Tim Midgley

I was 46 when I had my first stroke (sic)

Herein below is the story, so far in brief.

From the September 96 I had been at best under the weather with a severe pain in my head and with fuzzy and double vision by the February 97. I would fall asleep for no reason and was feeling nauseous 90% of the time with projectile vomiting the other 10%; my GP sent me to see a consultant, he told me I had narcolepsy. My GP was not happy and sent me to see a consultant neurologist this one told me it was stress, again my GP as I were at best bemused, so my GP sent me back and this time I was told that I had the condition called Epilepsy. By the September 98 I felt like nothing on this earth albeit the `so called' medical professionals were adamant that I had a form of epilepsy, despite my own and my GP's protestations to the contrary, so reluctantly the consultant neurologist put me on the waiting list for an MRI scan, and I was given an appointment for July 1999.

By June 99 [aged 46] the pain in my head and sickness hit me with a vengeance and to such an extent it was at best debilitating, by the 19th June the pain in my head was unbearable and nothing I could do or take would relieve it, on that fateful day I thought a bath mighty make me feel better. Whilst in the bath, it was as if someone with a child's water pistol was inside my head blasting warm fluid against my skull [my skull became very hot]. I stood up in the bath and the whole of my left side just melted away, just like butter under a grill, I went down like a harpooned whale and smashed my mouth on the taps and my head bounced against the side of the bath, goodbye to most of my teeth. I did not know which way was up or down, I dragged myself out of the bath, I don't know how I did to this day. I pulled and dragged myself naked and wet along the floor to the top of the stairs and pulled myself down the wooden open tread stairs and across a wooden floor to the telephone. I pulled the telephone cord to get the phone off the table whilst hoping it did not brake on its way down. What I did not realise, until after telephoning 999 was that all I could do was make a gurgling sound; fortunately the emergency operators have a procedure for what they call silent calls, where they fortunately send an ambulance irrespective, whilst asking you to remain where you are and to stay calm.

I recall hearing the siren and the paramedics breaking in through the windows however I recall very little thereafter that or the following few weeks. However when I eventually met the consultant whom had previously told me I had epilepsy, the consultant had at least the decency to apologise. Alas the severity of the Haemorrhage left me with epilepsy, so in part the consultant could foresee the future, but regrettably missed the preceding arterial Venus malformation and the resultant Haemorrhagic bleed to acquire the epilepsy.

For the cyberspace medic's my first stroke was an intraparenchymal haemorrhage centred on the right lentiform nucleus, involving the posterior limb of the right internal capsule and extending into the centrum semiovale, that appears on a CAT scan now as an area of hypodensity lateral to the right lateral ventricle and there is some compensatory dilation of the right lateral ventricle.

Some 12 months after my the Haemorrhage, I had to have `Phenol nerve blocks' as well as Botulinum toxin injections [Botox] in an attempt to relieve the spasticity in my left arm and leg, I also then took 20mgs, four times a day of oral Baclofen but by the summer of 2000, the Spasticity, moreover the spasms, had become so severe that the spasms could catapult me out of my wheelchair; the pain when the limbs were in spasm was irrefutably extreme [polite terminology]. By 2001 it was self evident the medication regime was not having the desired beneficial effect. [Cautionary note: - the Botox impaired my liver function to such an extent the rehab consultant was concerned the damage could be permanent if I they did not stop the Botox]

Therefore they proposed in the autumn of 01 that I may benefit from having a Medtronic Synchromed infusion pump implanted into my stomach to enable Lioresal Baclofen to be delivered 24/7 into my intrathecal space which is the area occupied by fluid that surrounds ones spinal cord, this enables the drug to be delivered via a catheter from the pumps 18ml reservoir [Continuous Intrathecal Baclofen Therapy (CITB)]. After the required trials and approval for funding from my PCT, which took until the April 03 the pump was installed and my pump weighs in at when empty at 7.2 ounces [205g] it is 3.36 inches [85.2 mm] in diameter and 1.08 inches (27.5 mm) deep. It has to be refilled every three months and will have to be changed when the built in battery runs out in approx 4/5 years. The Continuous delivery of Antispasticity medication into my intrathecal space for the management of my spasticity has been a resounding success for which I'm grateful to all those who made it possible.

However there is a down side being it weakens all [I mean all] muscles therefore you do pay a price for the relieving of ones spasms and the pain they caused. Albeit because it weakens your 'good side' also you have little or no chance for improving your transfer and hobbling abilities, it took time for me to realise that however only after constantly ending up on the floor. Also if there were ever a dribbling competition in the Olympics I would no doubt make a podium finish, even that is all a small price to pay for not having the spasms and the pain they caused 24/7.

I have continue to have problems with my throat and on a bad day I can only have pureed food and thickened liquids moreover the constant chest infections which arises from my saliva and or fluids and or food etc., going on to my lungs rather than to my intestines.

My haemorrhage also left me in considerable and at times excruciating pain from CPSP, aka Thalamus Syndrome which is a 'so called' phantom pain albeit one that the master torturers of the Spanish inquisition would have been proud of being able to inflict. Despite the best efforts of the Pain Clinic Consultant and experimenting with several drugs and many more combinations of drugs this pain is a constant companion. This condition first presented itself as an abnormality of sensation when touched which resulted in exacerbating this pain albeit a phantom pain, it heightens the pain if one applies even a little pressure and I can no longer correctly respond to what was normal responses to temperature sensations which has lead me to scalding myself.

However, the pain got progressively more acute after 6 months and over the first 12 months it was intolerable. My paralysed side joints are today extremely painful and for no apparent reason some days it's intolerable. I'm told CPSP occurred due to the brain damage from my haemorrhage and one neurologist told me there was little chance I was going to escape CPSP given where the bleed was and which damage gives rise to these phantom or psychological pains which five years on; are like having my joints broken, and the bone splinters pushed through the skin under pressure. I have heard from others with CPSP aka Thalamus Syndrome that they were unfairly accused of being hypochondriacs; anyone with CPSP will know only to well just how real and unforgiving this pain is, it may be phantom but its as real to me as my reflection is in a mirror.

In 2002 I was also diagnosed as having Diabetes as a result of the Haemorrhage which was another side effect that I acquired free of charge, that no one told me was probable or possible either, as they had not about the Lymphoedema which took hold of my paralysed side with a vengeance by the end of 01, which is now treated by way of manual drainage of my lymphatic system on a daily basis.

So having started 1999 being 6 feet 3 inches tall; I ended the year 3 feet 6 inches tall and on four wheels. I have learnt to my cost that my Haemorrhage was just the commencement of a new chapter of my life, which even after five years [being now December 04] of that journey it is still one of discovery, discrimination, social exclusion etc., etc.

I now appreciate just how inappropriate the term 'stroke' is, as my life was certainly not 'caressed' by this experience, but dramatically altered as it has for the countless others past, present and those to come.

The NHS from my experience and observations cares little and does even less, unless that is you are extremely lucky as their system promotes the term 'stroke' to ensure they can tag us and classify us all as geriatrics which enables the NHS to disable us further and not by our impairments and or conditions but by their reluctance to invest in the appropriate rehabilitation regimes and clinical care.

Sadly it appears to me that the NHS would like to forget all about us; however by classifying us as geriatrics they can justify ignoring us, as this classification enables them too incorrectly and spuriously claim that most of us are of no economic benefit to the state which justifies their ignoring our clinical and rehabilitation needs. However the NHS is fantastic at talking a good game whilst not playing one, as the general public of thinks that we receive physiotherapy and hydrotherapy and ongoing rehabilitation 24/7. I am oft told by people that I "you were lucky to have your stroke whilst you are young enough to get over it however my grandfather was to old to benefit from what the Hospitals can do for you today" and "how lucky I am to be able to use the services of the local Stroke unit", I find that some of the public think that we are also showered with substantive fiscal benefits and free cars and our carer's are also on a nice little earners and all courtesy of their taxes, I just dribble more whilst trying to bite my lip.

Above all else; the one thing that I have learnt post my first stroke, is if you wish treatment, rehabilitation, and or clinical care you need to be able to shout for it and or have another shout for you and be persistent as our NHS and state has perfected the art of selective deafness when it so wishes and more so for those of us " lucky to have your stroke whilst you are young enough to get over it." As they say, ignorance is bliss, where its folly to be wise.

Tim Midgley

Thanks to Tim for sending in his profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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