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!

 

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.

NHS is tiptop… and not!

one step at a time
light at the end of the stair


This just released: The UK’s National Health Service is tiptop and beats many other nations’ healthcare of and for its citizens. This is fantastic news but not necessarily surprising that we do better than the US who spends more on its health service and still turns people away at their hospital door with no offer of care.

The Commonwealth Fund, a Washington-based foundation which is respected around the world came to its conclusions after studying 11 healthcare systems from around the developed world. Only New Zealand (£1876) spent less per citizen than the UK (£2,008). The US spent just over £5000 per capita.

One area the NHS features almost last in the rankings is care of the chronically ill.

This may not come as a surprise to anyone with a chronic condition in the UK!

The NHS are winning as long as we, its citizens aren’t dying.

The quality of those lives being lived aren’t really taken into consideration so looking after yourself is sometimes the safest or only position to take. Finding alternatives to side effect laden pharmaceutical treatments which often offer only marginal benefits is what 21st century healthcare has begun to be about.

A few years ago I took a self-management course in ‘Long term Health Conditions’ with EPPCIC which I found invaluable. My fellow students on the 6 week course of 2 and a half hours a week included an MS patient, a lady with COPD, someone with type II diabetes and  a selection of rheumatism and arthritises. Attending the course is normally arranged by a gp but it was also possible to refer yourself.

I’ve found taking control of an aspect of my life to be really (apologies in advance) empowering.

I now attend and have become a trustee of the Huntingdon, Peterborough and Cambridge MS Therapy Centre. I get sessions in their hyperbaric chamber and breathe oxygen for an hour. Breathing 100% O2 at pressure saturates the tissues in the body which brings a host of benefits. Australia and the USA are aware of its healing capabilities and their athletes and sportsmen take some oxygen sessions if they have a broken limb and want to speed its recovery or just to boost their performance.

Finding any small benefit often using an alternativce therapy is a huge win for anyone with a chronic condition.

Decisions for the The Long Game

DSC_2514As an owner of a chronic condition things could go better if we think of life a little differently. I don’t want to be at an increased risk of getting Alzheimers and this strategy could be a way to reduce that risk.

One thing that we definitely do have control of is what we choose to eat and not eat. There are a host of folk online who have thoughts about what, when, where, how and why we should make certain food decisions. I very much hope this site doesn’t slot into that category, as somewhere that uses the word ‘should’ alot (I’m trying not to use it on myself) so, please let me know if there’s any whiff of the preach going on here!

I spend quite a lot of time online and it’s not always cats playing pianos, although there is a bit of that. What we choose to fuel ourselves with can’t NOT have an effect on our output.

When we have a certain amount of degeneration on the cards any and all slight wins are vital but “my leg doesn’t drag as much” sounds very like a lack of success to the fit and healthy.

There’s always going to be a mismatch between the outlook of both groups of people but if you can tread a path through what consultants say and what you feel then you’re winning!

Check back to see what’s caught my eye recently (this is just as likely to be something about cats and pianos as it is a recent study on nutrition or exercise).