deezll, Author at Chronic Alternatives • Page 7 of 7

Inflammation? Oohh Matron!

garlic's good for you. — garlic has many and varied benefits not just its vampiric connections!

ms* was described as an autoimmune disorder on wikipedia and then a few years ago it was changed to an inflammatory disease. I’m not holding wikipedia up as the fount of all knowledge but yes ms, parkinsons and alzheimers all have a degree of neurodegeneration perhaps brought on by swelling in the brain (not necessarily of the entire brain).

Our lesions, if they were visible would look like swollen, red areas you’d get around a cut on your skin. This swelling is the body’s ‘soldiers’ standing about and making sure no infection takes hold. Glial cells provide support to neurons which send and receive the messages that control our body’s functioning.

There are four members of the glial family: microglia, astrocytes, myelin and oligodendrocytes which create a structural framework for neurons, they maintain homoeostasis and offer protection from harmful bacteria and drugs. They either clear up damaged cells or, having gone rogue they mistakenly nibble bits off myelin (like pipe lagging around nerves) causing a neuron’s messages to get mangled.

Whatever your preferred belief system, inflammation is present in both the vascular injury model of ms (with us through postmortem studies since the mid 19th century) and the autoimmune model that has held sway since the 1920s (which coincidentally is when drug companies began their inexorable march to world domination). Theories seem to be changing and it’s worth looking into a few of them so at least you can talk with your caregivers rather than just being talked to.

All human’s brains shrink over time, msers especially (and to some extent those on the way to becoming type II diabetics, Alzheimers has been dubbed Type III Diabetes by some in the medical profession). It certainly seems an awareness of what we eat can’t do any harm as there are some changes we can make to our daily lives that could have an impact on the day to day functioning of our brains.

About 8% of our brain is made up of stem cells so yes, brain cells do have the potential to regenerate and in healthy brains there is a constant turnover of these glial cells which are created as, where and when they’re needed.

As the brain is approximately 50/50 fat and water (more like 60;40 but i can’t remember which way round) how we choose to consume both fat and water can make a real difference. There are lots of resources online to suggest ways of ingesting fats that your brain would appreciate but it also seems to be about what we choose NOT to eat that can help here. Our bodies have little need of pastry, bread, pasta or biscuits.

Blood sugar imbalances brought about by too many carbohydrates over many years in the diet (which turn into sugars in the blood) which eventually fuel our muscles and brain need to be paid attention to.

Avocados are a pretty good food for us and keeps our brains happy too or so I’ve been led to believe by various online resources (not just the avocado marketing board).

Too many carbs damage the brain as does too few.

All this looking after ourselves is far from straightforward!

Get with your body’s new program and look for the alternatives!

Happy googling!

*I choose to keep ms in lower case as it seems to have less importance to it (in my own tiny mind anyway).

Decisions for the The Long Game

As 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).

All Clear Above and Behind… I have control.

sky at the end of a summer's day — finding control

I used to go gliding when I was younger; the end of the title of this post is the response of a trainee glider pilot given in answer to their instructor’s statement at the beginning of the title so the instructor knows you are aware and conscious and ready to take hold of the controls.

It felt unnatural at first: being catapaulted up into the air from the ground or getting towed into the sky behind an engined plane. When the cable gets released both methods involve being left hanging in mid air. The first realisation that there is no safety net is a bit the way I felt when I read about the condition (MS) I’d been recently diagnosed with.

We’ve received some news we’d rather not have.

But it’s here, what to do with it now?

I believe we have an awful lot of choices available to us in life, perhaps slightly fewer if we’re incarcerated. A failing, unreliable body isn’t quite incarceration, although, occasionally, it will feel that way.

Perhaps you’ve ended up here after looking for a definition of what a chronic condition is and what can be done about it?

We all make choices every day, the language we use to refer to those choices I think is very powerful and if we’re not careful, can become counter-productive. I don’t believe it’s healthy to talk about ‘fighting a battle’ and thinking of our bodies as a battleground, an inhospitable, dangerous environment. It seems to have become a scarily common description of illness generally, it perhaps suits some situations but far from most.

I and many others like me with a chronic diagnosis under their belts are very lucky and instead, we own a condition that isn’t on the verge of killing us. I think the battle analogy to describe illness most often gets applied by those whose bodies can generally be relied on and if the well think of illness it’s the sort that is acute or terminal. It certainly doesn’t appear to be the chronic, invisible sort.

Our bodies on the other hand are into this predicament for the long game, our conditions are chronic which means, on the whole, they aren’t deadly (there’s a debate to be had here but basically we’re not in imminent danger of croaking). Our bodies could do with some gentle encouragement to perform as best they can.

Having a chronic condition gives us the time to learn to communicate better within ourselves. It seems (broad generalisation here) society has not been listening much up to this point to the collection of chemical processes, skin and bones that carry them around all day.

We need to learn to cosy up, coax and persuade rather than stick our fingers in our ears and ignore the many messages our body sends every day employing any number of analgesics, social anaesthetics or purely symptom addressing pharmaceuticals.

We need to become dancers, willing to listen to our partners, our bodies a little better. This analogy works much better for me than being told to be like a foot soldier. Perhaps we need to think of ourselves also as creative managers?

The term ‘management’ I think is taking up a different space in this day and age. It used to carry regrettable connotations that conjured up images of unneeded and ineffective middle managers who don’t listen to their workforce and in turn aren’t listened to.

On a bad day managing my disease can feel a bit like how I imagine the deckchair manager may have felt in the last minutes before the Titanic sank – pretty useless and surplus to requirements.

On bad days I feel like my body is listing and yawing on stormy seas and no matter what I do I can’t stop it failing to find its comfort zone, it’s sweet spot. Those are the days I try and arrange not to force or test it.

It’s very different on good days. I can focus on the things I’m choosing to do that cause my life to feel better.

Whether, by the numbers, it actually IS any better (like a reduction in symptoms) is unimportant. How we feel about our condition and ourselves is ultimately, the only thing we definitely have control over.

Our state of mind is a mighty big thing!

thanks for your time so far. I’ll try to keep the posts a manageable length as I appreciate none of us like to squander our time. This occasional journal is a place for me to note my responses to various things around me, I hope they might interest more than just me!

The Meaning of Success is… empathy?

laundry heights — how do we define success?

Reflections on an event held in the West Road Concert Hall at Cambridge University (UK) on the 5^th march, 2014. Released next to International Women’s Day events: a book launch looking at successful women employees of the organisation.

The Meaning of Success

It seemed the thing that brought all these women through their careers to the point where they could be highly regarded by their peers was great support from parents, children, partners, friends and colleagues.

Members of the university staff were asked to name who they thought were the successful women in their particular CU sphere. The final 26 women shortlisted couldn’t have achieved what they did, by their own admission, without the support of individuals around them so maybe emotional intelligence really needs to be highlighted as one of the things most likely to further a person’s career?

I tried talking with a friend’s son whilst filling in the childminding gaps during his final, pre-school year ‘Be nice to people because people might be more likely to be nice to you.’ Being nice to people in the hope they’ll be nice back did not appear to come naturally to a boy with an older brother!

Which makes me wonder when precisely altruism kicks in? Do we need to have the capacity for empathy before it can start?

This may well be the subject for another blog post perhaps wondering at the same time why the medical professionals I’ve come into contact with appear to have a seemingly poorly developed capacity for empathy.

This is strange as you’d imagine any careers along the caring spectrum would have altruism at their heart?

Altruism is thought to be evolutionarily advantageous if you look out for others in your group others in your group may well look out for you. It could be argued that this trait works best when society behaves towards each other in the same way.

Society starts to feel uneven when individuals seem to stop receiving broadly similar treatment. Members of a society can hardly be expected to continue along their original path, no matter how evolutionarily advantageous it could have been.

How does this fit with the general theme of this blog and website?

My next entry I’m planning to make about gluten free brownies as a friend of a friend was asking for more details when I mentioned them elsewhere online.

I think being nice to people in the hope that other people will also subscribe to your way of thinking and might be nice to you at some future date is what I hope this blog will help to happen.

Chronic Alternatives is the name I’ve given to a site that I hope will become a ‘go to’ place for people wanting to live a little better. I received an MS diagnosis over 20 years ago which has given me a chance to step out of the hurly burly of day to day life. Providing me the chance to lift my head up and look around I now consider to be an immense privilege.

Before you start reaching for the sick bags that’s certainly not the way I described MS for my first 10 or so years of exposure to this chronic condition.

I see it as a good thing now because I have support around me, my husband appears to think I’m nice enough to him for him to consider me worth coming home to every evening.

Over time I’ll mention some of the therapies and therapists who have helped me and some of the mindsets I’ve found it helpful to examine.

protected by Tami who?

Roche is in the spotlight for its questionable business practices regarding Tamiflu

I believe the most recent scandal from the pharmaceutical corner of the rampant capitalism boxing ring is being amply represented by Roche and its unwillingness to share data on the effectiveness of its antiviral Tamiflu.

Governments around the world have been encouraged over the last four years to buy stockpiles of this drug to protect its citizens from a possibly very likely flu epidemic.

This can only be good news as we all (both well and ill) get a taste of the general crookedness of those who claim to care but only appear to really care about their shareholders.

Taken from bbc page last year “In response Roche has appointed a four man panel headed by flu expert Prof Albert (Ab) Osterhaus to look at data on Tamiflu which the company says will “identify unanswered questions”.
A flu czar?

He headed up that four man panel very effectively (this is where the written word misses something the spoken word can deliver in spades – sarcasm.

The four panellists of the virologist. It sounds like a production that could have a Michael Nyman composed, writhing and portentous soundtrack. It should be a play, Shakespearean in ambition, carried out in modern dress (wide pinstripe suits with a number of variously grey striped shirts). The play’s plot involves thoroughly underhand business behaviour on a global healthcare stage.

I wish I’d paid more attention in English at school or had been taught the classics.
Here’s some meat for the second act.

Pharma companies never promised tohelp us feel protecte… they really do appear to be all out to get us!

Thanks very much Ben Goldacre for pointing towards www.alltrials.net. Goldacre did a nice intro for a book Sir Iain Chalmers had a hand in creating Testing Treatments (he was the one who saw the need for objective studies of trial data and helped set up the Cochrane Collaboration who carry out meta-analyses of robust trial results).

I very much hope this scandal has swelled the alltrial’s number of signatures.

TCM v. Western Medicine

Traditional Chinese Medicine is taking more and more space in a GP’s toolbox of treatment options where whippersnapper Western Medicine is unable to provide help.

What breathtaking arrogance!

This post will be about a man who has an opinion reported to you by a woman who also has an opinion.

I make this clear because as human beings we could both hopefully have our voices listened to. As a medical professional, his opinion on medical matters can be rightly considered more important than those of a graphic designer/retired photographer.

With his training we could expect this professional to be an expert of sorts and after graduation when all his knowledge was fresh that would have been the case but there doesn’t seem to be the same need for CPD (continuing professional development) for doctors or consultants as there is for the rest of the general working public and so ignorant doctors are perhaps becoming more common?

If there was a need to brush up on what’s new in his profession then he would have been aware of all the research available:

All it takes nowadays is one Google search for “acupuncture pain relief research”.

As owners of a bopdy with its attendant aches and pains we are perhaps more invested in investigating methods to feel better than any expert might be? After all, they get to close the office door on our conditions at the end of their working day.

Dr David Calhoun was speaking on the World At One on radio4 on the 2^nd of April, 2014 giving his response to learning that the NHS will be paying for acupuncture for their patients.

Discussion between the enthusiastically ignorant Dr David Calhoun and Professor Martin Underwood is in the last 5 minutes of the 45 minute show. Dr Calhoun seemed thoroughly unimpressed that the NHS would be wasting their money paying for patients to receive acupuncture. A treatment that had no proof of worth in his professional opinion.

Professor Underwood on the other hand, had a far more pragmatic approach He’s decided on the worth of many treatments that NICE will pay for and this treatment carries next to no side effects for the patient, is relatively cheap for the health service and may even help patients feel a little better.

Let’s save discussing the efficacy or otherwise of expensive, often side effect laden, pharmaceutical treatments on the market for another post.

By describing acupuncture as nothing more than ‘theatrical placebo’ Calhoun managed to rubbish a 6,000 year old medical system in the blink of an eye.

A system that’s been around three times longer than the time we’ve spent without Jesus can’t be without any merits, can it? How long has Western Medicine been around?

William Harvey ‘discovered’ the circulatory system of the human body in the 17th century and Whippersnapper Western Medicine has proceeded to ignore its presence and relevance in many disease states since then.

China have been aware of circulation for much of those 6000 years and some have argued that the poorly translated ‘qi’ ( the word whose use gets guffaws from the seemingly uninterested among the medical establishment) is in part related to the flow of blood which delivers energy by transporting oxygen and carbohydrates.

It could be argued that Harvey’s ‘discovery’ marked the start of Western Medicine but usually Hippocrates, who seems revered as the father of modern medicine was also around before Jesus. By all accounts he was a big believer in talking to the patient and assessing how they look and how they say they feel.

This is something that western doctors appear to be losing the art of in favour of tests that will show a need for a pharmaceutical treatment. I appreciate this isn’t Dr Calhoun’s fault, perhaps he has a fantastic bedside manner which, in itself delivers a placebo effect to his lucky patients.

ps. The image is from a collection of mine that started as a response to the term zebra when used in a medical context. I photo’d the zebra while waiting for my vietnamese acupuncturist.

Medical students when receiving training have been told since a Dr Theodore Woodward (a 1940s Maryland US, MD), warned them, on hearing hoofbeats don’t look over your shoulder and expect to see a zebra. Exotic diseases are much less likely than the more commonplace.

Certain types of medical zebra appear to be becoming more common and that particular part of a doctor’s training, perhaps ought to change? (we’ll discuss elsewhere the way the disease MS has changed in its definition at least twice in my lifetime – is it auto-immune or inflammatory?)

keepin’ it real?

This you tube clip is the reason I’ve had issues with my caregivers. the clip shows a man who traditionally would be wearing a white coat talking about other men in white coats’ ‘waste of time and resources’ research.

I guess one of the problems I have is that I’ve been led to believe that the way science works is someone puts forward a theory – people disagree with that theory but need to prove it to be otherwise by performing tests.

Somehow or other this chain of events leading to useful treatments has stalled, leaving MS patients with a choice of treatments which are not worth writing home about.

I didn’t know this 15 years ago. At the time, in my 20s, I just figured that a treatment that involved multiweekly injections with a less than 50/50 chance of working wasn’t for me.

The only experience I’d had at the time, of thinking about chance and risk was putting my once a year flutter on the Grand National “It’s all a bit of a giggle (probably not for the horse or rider) just go for it because, what are you losing?” (I rarely put more than £5 on). Taking a gamble on the horses coupled with my willingness to take an analgesic if i had a headache (the only time popping a pill hadn’t worked for me I was having what I found out a year later, was the beginnings of my first attack of optic neuritis).

As time has gone on I’ve had waverings of doubt about my decision to avoid these treatments but, on the whole, I kept being fairly sure what had been happening infrequently to my body didn’t suit the treatments that have been developed.

20 years later I have secondary progressive MS but the data shows if I’d been taking one of the treatments there’d be no guarantee that I wouldn’t be in exactly the same place. I’m going to this talk tonight about understanding coincidence and understanding the data from clinical trials, I hope my booking the event isn’t just an example of wanting to revel in confirmation bias!

The NHS would be not far off £100,000 worse off and I’d perhaps have injection scars and have experienced something like flu a lot more than I have.

Professor George Ebers’s thoughts on MS trial design are summarised here and he was invited on to guest post on a site I figure is worth a read now and then as ‘mousedoctor’ replies to some questions and comments I may post which represent some of the most meaningful exchanges I feel I’ve had with the men in white coats throughout my long MS career to date.

During my illustrious MS career I’ve found dealing with stress is one of the most effective ways of managing my symptoms. These folk have looked into the theory. Get to bed earlier is one of the best pieces of advice I’ve heard from a circadian expert giving a TED talk on the role of sleep. He was on the telly talking about animals at the zoo and looking at their sleep – I guess we’re all just animals at the end of the day.

is it a bird, is it a plane or … superman? The perils of indistinct MS research

a herd of elephants — with a chronic condition sometimes you can feel alone.

MS appears to be smothered in mystery.

Given a name over 150 years ago but still can’t decide what causes it or arguably, precisely define it.

It’s almost as if it’s in noone’s interests to pin it down.

It’s very easy to become bitter and cynical when you have a diagnosis of a condition that makes lots of money (for shareholders) in providing treatment

s. I was pointed toward this study by US family and I can’t help but cynically wonder firstly:

Are the pharmacos purposefully muddying the ‘what’s the cause’ field to keep it wide open for further drug development?

Are they angling to develop more treatments that are only partly effective?

Or are the Researchers at Weill Cornell Medical College just seeking further funding streams for their favourite area of research by tacking the label MS to their research and hoping a big hitter in the MS market will throw money in their direction?

Perhaps this is just the way that science works? (answers on a postcard please).
“If the link with MS is proven, it’s possible that a vaccine or drug or probiotic treatment could be developed to destroy the C. perfringens B and D bacteria, which make the toxin, Vartanian has said.”

We need to fight our own corner we, who own a chronic condition as it seems the folk in white coats that we’ve been brought up to have absolute faith in aren’t as omnipotent as we’ve believed.

Chronic conditions appear to light up the eyes of pharmaceutical companies and they see a steady income stream in treating us chronics. We become more attractive in the wider field of healthcare when viewed through dollar goggles!

“I do acupuncture every couple of weeks. I stopped when i couldn’t drive for 6 weeks.
I couldn’t put my finger on differences but, I think my body feels less creaky and immobile – a session seems to stop blockages/improves flow as does CStherapy which i do on the other weeks.
I know that makes me sound like a hippy talking about flow but there’s more involved in our bodies functioning optimally than the West has been able to work out… give it a go.

I can see why modern medicine shies away from treating a condition whose state couldn’t be put a finger on by its owner but, it leaves me feeling there’s an awful lot we STILL don’t know.

Let’s acknowledge that and try finding out more which, I guess is what Cornell are up to but as an owner of a chronic condition i believe there are more fruitful areas of research…

Let’s go back to the 19th century where it was spotted in dead MS’d brains that there was a vein running through each piece of damage. Imagine what we could spot with the technology at our fingertips nowadays?

The Chinese knew about blood circulation over 5,000 years ago. in Europe, William Harvey discovered it in the 1600s.”

There are an awful lot of ifs and coulds in the Cornell work.

Perhaps they’re a shoe in for further MS research!

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