Monday 15 April 2013

so many shades of grey!

As owners of an unknown thing I believe we'd do well to view our condition with an open mind. Neurologists would appear to have been barking up only one tree in their search for the shape, colour and texture of this condition.
Arguments rage in MS forums the world over as to whether MS is an auto-immune disorder ie the patient's own myelin is mistakenly eaten up by their own immune system (like their very own very hungry caterpillar or our very own Fidos please see earlier post) or whether MS has vascular aspects to it - disordered cerebral bloodflow creating oxbow lake type damage from whorls and eddies in veins. Flood damage, if you will is caused when blood is held up leaving the head perhaps also being implicated in slowed perfusion to the brain. Our blood  dithers and loiters rather then leaving the head in a timely manner and ends up dawdling back to the heart. 
Ok, not very scientific descriptions. 
But the main arguments appear to have become quite binary - either you believe the immune system is confused or you believe the  vascular system requires its own NRA (National Rivers Authority rather than National Rifle Association) although the strength of feeling amongst patients and their professional care givers can run quite high so perhaps both NRAs are needed?).
I believe a little of both theories could be going on in my own body.
2 of my NHS neurologists have been chief advisers to the UK MS Society. The first one looked after my gran as she died (thankfully relatively quickly of motor neurone disease in her late 80s. She thought he was great - he apparently had a fantastic bedside manner. All i knew, 2 years before my MS diagnosis and before the internet had really taken off amongst all but the earlieset adopters was the need to find some sort of drinking beaker for my nan's failing hands. http://www.tommeetippee.co.uk/product/easy-drink-beaker/
the neurologist who gave me my diagnosis died and, 10 years later i was appointed the man who looked after my gran it was only then that i realised his bedside manner worked best on frightened patients who didn't ask questions of their experts (from what I've been led to believe the man in 50 shades also wants a subservient, pliable female). A few years on and our relationship didn't blossom into the classic doctor,patient/master/slave one so i asked to move to the care of a younger neurologist for whom i'd taken part in a study and had regular MRIs for 6 months. Once he'd taken on the role of my caregiver I saw that he too needed to feel in the position of 'expert'. 
Thing is 'expert' is a relative term especially in the field of MS.


Friday 12 April 2013

Disabled/Reabled?




The sun's appearance this spring I imagine has been good news for everyone's states of mind http://www.nbcnews.com/id/32289718/ns/health-behavior/t/you-may-think-best-sunny-days/ especially after the seemingly endless months of pewter grey prisonlike days which I'm pretty sure has a knock on effect on the body.
Using something that's obviously been thought about and is full of elegant solutions for what it sets out to do can be as life affirming as a sunny day.

This is a post 'bout my first ever trip to the wheelchair centre http://www.bartrams.net/page.php?category_id=7. I'd had a very short go on a friend's wife's  trekinetic wheelchair at his suggestion when i mentioned that it felt like i was needing to think about such things. The footprint of my life no longer included trips to London to see an exhibition or walks on the beach when visiting family. Making my way on the tube hadn't been an option for some time. The length of one tube platform is pretty much beyond me let alone a handful of them. I hadn't been bothering hills for years but can't blame increasing disease for my absence in that area!
Life has been becoming smaller and smaller.

I tried a load of different chairs and could only say at the beginning of the outing 'well, that's quite a stack of cash for the  www.Trekinetic.com'
Just talking to the sales guy and before I'd sat in any it seemed trekinetic's all*terrain suitability  is what you'd be paying for.... that and its breathtaking looks. I'm not an adrenalin junky and wasn't sure that my wheeled needs would warrant the price.

Then I sat and pushed in some other chairs in the shop and I realised that style, slopey wheels and knobbly tyres aren't the only qualities you're paying for. It's stand-out, hands down better than anything else in that shop at propulsion, speaking as a wheelchair virgin.

I think because the user sits a few inches further back over the wheel there are a few more inches of contact with the wheel to push and propel yourself further, compared to the others I tried.

I'm going to borrow one for a weekend.
I'll settle trialling it on provincial pavements and do the beach first, on a trip to the seaside.
I want to see a couple of exhibitions in London but I don't think I'll tackle the tube til i'm used to my new mode of transport.
The wheels shift between urban and offroad by twisting a bar underneath the seat; angled wheels for uneven ground/greater stability to upright wheels better suited for manoeuvring indoors and getting through doorways.
I googled it for user reviews and the one thing that came back was the two different methods for getting up kerbs. Fulltime long term wheelchair users weren't keen on the change - not much good for spinal cord injured but if you have some use of feet to be able to move the footrest out the way it seems it's ok.

Worth reading others' thoughts on it online, I found this blog http://www.apparelyzed.com/forums/topic/7046-top-end-all-terrain-crossfire-and-trekinetic-my-reviewrant/ particularly useful for a bit of objectivity and asking the questions I don't yet know to ask. I tried one of the active/sport chairs with low back which I found just didn't roll as effortlessly as the trekinetic. My lack of experience has to be borne in mind; I didn't come with any weight of expectation or previous experience. My arms aren't for the moment primed for propulsion.

I'm looking forward to getting into this chair.
It's put the word disability into a very different pigeonhole in my head.
An altered frame of mind even without the trekinetics headturning looks & award winning design could be worth the price tag alone?
If you're in the enviable/unenviable position to be needing a wheelchair outside the home and have found a way to pay have a look at their website - there's a woman pushing herself through 6" snow!

* lack of gravity might stop this chair working on the moon but I reckon it could probably deal with the rest of the lunar environment.