eat your greens!

green leafy vegWe can science-ize the term ‘eating your greens’ for the 21st century by talking about the beneficial effects of folate on our methylation cycle.

As people with a long term condition we can seem easy prey for all sorts of quackery. This is an article that I believe might chime with our innate penchant for experts. This is another article that mentions the therapeutic use of a substance for a range of chronic conditions. This, on the other hand is an article about a therapy that has fallen from favour since its birth at the beginning of the 20th century. I don’t include mention of this therapy because I advocate its use (it could be great, I haven’t looked into or had experience of it) but rather as an example of how science and medicine (it appears) aren’t ruled by efficacy but fashion, chance and luck.

The author of the science based medicine blog (a laudable fondness, it would be nice if mainstream ms treatments could follow that same model!) doesn’t damn the little known therapy out of hand. He could find no data to say the therapy didn’t work so wonders why it did fall from favour?

My cynical self wonders if its demise coincides with the growing clout of the pharmaceutical industry and it’s love of treating symptoms rather than getting to the root of the problem. But I could just be a bitter old cynic!

Another area of research that in an earlier post I said I’d be getting back to you about looks at the level of homocysteine in us (it’s a naturally occurring substance created as waste products of essential bodily processes involving mitochondria, like making ATP (these little aliens in all our cells are the energy factories). and when our bodies are functioning at their best we are able to process it. This is good as it’s apparently a better indicator for cardiovascular disease in the future (in all its flavours) than any number of HorLDL cholesterol measurements. When we’re functioning optimally our bodies are able to break down and disperse homocysteine as part of the methylation process.

You may be able to tell, this is still quite new to me. From what I’ve gathered from Ben Lynch’s presentation on the MTHFR gene mutation when things aren’t performing optimally the body gets tired and like all of us, when that happens things start to go wrong. It shows in a number of ways including a variety of chronic conditions or cancers.

We can begin to address this by getting in touch with 23andme.com to get our DNA sequenced which, apart from letting us know where our ancestors are likely to have come from can also (after the data is interpreted by a functional medicine practitioner) let us know of some common markers that identify the potential shape of future disease in us. Personal healthcare is getting personaller!

I’ve begun this process as my dad’s family left Ukraine at the end of the 19th century and I’m nosy and would like to find out more. Not just to identify gene mutations or SNPs as I believe they’re called but to get in touch with my ‘roots’. This information can give you percentage likelihoods of getting certain diseases (if you ask your practitioner for that information to be revealed to you).

I figure knowledge is power and if I’m aware of potential problems I can head them off at the pass and reduce the possibility of that potential by how I live my life right now.

 Before I start to think about the results of any of this information coming back to me (the process takes a few months) I plan to eat even more fresh greens. Folate is pretty important at helping our bodies function at their best so, when your mum told you to eat your greens when you were little it seems she was talking some sense and perhaps we should have tucked in and shouldn’t have rolled our eyes so much?

alternative healthcare

engulfing“Right now, they [mspatients] are not getting the kind of information we as [health care] providers would like them to get,” Wray said.”

This is quoted from a Boston Globe article of the 11th September. ACTRIMS – ECTRIMS researchers were apparently concerned about the ‘perceptions’ of ms patients.

I’d like to know where would doctors and MS researchers present at the conference rather patients get information from?

Surely not them?

Are these the same groups of people who didn’t believe in the possibility of an overgrowth of candida albicans? (thinking of more than one old GP when i make this statement)?

The same people who throw antibiotics at a problem as a first line of defence? (thinking of an old GP when I make this statement) rather than further investigation of the problem. I appreciate GPs have little time per patient but perhaps we could consult a ‘project manager’ for our bodies or even be entrusted to be our own project managers?

We are perhaps the best people to be put in charge of enhancing our own health?

The same group of people who, along with most of the rest of us didn’t know the significance of a microbiota until we found out from various TED talks over the last few years and recently a BBC2 Horizon programme on allergies (I referred to one of the over 1,000,000 pages google finds on the subject in an earlier post?

The same people who thought stomach ulcers were caused by stress not an infection?

The same people who believe that what we eat can’t have as much effect on how we feel and function than their questionably effective pharmaceutical offerings? (thinking of an old neurologist when i make this statement).

The status quo can’t continue.

The image above comes from a collection of mine with the name Earth Abides, Ecclesiastes 1:4. It was the title of a 1949 American sci fi book my dad gave me by George R Stewart. The world’s population gets wiped out and civilisation goes about starting again amongst the remains of our current civilisation.

Looking back, to get an apocalyptic tale as I was on the cusp of becoming a teenager was very good. It taught me to question everything. The message I chose to take from the book was ‘nothing that lives on earth is forever but that’s ok because we can choose to adapt’ and the planet will continue.

Things seem to be changing and we now have architecture acknowledging the presence of and creating designs specifically to take advantage of omni present bacteria.

If we believe that the 20th century was all about stamping out pathogens and healthcare was involved in a mighty struggle between us and them (evil bacteria causing disease left right and centre). Then the 21st century shape of healthcare will be all about harnessing the power of these omnipresent beings to help us, the puny human.

Some question our faltering scientific progress in medicine (as an owner of a chronic condition one of those ‘some’ is me) and ask whether antibiotics represented the only noteworthy advance in medicine since William Harvey’s discovery of blood’s circulation in the body in the early 17thC. This discovery rather neatly yet arrogantly ignores the Ancient Chinese’ awareness of body systems (please see earlier post).

Perhaps I’m biased but I choose to firmly believe that asking questions and finding out answers can only be good for our brains.

I feel the image above still stands as a representation of all that we live amongst and stands as a fine illustration of the impermanence of man. This too shall pass could be an alternative title and probably, bacteria will continue, relentlessly, to play their part long after our petrol shops have gone!

Is feeling a bit better as good as a cure?

pathways

I remember when as youngsters who knew no better, we used to wave our inebriation like a badge of honour; happy happy days but not really suitable as a long term strategy!

I think a bit differently about life now and have different priorities.

Whilst I’m with Dylan Thomas on this one and all in favour of not going gently into that good night I don’t like the fight, struggle and battle analogies common with various types of illness. Why would you want to create further imbalance in your body than it obviously already has?

We’re here, let’s get invested into making life as good as it can be. We may as well investigate how we can make life a little better. To use a lottery saying and adapt it to life – We’ve got to be in it to win it.

Receiving a chronic diagnosis changes everything.

It can change everything in a number of ways depending on the choices we make:

We can choose to see the future as an everlasting dance with our own body.

we are after all, hopefully in this for the long haul so conserving energy isn’t the choice of a wimp rather the enightened individual.

Does the dusting need to be done as regularly as before?

Does it matter if the kitchen floor isn’t clean enough to eat off of?

Realising what’s important (and what isn’t important in life) somewhat focuses the mind. Listening to our bodies is something that might make our life a little easier. There’s at least one school of thought that puts unattended issues in your mind and the always interconnected body at the heart of later chronic disease. A recurring fungal infection is a sign that you’r body is not working optimally. Usually we coexist with a variety of parasites living in our body quite happily – it’s a beautifully functioning, symbiotic relationship – they help digest our food, make vitamins, form an immune response to foreign invaders and perform other vital services but if you have recurring bouts of athlete’s foot or UTIs for example, your immune system is not strong enough to be able to keep everything in balance.

If you don’t address this issue it can develop and eventually become something else after years of putting off doing something about it. Possibly an autoimmune disorder?

It’s worth listening to what our often ignored bodies are trying to tell us. People found here can help us sort through the unknowns about our health. They dig a little deeper than our GPs have time to.

In the spirit of paying attention to things to advantage ourselves I was finding out about the 9 circles of Hell in Dante’s Inferno. This goes into it in a little more detail. The 8th circle interested me most – fraud (which includes flatterers, sorcerers, seducers and liars). I can think of two professions that could fit the bill but which ones have you come into contact with that would fit right in to your circle of hell? Advertisers, marketeers and certain parts of the contemporary scientific process fit into mine!

My dissatisfaction with the scientific process may be related to the fact that not only has mainstream science not come up with a cure for ms but they also are not aware of things that could make life a little better. In the spirit of focusing on what’s important in life (making life a little better to be up there in the top 10) I am into my 2nd week of a candida cleanse (my eating habits have rarely been exemplary and I took antibiotics last year) I will post details soon. Acknowledging candida is just one part of getting on board with the existence of a microbiome.

Are doctors beginning to get it?

pleasing view of natureEverything is awesome! (apologies, I watched a movie yesterday, Lego related post to follow)

This piece of news came out on the anniversary of the start of the 2nd WW. One has no bearing on the other, I’m not big into coincidences and fate (I wanted to take this opportunity to let you know that even though I use a word later on in this post I don’t knit my own muesli or believe in numerology). That’s not to say they don’t hold worth for some people but I’m not one of them.

Nowadays I spend my time researching or more precisely, wading through online ‘cures for MS’. For the record, I don’t think those words sit well in a statement and am highly wary of anyone who tries to jam them into a sentence together.

I’ve been building up to a post that was to be asking ‘Why Doctors Don’t Get It’. In it I refer to the Aesop’s fable of the wind and sun competing to get a man’s coat. We all know that the persuasive heat of the sun was far more effective than the brute force of the North wind.

Seeing this particular application of research based on dampening the allergic response in folk with troublesome allergies we have a sign that medical professionals are getting it. They may no longer see the words MS and choose to research treatments that, you could argue, are akin to using sledgehammers to crack nuts. It feels like doctors/consultants/experts don’t especially consider the bodies that carry the condition they’re creating a treatment for.

Does fear of this condition perhaps lie at the heart of why it’s been considered a perfectly acceptable treatment option to wipe out a fairly essential part of a human’s functioning? We need our immune system to defend against the many external assaults a body faces every day. Or is it that Western science practitioners, like small children are using a mallet to hammer a square peg into a round hole rather than examine the qualities of either component?

AIDS drugs and cancer therapies have been suggested and offered as a way to address our brain’s apparently self destructive tendencies. Let’s rush instead shall we to pharmaceutically punish the MSpatient/EMO self harmer by offering an already confused brain Lemtrada/alemtuzamab (a recycled cancer drug).

There’s nothing much binary about the human body so why has it been, until this recent development, that research has involved switching things off and on again?

Doctors can be so much more than IT support workers dealing with squashy cabinets!

I used to howl at the moon In an earlier blog and there I pondered on the difference between Eastern and Western medical practice. Both types seem to deal with the human body very differently.

From what I’ve experienced and read Eastern medicine considers our wobbling sacks of bones and processes holistically. I hesitate to use that word because I know it gets laughed out of a Western doctor’s waiting room (this is the word I was talking about at the beginning of the post). As if treating symptoms without addressing why a thing is happening has been shown to be a terribly evolved way of approaching the human body… please take a look at an earlier post I’d written about acupuncture at the beginning of the year in response to a frankly arrogant medical professional’s somewhat childish assessment of a science/methodology he’s chosen not to find out about. Like Western medicine has all the answers?

Personalised help for MS and other long term conditions?

23andME

So, in the post “eat your greens” I mention the process I’ve just begun which involved sending some spit over the Atlantic to have my DNA sequenced by these folk. I had some reservations about finding out something in my genetic code that might be lurking in the future but, knowledge is power. I might be worried about how this data could be used if it fell into the wrong hands but having an ms diagnosis in the here and now has already made me dead to insurance companies. I’m perhaps being pretty naive not making myself aware of the details of unforeseen data splashing horrors but I prefer not to spend time thinking how awful life could be.

So, being an impetuous child I went ahead anyway!

This is lifted from wikipedia‘s explanation of SNPs “Variations in the DNA sequences of humans can affect how humans develop diseases and respond to pathogenschemicalsdrugsvaccines, and other agents. SNPs are also critical for personalized medicine.[5]

For folk interested in family ancestry this sort of data could be a boon for identifying where great, great auntie Val has most ancestors. So many possible starts of stories!

The flipside of this personalisation is that genes don’t represent ‘set in stone’ certainties. A percentage chance is expressed for which conditions your body could be becoming most primed for. Epigenetics is becoming a fascinating topic for speculation and research. It studies how we interact with our environments and how our grandparents did also. I think I’ve mentioned the 2ndWW dutch famine research elsewhere?

Instead with 23and me sequenced data, we have information to act on…stop smoking.. eat more veg… (which is pretty good advice for most people) but supplement specific vitamins and minerals because certain SNiPs are weak in your sequence and can’t do a certain type of processing which might help us get a bit of extra energy for example. I mentioned methylation in another post, it refers to how our bodies allow the process of making energy in all our cells. How we treat our bodies is far more defining than some paperwork as this particular article spells out.

I feel a need to do these things (or perhaps it’s straightforward desire – a coping mechanism if you will?) because no one cares about my health and wellbeing as much as me. Certain medical professionals care about the condition they’ve become ‘experts’ in but only in their specific research area. How a body functions doesn’t seem to concern say, a neurologist. I feel invested enough to look at all sorts of strategies and specialisms to try and get my body working a little better and I don’t have any affiliations that might stop me looking in a range of areas.

This is why I’m interested in the vascular dimension to a number of chronic conditions. Sometimes, it doesn’t feel like there’s enough curiosity in science. I believe sometimes healthcare professionals could do with getting a bit of distance from a disease shaped problem to get a chance at seeing the bigger picture in individuals.

we need a new, functional way


DSC00804

This post will mainly be about how the folk in white coats aren’t always going to be aware of the best direction for us to go in so we’d best make ourselves aware of our options. This was in the news in July. It questions how equipped doctors are for reading results of tests they’ve suggested for their patients and their ability to assess their patient’s risk in choosing action or inaction in light of them.

Apart from a small minority of adult patients most of us are compliant with what our healthcare providers suggest. Although the internet has made it possible for that minority who have decided to investigate their own health and treat themselves to communicate with one another and draw support from their ‘go it alone’ peers.

The men in white coats are the experts – they’re trained in this stuff  ‘all I know is my body isn’t working as I’d like it to – they’re expert, they MUST know more than me?’

We need only consider Maslow’s Hierarchy of Needs to understand why and how this situation arises. When one of our foundations is rocked (health) we revert to feeling as we did as a child; surrounded by grownups who obviously know more than us. We’ll happily listen to any medical professional in the strong hope that they are the experts we’ve been brought up to believe live in those white coats. When they’re on the scene we can safely be the child that lets the grownups make decisions on their behalf.

Experts don’t appear to be in ready supply for a range of chronic conditions. The clue is in the name. These conditions are considered chronic/long term because no one has yet found a cure.

I’ve just been sent a link to this site which highlights the foods we’ve been taught to believe are bad for us in reality (and moderation) are in fact pretty good for us.

Times they are a changing!

Functional medicine works with how our bodies are right now. Here is a site that takes a functional approach to exercise. For people who are short on energy we choose to conserve it for the important things (exercise, let’s be honest, is rarely one of those things). Making best use of remaining energy is the smart person’s choice. we must also keep in the back of our mind that as we move less we will become less able to move.

Medical professionals aren’t at present set up to look at the body’s fuel: out of approximately 7 year’s worth of gp training they spend not much more than a week on nutrition!

There are some out there like NHS Dr Marios Hadjivassiliou who runs the ataxia clinic in Sheffield who acknowledge that the fuel we run our bodies with has an effect on our performance. He cites gluten as a problem protein for the body to digest and it’s ill effects have the potential to cause trouble in more than just the digestive tract (celiac disease).

There are enough suggestions of nutritional approaches all over the web so I’ll point you toward a resource that has links to reliable research into alternative ways of treating a poorly functioning body.

 I’ll use cognitive dysfunction to account for the scattered nature of this post. All the links on this page really go to show that healthcare is not a binary thing. there isn’t one way to make things better. it sounds horrifically West Coast but Instead we need to love ourselves and those around us enough to want to find ways of making life better for ourselves.

This is a frightening proposition, but only at first. Further into your selfcare journey you’ll come across posts and sites perhaps like this one and be able to critically think about the worth of what’s being suggested!

 

Happy travels!

 

Learning for life

3434forblogdogs

Until we have a need to access professionals who can ‘fix’ us, healthcare’s all a bit fuzzy and indistinct in our minds. We’re built to not spend time on things that aren’t immediately concerning to our continued existence. We imagine if at all, everything will be working in our favour. Caregivers at all levels from consultants to care assistants are there primarily for our benefit. This article from the American Academy of Neurology explains why that may not always be the case.

It’s heartening to see this acknowledgement from a trusted player in the field. Some of the ground troops of various chronic conditions have had questions along these lines for a good few years.

One of our foundations in life is no longer the reliable anchor we once assumed it was. We have spent perhaps decades taking our health for granted. We are now calling on the skills of others to help us however they see fit.

We can choose to take a passive role in our functioning day-to-day but we are now given the opportunity to think differently by learning lots of new stuff. A lot of stuff we assumed was safe as houses we have now learnt, isn’t. Post 2008, is not the time or place to question that particular truism.

Here is one TED talk that highlights the vested interests involved in developed nations’ unquestionable truths about human nutrition.

Reading for ourselves is different now we’re not at school (honestly). For a start, we don’t have to do any of it if we don’t want to. We don’t have to hand our books in to be marked. No one is asking us to do it, we are doing it for the benefit of ourselves.

Doing this sort of activity luckily, is very good for our brains. In this 11 minute talk, Sandra Chapman PhD highlights how our brains relish and thrive on feeling challenged. When given something to get its teeth into our brain will do its best to rise to that challenge and become smarter and more effective which ultimately ends up benefitting us (Sudoku it seems isn’t the answer).

Here is another TED talk giving a refreshing, scientifically backed up way to look at how to change behaviour. It’s not suggested we rely on willpower rather, research has been undertaken to look into methods which allow us to be more aware of ourselves. In it Zoe Chance, a tutor at Yale University in the US lists the 5 qualities an activity needs to possess to have a chance at becoming habit forming. We are all works in progress so if we want to change something about ourselves, we can.

TED talks are great for taking (usually) less than half an hour of our life to tell us stuff we didn’t know and may well help make life a little better. I have a link to this particular TED talk somewhere else on this site. It’s such an important and relatively easily addressed area of our lives. Getting better sleep to reap a better experience of life is within most of our grasps. It all depends on how much we want it.

 

Zietgeist? Shine a light!

 

 

porthole in a decompression chamber
room with a view


This post will be about issues brought up in Face the Facts on wednesday the 16th July.


The radio show was talking about the how parents of children with a chronic condition were feeling compelled to pay for treatment that might benefit their autistic children as that particular chronic condition, in their opinion was falling through the NHS’s net.

I appreciate there are a number of folk that say autism IS curable through dietary strategies (I’m hoping one of them will do a guest post on here in the future) but for the moment we’ll call cases of autism manageable at best. Parents feel they have no choice but to look for alternatives to the standard NHS care offered to them.


This is a copy of my letter to the face the facts show:

Hello, I have MS (another chronic condition that is chronically underfunded by the NHS). 
An interesting report from the Commonwealth Fund came out a matter of weeks ago (on an earlier post ‘The NHS is Tiptop… and not‘). In it a US think tank (with an axe to grind about the US’s aversion to adopting universal healthcare perhaps?) released an analysis on the state of Western healthcare, the NHS came out on top with the US spending the most and coming in bottom on nearly all measurements. The UK was bottom of the list of ten for chronic conditions.

 

I have been taking hyperbaric O2 at my local MS Therapy Centre for the last three years, this sh*t works. I’m not cured but it helps bladder and fatigue issues and, as an added extra, a session in the tank lifts my mood (Look up effects of chronic, low level hypoxia).
It’s like the difference between going out on a blue sky day compared to a grey day – you can’t measure the difference but there is one. MS Therapy Centres might become another subject for John Waite’s Face the Facts?
If he’d like to look into a therapy that is providing benefits to a range of conditions including stroke I’d be happy to be a first point of contact as a trustee for my local centre. They can also be contacted centrally here.

We are a network of 50 or so independent charities around the country that were set up by people with MS for people with MS in the early 80s to initially provide this therapy in particular. Now many other therapies are available to  more than just those with MS.
They set this up before the internet and JustGiving! that’s a story right there, isn’t it?
MS has a similar set of symptoms to stroke (stroke’s vascular aspect takes an acute form) while MS has been described as a slow motion stroke and shining a different type of light it has also been suggested we rebrand MS as a form of dementia (the brain atrophy we experience from early on in the disease process is the same brain shrinkage seen in the elderly)

 

I’ve been reading and trying lots over the past 20 years to try and reduce some of the symptoms of this condition. I think I’ve learnt what NOT to pay too much attention to but I’m always interested in hearing about more stuff.