Ducati Sporting Club UK > General > Idle Chat > Kb !

[Rattler]

Blimey - missed this too.
Take care Lisa - all the best for 2008.
Tim

[Jools]

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'

[Chris Wood]

Cheers Jools, nice post.

KB - Look after yourself!! See you around here soon.

[rcgbob44]

Like many others I missed that thread and feel sad that I did as I had no idea of her situation.

If you read this lisa I wish you all the very best & hope that we can all see you at the AGM.

















I`ll even get you a bag of JB`s

[Col996s]

Thanks Jools for your post.

I have learnt a lot from that.

[Dukerob]

She has been really ill but is much better and was sound on New Year's Eve at our Mexicans and Cowboys party, hopefully someone will be along soon wiith some photo's, I had all on finding my shoes never mind a camera.....tequila!!!
Happy New Year all

[kwikbitch]

Thanks Joolz that post was great! Its really hard to describe what it does without sounding like a whinger especailly when people see you careering round a track at "Silly mph".
The attacks Ive had have always left me with a little "present" where Ive had to find strategies to manage little glitches.
This one was particularly vicious...three days of medication lowered my immune system so low I picked up a nasty tonsiliitis and some other bug that prevented me eating ...so Ive lost a lot of weight. After a particularly quiet xmas, my New year went great, I had a couple of drinks and shot of tequila and a good boogie (even if it was tricky to co-ordinate my feet, mind you there were so many drunkards you couldn't tell anyway!)
This time it has left me with a real lack of confidence, as I keep having these episodes of lack of co-ordination which I never know when they are going to happen and there doesn't seem to be a trigger...its affected my self confidence both in driving the car and Ive not even attempted to sit on a bike ...Mind you, you all know me by now...give me some time....I'll be fine on the straights...lets just hope it doesn't come when Im on a corner!!!

Oh...and thanks everyone! To know youre thinking of me gives me great confidence and positivity!

[Grib]

Originally Posted by Dukerob

...hopefully someone will be along soon wiith some photo's,..

Hopefully they won't!

Lisa, everyone's dancing looked equally wobbly, there's no need to worry about that See you up at Nelly's soon.