Ducati Sporting Club UK

I missed that thread too.

I didn't know that Lisa had Multiple Sclerosis until Mrs Jools was diagnosed with it nearly 2 years ago, but in those last 2 years Lisa has been a real strength to us with her advice, letting us know what sort of things to expect and as a source of great empathy from someone who has more experience in dealing with it.

Not many people know about MS, in fact the majority of people are completely ignorant about it. It's not a 'fashionable' disease for research, it can be a struggle finding a good neurology department with a specialist consultant and, as Lisa points out, a real fight to get the expensive Beta Interferon drugs that are the best thing so far for controlling the disease.

You may not know what Lisa and others are up against, you may be too squeamish. You might not care, or protest that this is a site about Ducatis. If so, read no further. If you are open minded enough to find out more...

MS is a bastid. Nobody knows what truly causes it and it's a degenerative disease with no known cure. It is a disease of the Central Nervous System where the body's own immune system, for some reason, starts to attack the Myelin sheath around the nerves. If you think about the nervous system as your body's wiring and the Myelin sheath as the insulation, once the insulation is damaged the nerves short out and anything downstream of the short will no longer work properly or have a great deal of impairment. The part of the nervous system that gets attacked is completely random, so when an attack is occuring it can affect movement in any part of the body, most commonly it affects the movement of people's limbs, peoples speech, or the function of optic nerves. It affects sufferers in completely individual ways so you never know when an attack is coming and you never know what the severity of the attack is going to be (it can range from 'pins-and needles' and numbness through to partial paralysis).

The attack itself usually lasts between 1-5 days, but once an attack is over the sufferer is left with a damaged nervous system. The Myelin sheath repairs itself but leaves scar tissue (sclerosis) that impairs the flow of nerve signals, so you will get a degree of former nerve function back but you won't know whether that's going to be 99% or 10%. Actually there are usually multiple scars left after each attack (hence Multiple Sclerosis) and since nerve tissue, like brain cells, can't regenerate the degree of impairment that you are left with is a lottery.

Since the body is a wonderful thing, sufferers can work hard at physio and other rehabilitation methods and the body will, to some extent, learn to use other neural networks to obtain near the same body functionality they had before. When in rehab, sufferers have good days and bad days. On good days they can function relatively normally to the point where an onlooker probably wouldn't know anything was wrong, on bad days they suffer from loss of balance, muscle cramps and seizures and chronic fatigue. These two states can flip in an instant, so even if you wake up feeling good and ready to get on with your day that can change at any point - I've lost count of the times I've had to rescue Mrs Jools because she thinks she can beat it by being positive, only to seize up halfway round a supermarket.

Ultimately, the long term prognosis is that each attack leaves damage and hence the degenerative nature of the disease, after a bit the body stops enjoying some remittance from previous attacks and goes into a more progressive form of deterioration.

Most people simply think that MS sufferers with their wobbly balance and slurred speech are just pi55ed.

Sorry to hijack Lisa's thread, I'll get off the soapbox now, but if I've raised even one person's knowledge about a very overlooked disease it'll be worth it. Thanks for 'listening'