Learning for life


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.

Homemade Fermented Veg

Does having Ukrainian great grandparents mean I have homemade fermented veg in my blood?

I don’t know but it is a really easy process, becoming a little bit organised has been one of its happy side effects.

A search on homemade fermented vegetables will deliver many youtube clips on how to make sauerkraut, kimchi or get pickling to your heart’s content. They can show you better than I can describe the process of making our own, cheap alternative to probiotics. A lot of them show making industrial quantities but have a go yourself with smaller amounts first to see if it’s a habit that you want to get into.

The reason I started making my own sauerkraut apart from reading about its benefits online was it keeps you regular (this doesn’t present a problem for people who have delightful insides you could set your clock by but, if you haven’t got regularity you’ll know how miserable it can be and you’ll have a go at anything that might help!) and it looked a lot cheaper than regular probiotic supplementation.


I use the biggest, widest necked glass jars i can get (big jars of black olives from the supermarket have a good shape)

Fairly finely chop/shred

  • A red cabbage (peel off the outer two leaves before you start chopping and put to one side)
  • Bulb or two of fennel
  • 2 or 3 sticks of celery

Any veg that’s quite firm and holds a lot of water (but not potatoes) I’ve tried mushrooms and lettuce and courgette but they were too soft/water filled, I think and went to mush quickly

I find white cabbage a bit too sulphurous,

Leek gives a really zingy taste but after a week or two squashed in a jar outside the fridge its sulphurous smell is not for the fainthearted!

  • Beetroot (grated or sliced thinly)
  • Grated carrot is something to try chucking in: i think it and beetroot might be quite high in sugars (I’m guessing this is why they turned to a sticky mush on their own?) so probably they shouldn’t make up the majority of the chopped veg mix.
  • a bit of grated ginger or chopped fresh chilli adds another dimension!

Once the veg is chopped I use a big, ceramic cake mixing bowl and scatter over a good teaspoon of seasalt or Himalayan rock salt  (both hold more trace minerals which is a good thing apparently and are much better than table salt I’m told. The salt will stop nasties proliferating and draw water out of the veg. Perhaps also a teaspoon of caraway seeds (if you like that sort of thing)

After 24 hours of the veg sitting weighted down (I’ve inherited a big pestle and mortar but before that I was using bags of water which are quite heavy) it’s time to pack the jars up to an inch below the top.

Various places online suggest treating the jars as you would if you were making jam  ie putting the empty jars in boiling water or in a hot oven to kill off germs I did this once but, being one for the easier life I figured we’re after bacteria why does it matter if these jars are super, squeaky clean?

It is worth giving the jars a good wash tho!

Remember the outer cabbage leaves you put to one side?

Tear the leaves up to fit comfortably over the top of the veg and tuck the sides down the insides of the jar. You want to try and keep everything below the eventual waterline (mould can’t grow underwater). I’ve had a couple of furry tops of jars now and then and that’s when stuff has risen during fermentation and stuck out above the water. I’ve gotten rid of the first couple of inches of contents and the bottom half of the jar has been fine. You can gauge the consistency of the veg for yourself and decide when it looks like you might want to try eating it… or throwing it out!

It should taste sour (the bacteria already present on the veg make acetic acid) but the veg should still keep a crunch and should not go slimy.

My partner is far less gung ho than me when it comes to eating ‘off’ food so I appreciate this might not be everyone’s cup of tea but the only thing you can lose is a bit of time* so, why not give it a try?

Most of take advantage of the fermentation process when we eat, cheese, salami or yoghurt and drink wine or beer

In cooler weather (not necessary in the warmth of summer) you can try splitting up a probiotic capsule and mix it with water. I’ve used a kefir starter which has bacteria in as does VSL#3 the NHS approved probiotic (well, my mum got a prescription for it a while back). You’re going to top up to half an inch below the top of the tightly packed, veg filled jar (between half and one pint of water as a rough guide). I use filter water and the liquid from the last jar (this liquor also makes interesting vinegar for salad dressing). I imagine tap’d be fine too.

I get two jars at a time or thereabouts from a head of cabbage and assorted extra veg.

The addition of friendly bacteria from a capsule gets the fermentation process underway and the jars could be ready to eat in less than a month. Don’t forget to hold them in something that will catch any drips. We’ve created a living thing so the jars will breathe and ooze for want of a better word!

The benefits of cruciferous veg coupled with fermented food and the smug feeling we get for homemaking a ‘thing’ makes this activity worthwhile, for me. I’ve seen suggestions out there to not eat this straight from the jar as we harbour lots of pathogenic bacteria in our mouths that we probably don’t want to multiply. Keep the jar in the fridge once opened (it will still ferment but at a much slower rate).

I try to have at least a couple ‘brewing’ in the cupboard under the stairs at  at any one time.

*Go gently at this new way of eating veg, it’s undoubtedly good for us (please see my candida posts to rule out if you are one of the people that should avoid too much fermented food until you’ve rebalanced your gut bacteria). The microbes in our tums may need a little time to get used to all their new friends.

A wider group of friends for your gut microbiota can have positive effects on the body as a whole but especially so for the brain (microbes themselves are microbiota whereas microbiome describes their genes)

mainstream and less so

night scene of a Brooklyn sidewalk

I took this image when I was getting a form of angioplasty to counter some of the effects of MS in 2012. It hasn’t stopped the disease but my heat intolerance and brain fog is still vastly reduced two years later. I don’t believe the auto-immune theory answers all the questions that MS poses.

The auto immune theory lies at the base of mainstream, accepted MS treatments (see below for details and links on most).

An auto-immune disorder arises when the immune system, the body’s bouncers get confused, go a bit postal and start attacking the body’s own cells. In the case of MS the bodyguards appear to start beating up the nerves’ protective coating (myelin). There’s still big questions about proof that this is what’s happening in MS. MS auto-immune and/or neuro degenerative?

In the vascular model, researchers hypothesize that these bouncers are merely sweeping up at the end of a particularly rowdy night rather than attacking these cells themselves. It is theorized the damage was a side effect of vascular disruption.

The autoimmune model believes that these bodyguards go rogue and kill perfectly healthy and functioning cells. They can no longer distinguish between foreign cells (whose presence would rightly cause an immune response) and self.

The alternative MS theory has been explained most recently by Paulo Zamboni of Italy. He considers MS to be mostly a vascular disorder and a name for this disorder is Chronic Cerebro Spinal Vascular Insufficiency (CCSVI). There are a number of people who don’t agree with the theory that has its roots in the 19th century.

I felt the theory was worth further exploration and went to Brooklyn to get someone else to explore my vasculature for me.

The standard medical approach to multiple sclerosis includes disease modifying therapies, DMTs that don’t really address symptoms as such and require quite a leap of faith in your belief of your caregiver’s ability to alter the course of your disease. That could encompass having a belief in your yoga teacher as much as the men in white coats.

Having some sort of belief in something appears to be good for your brain to get on with its own healing (our brains consist of about 7% stem cells that could, in theory replace our own damaged myelin. Choosing to believe in something I don’t believe is silly.

MS medical treatments started with Copaxone, Rebif, Avonex Beta-Seron (fondly referred to as the CRAB drugs by past patients) which form the cornerstone of accepted MS modification. These guys have a pretty exhaustive list of some treatments available to us. The first of them was released in the US in the early 1990s and the fair prescribing of them brought about the creation of NICE (National Institute for Clinical Excellence seems to have changed its name once or twice and now stand for NIHCE… Health and Care Excellence rather than Clinical.

Newer treatments include Tysabri which has a very chequered history including being withdrawn from market and then brought back and still being responsible for some of its users contracting another brain disease entirely, PML!

Campath or to give it it’s newer name Alemtuzamab works by knocking out certain proteins in the patient’s immune system. This therapy was first used to treat cancer – decide carefully about the risks and benefits attached to taking any treatment but perhaps especially a recycled cancer drug?

Alternative treatments I’ve tried include hyperbaric oxygen therapy HBO, treating CCSVI, physiotherapy, Feldenkrais Method, Shiatsu, Reflexology, diet modification (gluten, dairy and sugar free), as wide a range of exercise as is possible, mindfulness, MBSR emotional freedom technique EFT, vitamin and mineral supplementation, Low Dose Naltrexone (LDN), Inclined Bed Therapy (IBT), and are discussed further on other pages on the site.

I also take cannabis using a vaporiser as it seems if big pharma are trying to replicate the real thing with Sativex why don’t I just get hold of some of the real thing?

I feel having a chronic condition calls for becoming an active participant in our own health rather than sitting back and taking what’s offered.

Alternatives are the best way to go!

Neurologists tell us that MS is an auto-immune disorder. We know people with MS have scarring in the brain. lots of individual people say the scarring in the brain is down to all sorts of things and auto-immune issues don’t really come into it. In truth, in over 150 years of ms having a name researchers still can’t say what causes the condition. On the whole I think it helps save my sanity not to explore how this situation has arisen. I don’t believe all these researchers are stupid so why have their efforts been so woefully unfocused so far?

“Follow the money” is usually fairly good advice when investigating most gnarly questions and I don’t imagine it’s any different here. But this thought pattern doesn’t get me anywhere so I won’t continue expending energy on it.

The closest anyone can come to defining MS is calling it multi-factorial, some sort of a combination of disordered immune activity, congenital vascular defects, reactions to infectious agents in the air we breathe and the food we eat, viral triggers and… the list goes on!

Whatever may bring it about, MS can be considered a disease of inflammation in the brain.

Uncertainty seems to be all we can be certain about with MS but at least people are looking… in a variety of places.

Since the 1830s a vein running through the centre of lesions in the brain has been noted in post mortem studies of MS’d brains. This suggests MS is a vascular disorder where cerebral blood flow is restricted or at the very least not optimal for a happily functioning brain.

What I have chosen to take from this somewhat muddy, unresolved and frankly disappointing situation of indefinite research that seems to take us no further along a treatment route (except perhaps interminable antibiotic protocols) is that there are many other things I can do to try and make my life a little better.

It took me a while to reach this point and I still sometimes howl at the moon at the injustice of less than useful MS research. But if there’s one thing MS has given me it’s an understanding that life isn’t fair so, nowadays I focus on what I can change around me.

  • Exercise of any sort possible every single day. We’re not talking team sports although go for your life if that’s your bag.
  • I’m pleased when I can do either press ups on the stairs, standing for any length of time, moving limbs generally,
  • I think I’ve mentioned the rebounder elsewhere
  • Trying to increase how long I can hold the plank for,
  • some Pilates movements – building a core is helping me walk it’s at the foundation of all movement,
  • Exercise bike at various resistances and dancing (not in front of anyone though!)

I’d imagine dancing would be good exercise as it involves controlled, coordinated movement in step with someone else. Table tennis is supposed to be a good game for involving brain and limbs and eyes and asking them to work in concert.

I’m hoping increased muscles generally and in the trunk particularly will contribute to keeping walking. Also, further exertion for muscles would demand extra bloodflow which should eventually increase circulation around the brain, I’m choosing to believe.

The Art of Medicine

T6430parallelbarsThis post takes in considerations of end of life and midlife care. I believe it’s not until we can comfortably consider life and death as part of the same thing (that’s going to come to us all) that we’ll never truly do the best for people who need our help. Think Hakuna Matata and the circle of life if it makes it any easier!

We’ve had quite a time to think of medicine purely in scientific terms but a good doctor is so much more than a trained health professional enthusiastically dishing out antibiotics.

“Andrea Williams, the chief executive of the Christian lobby group Christian Concern, led criticism of Ashton. “To say that it’s care for a doctor to kill is … a complete denial of their Hippocratic oath,” she said. “A doctor is there to care for the patient, not to kill the patient. Midwives joyfully bring life into the world. It’s not a doctor’s place to play God at the end of life.”

The words above were in an article in the Guardian on recent pronouncements of retired health professional, Prof John Ashton. He has held a number of positions advising on the role of medicine in our society to governments of the day.

I think Ms William’s stance on the meaning of the Hippocratic Oath perhaps accounts for why the NHS believe that they’re winning so long as their patients aren’t dying.

Life is more than a binary process: either being alive or dead.

“First do no harm” is the part of the Oath that got spouted at me when i spoke with either GPs or my neurologist about the theory of CCSVI. It believes that narrowed veins in and around the head lead to a slowing down of blood and a resulting de-oxygenation of blood feeding the brain. This lowered O2 can lead to slowed mental processes, lowered mental acuity and low mood.

If we acknowledge that potentially reversing this process is within a medical professional’s ability to reduce this activity then are these professionals not actively doing harm in doing nothing?

How did coronary angioplasty ever get past the First, do no Harm rule for folk suffering from narrowed arteries around the heart? This rule was flouted because it could be seen by a medical professional in the late 70s treating someone with a heart attack that widening the tubes around the patient’s heart would give some relief to the effects of angina even if the procedure did involve breaking his skin at the top of the thigh.

It’s apparently not considered a major incision so that takes care of that flouting then!

Back to Ms Williams’ feelings: I believe it’s the healthy person’s fear that lies at the heart of extending life at any cost. Quality of Life is more important to the patient than it is to anyone around them.

Even the best, most caring nurses who have chosen the vocation of nursing which is all about the compassionate care of others can’t care about their patient’s wellbeing more than the patients themselves.

The ill live in their body 24/7. Their experience of their body doesn’t involve being accessible by means of an emergency buzzer or cord. Facing up to the quality of that life forces us to face our own mortality. I believe it’s cowardice that’s helped us to this predicament.

An unwillingness to face our own mortality perhaps explains why we seem to put an uncomfortably high proportion of the total NHS spend toward paying for drugs rather than ensure more patients have a comfortable death?

I’ve not checked out the statistics but it seems once we face up to what’s going to come to us all we can better prepare for the ones facing the inevitable, sooner.

This clip from Canadian TV was also at the back of head whilst writing this post