Tag: wellbeing

How’s your community?

This post is about a question I’ve had for quite a long time.

I started wondering about a week before I broke my foot. Two metatarsals as it turned out the next morning at Accident and Emergency made a truly memorable definitive almost, cracking sound.

Instead of earning the injury smothered in glory and basking in shades of heroism on a field of play somewhere, I misjudged the last step at the bottom of a flight of stairs… in my own home.

I was distracted by something (you’ve perhaps noticed that likelihood from the breadth of previous posts). I choose to keep reminding myself fuzzy thinking and unclarified thought processes happen even to people without the cognitive issues MS can bring.

…Let’s get back to a topic in this post:

At the end of 2013 as an owner of a long term condition and a potential beneficiary of future medical research, I was invited to take a tour around a stem cell lab in Cambridge. The mice whose brains provide said cells are looked after incredibly well. Good food (I assume although I didn’t taste it), fresh air and calming, soothing treatment right up until the point of execution.

Even before a trial can start the three Rs of animal research must be asked before any vivisection can take place:

  • Replace the use of animals with alternative techniques, or avoid the use of animals altogether.
  • Reduce the number of animals used to a minimum, to obtain information from fewer animals or more information from the same number of animals.
  • Refine the way experiments are carried out, to make sure animals suffer as little as possible. This includes better housing and improvements to procedures which minimise pain and suffering and/or improve animal welfare.

(Taken from Understanding Animal Research (the organisors of the event at one of Cambridge University’s colleges).

 

community

Their physical condition was being well taken care of but the thing that might have distracted me from the bottom step before I met it sooner than expected, was curiosity and concern about the animals’ wellbeing as I knew their health was well catered for.

The folk working in the lab were very pleased with their new consignment of individually air conditioned living quarters: each mouse’s bedsit was a bit bigger than the size of a shoebox. Each animal was effectively in solitary confinement and had a layer of clear, climate controlled air and at least 2 sheets of rigid plastic between it and its neighbour.

It’s hard not to draw a human analogy as these experiments are being undertaken because the mice are similar to us. The life of a mouse is worth less than that of a large primate in animal research circles; The study has gone through the three Rs so human and mouse brains must be similar enough to be worthy of taking animals’ lives.

These mice didn’t have any social interaction or while we’re thinking about it, access to exercise.

A lab assistant had been telling me of playing the radio 24/7 so the cortisol levels of the mice didn’t spike in response to stray loud noises (which were now being muffled by local radio). Uneven hormone levels could introduce an unwanted variable into the studies, making the end results at best, unreliable.

whilst  the  mice seemed to be well cared for during their shortened lives their care seemed to fall short (in the eyes of this non animal biologist)

We, as humans are advised to get some movement into our daily lives. Our bodies, we’re told, will function all the better for it. Without movement our bodies will atrophy and succumb to all manner of lifestyle diseases. Sarcopenia (muscle loss) we’re told isn’t an inevitability of growing old. Our brains will also suffer from slowed cerebral bloodflow brought on by reduced physical activity.

It’s suggested we cultivate human interaction in our lives and be present in our community. Study after study show survival rates  and life expectancy decline with increasing isolation.

The mere extension of life is no measure or indication of the quality of that life but our experience of life becomes richer in company… even if it’s only to give us the chance to grumble about others: we NEED others in our lives!

To this end I am setting up a public meeting to listen and talk with and to our community about itself.

I’m not entirely sure what the take home from this post is other than don’t be mistaken for a mouse, get as much movement as you can and speak to people on whatever platform you can. Reading this online you have access to a computer; search for a special interest or support group if it’s tricky to get out physically and meet up – no matter what our situation there’s bound to be someone else in our shoes that’s set up a group for people like us (fellow human beings).

Seek out connection, the quality and length of our lives a bit depends on it!

Another post will focus on how our microbiome, made up in part by the communities of bacteria in our bodies that help digest our food and produce happy brain chemicals also need to be paid attention to. How can we eat better to help keep them, and us, happy and functioning as best we can?

This blog is about finding ways for everyone to feel a little bit better.

Thanks for joining in, it would be great to hear your thoughts on some of the issues covered in this post.

 

 

Improving Prognosis?

The image of ivy is from my back garden and illustrates one of the few things that truly thrive there.

NIHCE have issued guidelines to address which treatments might be worth the NHS providing for MS patients. Aside from the disease activity going on in our brains we have similar symptoms to many other chronic conditions. Some of those symptoms are brought on by our bodies becoming increasingly inactive due to deterioration in our brains. It’s even been cheerily suggested by a London research establishment MS could be rebranded as a form of dementia. With this in mind I thought I’d share a link I was sent that was made with seniors in mind but could be useful for anyone that doesn’t move as much as they used to.

  • NIHCE have suggested no longer financing injections of B12 to try and reduce fatigue (unfortunately, I’ve never been able to get hold of any through any number of GPs) but perhaps with more people asking for some basic maintenance strategies from their GP things might change?
  • Vitamin D supplementation is involved in many processes carried out in the body every day and helps regulate the body’s own immune activity. it might be wise to address both of these deficiencies in the general public aswell. A GP can carry out this test.
  • On the pharmaceutical side NIHCE would also prefer not to pay for Fampridine and Sativex. There wasn’t enough evidence to show statistically significant efficacy for all four supplementation approaches.

ivy up close

News of the Commonweath Fund’s conclusions about the brilliance of the NHS in a global league table of developed nation’s healthcare systems (as long as you don’t have a long term condition) I’ve mentioned in another post. The NIHCE use all sorts of equations and algorithms including weighing up loss of tax earnings for the country if these citizens can no longer earn and contribute. Perhaps  the measure for the wellbeing of patients with long term health conditions needs to be adjusted?

I’m conflicted about withdrawing a therapy that has worth for some people but then I remember that the NHS doesn’t have bottomless pockets and whilst some people are missing out on marginally increased walking speeds, baby units and end of life care could perhaps benefit from the spare cash? I’ll still be buying my own supplements even if it doesn’t clearly contribute to improving prognosis  on the NIHCE scale of improvement as I’m choosing to believe when their effects are all added up, these therapies are worth applying to help keep my body working as best it can. I think this outlook involving positive thinking may bring its own benefits.

A UK MS researcher agreed that good things appear to happen during O2 therapy after being asked for his opinion on a study on this website where Israeli long term stroke patients found new brain cell growth/synaptogenesis after receiving intensive O2 therapy in a decompression chamber. There are things we can do for ourselves that might help a little. I appreciate this isn’t a very rock and roll closing statement but it seems we, as owners of chronic conditions are in charge of improving our prognosis.

Simple strategies for living well

Take a piece of string, measure your height with it and fold it in half, does it fit around your waist?

Waist to height measurement is a pretty good indicator of whether you really need that extra helping of… cake/pie/favourite foodstuff!

A balanced diet is made up (thanks to Paul Chek for this simplification) of food with eyes (protein and fats) and food with no eyes (carbohydrates). Avocados and nuts are exceptions to that rule but generally vegetables growing above ground like leafy greens will be less starchy than vegetables grown below ground: potatoes, sweet potato, beetroot, parsnips and carrots to name a few.

Why does all this matter?

There are a growing number of people that believe the gut is at the heart of most disease. Hippocrates got there first over two thousand years ago but a growing number of people alive today are also questioning the quality of the food we eat nowadays and are looking for simpler/less procesed foods to eat. Stuff that our bodies have evolved to digest over multiple dozens of millennia.

There are many different versions of the ‘Just Eat Real Food‘ sentiment. Eat food, not too much and mostly plants is the simple guideline given by journalist Michael Pollan in his book In Defence of Foods.

Food = Epigenetic information. Which is a new way to think of our morning break fast.

Every piece of food we eat ‘talks to’ the cells in our body. These conversations can shape how our bodies continue to exist in their environment. I think but am not fully read up on the research yet, that what we eat over time can impact how our bodies respond to everything around us. And our decendants!

Epigenetics is a fascinating area of research: A 2nd WW dutch famine had repercussions for the grandchildren of those who lived through it. Our DNA forms the building blocks of who we are but those building blocks can be shaped by the world around us, too.

This nutrition lark seems to be far from straightforward!

I attended an online summit called the Evolution of Medicine at the end of September 2014. In it a number of functional medicine experts and enlightened ‘regular’ doctors were interviewed and issues were identified that needed to and were beginning to change in mainstream medicine.

We have a slew of chronic disease – much of it could be considered to be mediated by the way we live. Type II diabetes is better dealt with by addressing what you eat and how you move now rather than waiting for a profoundly reduced insulin response to turn into heart disease, stroke, nerve damage, wonky eyes (my wording)… the list goes on.

We eat a diet so far removed from what our bodies have been designed to cope with, no wonder they’re ‘slipping up’ and creating disease in us. It’s not just GM foods that could be storing up trouble for us and our children. Food is just one aspect of how we can make our lives a little better.

Small changes to how and how much we move can have surprisingly satisfying results. Getting outside and going for a walk every day is good for the soul as well as our heart and lungs. I’ve been performing my own version of HIIT (high intensity interval training) on my exercise bike. I can’t walk very far and have a wheelchair for events that call for more walking than say, getting round a supermarket with a trolley to hold onto so it’s not often that I can achieve a change in my heart rate.

There are a wide variety of websites I visit and gather what I hope is useful information to me and I assume others including a number of strands of research from around the world. Change in my body (including not getting out of breath so quickly) seems to be happening… slowly but I think getting the heart rate up must get more blood pumping round the body and that includes the brain so, a handful of 30 second bursts on the static bike every other day with the resistance turned up is giving my brain a treat. It also has a happy side effect of warming perpetually cold hands and feet!

To a continually pumping heart the brain is just another extremity (like hands and feet) that the pressure and circulation doesn’t always reach. Gravity works against the brain here, unfortunately.

Always low blood pressure can be as problematic as high BP resulting in fatigue perhaps partly because the brain isn’t getting enough glucose or oxygen to function optimally.

I read this in a fascinating book Why Isn’t My Brain Working by Datis Kharrazian. He has used a similar functional approach to identify strategies to improve an underperforming thyroid.

It’s always a good idea to get an MOT from your gp to check that your body can cope with the changes you’d be asking of it with a new exercise regime. I never used to be much of an exercise person but I was also a smoker as a youngster so i wasn’t really caring what my body may have been trying to tell me!

Small things can make a difference and some simple strategies have got to be worth a go, no?

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.

homemade

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)