Filed under: life
Here’s an odd title to get you going, just what does my great grandad have in common with Derren Brown. Well, let me tell you a story that is based in the kind of Devon logic as used by my great grandad.
He once said to me “tourists are a bit dim. They think coz we live down ere in the country that we are in some ways closer to nature. By proximity we is o’course but we don’t know the mind of it. But, they will quite often ask you what tomorrow weather will be.”
He continued, “what you should do is look at the sky and cast your eyes round it, making seem you be taking it in. Then tell them you think it’ll rain.”
The reason he explained “if it don’t and it’s sunny they’ll be out on their frawsy and think no more of you. If it do they’ll remember it exactly as you said and be a wonderment that people can tell it by looking at the sky”
Now, I’ll leave you to draw your own conclusions as to how this relates to Mister Brown.
Now I do quite like the mans programmes, he really is unfairly clever. But it’s exciting that he has a new series. I like clever tv.
http://derrenbrown.co.uk/blog/2011/10/experiments-online-exclusive-unseen-footage/
Secret Art Show
I have been asked by the MS Trust to write something about the Secret Art Show. The last ones I believe were quite successful.
I feel the best way to start is to say a little about the MS Trust. It is a cause that I particularly like. They are a charity that is involved with education and research. I don’t think that anyone with MS in the UK has not at sometime been aquatinted with one of their publications.
When I was diagnosed in 2008 and I first saw my MS nurse it was publications of theirs that she gave me. At a time when everything seems up in the air such things are great boons.
The MS Trust remains to me as one of my primary sources of information. Its balanced views of new medications and treatments are the best to turn to when a new “miracle cure” is announced in the papers. Open Door, their quarterly publication, with important news on campaigns issues and treatments, is very good, along with the personal stories that show us that others are in the same position is an invaluable resource.
The publications of the trust are not just important to the MSer (could we please not say sufferer, I refuse to let it make me suffer). When I had problems at work they helped me to make my manager understand what I was trying to say. It was enormously helpful because to some extent they expected me to be an instant expert on the subject. I am though, like everyone, learning as I go along.
And all this, before we get on to the helpline and the wonderful website, which is always up-to-date with new developments.
As you can tell I cannot sing their praises highly enough. They even find answers to your queries via twitter if they possibly can, as they did for a pharmacist follower of mine just lately who needed information for a patient,
As stated above, I consider the work the MS Trust do as highly important and valuable, to MSers and all those connected to them, as well as wider society.
So, money needs to be raised. The trust always thing of fun ways of raising money and I think this is a fab idea; The Secret Art Show.
All pieces of art the same size and all the same price, except that some are by famous artists or celebrities and so are probably worth more than you pay, others are by non-famous artists and so are valuable in their aesthetic merit. So buy something you like the look of, that you want on your wall. You never know, it might be by someone famous, or possibly by someone who is yet to be.
helen x
Filed under: Uncategorized
Hi. Long time no write. Technical and health difficulties.
Anyways, right now I need a car. I only drive autos. I don’t work full time so can’t get credit.
If anyone has any ideas they are gratefully accepted.
I’m just getting so tired. It’s difficult walking to work and arriving exhausted.
😦
Earlier this year a petition was posted on the number 10 website. It was this:
We the undersigned petition the Prime Minister to deliver on the rights of every person with multiple sclerosis to world-class healthcare, to independence and to support to lead a full life.
The detail of the petition was as follows:
More details from petition creator
We call upon the UK Government to take immediate action to improve the lives of the UK’s 100,000 people living with MS by committing to delivering on their rights to:
– Quality and specialist health care throughout life, including fair access to the right drugs and treatments.
– Personalised care and support, wheelchairs and enabling equipment to live independently.
– Support in and out of work, and support for carers.
MS is a complex, unpredictable condition with no known cure. MS can have a serious and progressive impact on a person’s physical, emotional and mental wellbeing, and can lead to severe and permanent disability. Across the UK, serious inequalities in access to drugs, treatments, enabling equipment and support services mean that people with MS are being denied their entitlements every day. We believe that the Government has a duty to ensure that every person with MS in the UK gets the quality care and support they need in order to live their lives to the full.
This was the response as posted by HM Government, unfortuately it has to be a link because it is not posted in such a way that it can be copied and pasted. Like it’s a secret or something. Bad govt.
Now, I’m not really going to discuss this too much because I’m not sure what to make of it. Is it adequate or is it just a bunch of words?
I will note this though. There was not element in the response relating to support in work. We do want to work. At least whilst we can. And also need the transition to being a non worker to be smooth and as stressless as possible. My workplace gives me so much trouble. I realise it’s technically covered by existing legislation but the nature of the illness being what it is….
MS posse
I thought I would write to my fellow MSers on Twitter. Sure we are a disparate band but the support is amazing.
When ever a problem arises or you get a new symptom or drug the combined experiences of the group are a boon. There is always an idea or suggestion or just the support that’s required. There is so much difference talking to people with experience of MS. An innate understanding of what you mean and how you are feeling in a way that those without could not comprehend.
Also they are all a bunch of funny people. I guess your humour and appreciation of life must grow and deepen when faced with such things. Either that or MS cruelly targets good and lovely people. Full of awesome as my American friends would no doubt have it.
Well you are all fabby, if you ever need a virtual hug i’m here for you. You make life more livable.
Filed under: life
Star Carr
I would once have called myself an archaeologist. So I thought I would write something towards that and Star Carr is on the news today. So I thought I would tell you about it. I’m not necessarily going to talk much about the current dig as it’s still ongoing and much of the most interesting scientific evidence has yet to have been collated.
Star Carr is in the vale of Pickering, East Yorkshire, it is a significant Mesolithic site that has always when investigated served to add greatly to our knowledge of that time.
The original excavations were carried out in the 1950’s by Grahame Clark and led to his seminal work Excavations at Star Carr. This work in the main concentrated on the faunal evidence available at the site. As in the Mesolithic era it was swamp and lake (now basically marsh land) the level of preservation of organic material is remarkable. This is what has made it such a fascinating resource.
The evidence in the form of faunal remains, including bones and antler, many of which show working, helps to identify the way the settlement was used and aspects of how they lived. Also because of the preservation conditions wood exists, particularly striking in the original excavation was a wooden walkway leading to a platform in the lake. There are curiosities to the remains. Whilst there is the standard use of deer and large mammals as a food source and the use of bones and antlers for tools and such, despite the fact that the settlement is on the edge of a freshwater lake and not far from the sea there is a curious lack of fish of molluscan remains. There is evidence though of the use of beaver as a food source.
Whilst it has been widely debated in archaeological circles about the nature of the settlement it is now generally thought that the site was mainly for seasonal use. It is speculated that whilst the majority of those who lived there would move on to other settlements there would have been a small core of people who remained year round for industrial purposes. This is because of evidence of skin working where the natural enzymes in the swamp edge would be used to help with the tanning process. In fact a roll of skin was found within an area penned in by wooden poles. This can only take place in summer as enzymes need to be of a certain temperature to work.
Now to return to the matter of the wooden platform out into the lake and the fact that there is no evidence of the use of fish. Now on first glance it ma appear that the platform would make a good place to land fish but as they are not used we have to look for another use for it. Yes there is the possibility of a boat landing stage and no doubt they would have used it for that, there is other evidence though. Past the end of the platform, on what would have been the lake bed, was a scatter of stone, bone and antler tools, the majority of which unused. These would have been votive offerings in a practice that started 11,000 years ago and is still prevalent in human societies. In fact, it is still common amongst people of even so-called ‘civilised’ societies although those that do it may not realise the origin of such a ritual (if you don’t believe me, consider that archaeologists, quite often amongst themselves, call it wishing well syndrome). This sort of ritual my also be, in half remembered medieval way, be where Excalibur and the lady of the lake comes from. Perhaps truth nuggets in old legends are for another time.
Now for the explanation of a lack of fish, both fresh and sea water, and of shellfish despite being surrounded by it. Sites of a similar age show the use of these fauna as a food source some quite spectacularly so. This does give a small window into the mind of this particular Mesolithic group, because if technology was not an issue and other ate it and knew it was safe what possible reason could there be. It seems then that a possible explanation would have to be that of a cultural taboo. There are plenty of perfectly nutritional things that are not eaten that are perfectly abundant that we don’t eat when you think about it. What makes this more curious is the eating of beaver, though to be honest beaver does spend some of its time on land. Whilst we can say that this does appear to be a taboo it is of course impossible to work out precisely why.
This is a bit of background and it is all from far ago memories from uni days so it’s a little bitty I’m afraid. the news from the latest dig can be found below but, bear in mind it is preliminary.
The latest release from the University of Manchester can be found in the link
http://www.manchester.ac.uk/aboutus/news/display/?id=6009
and an article from The Independent
http://www.independent.co.uk/news/science/archaeology/archaeologists-discover-britains-oldest-home-2048927.html
I haven’t written on my blog for far to long. So here’s an update.
Around Christmas time I had a bit of a down and went on anti depressants. I guess my coping mechanisms failed and it finally all got to me. The fatigue got worse too. Anyways. By the beginning of January I was feeling a little better.
To be honest from that point I hadn’t even really felt ‘right’. Really I’ve just been floating along.
So zip forward to more recent times.
Well it seems I’ve had a relapse. It’s not been pleasant. About a month or so ago I became almost continually dizzy. It was hateful. So I rang my MS nurse. She’s very good, she told me to go to the GP and ask for bloods and such. My normal GP didn’t have space that day so I had to see another. He didn’t seem to think I needed tests and gave me some prochlorperazine.
It didn’t work so well. Any way the dizziness continued and i got some cinnarizine. It developed this dizziness into an unbalanced feeling in my legs and needing to pee about two minutes after drinking anything. So I booked my tests and they were negative. This basically left a relapse as the most likely cause.
So I was given a course of steroid tablets. 4 days on 500mg. This is a big dose. I will warn you now they taste disgusting. If they even so much as touch your lip on the way in it will stay there all day. I couldn’t even remove it with a polo mint!
More to the point though I did feel like my skin was on fire and my joints ached so much. Thank goodness it was only for a short time. That was last weekend.
This week I have not spent quite so much time in the loo. Which is always nice. It has felt like I have been trying to walk through treacle though. Just so tiring and getting nowhere fast. It’s gradually getting a bit better each day. I don’t feel like I did before yet.
The GP said no promises but I hope I’m not left with too much residual nastiness.
Now this is the point I guess where I say I will be a bit more regular on the blog. Because I did intend that when I started. I just hit a bad patch where I was functioning on auto pilot. I am so fed up with this being ill malarkey I can’t tell you.
Filed under: Uncategorized
This has been a hot topic in MS circles in the last couple of weeks. Many papers have been posted based on a small sample study based in Italy, which is leading to further tests in many other countries.
The problem for your average person is that we are given interpretations of these papers and everybody seems to be taking what they want from it. So, is this the new hope that we are promised or is it another one of those that pops up for a while and then gets forgotten again, a hope raiser that soon disappears.
Essentially I think that in some ways it is too early to tell for us lay people however, I think that anybody with a long term illness owes themselves a favour to really look into things before we leap on the band wagon. Towards this end then, I will try and gather together some of the arguments in an attempt to find the current position on it. Its only when you put the bits together that you can see the whole picture.
First it is best to look at Dr Zamboni’s original paper. If you wish to do so please look here (but make sure you have your good eyes and brain in), essentially Dr Zamboni suggests that iron deposits around the veins in the neck and chest restrict the blood return to the heart causing reflux into the brain. When this was got hold of by the randomness of the internet and hailed widely as the best thing since sliced bread and everybody wanted some. I believe I shall call this ‘hope hysteria’; there is no other description for it. One paper does not a cure make. Even in his paper Dr Zamboni ends with this;
Finally, an additional possibility could be related to the side
effects of MS drugs on the venous wall, although these have never been reported.
The hypothesis of venous malformations of congenital/
developmental origin associated with CDMS seems to be
plausible. Nevertheless, additional longitudinal studies are
necessary to confirm this hypothesis, as well as to understand the contribution of chronic insufficient venous drainage of the CNS to the process of inflammation and neurodegeneration.
Finally, on the basis of our study, we propose the introduction of the ECD-TCCS protocol when a patient presents the first acute episode of demyelinating origin, mostly involving the optic nerve, the so-called clinically isolated syndrome (CIS).
Currently, only longitudinal clinical and MRI observation in
time and space is capable of establishing the possible conversion
of a CIS into a CDMS.
I think it is also important to remember that with this trial in Italy is that the sample numbers were very low and also that many of the MS patients were still continuing with their DMDs (disease modifying drugs), the outcomes therefore are not certain, or as certain as they could be.
Now from here we can say that his findings are interesting, but not a be all and end all. At this time I believe that trials are being set up in North America and the UK to test his findings, and that is how it should be.
Now I would like to make a point on the Liberation Procedure (seriously stupid name, I mean really, who does this guy think he is). Lots of places are saying it is easy. As I understand it involves inserting a stent in the veins of your neck or chest depending on where they decide you are bunged up. They do this by feeding it up through from a vein in your leg and up through until they put it in your jugular or where ever. How easy and safe does that really sound? So before we all jump in line for an untested and frankly scary sounding and unproven procedure maybe we should consider our own personal circumstances and if we believe we have really run out of options to that extent.
In everyday instances we must look for explanations of difficult scientific work from somewhere. We really do have to be picky about the sources of these, do not except a random article in the general press, neither should you except some random bloggers thoughts (including mine) but what we should look at is the thoughts of those bodies that know about or condition, have our interests at heart, pay for research and also help us in our everyday lives.
In the UK we have two groups who should be looked to for advice before any others, I believe. The MS Trust and the MS Society do us all a marvellous job in keeping us up to date and are broad minded and balanced in their approach to things.
The Trust has a couple of small pieces on CCSVI, but as it is a new thing you cannot expect more. There main comment is as follows; and can also be found in full here;
Dr Mark Freedman is director of the MS research unit at The Ottawa Hospital, Canada and a keynote speaker at the recent MS Trust annual conference. He was questioned about the new theory during an education session hosted by the MS Society of Ottawa on Tuesday night (24 Nov). He was sceptical about the “liberation procedure” which he felt was based on circumstantial clinical evidence and cautioned that people with MS should not rush into getting it.
Pam Macfarlane, Chief Executive of the MS Trust said, “The cause of MS remains unknown and we welcome any work that may shed light on this. Dr Zamboni’s theory will need further investigation in larger groups before any firm conclusions can be drawn”
This I think is a reasonable starting point and was written about a week or so ago. These things do need proper consideration and we do need to take our lead from those who are in the best position to understand and form judgments on such issues. The latest release from the MS Society makes these points (found here);
Research Communications Officer at the MS Society, Dr Susan Kohlhaas, said: “Several medical advisers to the MS Society have read through the papers published by Dr Zamboni, and have heard him lecture on the subject.
“They are not convinced by the evidence that blockages to draining veins from the brain are specific to people with MS, or that this explains the cause of MS at any stage of the condition.”
And further on;
Professor Alastair Compston, Head of the Department of Clinical Neurosciences at the University of Cambridge and winner of the 2007 Charcot Award for a lifetime achievement in MS research, is one of the MS Society’s six medical advisors.
He said: “The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.
“People with MS are unlikely to benefit from treatments that dilate blood vessels.”
It could be that these studies to help us understand MS. I don’t believe this represents the end of the story where CCSVI is concerned. Research continues and even if it does not lead to a cure or treatment it could still well be beneficial. It is also worthwhile to note that just because there is no convincing evidence now that there may not be in the future. The completed trials are small and Dr Zamboni does admit that there were limitations which he lays out in a more recent paper (skip to the discussion at the end if you don’t like numbers). We will have to wait for something more representative.
As I said at the beginning I do think we owe it to ourselves to understand as much as we can about our illnesses, they can be with us for a long time after all. It is important I think that we become ‘expert patients’ to look at everything from a distance see both sides, and also only to take our information from trusted sources. It is imperative we learn to get our facts straight in order to help ourselves.
see also; MS and Vulnerability
Filed under: MS
Life, the Universe, MS & Me 