May 18, 2011

An Elephant In The Room?

We all know there's a lot of resistance in the medical world to using a blenderized food diet for tube-fed folks, but we don't often talk much about the resistances from parents and carers.  Many of the same resistances are there of course, like worries about tube clogs, getting proper nutrition, extra workload, hygiene, cost and of course the simple problems of not knowing it's an option, or how to even think about starting.

But I'm going to go out on a limb and suggest that many of the common reasons against are, for a significant number of people (especially parents) simply foils used to justify a decision that's really based on something else. Something unmentionable; like shame and embarrassment.

Put yourself for a moment in the shoes of a typical person from a country like the US or Australia.  A typical person, let's be honest, eats a really bad diet.  You may or may not eat badly, but I'm talking about the majority, whose eating habits and dietary health have been incontrovertibly exposed and explained in countless studies. Most people manage to be happy feeding themselves and their apparently-healthy kids a highly processed, unbalanced diet high in fats, starches, meats, sugar and salt until something goes terribly wrong because of it. Even then many do not change their ways, seemingly preferring an early death after years of dialysis rather than give up their comfort food habits.  Most people are overweight, and most of the overweight are technically obese.  It's simply become normal, to the point where people who have through their own acts and choices made themselves obese believe that airlines discriminate against them by not making seats big enough or charging them for two tickets.  If you are not this person, then please now spend just a moment imagining being that average person feeding themselves and their family too much of a bad diet heavy on the pre-packed, take-away, meat/fat/carb triumvirate..........

.......and then see yourself with a child who now needs for some reason to be tube fed.  Pause for a moment. Then someone suggests you can feed your child a diet of real food (they don't have to miss out on their hamburgers!) with a high-powered watch yourself as your brain conjures images of doing just that.  You're really going to blend that KFC bucket/cheese pizza/burger and thin it with sugar-laden fizzy drinks every night?  Or are you perhaps going to have to face the guilty weight of the food pyramid, vegetables other than deep-fried potatoes, and so on?

You know you eat badly, even though you fool yourself into contentment through the soothing normalcy of it all (and the brain chemicals produced by high sugar and fat contents etc) but to imagine doing that to what you now see as a medically fragile child through a blender and a tube no less......wouldn't that threaten the very way you lived your own life?  Perhaps you might even blame yourself a little for that child's plight.  What a terrible place to find yourself.

Processed food has become trusted too.  It is produced (most people believe) in safe conditions and since the relevant government board certifies it safe to eat then it surely must be OK.  I think this belief is transferred straight on to canned formula, but in an even more powerful way, in that it is also a medicalized product - so it must be excellent, surely!

Stories are legion, and survey results show clearly that having a tube-fed person at home receiving a blenderized diet (whether it's you or someone you care for) almost always improves a family's diet by simple virtue of increased awareness of what food actually is.

I'm suggesting, in short, that people who eat badly and know it (that is, most people) are a little threatened by the in-your-face act of blending and tubing food.  So they are far more likely to stick with formula, because it's easier than admitting the ways in which you have been failing yourself and possibly your family too.  Isn't it?

Harsh, sure, and this is just my opinion.  But am I wrong?  And if I'm right, what can we do to make this easier for people who want to do the right thing by themselves and their families, but who are stuck in the great western 'unfood' trap.  Let's not be blamey, we're all susceptible to some degree to the bombardment of messages around us to consume, to treat ourselves, to enjoy, to be *normal*.  Can we use BD also as a tool to improve the lives of carers and parents more directly too?

I'd love to hear your thoughts.

May 12, 2011

Roger Ebert goes BD

A couple of posts back I linked to one of Roger Ebert's journal articles talking about his g-tube.  I was moved to comment with a link to this site and others, and to ask why with his situation and resources (ans awareness) he was not utilising a more wholefood diet.  Well, others no doubt spoke with him too.

Long story short, here is a film review (of a film you will probably benefit from seeing) where Roger speaks some more on the food issue.  He also tells us he's ditching his canned formula, and heading into BD - with his doctor's blessing.  Yay Roger!


May 7, 2011

No irony deficiency here - plus an update.

Have you noticed the ads?  Of course you have.  I'm still feeling a little sorry I went down that path, but needs must, and all that.  PLUS, how funny is it?  Google shows you ads based on your IP (your approximate physical location) and the contents of the blog sorted by keywords, phrases and recency.  Food is mentioned a LOT here, isn't it?  Almost every time I've been here to write or check or whatever, I'm getting ads for local restaurants or restaurant guides.  Perfect irony, I'm sure you'll agree.  I also see ads for Sustagen Hospital Formula so it's pretty smart for something done by what is essentially a robot.

Anyway, the update:  the Facebook page passed the 300 member mark and it's been what, 3 weeks or so?  The forum is moving along very nicely too, but still needs some work.  Turns out, it's harder to wrangle with virtually no skills and no budget and very kind but part-time help than Beverly or I probably anticipated, but still; we're getting there.  So here's my plea: can anyone help with or recommend someone lovely and cheap to help with getting the site up to the next level (it's running on Joomla, supposedly the easiest and best DIY software available - Bev and I are just total noobs to it is all) and show us the basics of how to shunt stuff about from there?  Thanks.

I'm very keen to make the front page look good and essentially replicate the prime informational stuff here.  To make it a good one-stop place to spend half an hour reading the essence of what we have all learned is most important to know when considering getting into BD.  Like these pages over on the right-hand menu here are>>>>>>>

Secondly, live chat.  I've had lots of feedback that people are really into that for discussing things and that's a priority for us too.

I feel rather chuffed and definitely gratified that Roger Ebert replied to me recently (see previous post), and is now apparently looking more closely at BD for himself.  Busy man, but nice to know he actually reads his readers' comments and responds too, isn't it?

That's all for now (I can never write much here in respite), keep your eyes peeled next week, I suspect exciting developments once I return home!

May 5, 2011

Nice post from our Celebrity G-Tuber here.

Just a quick linky one all,

Writer, influential netizen, all-round thinking man and film guru guy Roger Ebert has a g-tube, in case you weren't aware of that.  I've been following his writings on the nets for a long time now.  Here's a post you'll like.  His readers are of course aware he can't eat or drink.....but having a tube myself I overlooked the obvious (as perhaps did he for a time) that this didn't necessarily mean the readers knew how we non-eaters actually eat.

Here's his post: