore getting a taxi just wasn't an option.

We left Earls Court with 10,000 odd other people! We successfully crossed the flow of people heading towards Earls Court tube station, unfortunately not yet accessible. As a child neither the buses or the trains were wheelchair accessible (unless you count being lifted up the steps into the guards van on a train with all the parcels and bikes). The tube stations are being slowly updated (there are a number of step free tube stations) and, at the start of 2011 on New Years Day I was really excited to travel one stop by tube to Westminster, to watch the News Years Day Parade :O)

Anyway once out of Earls Court we realised we needed to walk away from the venue before we could get a bus - the fact the roads were closed to traffic gave us a big hint! We did get a bus and had a quick whistle stop tour of Harrods, there were steps everywhere, I spend most off my time trying to find a ramped route to the toy department, they could have done with having a step free department map!!!!!

We went for a birthday tea at Chicago Rib Shack before getting our final bus to Kings Cross. We were taken to an alternative entrance with a narrow staircase and scary platform lift, but we were treated like royality! They were fab!

We finished our ribs, cleaned our hands and faces and caught what was supposed to be our last bus to the station. It was raining heavily and the lovely waiter had given us an umbrella that had been left in lost property, to get to the bus stop :O) We hadn't long before our train was due to leave so we were relieved to be on the bus back ... until the bus driver pulled in and told everyone
"The bus is terminating, get on the one parked in front!"
OK no problem off this bus straight on to another, no problem!!!! Last time this happened by the time I had got off the bus the other bus was so full I had to squeeze in and sit by the door (not in the designated space - it's OK if everyone looks like sardines apparently!) By the time the doors had shut and opened and the ramp beeped its way out everyone else was off. I drove down the ramp to see the bus in front leave! Then, while asking the driver what to do now, with an 'I told you something like this would happen sound to my voice' the bus behind, that the driver was now suggesting I could use, pulled out and over took and in the moment we turned in shock to watch this happen our original bus took off! We were accompanied by two ten year old's so no swearing, there wasn't alot we could scream at the bus!!!!

Another bus did eventually arrive and we waffled something at the driver about why Caz wasn't buying another ticket for this bus journey (me & the two kids were free - I can still find reasons to take the bus over a taxi). We arrived at Kings Cross with less than 10 mins, assistance was booked but they ask you to be there 20min before, we ran through the station and what seemed like a mile up the platform to make our train to York.

Assistance that provides a ramp off the train was waiting at York, so there was no need for Caz to stand with one foot on the train and the other on the platform to stop the train pulling off with me still aboard. I was waiting at the door when it opened to face two guards and was greeted by
With that down went the ramp and one of the rude men boarded the train and tried to grab the back of my Dragon! I insisted I'd be fine, he only backed off when Caz gave him the angry 'get your hands off' stare. As I started to move forward to drive down the ramp forwards, which for me is the easiest and safest method, with Caz pre briefed and in position at the bottom of the ramp, the second man lunged towards me, his hand looking dangerously like it was heading towards my control, that was hidden by my lovely cape! My reactions were spot on and at that I reversed away from the ramp and back into the train carriage, whilst telling hom NOT to touch me! Actions obviously do speak louder than words as after that I drove MYSELF down the ramp and onto the platform with no further interference!

I am finishing this post while I am travelling by train to Edinburgh, I changed trains at Darlington - the best station in the world! But that's a whole other post!

Friday, December 09, 2011

Powerchair Football World Cup in Paris

After a hectic October half term delivering Wheelchair Skills Training (WST) in Doncaster and assisting at the Whizz-Kidz North West inter-ambassador club sports day in Manchester, I should have been having a relaxing holiday… but I had been excited about this week since January when I put my annual leave request in! I was off to Paris to cheer on our National team in the Powerchair Football World Cup! Wooooo hooooooo!!! For those of you who don’t know me well, I love powerchair football!!!!!!!!!!!!!! If I didn’t have a job I’d play all day every day!!!!!! I absolutely LOVE it!!!!

I didn’t discover powerchair football until I was over 30! Until then I’d never before played any team sport, infact the closest I came to sport was playing short mat bowls with a bit of drainpipe at sports day in school! Until I started playing I had never experienced the sudden rush of euphoria I felt when I scored the winning goal in a crucial premiership game! Graduating, getting my first job, house or passing my driving test doesn't compare! Being part of a team within competitive sport is something I have never been able to be part of, before I could only be a spectator. Powerchair football has opened up another world.

Powerchair Football is one of England’s, in fact the world’s, fastest growing sports. The National League is in its fifth year and this was to be only the 2nd World Cup. I was so excited to be going to cheer on 3 of my team mates playing for England! England were drawn in the harder of the 2 groups, having to play current world cup champions USA, as well as Japan who were bronze medallists. England were unseeded!!

It was very odd being in Paris with hundreds of powerchair users. I often holiday in France and have become used to people staring, but this time it was almost the norm to be in a powerchair! We stayed in a lovely hotel which was perfect once we took the toilet door off! It had revolving doors into the entrance of the hotel which I took great pleasure in showing off my skills and timing it just right every time I entered or exited the hotel, I was going to video it to use in WST only somebody had obviously driven into it and smashed one of the panes of glass and I didn’t want anyone to think it was me! Back to the footy…

The opening ceremony and 1st game was on the 1st evening, the venue was packed! Even at the Europeans there are only a handful of spectators so the 2000 at the World Cup, including at least 100 wheelchairs users with pitch side seating, meant the atmosphere was amazing. The group games were played over 2 days, one of the day’s England’s matches were screened live via the internet. My mate text me to tell me she could hear me & Caz – Caz is know nationally as the ‘WOOP WOOP GIRL!!’

England won their first game against Switzerland 16-0, some of the countries had little experience as powerchair football is very new in their countries and this big win was expected. One of the great things about powerchair football is that even those with the most severe disabilities can play and this was very true for one of the Swiss players who played with a ‘sip & puff’ ventilator attached to his powerchair throughout the game. Classification was introduced for the first time during this world cup which means that the game will be preserved for people with severe physical disabilities which is FAB! I should also add here that we revived our bag of vuvuzelas - Caz had been banned from using at our national league so we shared them with some of my other team mates who had travelled from Newcastle to Paris as the World Cup may never be this close again!!

England’s second game was against Japan, a strong contender for lifting the cup. One of the amazing things about the Japanese team was that they were all classified as PF1s! This meant that they didn’t have to worry about who was on the pitch as you MUST have at least two PF1s on the pitch at all times. The Japanese team lived up to the reputation of being technologically advanced with their heating device above their controller to keep their hands warm – something many players in England struggle with! One player had his whole body covered in clear plastic to keep the heat in! Many of the Japanese played in low, reclined powerchairs - it seemed like this gave them an advantage with their fast play and manoeuvrability around the box but really it’s only advantage was to stop the effects of gravity on their body, being seated this low and reclined would only really be a disadvantage in play as it restricts their vision, which just showed how skilful they were. This was a nail biting match and finished 1-1, a very respectable score for unseeded England and now they were going for goal difference and a place in the semi finals was in sight! Keeping with the noise theme, although there weren’t many Japanese supporters, they had plastic bottles with water in which they hit together whilst shouting “NiPon” and got the French school children who were there on a school trip to watch to join in!

The next day’s match was against USA! This turned out to be my favourite match for more than one reason. Today’s games were to be played on Pitch B where there was no tiered seating for spectators, this meant that the whole of the Barmy Army could cheer together!


Everywhere we go-o, EVERYWHERE WE GO-O, people always ask us, PEOPLE ALWAYS ASK US ….’

‘Angleterre, Angle-Angle-terr-er, n n n n n n n n n n naaa …

The match was absolutely amazing! Edge of seat stuff! England scored about 5 minutes from full time against all expectations! England had beaten the previously undefeated World Champions!!!!! This secured England’s place in the semi finals with only Portugal to play, a win would mean England would finish top of the group and play the second place team in the other group. England went on to beat Portugal and gave us the opportunity to get some great goal scoring photos!

The Semi finals were to be played that evening and England were to play Belgium! USA were playing France first, the two teams that played each other in the 2007 world cup final! Powerchair football has been played in France for over 30 years and they were playing on home turf! This was to be a great match. Everybody, apart from the Americans obviously, were cheering for France and willing them to win ‘ALLEZ LES BLEUS!’ Unfortunately it wasn’t to be and not long into the first half France gave away a penalty and USA scored the first goal. The game finished 3-1 to USA.

Next England faced Belgium, this was also played on pitch A and was live streamed, I was very grateful that my powerchair has a riser facility as I still had a great view even though I was in the second row. The game was great to watch and although Englandlooked good (I knew they would win) neither team managed to put the ball in it’s home and score a goal. The game went to extra time and we were preparing ourselves for watching penalties when in the second half of extra time England scored!!!!!! The final whistle went not long after, England were through to the Powerchair Football World Cup Final!


The next day there were no games and so almost everyone descended on central Paris. After our stressful drive around the Peripherique on arrival in Paris, I decided public transport was the way forward and Caz had said that once we had managed to park the car the first time she was not going to drive it again until we left (we had walked to and from the venue each day, great choice of hotel!). Paris’ public transport system’s accessibility had greatly improved since I was last there only 5 years ago! We jumped on a tram and then a bus to the Champs-Élysées! Caz and I really got into the football fan mentality and were excited to bump into one of the England players!!!! In fact, later in the day, we went up the Eiffel Tower with his mum and sister! After a bit of shopping we made our way to the Eiffel Tower to experience this famous land mark in the dark, I was hoping the lift would be less scary if I couldn’t see as far! Every hour the Eiffel Tower twinkled like a Christmas tree, it was beautiful! I had a lovely day in Paris but couldn’t wait for the football to continue the next day.

We arrived at the venue at 9am for the final day’s matches. I was determined to have front row seats for the England V USA final which kicked off at 3pm! I watched each positioning play off meaning by the end of the day I had watched every country play! I love football!! but I did have to restrict fluids so I didn’t lose my front row seat! The final day wasn’t without drama and in the Switzerland V Ireland 9th/10th play off one of the players was tipped over! It happens sometimes. This saw Ireland win their 1stgame and possibly score their 1st goal! Australia beat Portugal to finish 7th in their 1st international competition, I think this is a country to watch. Japan beat Canada to finish 5th, this placing is not a good reflection on their standard of play but, as with all cup competitions, teams don’t always end where you would expect them to. The 3rd/4th play off was France V Belgium. What an amazing atmosphere again in a full venue, us Brits cheered for the French again ‘ALLEZ LES BLEUS!’ I even had a French flag!! France won the game and claimed their well deserved bronze medal.

Next up was England (I’m excited just reliving it now!) and actually I can’t remember much of the game, it’s all an excited blur! USA came out fighting after their defeat in the group stages and unfortunately, after being awarded and scoring a penalty, were one nil up after about ten minutes. The next goal from the USA followed shortly after but England kept fighting. USA scored a 3rd goal in the second half, again England didn’t give in and put the USA under pressure with a near miss at goal. Unfortunately this wasn’t enough and USA had secured their win and retained the world cup. Gutted that England came so close but so proud of what they achieved! 2nd in the World!!!!


Friday, September 23, 2011

Winter blues ...hoodie!

For those of you who know me or have SMA you will understand my hate for coat shopping. Some of you will be surprised to know that I do actually like to look 'nice' despite the fact that often you may turn up at my house to find me looking like a tramp in unmatching PJs!

I love the summer as without heavy jumpers I can move my arms. Well this winter I am prepared for whatever the weather throws at me, as I have this ...

It is the trendiest looking cape I have found, really warm and it has a hood! Gotta love a hoodie!

You can get one yourself here at Tesco - worry not though, you don't need to be a wheelie to benefit from this great find, one of my colleagues at work, who is pregnant, wants one as she thinks it will be great as an alternative to the maternity range!

Sunday, May 09, 2010


It has just occurred to me that I haven't mentioned that I have a neuromuscular condition called Spinal Muscular Atrophy type 2. I once knew a girl, who also had SMA, who had a page on her website called 'Uniqueness' where she mentioned her SMA hence the title of this blog post.

I hope this now means that the topic choices in my previous blog posts make some sense!

A bit more about my Uniqueness

I have never walked as SMA means I have no strength in my muscles. I was labeled as a lazy baby and therefore wasn't diagnosed until I was age 3 and transfered for numerous tests at Great Ormond Street Hospital. My Family moved from London to West Sussex so that I would be able to be educated in a mainstream school as was recommended by my doctor - this was not the norm then.

Anyway I don't want to bore you with my life story! As I mentioned in a previous post I use a Powerchair called a Dragon (designed by the father of a toddler, now an adult, with SMA) to give me independent movement. Luckily I am great at directing as, due to my weak muscles, I have to organise others to assist me with all personal care. However, I do drive an adapted car! - isn't technology great? I can drive at 70mph down a motorway but I can't even wipe my own arse!

Saturday, May 08, 2010

Powerchair law changes

I received an email the other day telling me about a public consultation on proposed changes to the laws governing powered mobility scooters and powered wheelchairs. If you use one you really need to read this statement by the Minister of State for Transport, after reading this I'm hoping he has not been re elected!

There are two things that concern me about the proposals:
  • Insurance and Registration of Vehicles (even his terminology winds me up) - who is going to pay for this? I certainly won't be! My powerchair gives me independence, it gives me the choice to move where I want to go, do what I want to do and when I choose to do it, something that the Minister of State for Transport probably takes for granted. He does not need a licence to walk, my powerchair enables me to 'walk'. In addition to this I bet he has a bike - does he have insurance and a licence for that?
  • Fitness to drive assessment - what can I say? No way - I'm not having an assessment, I hold a full driving licence, I'm licenced to drive at 70mph on a motorway. This reminds me of the ridiculousness (is that a word?) of me having to sit a basic Maths test to qualify as a MATHEMATICS teacher when I already had a Mathematics degree and was trained to teach Mathematics to A Level! Also, even though a bike is a form of transport and a powerchair is a mode of inndependent movement for someone with a physical disability so I really don't want to compare the two, you can ride a bike at a far greater speed than 8mph WITHOUT A LICENCE!
Rant over. I hope you have also visited the link above for my powerchair - it takes you to an article I wrote a while ago now - I just love my Dragon and the independence it brings me.

UPDATE - due to the formation of a new government the content on the department for Transport site is under review so the proposal can be read here

REAL assessible toilet in Middlesbrough

Update - I declare this toilet open!