Barry White

At my recent hospital appointment I was asked by the consultant what I did for a living.

Before I could answer he started going on about something like how people like me like to toggle on, on benefits while others are begging for whatever it takes to get a better quality of life. My eyebrow must have looked like a wiggly caterpillar.

Cabbage White (Barry White)

So I interrupted

And putting on my best Barry White voice, asked what made him say that? It seems he had read somewhere I was on Job Seekers Allowance. I patiently corrected him, and suggested he'd read the wrong record. I do patient (pun intended)

Not that it was any of his damn business.

I've never claimed unemployment related benefits in my life, for instance Job Seekers Allowance (JSA) or Employment and Support Allowance, (ESA) nor do I intend to. I've never been inside a Job Centre. I'm not allowed to use one either - I'll come to that in a minute.

I've never 'signed on'. Ever. No disrespect to those that do. I just don't see the benefit.

The confusion often arises because even government departments get mixed up between ESA and DLA, which is presumed interchangeable. My experience of ESA only comes from helping people out with their claims, and as far as I'm aware unless you are in the ESA Support Group you are required to attend regular Job Centre interviews and it ceases when you find work.

You can receive DLA whether working or not. It's not means tested and not counted as income. It's there to enable you to be just like anyone else.

There is, a tiny quirk in the system

The government, despite its rhetoric about getting people more productive has failed to address the issue. Unless you are claiming JSA or ESA, Job Centre services are not available.

For instance, if you have a job, and want to change jobs, you can't use a Job Centre.

Daft, isn't it?

That is more than a disadvantage than you may realise. Many of the people I know are in work, with children in low paid or low paid part time jobs, and are willing to take on whatever work they can get their hands on.  It's a bit 'old skool' around here. They see the means to getting income is to work hard, and long tough hours if and when the work is available.

But because they are employed they can, the Job Centre told them, use the computers and take notes on a notepad, however other services such as speaking to an advisor, training, educational opportunities, the usage of phones, access to the internet and free postage, getting their bus fares back (for instance) they have to finance themselves. There is a tremendous amount of help available for the unemployed. But if you have employment? Stuffed.

This is my experience too. Meanwhile, one grabs every opportunity.

As for the consultants opinion? I'm well aware of the administrative cycle they get drawn into, and I get thats frustrating, but hey, don't paint everyone with the same brush.

Disconboblulated.

It would seem I've done well to get an appointment for an MRI  (Magnetic Resonance Imaging) scan, and so quickly. 

After doing a quick ask around Stroke survivor friends I was unable to find one who'd had on. All had at some time a CT (Computer Tomography) scan, as have I.

There's a comparison of the two types of scan here at NHS Choices. 

As noted in the article, a CT scan is the first choice because of speed. That's because it takes about five minutes, as far as the patient  is concerned, and isn't affected so much by patient movement. The actual scan process itself actually takes about 30 seconds.

The only thing I note from that article is that they inject a dye, which I didn't have.

An MRI scan on the other hand can take upto 30 minutes, which explains the interesting stuff in the questionnaire they sent me about taking along a music cd of my choices. They can also be quite claustrophobic.

They also requires one to declare any metal implants or medical devices, shrapnel, metal dust in the eyes and remove any jewelry except wedding rings. Further, as means of avoiding metal, they suggest jogging bottoms and a T-shirt, otherwise they require you to change into a hospital gown.

Urgh no. I'm a very private person. The first time my wife saw me unattired was after our first 10 years of marriage and after three children, and that's only because I was having trouble dressing myself. So I'll have to acquire a tracksuit. Much to the family's amusement!

----------

I've spoken to a GP friend - not my GP - a super intelligent mega being (poor soul) who has given me a telling off. Which offended me not at all. If you can't take a telling off when you are in your fifties there's no hope for you. He went on to explain that in my area Stroke services since I had my first stroke have been reorganised at least twice in a bid to improve services over 12 years.

Part of those reorganisations was computerisation of records that has been fraught with problems and abandoned schemes and budget cuts, and not specific to Stroke services.  Part of that problem has been that paper records have been scattered around various GP's, Hospitals et. al. for many, many decades.

--------

Secondly, there's a very British attitude towards the medical profession. Members of the medical profession are in constant education, constant advancement and respected for it. Rightly so.

Us Brits respect that, and look up to them as authority figures. This leads, I'm told, to not only expect not only medical, but clerical expertise - and when that fails, and in the heretical expectations of authority perception, it's the Medics fault.

And that part of the medical profession that deals directly with diagnosis has become accustomed to that. But thats not something I'm party to. There's no criticism of me there. The problem I'm having, I'm told, is that I have failed to perceive socio-perceptive model as it exists.

In English, my consistent view that the medical profession is a resource to enable me to make informed (informed by them) decisions about my well being  is a total pain in the arse when coupled with my habit of sitting quietly and listening to what I see as advice. 

The doctors, from long experience think they are saying 'that the way it is' and this is what I'm going to do. Thats what they're used to doing. Which never occurred to me. So when I pop up later and start asking questions it's seen as an, to quote Terry Pratchett, an Embuggerance. 

What I should be doing I'm told it is be up front, on the spot with queries, questions. Great if you can think that fast.

But medical records are not the preserve of the medic. They are the responsibility of the administration. 

I think that's fair. 

Reinforces my view though that if I have the capability to chase up my paperwork I will.  My life may depend on it. Can't wait around for some admin somewhere. 

xx

Flying blind.

I have had the oddest week or two.

I've had a bit history lately of sudden blackouts.

After waiting four months for a Neurology appointment, See Here my Bear and I attended.

I was as expected, prodded, poked and push this, pull that, the works. Then the chap that examined me noted I had trouble fastening my shirt buttons using my right hand. "Y'know" he said "I think you can use that right hand, but for some reason you don't want to"

Note this blog's title.

"I need to talk to your wife". S'ok.

He did, then suggested "I think there maybe some Neuropsychological why you can't use that hand", and asked me whether I had a mental health history. Nope. "Well, you are the first one I've said that to who's not objected" He explained "I need to talk to my consultant". You're not a consultant? "No"

Came back with 'his' consultant who asked all the same mental health questions. Lots of explanations about how some people suffer from hidden childhood trauma who are desperate for a better quality of life who beg for help. I, apparently, have shown little impetuous to reveal any 'hidden' trauma, therefore he wouldn't refer me for that. I said. Hidden? He said "Yes"

Psychobabble.

Have you, I asked, checked my records? "Records?" Yes. I was hospitalised here and was treated, had a number of scans and ultrasound here and at another hospital and by my GP for years for strokes and small strokes, and it's causes. "We have no records"

Soooo. I've dug through my records, phoned back (well, Anne did) discovered they had the correct name and patient number, a phone number as our number which has nothing to do with us, but in 2001 it stopped. Which means they had a record. It's just that after 2001 they went missing.

There's only so much I can say here, but I found I was referred to a trainee, and the wrong consultant, and a department that hasn't dealt with TIA's for many years. More, I've discovered that most of my medical records are at my Gp's and at another hospital.

These guys were flying blind.


Catchya x


I've had a letter and confirmation phone call asking me to go  for a MRI head scan in three weeks time. Very pleased. I've never had an MRI. CT scans and Ultrasound but not that. So that's progress.

I also discovered they totally reorganised stroke care in 2009 and in 2012 in my city - two totally different schemes. But only for those who are admitted for critical care, not for those with TIA's. The new standard only applies to those admitted to hospital.

I'll comment on that as and when I can get further information. But I'll say this, 'NHS Choices' seems to be a misnomer.

Angel in disguise.

So the delicate negotiations begin.

Though at home I get plenty of time alone, I'm not 'allowed' out unaccompanied.

There are a few reasons. Unlike a lot of Stroke Survivors, at least, the ones I know, I look quite unaffected.

The disability can be quite invisible. Part of the reason for that is I quickly got to dislike the 'disabled' label, and I worked very hard to appear normal in the early years.

In retrospect, that was foolish of me and the pain and frustration I felt placed an unnecessary extra burden on those around me. I should have been less driven and more patient. More, I know now that I inadvertently insulted other stroke survivors who more wisely found that strength doesn't come half-killing yourself  to fit in with everyone else. It often comes from swallowing your pride and knowing when to know, and when to ask for help. I failed to get the professional help I needed simply because I refused to admit I needed it. Incredibly stupid of me

Going out was always going to be a problem. Though my intellectual facilities had not diminished, as I quickly discovered, I became, and still can, be very confused in crowds and around busy traffic. I'm told I have a habit of 'wandering off',  and I find walking any distance exhausting even with support.

Cerebellum (linky)

Since my cerebellum (latin for 'little brain', at the bottom back of the brain) was mostly destroyed, which amongst other things controls balance, walking is very much like walking the deck of a ship, or a tight rope. You can do it, but heck does it take practice! I can fall over unexpectedly. We call them "hello floor!" moments which can leave me looking like someone beat me up.

I also have a few communication difficulties. I have to slow down my thinking so that my mouth can keep up, and I do have times when I know what I want to say, but it just won't come out or comes out wrong, and I can seem distant or worse, drunk. This is known in the UK as Aphasia and Dysphasia, and in the USA as just Aphasia.

As a kid I had a pronounced stutter. I never thought I'd say this, but if it wasn't for the speech therapy  I had back then I'd be stuffed now.

To further complicate matters, over the years I've had mini strokes, which have had a cumulative effect, and recently, fits.

------------

As you can imagine, all this had a tremendous impact on my independence. I went from a marathon runner who loved hiking, orienteering and very early morning breakfasts at Café's I loved to track down, to someone who never goes out alone. Morning paper? Forget it. A pub? What's that? I've never had a McDonalds (suspect I'm not missing much) A coffee with friends, holidays, visits to my old haunts in the Uk or on the continent. Nah. And I lost my driving licence.

I'm watched by a nervous family when I eat, hovered around the bathroom door when I (in my modified) shower. I've had worried neighbours phone the police if I wander a few yards to a local wildflower field to  forage or sit on a bench. "Dray, get in the car mate. Ah-ah-don't argue. Get in the car" Sheesh.

I'm not allowed out alone. Somewhere along the line I was actually classed, I recently discovered, as "a danger to myself and others" Makes me sound like a bonkers mad axeman.

---------

New doctor at our surgery. Young chap. Knows his stuff. Naturally, I had my Bear with me. Raised his eyebrows when he saw that my stroke prevention tablets amounted to 23 a day. "Blimey!" he said. Then he put me through a battery of tests.

"Right" he said. You've not been to Neurology for yonks, but you're going. May be a wait. As we left he said "Dray, ring me".

So I did. He explained that though everyone's concerns are legitimate, I have to regain a degree of independence, I must be allowed to make mistakes, and that people will just have to worry. "We" he explained "are just going have to work out an action plan. Oh, and next time you come down, leave the missus in the waiting room". I think I like this man.

--------------

The delicate negotiations? Well, I run the family finances. Very good I am too. We are in credit with absolutely everything, which I believe is a little unusual. No debts.

But if I'm going to get out alone, I need to reserve a little for personal use. The family have become used to, ahum, appropriating anything left over for their use.

That local Café I want to try not too far away?

Wish me luck.

Bubblewrap Diet

Really going to have to update that profile pic. Lost a lot of weight since then, as after Christmas finishes I always go back to Ye Olde Goatee.

Day 22 of my Very Odd diet. I started out at 90.3 kg, and I'm now at 86.1 kg and dropping. It's a bit of a mystery why I put weight on in the first place, as I only eat a small meal a day as I don't get hungry. I lost the hungry gene years ago with my first stroke. So I don't nibble either.

The current theory at the docs is it's a side effect of the interactions between the 23 tablets a day I take. Apparently the interactions between so many tablet of various combinations is impossible to calculate.

Why a Very Odd diet? Because I made no change to either my food, exercise or tablets. I just decided to lose weight and I did. Very odd. But it works. Perhaps I should write a book entitled "The State of Mind Diet".

I've decided to resurrect my favorite time waster.Turn that sound up. Go on. You know you want to :-)

Aw heck.

Darn my Artistic genes.

Getting the fidgets again, despite having three projects on the go. Probably means, after a lengthy break I'll probably find an excuse to do some complex bookbinding again.

Binding a book is usually straightforward, as is rebinding a book. Anyone can do it - you can find basic guides on the internet, for instance, have a look on Pintrest here  or search Youtube.

I'm not a big fan of rebinding old books, though I've done it. If you have a very, very old book then pay the price and approach a National Trust restorer who will not only advise you on the cost, for a fee, explain preservation, archiving and storage, for a fee, and in exceptional circumstances restore it. For a fee. They may even register it and the advice followed so they can keep track of it.

Don't assume if you do, the book is valuable. Value is subjective. It may be commercially worthless, but if it's worth it to you to pay the hundreds of pounds for a family treasure to be maintained optimally, it's worth a fortune to you, and it's worth doing it properly.

Me? I've been presented with three hundred year old beautifully annotated  family bibles and journals, a wealth of history in need of tender loving care. I've placed them carefully in a large folder bound with twine, asked the owner to pay for a safe deposit box, keep a handwritten journal, on proper embossed paper, and every six months I'll that bind it for them. Then they can store that along with book.

It may be broke, but don't fix it. For younger books, say, a treasured 1970's Enid Blyton covered in crayon - wrap it neatly in four layers of brown paper, pop a loose elastic band around it, put it back on the shelf. Every few months unwrap it and read with affection. The smell alone will take you back. Oh, and watch those elastic bands. They can perish....

Complex bookbinding is an entirely different matter. It's the creation of a work of art irrespective of the contents usually - hey, I'm no reviewer. But if I can do the obvious and create art that reflects the contents, excellent.

Complexes is that I do purely for the love of it. It's a long, and if I was to charge, expensive and arduous  process. The length of time it takes is, well, as long as it takes, and that can take weeks if not months. I don't have photos of my work here, for privacy reasons that would take too long to explain, but if you look at the Pintrest page above, you'll see a Dragonfly cover which I admire. Copyright the artist.

Going to have to change that profile pic. I'm a bit slimmer and have a goatee nowadays.


Dray x

Who Q?

Just as I'm cooling down after someone confidently said to me that there was a direct correlation between Stroke and lowering IQ, and that it is quantifiable in IQ points, and by implication a loss of intelligence - then annoyingly said "we'd have to agree to differ" when I had the temerity to disagree.

Some chuff said something similar today. Read it somewhere, they said. Can't remember where. Hmm.

Stroke is complex, and whether it affects cognitive or reasoning function depends on where in the brain the stroke occurs, so sure it can  affect function. Stroke can certainly affect the ability to process or express language, which can be further exacerbated by loss or reduction of motor control.

But these are not indicators of intelligence, or the lack of it. I hold my hands up here and say hey, IQ tests are fine as a clinical tool to determine support, but beyond that are no demonstration of ability or personality, and are more important to those who like to self aggrandise.

Otherwise, if you can do the job, and the boss is happy with your work and the time it takes to do it, then smile. If you can't, find another job. To me, thedemonstration of ability to function in your environment, whatever that environment is, is rather more important than some test, unless that test is designed to provide support or training to enable one to fulfill a function.

_____



IQ can be fun though. I love it when people draw comparisons with people like Einstein. Bit of a problem there. In his time, there were no IQ tests, though a quick google shows that it was estimated (how, I dunno) at somewhere around the 160 mark. The mean IQ of the UK is 120. Which, if you know anything about statistics, is meaningless.

As for me? Well  now. Twenty odd years ago I was unhappy in my job and hunting. A job required an IQ test, and the prospective employer, with a cheeky grin, asked me whether I wanted to do a "How to do an IQ test" course. I went in with an IQ of 140. Came out with an IQ of 220. You read that right. Two-Hundred-And-Twenty. They made me do that IQ test three bloomin' times in three weeks. 220.

In the end? I got fed up. Didn't pursue the job.  The employer? The NHS. My present IQ, according to Mensa, is now 153, which puts me in the 'top' 3% of the UK population. Not bad for a Strokie. Go figure.

I'll finish with a couple of quotes. Prof. Stephen Hawking. Has done an IQ test, says it's prob "around 160" but, "People who boast about their IQ are losers"

Albert Einstein. IQ unknown. "I seem to know how to guess correctly"

The Guinness Book of records retired their "Highest IQ" catagory in 1990, " IQ tests are not reliable enough to designate a single world record holder" Their last holder was Marilyn vos Savant, with an IQ of 228 :)

Oh, I dunno :)

A visitor commented "....but you look so normal..." and then looked dreadfully embarrassed.

S'right. I'm used to it. I noted it, because that's the way I'm made. People watcher. There's a bit of me that always stands back and watches. A few self deprecating jokes put them at ease.

It would seem that either due to personal experience or well intentioned (and important) television adverts, people have expectations of what a Stroke Survivor should look and, well, be like.

But a stroke is a brain injury, the brain is a complex organ and everyones brain is different. It really is that simple. The brain is the control centre, and how it affects the bits its attached to varies enormously.

I have physical probs, but I also have cognitive problems. I can also remember how my 'mind' worked before Stroke. Cognition and mind are interlinked, but aren't necessarily synonymous. I may not understand immediately. It's a bit like theres a filter between me and the outside world. But as I'm inclined to stop and think before I speak anyway (I used to have a bad stutter as a kid) it isn't really a problem. Ish.

The important thing is - never judge a book by its cover :-)

-------------

A bit distressed at the moment. A diabetic friend had been in hospital with breakages and edema due diabetes. They wired  him up and after a few weeks they allowed him home. So he hobbled up here, went for a pizza on his way home, and the chuffin metal work fell apart not long after he was home.

Titanium and stainless steel rods through his leg.

Now he's back in again. This is what he was released from hospital with......... I shake my head in wonder.