Wednesday, 22 June 2011

Here is today's offering -Marc from New York

 This Blogger is superb,  articulate readable and prolific.
Its a blog that you keep on going back to read , take a cup of coffee with you , its addictive

Like he says . 'if you don't have dreams you have nightmares'

Saturday, 18 June 2011

And yet another great link before I turn in. Good night all

I liked this one

Martin from on Sky News talking about CCSVI

or try

CCSVI explained. Homework for the unconvinced

This American web site gives a very good overview  of CCSVI for pwMS, their carers and medical personnel. Caters for all levels of understanding and gives some very encouraging personal perspectives.  

Wednesday, 15 June 2011

Berry Sor-Bette

Shell and I concocted this short film  of me making Red Berry Sorbet Balls.  It does show rather clearly the difficulties encountered with loss of balance and dexterity. Taste good all the same and most importantly Ruby liked it.

Sunday, 12 June 2011

Who benefits most from CCSVI treatment

A small study done at AMEDS Centrum in Poland on 47 people who had the Liberation  procedure for Multiple Sclerosis. These statistics is tending to mirror what is found in most clinics performing the procedure, called endovascular treatment

Click on the link below for the study results

Expect nothing but hope for everything

There has been much excitement in the MS community, because of the controversial new discovery of CCSVI  and the impact it is having on pwMS lives (people with multiple sclerosis).

 As with all discoveries, the ones that actually do what is says on the box gather a lot of interest. Thanks to the internet and social sites like Facebook, individuals have been able to reach a wide audience with a consequent international comparing of notes. Something as simple as my Bette Bravo Blog might just inspire someone, somewhere to do the same. It's a leap of faith in my case.

Most of what we see on the internet is anecdotal.  However, what is does do is to provide pressure by gathering evidence, on people with the power and money to have a closer look.

 As a consequence NICE (National Institute of Clinical Excellence) is going to review CCSVI in the Autumn.

 This would have been unheard of in the olden days.

Wednesday, 8 June 2011

On Your Bike Bette!

Today Shell and I filmed me taking Bette for a walk on my bike. Shell was sad she hadn't brought a clamp to attach the camera to my bike so I insisted she climb on the back and hold on tight. Our fearless filmmaker was terrified but managed to get some great over-the-shoulder shots!

Just because you have Multiple Sclerosis  doesn't mean you  can't exercise a big dog.
See how I take Bette the Boxer X for a run on my electric tricycle

Sunday, 5 June 2011

Video talking about the safety of Angioplasty

Very informative, addresses safety issue around Angioplasty. Its releaving to hear from the experts who perform this all the time.
MS is enough to cope with with out have the anxiety of not knowing about a potential life changing procedure.
This makes it very clear and easily understandable.

Friday, 3 June 2011

Australian radio interview

Very good description of the new discovery of vascular obstruction and Multiple Sclerosis 

Very encouraging and made me thing why did it take so long for it to come under the radar. 
 However it has  reached these shores now and hopefully after the autumn it will be reviewed and then  accepted by   NICE. then its only a matter of time before it becomes mainstream treatment for MS. Thats my fantasy anyway . 

Interview with Dr Helen Webb,  a doctor with Multiple sclerosis  ,starts about 15.56 and
worth the fiddling around

Click on the  website below to listen

Wednesday, 1 June 2011

Our first film

Here's the first film that Shell and I have made to chart my journey before and after my CCSVI liberation procedure.

Freedom on a Segway: it balances itself 100 x second


Shell and I are here creating the first Bette Blog, while Dug prepares a light lunch in the kitchen.
After lunch the Segway will be bought into action and filming will begin.

 The plan is to do a before and after blog for the CCSVI which is happening in August.
Meanwhile we eat drink and be merry.