I have been totally blown away the the generosity of the support shown - all I did was 'not shave' for 18 months' - by your benevolence GAIN will be able to achieve a great deal.

The beard has now gone!! ......... but I'm going to miss the tasty discoveries of past meals to re-enjoy

Captain Jack Sparrow?

........ Half gone

.......... and Gone

...... now I need to bathe in the sun to get rid of the white chin

Who are GAIN?

GAIN is the only charity dedicated to helping people affected by Guillain-Barré Syndrome (GBS), CIDP and the Associated Inflammatory Neuropathies.

As many of you know, my confrontation with Chronic Inflammatory Demyelinating Poly-Radiculo-Neuropathy began in 2007.

CIDP is a relatively rare auto-immune condition, where the body attacks itself, but with only around 3 people per 1,000,000 being diagnosed each year, it does not get the support and funding that more common and severe neurological conditions, such as MS & MND receive - but those people diagnosed with CIDP still find themselves suffering from a debilitating condition which affects them, and their families, both physically and mentally and in the weeks and months after diagnosis they find themselves lost and alone - they really need support to find the help and advice they require to make their lives easier.

So, if you can spare a few quid to support me with my 'Beard Shave', I will ensure it is "thankfully received and faithfully applied".

Personally, I only realised something was wrong when I started tripping over carpet edges at home and regularly rolling my ankle over whilst playing golf.

Unlike the more severe and rapid onset of GBS, which attacks and paralyses most of the bodies muscles, including the respiratory ones, often requiring lengthy stays in hospital, sufferers of CIPD or 'Peripheral Neuropathy' tend to slowly develop relatively mild symptoms, initiating a weakness in arms and legs.

In many cases, sufferers find these symptoms lessening over time, leaving them with only a resultant limp or requiring the use of a walking stick. Unfortunately, in my case, the condition continues to slowly decline, causing numbness in my lower legs, poor dexterity in my fingers and a total loss of balance. Even more frustratingly, my speech has been affected by paralysis of one of my vocal cords and damage to the myelin nerve sheaths controlling muscles in my mouth and tongue making eating more difficult.

Most patients with CIDP cannot identify the trigger which initiated their condition, such as a preceding viral or bacterial infection and CIDP can be difficult to diagnose anyway, as there is no single, conclusive diagnostic test for it - but I underwent all of the usual diagnostic tests - electrical nerve conduction studies - lumbar puncture - invoked potentials - MRI scan - nerve biopsy - Full Genome' testing - followed by the usual treatments - high dose Corticosteroids to eradicate the immune system, which you are then slowly weaned off whilst they are replaced by Immunosuppressants. I also received several courses of Intravenous Immunoglobulin (IVIg), made from donated blood that contains healthy antibodies, which 'can' help stop the harmful antibodies from damaging nerves.

There is no cure for CIDP, but 'cured' has been defined as ‘remission of over 5 years off treatment’. Between 50 and 80% of patients respond to each of the treatments, however, I fell into the 15% of patients who don't respond to any treatments, fortunately, I'm relatively stable with only a slow deterioration and luckily, I do not suffer from any real pain, just aches and discomfort - and a lot of frustration.

The unique progression of my condition has meant that my John Radcliffe Hospital, Oxford based Consultant, has adopted me as his 'Guinea-Pig', where he not only monitors my regular blood tests, but now bombards me with any new treatments, studies or tests that he discovers - Hey Ho - it all makes for an 'exciting' life.

My sincere thanks to every you of you......