The MS Trust hits the airwaves!

The excellent MS Trust has been selected to give a Radio 4 appeal this Sunday. As well as bringing in much-needed donations, the appeal will raise awareness of the charity, letting people with MS, their friends and family know about the support available to them. Money raised will be going to help fund the Information Service, which is available free to anyone with a question about MS.

The appeal will be broadcast on Sunday at 07.55 and 21.26, and again the following Thursday at 15.27. Full details are here.

Please share this information, so that the appeal gets a really good audience! Please also listen, and consider donating if you're able to.

And if that doesn't grab your imagination, have a virtual stroll round the Secret Art Show: small pieces of art, some by international artists, all sold anonymously at the same price. You only  discover who yout piece is by when you receive it.

It's all as exciting as Mr Exciting, the Mayor of Exciting Town!

The Spoonie Creation: a parody

The Spoonie Creation

 
1. In the beginning God created the heaven and the earth.

2. And the earth was without form, and void; and darkness was upon the face of the deep. And the Spirit of God moved upon the face of the waters. But he did not realise that the Devil was chasing him, seeking mischief to perform.

3. And God said, Let there be light: and there was light.

4. And God saw the light, that it was good: and God divided the light from the darkness.

5. And God called the light Day, and the darkness he called Night. And the Devil said: Day, Night? Wait till I come up with Spoonies, for they will either sleep too much or not at all. And the evening and the morning were the first day.

6. And God said, Let there be a firmament in the midst of the waters, and let it divide the waters from the waters.

7. And God made the firmament, and divided the waters which were under the firmament from the waters which were above the firmament: and it was so.

8. And God called the firmament Heaven. And the evening and the morning were the second day.

 9. And God said, Let the waters under the heaven be gathered together unto one place, and let the dry land appear: and it was so. And the Devil said, Ah, that'll be good for Spoonies to fall onto. Nice and hard.

10. And God called the dry land Earth; and the gathering together of the waters called he Seas: and God saw that it was good. And the Devil said: But let's have some more fun with the Spoonies, and make the dry land sometimes like unto the waters of the sea, raging even as a tempest, but let not the Spoonies know from one hour to the next which it shall be, and verily our mirth shall be great.*

11. And God said, Let the earth bring forth grass, the herb yielding seed, and the fruit tree yielding fruit after his kind, whose seed is in itself, upon the earth: and it was so.

12. And the earth brought forth grass, and herb yielding seed after his kind, and the tree yielding fruit, whose seed was in itself, after his kind: and God saw that it was good.

13. And the evening and the morning were the third day.

14. And God said, Let there be lights in the firmament of the heaven to divide the day from the night; and let them be for signs, and for seasons, and for days, and years:

15. and let them be for lights in the firmament of the heaven to give light upon the earth: and it was so.

16. And God made two great lights; the greater light to rule the day, and the lesser light to rule the night: he made the stars also.

17. And God set them in the firmament of the heaven to give light upon the earth,

18. and to rule over the day and over the night, and to divide the light from the darkness: and God saw that it was good.

19. And the evening and the morning were the fourth day.

20. And God said, Let the waters bring forth abundantly the moving creature that hath life, and fowl that may fly above the earth in the open firmament of heaven. And the Devil said Foul? That'll be the Conservatives.

21. And God created great whales, and every living creature that moveth, which the waters brought forth abundantly, after their kind, and every winged fowl after his kind: and God saw that it was good. And the Devil said, I see,they have to be able to move. That'll count out some of these Spoonies I have planned.

22. And God blessed them, saying, Be fruitful, and multiply, and fill the waters in the seas, and let fowl multiply in the earth. And the Devil did ensure that all politicians multiplied.

23. And the evening and the morning were the fifth day.

24. And God said, Let the earth bring forth the living creature after his kind, cattle, and creeping thing, and beast of the earth after his kind: and it was so.

25. And God made the beast of the earth after his kind, and cattle after their kind, and every thing that creepeth upon the earth after his kind: and God saw that it was good. And the Devil said, Let the things that creepeth upon the earth be named The Coalition.

26. And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

27. So God created man in his own image, in the image of God created he him; male and female created he them .And the Devil created Spoonies, who were in the image of God and looked so well but had bits that did not work properly. And the Spoonies had dominion over nothing.

28. And God blessed them, and God said unto them, Be fruitful, and multiply, and replenish the earth, and subdue it: and have dominion over the fish of the sea, and over the fowl of the air, and over every living thing that moveth upon the earth. And the Devil said, Apart from Spoonies, who are clearly not interested in being fruitful and multiplying, and shall be the lowest of the low.

29. And God said, Behold, I have given you every herb bearing seed, which is upon the face of all the earth, and every tree, in the which is the fruit of a tree yielding seed; to you it shall be for meat. And lo, certain of the Spoonies did say, Herb? Where?

30. And to every beast of the earth, and to every fowl of the air, and to every thing that creepeth upon the earth, wherein there is life, I have given every green herb for meat: and it was so. And the Devil suggested the Welfare Reform Bill and the NHS Bill to the creeping things that were the Coalition.

31. And God saw every thing that he had made, and, behold, it was very good. And the Devil also rejoiced in that which he had made. And the evening and the morning were the sixth day.

32. And on the seventh day Spoonie Jebus necked some Oramorph and had a nap to build up his strength. For verily, there was a hell of a mess to sort out.

*Devil section by Meg Morrigan

Taking the piss

So what would make you want to have a tube shoved up your bahookie and have someone give injections to your bladder from the inside? There's some people would pay good money for that I know, but it's not really to my taste.

Well, it was the latest treatment for my bladder problems.For a long time now, I've had frequency (needing to go all the time) and urgency (once I need to go, I need to go NOW.) I've also had regular UTIs. Last year this reached ridiculous levels. When I stopped antibiotics for one infection, I would have about one blissful bacterium-free week, before succumbing again.

All this was down to my detrusor muscle, the muscle that contracts when you're weeing to squeeze the wee out. I have overactive bladder as a symptom of MS, where the muscle reacts on a hair-trigger: it sends the "I'm full" signal to the brain well before that's actually the case; it responds to external stimuli like running water or opening the front door; and its contractions cause stress and urge incontinence.

So what could be done? Well, obviously, antibiotics for the infections: I worked my way through a wide range, collecting allergies and interesting side-effects along the way (mostly hallucinations - the gazelle giving me a jar of hand cream was my favourite).

I took part in a drug trial, self-injecting twice a week. I knew when I was on the drug rather than the placebo because I got skin reactions. It really, really helped. But then the trial ended, and I was back to the standard medication.

The standard medication is anticholinergic drugs, which help to stop the detrusor muscle from over-reacting. They help, a little, but not much. I still have a lot of problems.

So it was proposed that I should have botox. No, not up there. Down there. The idea is to partially paralyse the detrusor muscle so that it's not so twitchy. And the way they access it is through what's normally the exit.

In due course, therefore, I found myself on an operating table with my legs up in stirrups, with a charming consultant in there at the business end shoving a tube with a camera attached up where only one man has been before (the urologist who did my previous cystoscopy). The equipment that let him see what was going on also had a small screen that I could see (if I wanted, which being me of course I did), and he was good enough to give me a guided tour of my own bladder - this is the top, this is where the left kidney opens into the bladder etc etc.

The actual injections...weren't nice. But hey, I've got MS, I've experienced a lot worse. If you can imagine someone pinching a bit of your insides, FROM the inside, really hard, that's kind of what each one is like.

But it was soon over, and there was no pain afterwards. And the very next morning, I woke up, needing the loo, yes, but not desperate - I'd forgotten what that felt like! Generally the effects have been wonderful. I can hold on for absolute hours, as opposed to my previous average of about 40 seconds!

Predictably enough, with my history, I got an infection, but that was soon sorted out with antibiotics. I'm still on a low dose, to protect me against any more. The ongoing side-effect is that I've kind of gone the opposite way to where I was before. I now can't wee when I want to! Well, I can, but it's hard work, y'know? Seems the injections have worked a little too well. Hopefully that'll settle down in time. In the meantime it's still preferable to my previous problems.

So all in all a positive experience, and I'd definitely recommend botox if you have overactive bladder and the standard meds aren't helping you. I'll have to have it repeated every 6-9 months, but that's small price to pay for the benefits.

And, of course, for having the smoother, more youthful bladder I've always dreamed of...

#BADD Dead Happy, Derek, and disablism

Recently employees of a Cambridge clothing company, Dead Happy, thought up a promotional scheme. They wanted fans of the company to put stickers, preferably rude, onto the back of mobility scooters, then take photos to upload onto Facebook.

I should stress that this wasn't official company policy: as soon as the boss of the company found out about it, he removed the Facebook posts in question. The police have taken the incident very seriously, and at the last report, were speaking to those concerned.

But it's just a prank, right? What harm can it do?

I haven't blogged so far about Ricky Gervais's pilot show Derek, partly because I wasn't sure myself what my feelings were about it. Was I uncomfortable about the idea because I've never really been a fan of Gervais? Because I was unconvinced by his conversion after "mong-gate" last year? Apparently he's been using the word "mong" in his stage act for several years, followed by a mock-coy "I'm not supposed to say that, am I?", so his protestations thaat he didn't know the word was offensive ring hollow.

Gervais insisted that Derek isn't disabled, saying that:

Derek is a fictional character and is defined by his creator. Me. If I say I don't mean him to be disabled then that’s it. A fictional doctor can't come along and prove me wrong.

Well, that all sounds fine. Except that to me, and the huge majority of people I know who watched the programme, Derek very clearly was disabled, either with mild learning difficulties or (some people suggested) on the autistic spectrum. The people I'm talking about are people with disabilities themselves, or parents of children with autism. Y'know, people who actually know what they're talking about when it comes to disability, unlike Ricky Gervais - remember he claimed not to know that "mong" was an offensive term for people with Down's syndrome?

What effect did Gervais want Derek to produce in the viewer? Well the programme was billed as a "comedy drama". Looking at the hashtag #Derek on Twitter during the programme, most mainstream viewers seemed to find it very funny - but they were laughing at Derek, not with him. A minority found the programme sad, because of Derek's condition.

Afterwards, Ricky Gervais tweeted:

One review of Derek said they weren't sure if they were meant to laugh or cry. I'd suggest that whatever happened was the correct response

Some writers can produce work that makes the viewer both laugh and cry. Is Gervais one such? I would suggest not on this evidence, because he encourages people to laugh at his characters and sympathise with them, rather than laughing with and empathising with them.

But what harm can a TV programme do?

Well, a couple of days after the programme was broadcast, I was at my local shops. A bunch of kids yelled "Oi, Derek!" at me. I'm female, I don't have learning difficulties, and I use a wheelchair. The only similarity I can think of between me and Derek is...we're both disabled. For these kids at least, the programme was making disabled people in general into objects of derision and targets for abuse.

And there's evidence that as disablist speech becomes more common, so does disablist hate crime. A report at the end of 2011 showed that hate crime had risen by more than 75% in one year. Disabled people report being spat at, having faeces pushed through their letterboxes, and even being tipped out of their wheelchairs or physically attacked.

In just one terrible example, Fiona Pilkington killed her disabled daughter then committed suicide after years of constant abuse from local youths. In at least one case, a man who called the police several times to report abuse was recorded as a nuisance caller.

The reasons for this rise are many. One is the prevailing "anti-scrounger" rhetoric from the Government and the red-tops,which has the tendency to paint all disabled people (working or not) as thieves, stealing undeserved monies from the apocryphal "hard-working taxpayer".

But another has to be the dehumanisation of disabled people. If we're suitable objects for laughter - or pity - than what does it matter if you take it a little further? We're not like them, after all. We're different. But somehow, all the same: all disabled.

If you're the victim of disability hate crime (or any other kind), please report it. You'll get the support you need, the offenders will hopefully be dealt with, and it'll send out a message to the wider community that this is just not acceptable.

And who knows? Maybe, just maybe, one day Ricky Gervais will work out that the way he takes the mickey out of the disabled really isn't funny!

This is my post for Blogging Against Disablism Day 2012. Follow the link to the Goldfish's always excellent blog for lots more blog posts on the general topic of disablism.

Disability choons

Today, the time restrictions on contributory ESA come into force. I could have blogged about that. But I thought instead I'd stay in my happy place, and give you some music that could (almost) have been written for us disabled people!

I Can't Stand Up For Falling Down - Elvis Costello

Head Over Heels - Tears For Fears (suggested by ValleysBloke)

Trip Stumble and Fall - Stephen Bruton

Wheel's on Fire - Julie Driscoll

Dizzy - Vic Reeves and the Wonderstuff

Pins and Needles - Billy Talent (suggested by @spa280y)

Comfortably Numb - Pink Floyd (suggested by @SarahRansley)

Spasticus Autisticus - Ian Dury and the Blockheads

 

I'd Rather Go Blind - Etta James (suggested by @katebielby)

Darkness Descends - Laura Marling (suggested by @ValleysBloke)

Crazy - Gnarls Barclay (suggested by @KateBielby)

Borderline - Madonna (suggested by @living_as_if)

Led Zeppelin - Black Dog (suggested by @ValleysBloke)

Can't Get You Out Of My Head - Kylie Minogue (suggested by @spa280y)

But whatever life and the DWP throw at us, we've got to think like Chumbawumba, in I Get Knocked Down (But I Get Up Again) (suggested by @spa280y)

Heartstopping football

It's great news that Bolton footballer Fabrice Muamba has been discharged from hospital, following the mid-game cardiac arrest that nearly ended his life.

That he's done as well as he has is a tribute to the expert care he received, on the pitch, in the ambulance, and in the London Heart Hospital, as well as his own youth and physical fitness.

The same day as Muamba's collapse, and more than 400 miles further north, Kilmarnock beat Celtic in the Scottish League Cup. But their celebrations were cut short when midfielder Liam Kelly's father Jack had a heart attack in the terraces, and died soon after in hospital.

It seemed like sudden deaths during football matches were everywhere, though probably they were no more common than more before, just being reported more. Chris Ralph, who was in his late 40s, collapsed and died from a "suspected cardiac arrest" during a veterans' county cup final in Devon. Further afield, 25 year old Piermario Morosini, a former Italy Under-21 International, also collapsed on the pitch, and couldn't be revived.

As I said above, it appears that the media have decided "cardiac arrest at football matches" is the flavour of the month. One thing I've noticed in the many reports is a confusion, even conflation, of heart attack and cardiac arrest. They're not the same. No, honestly.

The heart is a muscle. To do its work, it needs its own supply of blood vessels to bring it oxygen. They're called the coronary arteries, which is why you might sometimes hear a heart attack referred to as a coronary. If there's a blockage in one of those vessels, you get a heart attack. Where that blockage is determines how bad the heart attack is.

If only a small part of the muscle is starved of blood, that's a minor heart attack. The person is likely to have crushing central chest pain (possibly radiating into their left arm, jaw, and/or back), be pale, cold and clammy, and feel sick and dizzy. They need to get to hospital urgently. But their heart is still beating. No cardiac arrest.

Most certainly a more major heart attack can cause cardiac arrest - but so can many other things. Actually, if you think about it, ultimately we all die of cardiac arrest, don't we? And we've certainly not all had heart attacks.

So the take-home message today is: heart attacks and cardiac arrest are not the same thing! Take-home message 2: why not go on a first aid course so you'll know what to do if someone collapses?

MS Research Roundup April 2012

Some more really interesting MS research projects have reported recently. It's an exciting time!

All of us with MS have probably had MRIs, for diagnosis or to check on progression. But there has always been a paradox: the number of lesions in the brain doesn't correlate with the effects of the disease.

Researchers looked at the number of lesions in different parts of the brain, and found that they could be correlated with specific symptoms. For instance, lesions in the precuneus and precentral gyrus were most predictive of mobility problems.

MRIs have poor resolution, and contrast media such as gadolinium do not necessarily measure what they aim to: they often show fluid rather than inflammation. This research could help MRIs to be used with a new precision, as a truly useful clinical tool.

We already know that many women find their MS symptoms improve during pregnancy. Now Australian researchers have found that even one pregnancy halves a woman's risk of developing MS in the future.For women who have had two or more pregnancies, the risk is a quarter. The researchers suspect this may be the reason the rate of MS in women has inched up over the last few decades, as more and more women have decided to have babies later or not at all.

An interesting study from a group of Belgian researchers. They got nearly 1400 people with relapsing remitting MS about their diet, drinking habits, and whether they smoked. They found that people who consumed alcohol, wine, fish and coffee on a regular basis took 4-7 more years to reach the point where they needed a walking aid than those who never consumed them. They didn't find the same pattern in people with progressive MS. Those who smoked cigarettes needed walking aids earlier than those who didn't.

I'll just have to hope that my intravenous coffee drip offsets my cigarettes then...

Research is continuing on various aspects of the CCSVI theory. The theory states that malformed and blocked veins in the neck lead to the deposition of iron in the brain, which in turn leads to autoimmunity and demyelination of nerve cells.

A group of American researchers tested this theory by tying mice's jugular veins shut. The mice were then observed for 6 months. There were no signs of inflammation or demyelination on CT or MRI, and no clinical change. This result strongly suggests that CCSVI is not responsible for demyelination, and therefore not responsible for MS.

We've recently seen the approval of the first oral drug for MS, Gilenya. The next to come into clinical use is likely to be BG-12, which has had extremely good results in trials. When taken three times a day, it halved the relapse rate compared to a placebo tablet.

Now the manufacturers, Biogen Idec, have applied to the FDA for approval for BG-12. They're hoping for priority processing which will shave some time off the process: if they don't get it, BG-12 should be released in the USA by the end of 2012 or early in 2013. Hopefully it'll be introduced in Europe soon afterwards, and so on around the globe.

The next study is of particular interest to me, as I've recently had this treatment myself. (Watch this space - I'm planning to post about it.)

BOTOX^® is already approved in several countries including the UK and USA for the treatment of overactive bladder resulting from neurological problems such as MS and spinal cord injury. It works by relaxing the bladder muscles that were previously going into spasm, causing urgency, frequency, and possible incontinence.

Now two Phase 3 studies have shown positive results for BOTOX^® for idiopathic (cause not known) overactive bladder. These results are just further confirmation of the usefulness of BOTOX® in treating overactive bladder.

Many people with MS fall: falls can result in injury, and the fear of falling can result in severely restricted mobility. American researchers asked 575 people with MS about their level of disability, how often they fell, and how afraid they were of falling. Nearly two thirds were concerned about falling, and over two thirds restricted their activities because of fear of falling. People with moderate mobility problems had the highest number of falls, and those with the worst mobility (ie non-walkers) had the fewest.

What can we do with this information? I suppose it's a question of awareness.If you know you're in the group most at risk of falls - the group with moderate mobility problems - you need to take particular care not to lean too far over, not to turn your body without moving your feet, and so on.

Researchers in Germany asked several hundred people who felt severely affected by their MS whether they wanted their doctors to talk to them about their disease progression, and about end-of-life issues.Three-quarters wanted to discuss their disease progression, but less than half were interested in talking about end-of-life issues like whether they would want to go on a life support machine or whether they would want to be resuscitated should the need arise.

These are important but very sensitive topics. Doctors must show great sensitivity when raising them.

So that's it for this research roundup.See you next time!