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Alan Thomas
- Male
- Carmarthenshire -WALES
- United Kingdom
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- Blog Posts (32)
- Discussions (105)
- Events (8)
- Photos (237)
- Photo Albums (13)
- Videos
Alan Thomas's Discussions
Oscar winning film musicbyprudence
Started 3 hours ago
BBC Ouch Newsletter
Started 6 hours ago
AUK Mini- Conference in Belfast
Started Mar 4
Alan Thomas's Events
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DANCING on WHEELS -- BBC TV
February 11, 2010 at 9pm to March 25, 2010 at 9pm – on Television Thursday nights
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NAIDEX 2010 Birmingham, UK
April 20, 2010 at 10am to April 22, 2010 at 4pm – NEC , Birmingham, UK
Alan Thomas's Page
Gifts Received (4)
Latest Activity
Profile Information
- Are you a patient, relative, friend, or medical professsional?
- Patient
- What type of ataxia do you have?
- Cerrabelar Ataxia
- Have you been formally/medically tested for ataxia?
- Yes
- Is your ataxia progressive?
- Yes
- Is your ataxia hereditary?
- Not Sure
- If hereditary, do other members of your family have ataxia?
- No
- How has ataxia affected your quality of life and ability to work?
- stopped work 1998/9 (Electrician)
- What affects your ataxia (food, stress, etc)?
- certain foods, stress, sudden movements, uncontrolable situations
- What other ataxia support groups do you belong to and would recommend?
- Ataxia UK , Ataxia UK Virtual Chat, South Wales Ataxia, Ataxia South Africa
- Please share your story with the community...
- Allways been "ODD"? Even in school, I was told I was odd. So when it came to telling people about ATAXIA, their reply was "You where always ODD" !!
slured speech, walking with a "WEAVE"
Took me a number of years (11) to convince the doctors, there was somthing wrong !!!
Went buttering bread, (I was a self employed electrician, so making a packed lunch was an every day occurance,) "I thought "hey, I having to think more about using the knife" so I went back to the doctors.
Luckily, for me, I saw a Locum, who had just studied ATAXIA in Med school !!
He done some basic tests, then sent me to see the Neurologist, who ordered some tests MRI scan (third one) CAT scan Lumbar puncture and some blue probey (50) things stuck on my head.
Result Degenation of the Cerrebelum / DRPLA / CA.
Saw another Professor of Neurology, (in Cardiff Univercity Hospital) who confirmed the diagnosis and told me how it was going to be ??
I was told I would probally be in a wheelchair 24/7 within 4 or 5 years, that was approx 10 years ago. So far I use a "wheelie" for long distance, but get along with a walking stick.
Now I only see the (LOCAL) Neurologist once a year
(I travel up to Sheffield to see Dr Marios H
Cant get a social worker ???
OT dont get seem to do anything for me (their words), so I try and do core exercises at home, and go to the gym, swim and go out on my tricycle.
I use the internet, to communicate, with alot of people, also use it for investigating travel for people with disablities, and passing my findings on to other people.
As well as my interest in Digital Stories
As a result, of my computer use, I went (2008) to Vienna, Austria to attend the E-inclusion Conference with the European Commission and BBC Capture Wales
2009 = Trustee board member of Ataxia UK
Click on the BLUE text
Ataxia UK
New Digital Story Network
DS Network
BBC Wales, News Item
NEWS
Client at Coleshill Social Centre , Llanelli, Wales
My blog
alanroygbiv.blog
My complete photo Album
PHOTOS
Gambia 2009
small video clips (Youtube) (updated January 2010)
videos
Travel contributions at Tripadvisor
travels
Wheelchairs made by a LOCAL Wesh company
NOMAD
More Wheelchairs
Spokz.co.uk
Geoff Holt (record holding Disabled sailor)
Now he is stating a new challenge
Personal Atlantic
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A good friend (and Ataxian) and present on this site, has this got this mobility equipment sales company mobilitybuy.com
Alan Thomas's Photos
Alan Thomas's Blog
Penwest Announces Initiation of Phase IIa Clinical Trial of A0001 in Patients With Friedreich's Ataxia
Penwest Announces Initiation of Phase IIa Clinical Trial of A0001 in Patients With Friedreich's Ataxia
Posted on February 18, 2010 at 2:10pm —
Row the Atlantic Boost
Come on, BOYS !!!, your nearly there
read their BLOG http://blog.mailasail.com/redarrow
and give them a BOOST, send them an email or message
Alan
Posted on February 18, 2010 at 7:29am —
Carers book The "Selfish Pigs" Guide to Caring
The "Selfish Pigs" Guide to Caring by Hugh Marriott
<a href="http://www.selfishpigsguidetocaring.co.uk/">BOOK website</a>
<a href="http://alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200120&documentID=674&pageNumber=3">alzheimers.org.uk Book review </a>
Posted on February 13, 2010 at 4:03pm —
Rare Disease Day flickr photo album
Rare Disease Day
flickr photo album
<a href="http://www.flickr.com/photos/31585490@N05/">RRD photos</a>
Posted on February 12, 2010 at 12:30pm —
*** Row the Atlantic***
Posted on February 5, 2010 at 8:11am —
Comment Wall (137 comments)
- At 10:15am on March 9, 2010,
Ironside said… - It is interesting that you have friends in Madrid I would someday come to know personally those who have ataxia. My sister spent much time in England, I even have two nephews English. :-)
best regards. Ironside
Es interesante saber que tienes amigos en Madrid me gustaría algún día llegar a conocer a los que tienen ataxia. Mi hermana pasó muchísimo tiempo en Inglaterra, incluso tengo dos sobrinos ingleses. :-)
saludos cordiales. Ironside
- At 3:06am on February 18, 2010,
Emma Jayne Argent said… - We live in Essex in a little seaside town called clacton on sea xx
- At 11:05am on February 17, 2010,
Marie Turner said… - Hi Alan
Thanks for the welcome. I have been contributing to the ataxia uk forum but have just found this one. I haven't been to Rockley even though I worked in Poole. I live in Wimborne.
- At 7:08am on January 21, 2010,
becky2020 said… - hi Alan, my name is Becky and i come from Kenya but reside in America.i came here for school about six years ago.i am so impressed that you went to kenya.keep u with the good work!
- At 5:40pm on January 18, 2010,
Ben Munoz said…
- Hey, Alan. Just was telling Kati the new semester starts tomorrow. How's it going on your end?
- At 9:25pm on January 16, 2010, Scott Orn gave Alan Thomas a gift…
- At 11:42pm on December 29, 2009,
Kati said… - Thanks for comment on my blog. How was your christmas?
My side seems better just nursing a cold at minute, can't stop sneezing so been awake since 4.30am
Did you see video Ben made on You Tube for LWA? (link is on forum) Inca and I are in it ever so briefly.. lol!
Best wishes for 2010.
Kati x
- At 11:48am on December 25, 2009, Ben Munoz gave Alan Thomas a gift…
- At 9:14pm on December 8, 2009,
Susan Q Knittle-Hunter said… - Thank you..
- At 8:12am on December 7, 2009,
Michael said… - Thanks for the welcome Alan.
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