This is where we stayed
For Easter so we had booked two short break, the first one was in a adapted cottage near looe. This was the first adapted accommodation we will have been in. We set off after lunch, from Bridgwater and arrived there in about two hours, I must admit the van behaved impeccably so hopefully all the faults have been rectified now. The accommodation was nice, one really nice touch was the fridge was full of Milk, bread, cream, jam, scones just what you need when you arrive!. The only criticism from a MND perspective was the seating was far too low, as was the bed. In the morning it took both Sharon and Charlotte to lift me out of bed!
This is where we stayed
After being without the van for almost a month with you finally got it back today! Apparently the head gasket had failed! When the factory warranty expired we took out a Renault extended warranty, thinking it would carry the same conditions as the manufacturer's warranty. Alas it did not! At every stage it seemed to need and engineers inspection which posed delays at every stage! The bill would have been over £2500!
Today I had the case conference with the environmental control officer and a representative from RSL steeper today.
This was to discuss what I was entitled to on prescription in order to remain independent when things get worse. As I already have my own iPad we settled on a "evo assist" environmental controller which links to my iPad, and sends out both RF and IR signals, so it can be programmed to operate TV, stereo, phone, in fact anything that has a remote control! I was not entitled to a door opener so I am going to have to, with a DIY solution!
My friend Sarah salt who used to work in my office at Hinkley point some years ago came to see me today. This also gave Sharon and opportunity to escape for a couple of hours, and as my mobility now is so poor she constantly worries about me falling over!.
It was good to catch up on all the gossip from work, and I was quite a lot! Sarah is one of the few genuine visitors I have regularly which is nice.
when I received the e-mail on Friday I tweeted a coded message to Emma Britton who is the presenter on BBC Somerset, this morning Wll the producer phoned me to say but I was up talking with Emma live, which I did she was running a slot on our show talking to a few people who would be carrying the Olympic torch. You will see from the post below where I will be carrying it.
I received an e-mail today from the Olympic Committee saying that I had indeed been successful and passed all the security checks to enable me to be a torch bearer! here's what it said
"We are delighted today to confirm your place on the Olympic Torch Relay. You have made it through the selection process, you have passed background and security checks, and you will have your moment to shine as a Torchbearer carrying the Olympic Flame!
We have done our upmost to make sure that you carry the Flame within an hour from the home address provided with your nomination. Your slot is in Folly Gate on 21 May 2012. Please note, this is non-transferrable. We will let you know the time and exact location approximately four weeks before the day of your slot.
Spreading the news
At 7.30am this Monday, 19 March, we will be letting the world know about our Torchbearers; the news is likely to feature on TV, in the papers and online. We will also be publishing a street-by-street route of the Olympic Torch Relay to help local communities get ready to celebrate.
If you have agreed to publicity, from Monday we will start to tell the world your inspirational story. You may be contacted by your Local Authority or invited by media to take part in an interview. If you have not agreed to publicity, we will respect your wish for privacy.
You are now part of the London 2012 team. Please work with us to keep the news of your confirmed place confidential until Monday. We would appreciate it if you did not share your news, including via social networking sites or by approaching the media, until we make the public announcement.
We appreciate that this is exciting news and you will be keen to share it. If you wait just three days we will help you shout about your place (and loudly). You can then also get your friends and family to start planning how they will line the streets to cheer you on as you go past.
We will be in touch soon... congratulations again,
The London 2012 Olympic Torch Relay team
Every year the MNDA have a person to front their media campaigns, this year they are doing it slightly differently, and are launching a " team optimism" campaign consisting of four people, one of them being me - this is to hopefully generate national coverage. The month of June is going to be MND awareness month. And they are asking if each of us could organise an event that could be used in their media campaigns. this year my previous employers fun run are not supporting the MNDA, but Cancer research, which is a shame because this is normally run in the month of June. So I was speaking to my builders and they offered to do a cycle ride from me, conversations continued and we ended up with me on my tramper with the two builders on bikes cycling from lands end to Bridgwater! what a brilliant gesture from people I have only known for a few months since they started working for me!
My tramper will do a maximum of 30 miles before needing recharging so that will be apparent the daily maximum - or we have extended pub lunch each day!
Had an appointment today, to visit the orthotics Department in Bridgwater hospital. This normally wouldn't be a problem but our Renault traffic van has failed yet again. I wanted to drive my electric wheelchair from home to the hospital but Sharon was not too keen! Thinking I would probably break my neck! So she arranged some hospital transport - you know the ones that ferry the old grannies around! You can imagine how blue the air was in our house! But I backed down and went along with it. And to be honest it was okay. The bus arrived late but apparently if you use community transport they cater for the buses lateness. I got the splints fitted - they are fancy carbon fibre ones that allow a degree of flexibility, and when I put them on and even sat in my wheelchair it did feel like I had got my legs back. When at home I tried them and they felt good although I still couldn't walk without the aid of my Walker.
We were having a day in today after what has gone on lately -we were both exhausted, the only appointment we had today was a visit from Heavers of Bridport who make Windows and doors , I had never heard of these but Martin from Audi4U in Bridgwater knew one of the directors of the company and was telling him about me. Hopefully they will give me a good price on my bifold doors as at the moment the quotes I have been receiving have been just too expensive!
The build is going well now, the two Rob's now laying the outer skin.
I had my routine dexpramipexole drug trial assessment today, so I had to get up early, unfortunately using my method of getting off the bed, by bouncing up and down to get some momentum, unfortunately my right leg collapsed and I came tumbling to the floor banging my head on the radiator, and hurting my back, because we are now sleeping in our small downstairs bedroom there was not much floor room, in order for me to turnover, so I was stuck! In fact I stayed on the floor to nearly an hour, while Sharon tried to set up the Elk lifting cushion, learning from that experience we are now going to do a weekly drill of setting this up - because sat on the floor for an hour is no fun! After that I was in no mood for travelling all the way to Oxford to be poked and prodded, so Sharon phoned them up to say I would not be attending. We have rescheduled for next week.
After dinner she suggested we go out in order for me to get some fresh air, our wheelchair adapted vehicle does not get too much use probably being used once a week maybe. So we drove down our road and pulling out of our road it stalled, with the van blocking the road, and it wouldn't restart, after a few choice words I told Sharon to turn the ignition off completely and try to restart it, as with modern cars nowadays you need to reset the ECU, luckily it started and we were away. We drove another mile and it did it again but we managed to restart it using the same method, we decided to go to Weston super Mare so I could drive the wheelchair up and down the seafront, when on the motorway it drove faultlessly, so I said it was probably due to the van being stuck on our drive with all the dust from the builders. After spending an hour in Weston we drove back then approaching Edithmead roundabout, the van cut-out and would not restart, oh bugger! after a few minutes pondering, the only option was to call the RAC, this was at 2:10, we said that I was in a power wheelchair so they said we would put to the top of the list, and get the next available RAC man. He plugged this scanner into the OBD port and it came up with, ECU failure, and injector failure. He said "this van ain't going nowhere" to cut a long story short they had to arrange a wheelchair accessible taxi for me, and the van had to be loaded onto a low loader and transported to Wellington motors. We arrived home at 5:10 - what an afternoon! Only consolation is when the van failed last time we took out a extended warranty with Renault - I think we're going to need it! Volkswagen/Audi it ain't! If things don't improve with this van I will be ordering something from the Volkswagen camp!