Life, the Universe, MS & Me


My great grandad and Derren Brown
October 20, 2011, 6:45 pm
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/



The MS Trust Secret Art Show
October 3, 2011, 1:32 pm
Filed under: life, MS

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



I need help
August 21, 2011, 10:54 am
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.

😦



Petition and govt response
August 14, 2010, 9:21 am
Filed under: life, MS | Tags: ,

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.

found here

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 and Social Media
August 12, 2010, 10:18 am
Filed under: life, MS, Thanks | Tags: , ,

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.



I Have Other Facets
August 11, 2010, 7:21 pm
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



Such a long time
August 10, 2010, 8:02 pm
Filed under: life, MS | Tags:

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.



CCSVI and the Liberation Procedure
December 8, 2009, 3:01 pm
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



MS and the media
December 4, 2009, 6:00 pm
Filed under: MS

How things are represented in the media effects public opinion of them. That is something reasonably obvious to people who live in today’s society. They way that people think of MS is therefore fairly critical if we are to be able to live the way we need to within this society.

 

My alter ego is another example of how things are portrayed. Archaeologists are viewed within the frame of mind of people who have watched Indiana Jones, Lara Croft and Time Team, essentially we are pretty cool and like a bit of drink (bullwhip optional). That’s all fine apart from when people what you did at Uni and you tell them and they say ‘that’s interesting’, I have yet to find an appropriate response to that (normally go for ‘it’s like Lara Croft but with slightly fewer guns and a bit more paperwork’. Though I am tempted to give them a lecture on Langdale axes, prestige goods distribution and inferring cultural taboos from the evidence).

 

MS also has films and TV. Its one of those diseases where, if a famous person has had it than they make a film. Well it does tell others about our condition but, inevitably the people they have made programmes and films about tend to be in the minority bracket of MS’ers. Those that have a quickly progressing form. Ok it makes for a great story, as a representation though it reinforces the view of MS in the worst case scenario.

 

Is this a bad thing? What is wrong with people thinking we are all going to turn into such a state? Well it does mean that people cannot respond to us at the level we need. If they purely see the illness as an outwardly obvious physical condition how can we help people see that the vast majority of us are not and will not look like we are ill. At the same time if people are not aware of this then it will be difficult to elicit the appropriate response if we require assistance. This is particularly meaningful in the work place or amongst friends and family. The point to get across being, I may have these specific problems at the moment, but I am not going to slide downhill overnight and I would like to still be seen as a useful human being.

 

The worst thing I have ever seen on TV though that practically made me cry were some appeal films during Comic Relief. I know they are trying to help.  You know the ones were they show kids helping with they’re MS’ers parents (parent usually and single mother most often). Those ones that say about them using some of the money to take them on holiday. What particularly hurt was that it made me feel guilty for even thinking that one day I might want a future. It made me feel selfish for even contemplating the idea. Well next time I will close my eyes and stick my fingers in my ears, I’ll be damned if I’m letting it take any other possibility from my life, it feels like its had enough already.

 

Well now, I hope this won’t make me unpopular but I think its time to talk about celebrities.  I am actually mostly going to talk about Montel Williams. This may sound harsh but I hope it has a point. Now Montel as we know is an internationally know figure. He could be a force for good, for helping people around the world get to see the truth of our illness, whether he likes it or not given his profile he could be seen as somewhat of an ambassador. Montel has spoken of his illness a lot on his talk show; he was one of the first high profile MS’ers I heard about after being diagnosed. I spotted him whilst channel hopping. The thing is I think in some ways he is being a bit of a hindrance rather than a help. Partly this view could be because I saw him crying about it and it was only two weeks since my diagnosis.

 

Now I know he does has his foundation in the US and it probably does help people, but I can’t help but think that when he does choose to talk about it he could do so more generally rather than just in relation to what he feels. I have said before that every case of MS is different, with its different collection of symptoms. Part of me thinks that this grown man with millions in the bank could afford a bit of counselling to get over his emotional issues and really help.

 

What he does do though, and perhaps it is a very American response, is to tell everyone to drink copious amounts of juice, buy his fitness DVDs (I understand that Motel gets pain issues but I don’t think he has encountered fatigue yet by the sounds of it, he still goes to the gym) and his book which I believe is about defeating the illness by positive thinking. Don’t get me wrong I am all for positive thinking, it’s just that some people let that get in the way of reality. Acceptance of reality is important; you have to accept something as a problem in order to deal with it. I guess this can be linked slightly to my previous post on vulnerability, https://lifeuniversemsandme.wordpress.com/2009/12/01/ms-and-vulnerability/, why would you do that to one of your own.

 

Now I think some of my issues with those with fame and portraying there illness is that they are usually settled in their career before they get ill. I will admit to being a little jealous sometimes of people who have their life sorted out before they get ill and already have a house, a career and a family. I think it must be so much easier. I have said before that I started getting ill as soon as I left Uni. I have none of these things and they seem like they may be a struggle to get to. I don’t have the energy to work full time so maybe some of these things ill never be. Maybe that’s why I think Montel should stop crying. He had his life set up. I have a massive student loan and an overdraft on my graduate account that is no nearer being paid of than it ever has been. And I’m back in the box room. Envy is probably very bad.

 

We have to see how people view it. Is their view that MS’ers have no problems at all and can cope with these jobs, well again it depends on your personal MS. So that people see not just the worst case scenario, and not just these media types crying on TV and advocating alternative remedies (in some cases), they should be made aware of the reality of the normal average MS’er (for all that there can be one) to enable us to live better. And those with access to worldwide media ought to highlight issues that the rest of us deal with.



A poem that I wrote back on my 1st MSiversary.
December 3, 2009, 6:59 pm
Filed under: life, MS

My Invisible Friend

Seeking concentration in the fog
Lingering in space
In depth of nothing
A place to exist
An unknowable place
Am i neither in one state nor the other?
Between life and oblivion
I am defined by
Tethered by
Held by
Feeling my way with my new friend
Finding the path
Aching so as to feel the bones in shape and form
Pain shooting to numbing fingertips
No wish to be sufferer or victim, fighter or survivor
Fear – a certain uncertianty
A new road in the mist
Difficult to comprehend
Energy
Propelling force
Unwinding
Stopping
Snaps and gone
Why should i complain?
Others have passed this way
Invisable friend leading them blindfold
Such a rocky land
The way becomes harder
But there are others in the distance
Heading towards the cliff face
My friend or enemy
Constant attendant
Constant battle