I've always felt I might be ahead of the wave and as if any more proof were needed, here is my purple cast which I 'wore' over christmas and New Year.I believe it beautifully brings out the bruises making their way down my toes rather nicely don't you think?

It's been drawn to my attention that Radiant orchid is The Colour of the Year according to pantone

post today is short and to the point. Unlike the six weeks of cast over christmas. 

The following view was joyous!

ok, so my goth party cast and radiant orchid are quite different colours but out of what was on offer at the fracture clinic (red, blue, black, white, yellow, green, orange) I came as close to radiant orchid as possible.

Purple has also been designated as the colour of disability according to the BBC's reporting of the trendsetters and marketeers. Noone's sure but perhaps it relates to disabled US veteran's puple hearts, the colour of royalty, the official colour of  the "Non-partisan UK-based Disability campaign. Advocacy group Broken of Britain. As a group in society we represent enough disposable income to be worth chasing, like the grey and pink pounds, apparently. 

Not sure if we'd all agree with that but I still managed to survive the angle grinder they use to cut through the cast without picking up further disability!

I naively hoped once the cumbersome cast was gone I'd be feeling, in comparison to how i was before the fall so incredibly, gloriously mobile.

How wrong I was but it seems nothing comes to anyone effort free.

Bring on the knitted wheelchair warmers, I say!

The UK MS Society went purple a few years ago from orange; almost a 180degree change on the colour wheel... My mistake, they appear still to be orange but the free cloth shopping bag given out at the event in 2012 is purple. 

I've been doing a number of things with/for them over the past year some of which i think I've blogged about before I would provide the links but it's a Friday evening, I've just had a glass of wine, I'm listening to the Now Show on BBC radio4 and have some photos to process for a business mentor's website. I'll put the link in a later post when my photos are included.

I also need to return a call to a lady in the process of drawing up a study or trial into an MS treatment. I really do need to read up on what they're after

a multitude of high stakes... it would seem

This article highlights some of the vested interests in ms healthcare. All the hot and fetid air that gets blown over people with ms who, you could argue, are the ones with most at stake in finding answers concerning their condition are only interested in keeping themselves as able as possible and yet have to watch grown adults squabble and name call.
I think it goes some way to explaining our (I and my fellow colleagues in disease) years' long righteous ire.
The last paragraph is worth reading I, with a vested interest found it a long article but worth sticking with.


All I can be sure of is what has happened more than once, to me. My (or our?) reporting of our own human experience is, it pains me to admit, sometimes not all that reliable. see Nagel question what it's like to be a bat.
HDensityOT (hyperbaric oxygen therapy) which results in all the tissues of the body being saturated with oxygen makes the slowly deteriorating vision in my right eye (started 12 years ago) a little better whilst breathing at pressure. This would lead me to believe that if I were to take oxygen more regularly I might get more permanent improvements.
A side effect of this saturation is better communication with my bladder and a general lightening of the world. Think of the difference between going out under a leaden, grey, glowering dome and skipping out into a cloudless, clear skied day. Trying to measure that difference has proved pretty tricky but our own wellbeing is one of if not the most important things in our world and is unfortunately sorely overlooked in this sixty year old healthcare system that was developed while we still had rationing... times have changed and chronic conditions now abound. Our health service free at the point of need and envy of the rosy bespectacled world needs to change.
We're living longer but there seems very little debate about the quality of that life. Harold Shipman perhaps took it too far but it could be argued that family GPs up until the entry of the pharmaceutical companies and their desire to grow market share had a handle on their flock and couldn't/wouldn't waste thousands on elderly parishioners when there were handfuls of babies and oyounger members of the comunity that could do with a fair crack o' the whip and perhaps some extra attention.

Whilst the bitch slapping mentioned above goes on for humans, in race horses where there is obvious money to be made or lost this vet article mentions the ill effects on 'sport horses' of jugular vein occlusion. No question of whether the condition exists.

I'm not quite sure where this link came from  (these blog posts don't follow a straight path from conception to completion) but it sort of neatly illustrates how someone with an ill defined incurable condition needs to read lots of stuff and try lots of stuff to find a way through their own predicament. Holistic rules: believe in yourself and question EVERYTHING else and begin to enjoy the process of de-stupidification!
All healthcare professionals have different priorities to us. After all, they can close the door on our condition at the end of the working day.

holistic's not a dirty word

it seems neurologists' specialism stops them asking why blood's swilling around depositing iron in the first place. They aren't able to take steps back from their microscopes. There was an interesting experiment into how eastern and western people 'read' a picture in front of them. We in the west saw a fish whist a more eastern appraisal noticed and mentioned the rocks, sand and weed in the background.

Western science doesn't appear to encourage taking steps back to get a better understanding of a fuller picture of the human body in all its complexity but moving beyond reductionism and applying holism to the human body would seem to me to be a good idea.

• Daisy Zoll Not being a scientist I cherry pick the data and pick out the bits I find interesting (let's not discuss GSK et al today!) I was interested in the fluid dynamicist a couple of years back pointing out (or what I chose to remember of what he was saying), we're a sealed unit and 'wonky' flow somewhere will affect elsewhere. From a patient's point of view I find drilling down deeper into the vagaries of your own personal bloodflow a bit like counting angels dancing on the head of a pin. How can we get some basic hypotheses tested to see if we can move this quagmire along a little? Mr/Dr Arata , what do you see as being the shape of the next steps to take from what you've seen in your practice?

  about an hour ago · Like
• 

  Michael Arata Fundamentally we are a collection of chemical reactions. Environmental input may alter those reactions. SNP's vary each individuals ability to respond to these environmental stressors. The more we understand about the uniqueness of each individual the better we are able to assist the body in returning to balance. The autonomic system is at the core of the response to environment. Perturbations lead to complex disorders so no one "therapy" will correct it. Rather a patient and consistent effort to restore balance, preferably tailored to an individuals polymorphisms is best. That is my view. Michael is fine 

  54 minutes ago · Like
• 

  Linda Rousay I will spare everyone my synopsis of the thread. After numerous brain storming sessions with my circle of physician types I deduce that there is not a common denominator with "MS". Therefore the currently accepted definition of Multiple Sclerosis is as inherently flawed as the autoimmune theory.

  46 minutes ago via mobile · Like · 1
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  Daisy Zoll ok Michael, thanks for response so can we take from what you say that double blind placebo controlled nonsense really isn't at all a useful model in treating ms let alone whether meaningful conclusions can be drawn from EAE...ie. it's flawed/we're f**ked from the ground up?

  43 minutes ago · Like
• 

  Michael Arata Nicely distilled daisy 

  42 minutes ago via mobile · Unlike · 1

(SNP sympathetic nervous system?) this post has been hanging around since the summer, I think.

I imagine there'll be many terms I've used in error but the basic premise of this post is to 'take a step back' (it's not the same as a backwards step)!

I signed up to Open2study the australian university's free online taster classes to encourage people to sign up to their paid for offerings. I'll let you know how they go.



these classes have been going great:
teaching adult learners
basic nutrition
anthropology *
human physiology: the body as machine
introduction to psychology

* he's a really good communicator and totally gets past the fact that it's a one way process with no interactivity (although there are evolution models to change variables on and run to get different evolutionary outcomes). If you feel like a bit of extra learning then I can't recommend this course enough

The human physiology class is pointing out to me the huge space for variation there is in the day to day running of the human body and I now feel a bit more aware of what Michael's been saying.

this is a slightly confused and more than likely confusing post but that's the way we perhaps need to look at aspects of the functioning of the human body... from lots of different angles?

Linda and Michael, I haven't sought your permission to reproduce your words here but as noone seems to read this blog I thought it might be ok, thank you both for your understanding

awesome

I was watching this clip and marvelling at the huge power held by the sea and admiring those who can comfortably and relatively safely engage with it.
Sometimes it can be easy to feel swamped by MS and as out of control as this surfer can appear but I believe we can get to know our condition in the same way as a surfer reads the sea.
We don't need to carry an underwater camera but it could be argued there's some overlap:
The water is monstrously powerful but there is a certain amount of predictability to its power (by saying this I don't mean to detract from the calculated risks surfers and other adventurers who can read the sea take every time they read the waves and anticipate the break). Rather people living with a chronic, degenerative health condition also need to succumb to a power* greater than their own.


But, I imagine surfing is a bit more exhilarating!

Having said that there is a 'zone' to be found and unconsciously explored when you find the sweet spot between just enough exercise to energise you but not so much that it wipes you out or pushes you off balance.
Paying more attention to all the different cues can bring a certain joy.
It's hard to know sometimes if the sea or the performance of ones own body delivers more or less manageable predictability.

* I'm not talking god but whatever floats your boat. I prefer to stick to known things (proven either to myself or a large number of others)
It'd be great to hear other people's reading of their situation, what are your thoughts?

urgency schmurgency

Do you sometimes get the feeling you're standing about and just waiting for... something, anything that isn't scheduled to happen at some impossible to reach, future date?

http://www.medicalnewstoday.com/articles/264892.php

Absolutely the Chinese doing it years ago must be frowned on, but roughly 10yrs down the line we're (western medicine) happy to give it a go! Obviously it will take at the very least another 10 years before the treatment reaches patients. 
It's nice to know that MS researchers have grasped that sense of urgency we feel every day. I understand there are checks and balances to new approaches but please, let's get a wriggle on.

stand firm

We've enough things come charging at us full tilt that we don't need to feel like our caregivers through their actions, are doing the same.


These two cases aren't necessarily related except they appeared on my news horizon close-ish together.

This is a slightly edited reply I gave to a young woman from East Anglia who, in the last few months decided to take herself off disease modifying therapies (she was diagnosed less than a year ago.

"Is there a legal issue here? you're over 18, right? you're a grown up and they can't force you to take something if you don't want to. 
It's worth not pissing people off so show you're trying to behave like a responsible adult and would like to look at all the available trial data. Ask if they could please show you or point you in the right direction to see some compelling proof for taking these drugs. 
Ask if the doctors wouldn't mind treating your prescribing situation like a court of law - please could they provide as close to incontrovertible proof of the benefits of breaking your skin?

Behave like a grown up and keep reasonable. 
Don't get heated and start accusing them of trying to hurt you cos they're not.

(MSfriends, with the best of intentions, can sometimes get a bit heated and lots of folk take it very personally, don't fall into that trap!)

Seems like you've been doing pretty well so far without any help from any of us!

The doctors are just doing their jobs (we don't need to go into conspiracy theories or question the kickbacks they may/may not receive from pharmacos; it just muddies the waters and gets people's backs up).

Remind them that they get to close the door on MS at the end of the working day but you have it 24/7 so you really don't want to make a hasty treatment decision, they can understand that, can't they?

Appeal to their logical, scientific, rational brains and reassure them they know an awful lot more than you but you're at the beginning of adulthood and want to do things properly (flattery may not get you everywhere but it helps avoid the closing of some doors).

Have a good rest of August and give us a shout when you're round this way.

Do you have someone to go in with you, are your folks able to get time off work/would you like someone as moral support?

I didn't myself but there were no DMTs available before my mid 20s. Not sure how rational I would have been a few years earlier.

I haven't asked, what sort of symptoms do you have?
x

The less than 20yr old woman replied that she was at present Asymptomatic.

I can't help but wonder if the person I replied to with this message is a ringer of some sort?
I could be utterly wrong and have just developed a judgmental, undiscerning hypercritical mind over the years!
in which case I wholeheartedly apologise.

meanwhile in non MS circles:

it took someone with cancer (twice) to point out that oncologists (and consultants generally, I chose to infer from the radio interview this morning) don't seem to look at the body holistically! In treating his prostate cancer and subsequent throat cancer he's been left from the agressive radiotherapy with a collander where his body should be.

Consultants/experts get to close the door on the patient at the end of their working day but the patient deals with the condition and gets no let up.

addition one day after posting:
after just catching up with a couple of wheelchair Kamikaze's posts I need to remember how good it felt being non-judgmental (after a short mindfulness/meditation course) and just rein it in a bit.

people and things seem to help more than ever gets acknowledged.

Apologies for not coming up with a more snappy title!
the bold and italicized text is a quote I noticed on my travels through Cambridge University/Addenbrookes Hospital Neuroscience department whose sentiments I wholeheartedly agree with but speaking as a patient, have rarely seen on my travels through UK NHS Healthcare.

"Many of the most significant and interesting challenges of the modern world require boundary-crossing collaborations"
Alison Richard, Vice Chancellor at Cambridge Neuroscience, University of Cambridge

I guess she's referring to research but as one the eventual potential recipients of this research, to be honest, it makes me want to cry how little collaboration there appears to be in the process of caring for people in the face of the unknown/unacknowledged.

" These medical professionals know all to well about the vascular connection in “MS”. Dr. Fox/Cleveland Clinic had his own autopsy presentation (valvular malformation or so) at ECTRIMS back in 2010/2011 pretending he discovered some new stuff. I can’t remember exactly the year and I didn’t save this neuro junk science either. Nevertheless they are not to shy to recruit/kill more people with “MS” by treating a fantasy disease to make as much $$$ until the Multi-Billion$-“MS”-bubble is bursting! Btw., I’m pretty sure, meanwhile the neuroland majority is informed about the content of Dr. Schelling’s book, which doesn’t mean they understand it."
please contact me if you'd like the details of where I found this quote and reproduced it (removing identifiers as I didn't seek permission).


Dr Franz Schelling is the most interesting contributor to this conference (speaking as a layperson) and not just because his research, started in the 70s. He initially looked at hydrocephalus in children which soon took in other neurodegenerative conditions including MS. Paolo Zamboni talked extensively with him before releasing the Liberation Procedure onto the world.
But the other reason I think Dr Schelling's interesting is because we've chatted on Facebook. 
Social networking's an incredibly democratising technology which, again speaking as a patient, I believe could be such a force for good in medicine. 
I've also been lucky enough to have digitally engaged with Michael Arata an interventional radiologist on the west coast of the US who told me why the double blind placebo controlled gold standard of clinical trials didn't really suit MS. He is of the opinion that the vagus nerve gets a nudge during angioplasty and hypothesizes that the reported far from universally, good effects of Liberation treatments have an effect on the parasympathetic nervous system for this reason. I think I've quoted our Facebook conversation elsewhere on this blog. I don't believe that neurologists can deal with MS on their own. This would appear to be a very good place to go to get a handle of who's who in the list of medical professionals who are investigating a vascular hypothesis that explains symptoms patients are presenting with or developing rather than the condition from which they nominally suffer.


Ben Goldacre is very good at drawing attention to the plight of drug companies who, to protect their profits sometimes lose unfavourable studies that don't reinforce the worth of buying into their products at the various stages in a drug's development.

In the process of  so beautifully shining the light of publicity onto this practice we can see, at the very edge of that circle of light lies the great work of Sir Iain Chalmers who was part of developing the Cochrane meta analyses of published studies and Ibelieve was also instrumental in developing the James Lind Alliance which I joined a couple of years ago and was fortunate enough to take part in one of their priority setting partnerships earlier this year, hosted by the MS Society at the other Edgware road in London 

People seem to be so unwilling to say where they got help from or whose idea it was in the first place... so these are the folk who first came up with the idea of getting patients and clinicians together round a table.

Chi Kung is a process of very small movements that I have found calms the mind.
http://homepage.ntlworld.com/mike.tabrett/id29.htm

A Feldenkrais practitioner who I found online after hearing the treatment's name at my local MS Therapy Centre, Valerie Fabre, very luckily lives even closer to me than Addenbrookes Hospital. She is more of the opinion of http://www.normandoidge.com/normandoidge.com/MAIN.html who holds that the brain is imminently plastic and malleable and with the right neural reminders set in place an increasingly immobile body might become a little less so. 
it could all be pie in the sky but I find it easier to work with than hearing "your brain is shrinking at quite a rate and you can't do a thing about it"
I'm grateful this neurologist, who is a thoroughly nice bloke, discharged me a few years ago.