Tuesday, September 29, 2009


Boats and Suitcases - Exciting times

On Saturday 19th September, we travelled up to Southampton, by car.
We stayed overnight at Holiday Express in Botley road, we have stayed here before, so knew it would be fine.
Next day, after breakfast, we went to Southampton Boat Show, http://www.southamptonboatshow.com/2009_home/home.aspx to meet up with friends from Devon.
We all got together and made our way, through the MASSIVE area of the event, down to the marina, where we met Sarah Outen http://sarahouten.co.uk/ and “DIPPERS”, Sarahs boat. You MUST watch the clip, of her voyage http://www.youtube.com/watch?v=8DRvHE52KrE&feature=player_embedded
We all had photos and a good chat.
We then met up with Geoff Holt http://www.geoffholt.com/ , with who we had another good chat and photos, we all went up to the “record breakers” stage, to watch Sarah and Geoff, and to take part in the “Semaphore” record. http://www.southamptonboatshow.com/2009_home/whats_on/attractions/come_and_break_a_record.aspx .
We met up with Sarah Outen for afternoon tea, we had some more chat and insight into her epic challenge, plus a personal invite to her party, later in the month. After we said our goodbyes to Sarah, and went for a look around the show (for Bargains!!),.
I went on the “step climber” (third year, in a row) on the SUNSEEKER http://www.sunseeker.com/ stand, WOW, how the other half live ??? one day they will make them totally wheelchair accessable.
In the evening we went for supper at Geoff Holts house, a FANTASTIC evening of “catching up” and to meet Susanna, his medic, on his next voyage.
We left, for the holiday Express Inn, which isn’t too far away. For another night, before we travel home on Monday.
The Devon / Carmarthenshire “Goodbye” was around 10ish (but we will be meeting up SOON) and so back to motorway travelling.
Monday evening I attended a meeting of Headway http://www.headway.org.uk/ , in Carmarthen. A very well attended event.
Wednesday, I went to Coleshill Social Centre, to attend another meeting, while there I made a telephone interview for Able Radio http://www.ableradio.com/ (cant find a direct link to my interview) It was for “International Ataxia Awareness Day” which was Friday 25th September. Events were held all over the UK http://www.ataxia.org.uk/ and worldwide http://www.livingwithataxia.org/
I displayed IAAD PVC banners (outside my house and in “school”) and on Saturday 26th our Ataxia South Wales, branch, held their second “Wheely Wobbly Walk” in Roath Park, Cardiff. A well attended event, which was a sponsored walk event, which has made alot of funds and awareness.
This week, getting back to normal, Gym and Swim at http://www.lletycynin.co.uk/index.php and getting ready for attending the Ataxia UK conference in Manchester.
As always photos at Flickr http://www.flickr.com/photos/alanroygbiv/

Thursday, September 17, 2009


Back to NORMALISH ***** Important information !!

Sunday (30-8-09)
Went to Carmarthen, to catch, train to Chesterfield, ready for my MRI scan, on Monday.
Train was on time, and fairly empty (until we were getting nearer, to Cardiff, there was some BIG event on ??).
Met at Chesterfield by G and D (and N, Ds PA). We went back had a meal and a good ole CHAT.
Made arrangements (with N) to pick up D and I, at 8.30ish, on Monday morning.
Went to the X-ray, department, booked in, for my MRI.
Within minutes, I was called in.
3 scans,-
Thorasic-Cervical- ???
took a total of approx 40mins. Very friendly and polite staff
(and WOW, how clean and up to date, is this hospital ?)
The whole event, was carried out , so quickly and EFFICIENTLY, it was amazing. (to think this has been arranged, in such a short time, -- 6 days from first appointment to Scan !!!! (not the, months, or YEARS, usually encountered !!!!).
I must Thank Neil, for his offer of taking me to the MRI appointment, without his knowledge, of the “whereabouts”, of the MRI department, and hospital, it took a lot of STRESS out of, the whole process.
We returned to the House to pick up G, and we all went for lunch at a local carvery (£3.50 per head !!).
Afterwards we went to Chesterfield, station for my return journey, (which was in First Class, part of the train, with Cross Country trains).
First, and only change, was Bristol Parkway.
Although, I was booked on, a train that stops in Cardiff, I waited 25 minutes, for the “Great Western train”, that goes straight through to Carmarthen (with no changes !!).

*** Also, been told of another Living with Ataxia “recognition”
LivingWithAtaxia.org was featured on About.com this week http://rarediseases.about.com/b/ ******

Tuesday (1-9-09)
A meeting, in Haverfordwest, concerning the setting up of a local Neurological Alliance. A very productive and positive meeting.
A radio broadcast of our “Wheely Wobbly Walk” in Llanelli was aired on Radio Carmarthenshire and Scarlet FM.
The Event (on Sunday 6th September) was well attended as really good fun, made a good amount of funds as well as some excellent awareness, we managed to gain a few new members, to our branch.
The event was covered by Llanelli Star, newspaper, which also got some more new members.
The “remedial” works have begun, on our Disabilities Grant, after the work was done very substandard (and NOT within building regs.) the first time. We now have a new cesspit in place !!!. pics at http://www.flickr.com/photos/alanroygbiv/
Wednesday 9th, attended a SWWITCH http://www.swwitch.net/ event in Swansea, from which have made some contacts.
This week I have attended a SAIL – Swansea Association for Independant Living, which also made alot of contacts.
Then went on to Cardiff, to stay, overnight, ready for a PSP symposium. http://www.pspeur.org/
This was an event I had been invited to. To my surprise two of my speech Therapists had come to attend !!.
To my astonishment the days event, was chaired by Dr H M Senior lecturer and consultant neurologist at Cardiff University,Royal Gwent Hospital and Cardiff and Vale Trust. During the tea break, was a great opportunity for me to ask him about “this clinic, with a department dealing with ATAXIA”
He explained his clinic and the various departments and hopefully we will, be in contact, with positive out comings. See my post at http://www.livingwithataxia.org/forum/topics/update-on-access-to-a-ataxia

Friday, September 04, 2009


Laptop DEAD ?? WWW soon

Laptop has gone for repair (it went COMPLETELY, DEAD, just as I was fetching a CD, to copy to!!)
Apparently this NOT covered by the DELL warranty ?????.

Ataxia South Wales "Wheely Wobbly Walk" is this Sunday 6th in Llanelli.
It has been mentioned on Radio Carmarthenshire http://www.radiocarmarthenshire.com/ and Scarlet FM http://www.scarletfm.com/, quite a few times.

Update soon.

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