Friday, June 26, 2009


## The Weekend I went to Exeter ##

Friday train to Exeter
Train from Carmarthen to Swansea, was delayed.
So my next connection was not going to happen !! but upon reaching Swansea my, original connection train, was STILL there !!!!!
Got to St Davids, went to get a taxi to Thistle hotel, the train gaurd told me to catch the next train to Central Station and the hotel is opposite the station, I told him I didnt have a ticket he told me "dont worry about it "
I was one of the first at the hotel. I booked in, went to my room , on the first floor, as soon as I got in the door, the phone rang, it was reception asking me to move as this room was only available for one night !!
I moved, to a new room along two corridors, along HARD going pushing on carpet !! up slopes and opening heavyish doors.

Room was fairly large, clean, bright, two single beds, all mod cons (iron, trouser press, tea coffee making stuff,, TV, 2 phones)small bath room over bath shower, very high bath !! VERY small basin, (view was out standing- NOT).
I unpacked and decided to go in to Exeter, to see the town. As I was leaving the car park, I spoke to another wheelchair user, who advised me which way to go (I was heading in the wrong direction ). We both went into town to meet up with some of his friends, who were coming to the conference, We all met up in "Costa Coffee", We all got on Really well.
We went back towards, the hotel, where we met up with Alison (From Lancaster) and Ant (from Bristol), both had been on the same train.
It was great to meet everyone and we went into the hotel to relax, in the bar, and getting to know each other. We had a great time, the hours soon passed (with many a story told) much laughter and banter !!.
Next morning , was the start of the conference, so after registration, we made our way in to the main room, to "park" ourselves, around a table.
The Agenda, for the day :
10.30 registration & coffee
11.00 Welcome : Dr Liz Harrison - Chair of Trustees
11.10 Ataxia UK Moving forward : Sue Millman - Chief Executive
11.35 Whats happening in the services Department - Tina Thatcher
11.45 BREAK
Group Sessions (smaller, Breakout Groups)
Live the life you want...take control of your life : Sarah Martin from Time Line Therapy and HYPNOSIS
Taking control of your money : Citizen Advice Exeter
Sharing your experience to improve your health : Alison Stevenson PhD

12.30 Lunch
Lunch was a very good opportunity to NETWORK and chat.
A very nice meal (which cause some confusion, with the different courses, HOT and Cold Courses combined ??)
13.45 Research Update
14.30 Taking Control :Becky Downing and Anthony Brown (Ant)
14.45 Dr`s Q&A - Dr Andrea Nemeth and Dr Alistair Wilkins
(two questions, were submitted, by ME, by email, beforehand)
15.40 Break
16.00 West Country Branch Update : Pauline Downing
16.15 Taking Control : Chris Norton and Samuel Merchant
16.30 Closing thoughts - Dr Liz Harrison
17.00 FINISH
after the day, alot of people went home.
There was a meal during the evening, which 20-25 attended, which was a FANASTIC meal and even more chat.
At one stage our table (of 5) had an episode of giggles, which turned into laughter then crying, much to the ammusement of the other diners.
After the dinner was a team quiz, between tables of 5 (?) there was 64 questions with a picture round. Claire was the quiz person, and was very competent at the task.
Amazingly our table WON !!!!
How we got the winning score is unbeliveable (after all the noise from our table during the evening, was something else).
Prizes were given (winners got a Chocolate bottle with piped wording "Ataxia UK Exeter 2009 Quiz winners") (Thorntons).
I said THANK YOU to AUK for the event (there was no one from West Country Branch present ???).
A few drinks, later, we all decided to retire, next day everyone would be travelling home.
Alison and I met up, at 10.00 am as we were catching the same train to Bristol Parkway, where I changed for Carmarthen and Alison went on to Birmingham. One thing puzzled us, at the hotel we got a taxi to the station, which turned up, A wheelchair accessible FIAT DOBLO, so plenty of room, but the driver made such a HU HA, about getting two wheelchairs in (both of us can transfer, so our chairs can fold, or in my case quick release wheels, so this is a simple procedure the driver couldnt really grasp -- some people, NO COMONSENSE!!
photos at Fickr

Monday, June 15, 2009


Service Resummed. EXHAUSTED

We now have a “working” porch !!!, somewhere to put our coats !!!.

DP builders,, to REDO the Disabled Facilities Grant, (that some other “cowboy” builder had complete, with a VERY sub standard, and “UNDERHAND” way ?).
The work will take some time an involve some major unheaval, including us having to MOVE out, due to the complete refurbishment, of the wetroom – including replacing the special floor covering- as well as replacing the (inside and outside) drainage system, with a new septic tank !!.

Saturday 23rd
We went to Kwik-Fit, to change two tyres on our VW Touran, Motability car.
Also booked a train ticket for my travel to Exeter, for the Ataxia UK regional conference. Investigating, Exeter, I have found that there is 3 train stations, in Exeter, and the hotel Thistle which is on one station, which means a 4 minute journey, from the station on the line from the North, In my view this extra 4 minutes is not worth the extra hassle of rushing for a connection, with luggage !! so a taxi trip will be the order of the day. Sunday- lazying and mowed lawn, the Ataxian WAY !!!
All week has been fine weather, so been doing a bit of gardening, getting a bad back, shoulder and neck, even with this I managed to make things worse, by going out in the KAYAK and climbing Rosebush Mountain.
Monday 1-6-09 attended the Green Dragon Bus AGM, at Cafi Becca, Efailwen.
It was this day t was confirmed , to me that alot of emails, were not being received by me ?? I have found that since setting up a wireless network, at home, BT internet “kindly” set up a SPAM Filter, which was very sensitive, to alot of email addresses, I have now, turned this service off, and hopefully get back to normal, if I haven’t replied to any of your emails, thats the reason WHY, so resend the email.

During the week, I have had to do alot of relaxing, due to muscle strain and headaches, as well as making many appointments and travel plans, confirming my attendance at many meetings over the next few weeks
First off attending with, a PACTO meeting
In Letterston Memorial Hall.
Tuesday a meeting of , which is in Swansea, I can get there and back to Llanelli (may catch a train to Carmarthen) so a LATE night might be in order. (pulled at last minute, due to politics ?)
Also making arrangements for m) so a LATE night might be in order.
Also making arrangements for my BBC invite to attend
Yesterday and last night we had some heavy rain !! it seems the weather is going from one extreme (HOT) to another (WET, COLD).
One person to encounter this, is Hillary Lister
Who I went to see on Wednesday 10th June, in Fishgaurd, but it was VERY HEAVY (and I mean VERY HEAVY) so everybody was out of sight.

I have been nominated, for one of the Trustees of Ataxia UK
I will post the full nomination text (just returned, from, Ataxia UK regional conference, in Exeter.)


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