Out-Patient Appointment

As I covered in my post “Hospital - Discharge” I was left with very little information when I returned home, and if anything I was left with the impression that there was nothing I needed to do but monitor my blood pressure and take my meds. So you can imagine my surprise when I received a letter inviting me to an Outpatient Consultation, with the first Consultant I had seen in hospital, at 11:00 on Thursday the 19th of March 2015. As my partner and I were flying out to spend the postponed week with the step-daughter in the Alps on the Friday she had to work and could not rearrange her diary so was unable to come with me.

At 08:00 on the morning of my appointment I took my first BP reading of the day (145/94). I then investigated where the clinic was being held as I did not know the city that well. I finally set off at 09:30 giving me what I hoped would be plenty of time. I arrived at the single story community health centre at 10:30ish and after parking in the street outside I sat for twenty minutes just looking at the entrance. When I eventually made my way into the building I found myself in a classically fashioned NHS community facility from somewhere in the mid seventies. There were very few people, either staff or patient, in evidence, even the Reception was unmanned. Finally finding a non medical staff member I asked for directions to the ‘Stroke Clinic’. Following the man's directions, which took me down the archetypal series of corridors, I came across two nurses, who confirmed that I was in the right place. After handing in my invitation letter I was told to take a seat.

At 11:10 I was called into a side room where I was weighted and my blood pressure was taken (178/105) after which I was told to go to another part of the waiting area. At 11:30 my name was called by yet another nurse and after confirming my name and date of birth I was shown into a standard sized and equipped consulting room with its desk, wash hand basin and examination couch. Sitting at the desk, which was against the righthand wall, was the female Consultant from my first full day in hospital (see Hospital - Inpatient). As my last memory of her was of her sitting on my bed telling me that I might have to wait until Monday before being let out but that she hoped not, I was pleased to see her. Smiling a “good morning” I took the seat she pointed at.

Any fond memories where dispatched by her very first words.

“Your blood pressure is too high! Have you been taking your meds?”

Had she never heard of “White Coat Syndrome”?

Thinking that a simple “Good morning” would have been a much better way of starting and knowing that she was referring to that fact that five years earlier I had come off my blood pressure tablets I found myself getting defensive.

“Of course I have. I’m not stupid.”

As soon as I had said the words I knew that it would have been better if I had held my tongue. The Consultant just looked at me and moved on.

“You’ve had a massive Stroke and you are lucky to be walking and talking!’

Wow!

That went against everything that I had been told in the hospital, where I was told that my Stroke had been minor.

But the good news did not end there!

“ You’ve had numerous other strokes.” She told me in a matter of fact almost off hand way.

As I struggled to grab hold of what I had just heard I found something from my partner's past that seemed to made sense of things. Her father, who had died of dementia a few years ago, had had a number of TIA’s (Transient Ischaemic Attack), and so I asked the question. “Do you mean TIA’s?”. Maintaining her off-hand approach the Consultant dismissed my question with a simple “No”, and continued, “If they were TIA’s there would be no sign of them”.

Wow!

I did not know what she meant and told her so. In response she asked if I would like to see. Of course I said yes.

Turned her computer screen to face the open room she clicked on an icon and an image flashed into focus. Even though the monitor had been moved I still could not see clearly so got up to and stood just behind the Consultant.

The first image showed a large BLACK blob in the area that corresponded to the Central Core, which to me seemed quite large. The Consultant went on to explain that the area was black because that part of my brain was dead and would never regenerate. Then to my utter surprise she continued to flick through images that showed other BLACK SPOTS, all smaller than the first one. Due to the shock I momentarily lost the ability to take in anything but basic details so I had no idea how many there were.

The Consultant told me that there were seven or eight.

SEVEN or EIGHT?

Bloody Hell!

I don’t know how long silence reined but it felt like a lifetime.

Retaking my seat, I told the Consultant about the Headaches. In yet another example of understatement my Consultant responded by uttering the words that have perhaps defined the rest of my post strokes life.

“You get headaches with Strokes, so get used to it!”

AND THE HITS JUST KEEP ON COMING!

So I was a survivor of multiple strokes!

And I had been told this news as if the Consultant had been describing the weather for the past few days.

Moving swiftly on the Consultant told me that she was recommending an additional drug (Doxszosin) that she was sure would bring my blood pressure under control.

And then she delivered her final blow of the day by informing me that she had no prescribing rights so I would have to wait until her recommendation reached my own doctor and she would issue the drugs.

I knew that it would be at least two days before the meds would be available, which meant that I would not have them until after the holiday to the snow.

I left the Consultant’s presence in state of complete shock.

Painting the kitchen

So here I was sitting at home with nothing to do except feel sorry for myself and with my partner having gone back to work, which meant that she was away over night two times a week. With nothing to do but wait for the bi-weekly visits of the Stroke Nurse (RP) I was already feeling bored.

Just over five years ago we knocked down a not very well built and out of keeping extension at the back and side of the house and had a larger one and much better on built in its place. This gave us a much lager kitchen, as utility room, an additional lounge and an office. At the time we finished it off with white walls and ceiling, but by now the paint had started to fade to an off-white. As a result we had been talking of repainting the kitchen for months. The only thing that held us, well me, back was getting the time, with me working up to the hours a day six days a week. Well, it was all different now. After my Stroke  we agreed that I would do the painting over the next couple of weeks. Because of the size of the room 6 m (19 ft 8 in) by 5.5 m (18 ft) and with the high point of the ceiling of just over 4 m (13 ft 1 in) I needed to get hold of scaffold tower. After a bit of research I found one to hire from a tool shop in the local market town which the partner and I went and ordered it after we got back from watching England play Italy at Twickenham, after which we bought the new paint: white with a hint of apricot and orange chalk paint for one wall.

The scaffold tower was due to be delivered on the 23rd February and I would have a week before it was being picked up again. So the weekend before we set about clearing the kitchen of everything that was that’s home was not in a cupboard, including taking apart, and moving, a Welsh Dresser. When the scaffolding arrived, on the Monday, I was left on my own to put together the metal and wood tower. It would have been an interesting job even if I had been fully fit, but the way I was feeling now it became a monumental juggling act. One that I managed to complete in the short period of 5 hours, having had it almost collapse on me at least twice. That was all I could manage for the first day. I was down to taking my blood pressure only three times a day but it little sign of coming of reducing. Prior to started work it was 164/93, after finishing for the day it was 172/99 and before I went to bed it was 154/82.

On the second day I started relatively early (about ninish). This first full day with the scaffold was taken with preparing the walls. Getting rid of cobwebs, wiping down and finally filling the few cracks that had appeared over the years. As this was all I was going to be able to do that day due to having to leave time for the filler to dry I could and did take it easy, which showed in my BP readings (08:00 − 161/93, 18:00 − 158/96 and at 22:00 − 154/86).

It was only on the third day that I actually began to paint. I have never been a fan of rollers, when painting, so I set about painting the room by brush. So many people have told me that rollers are best but I really like the texture that you get with brushes. The first job was to paint the three walls and ceiling that were not going to be orange. Because we have a block and a work service protruding into the room there was a large amount of repositioning of the scaffold and even then it still involved a certain amount of reaching from the platform. I was finding I was only able to do twenty minutes or half an hour before I had to rest, sometimes for as long as a couple of hours. As I had a lot of wall to cover this was not allowing me to make much headway. (My BP readings on day three were 155/99, 184/108 and 154/92.)

Day four brought the prospect of yet more painting. As on previous days I was only able to work for a limited period before having to take a rest. What with having to manoeuvre the scaffolding and take rests progress was slow. At least my BP was holding steady, if still high (155/99, 184/108 and 154/82).

The Friday, day five, with all chance of completing the painting of the main walls and ceiling gone was much like the previous four. As is often the case when painting on to plaster it takes more than one coat. I finally finished the first layer and so began the second, which was in some ways easier added to which I was getting the hang of where to place the scaffolding but with it having to be returned on the Monday time was running out, which added a certain amount of pressure of its own.

The weekend brought little respite but fortunately I was nearing the end and by Sunday afternoon the final brush stroke was depositing its load. While the paint was drying I dismantled the scaffold.

All that was left to do was use the orange chalk paint on the on remaining wall but that could take its time.

The last week had taken its toll and so I left things as they were until the Tuesday.

When I did restart I took the rest of the week.

England v Italy

Two weeks after being confirmed as having suffered a Stroke I “celebrated” my 52^rd birthday. For obvious reasons this was a birthday unlike any I had had before.

If I had not had a Stroke the partner and I would have flown out to the French Alps, on the day after I came out of hospital, to spend a week with the Step-daughter in the resort where she was working. All that went out of the window the moment that it was confirmed that I had had a Stroke (see post: Hospital - Inpatient). Under normal conditions my birthday would have been subsumed into the whole holiday thing but know plans had to be changed.

I have always been a fan of Rugby Union, both as a player and spectator and I have been fortunate (or not so fortunate) enough to have been to Twickenham to watch England play. As a birthday present my partner managed to get two tickets for England’s game against Italy in the 6 Nations at Twickenham on February 14^th, which also happened to be Valentine's Day. This year, for the first time ever, I did nothing for the day. My Stroke gave me an excuse, mainly that I had other things on my mind but also due to me not have left the village on my own since leaving hospital - mainly because I was banned from driving for a month, by law.

In an effort to make the whole trip as easy as possible we travelled down to London on the Friday afternoon, getting a lift with friends from the next village who were doing the same thing. Not having to drive or even be in the front of the car was easier than I thought, especially as there was absolutely no pressure to even take part in any of the conversations. Our friends dropped us on the outskirts of London where we could catch the Underground to where we were staying at the flat of an old work colleague  and business partner of my Partner. The flat is in West London so convenient for getting to Twickenham the next day. Even though we were away from home I still felt the need to take my blood pressure: which I took 5 times that day (at 04:00 − 172/101, at 08:00 − 181/105, at 11:00 − 160/102, at 18:00 − 173/102 and at 22:00 − 170/93). As I was feeling tired after the journey we got a take-a-way and had an early night, well relatively, just after 22:00.

The next day, not needing to be at Twickers until around 13:30 for the 14:00 kick-off, we took it really easy and had a leisurely breakfast of Croque Madame for me and Eggs Benedict for my partner and Coffee for us both in the Cote Brasserie in Turnham Green. We eventually arrived at Twickenham Underground Station at about 13:00 and joined the throng making its way to the home of English Rugby.

After the two weeks that I had had it was good to be out and doing something and getting to watch England inflict yet another heavy defeat on the Italians was something to savour, sorry any Italian readers. What I did find a little frustrating was the feeling I had of not particularly liking the crowd, which is a problem if one is attending a major sporting event. Not that the crowd was boisterous of aggressive, although this being middle class England at play there were more than a few Henrys and Ruperts who had spent a little to much time in the pubs on the route from the station to the ground. It was just that I was still feeling a little fragile. The tickets we had were in the Upper North Stand, Block U22, Row G, so behind and to the left of the posts and up in the gods, which was not a problem because there are isn’t a poor view in the 82,000 seat stadium, but what it did mean was a journey up three tires. Even taking it easily, by the time I reached to top level I was out of breath, which I found worryingly disconcerting. As we queued for a beer (dispensed in a branded plastic container, which I still have and use every day when I take my meds) my partner, not unreasonably pointed out that a lot, if not most people climbing those stairs would be a little out of breath, including her, and that I was almost back to normal which showed that I was not as bad as I thought.

The singing of the National Anthems

As kick-off approached we went to find our seats and watch the build up (see inclosed photo). As we were enjoying the entertainment one of those slightly worse for wear Henrys, seated next to my partner, insisted on talking to us. As often happens when one has imbibed a little more than one should this particular Henry found it difficult to control the level of his voice, an annoying interruption that was to continue throughout the game, which meant that the only way of avoiding the irritation was by concentrating on events the field, something which earned me a rebuke for being anti-social from my partner.

The game itself was the exciting try feast that we have come to expect from games against Italy with England running out 47 − 17 winners, although a late Italian soft try was to have a major influence on weather they won the championship or not.

With the final whistle the happy crowd began to drift away. I have always found it strange just how quickly a stadium can empty. Although my partner wanted to be away I asked if we could sit for a few minutes. I was happy but was tired. Watching England at Twickers was a thing that I had enjoyed a number of times before but this time I felt exhausted. Eventually we descended the steps and joined the remnants of the throng making its way back to the Underground / Overground Station. As we approached the station was obvious that nothing had been done over the years to speed the departure of spectators away, as evidenced by the huge queues. Even though it was only 16:00 I was fading fast so we decided to take the bus back to Chiswick, a more circuitous route but taking into account the huge crowd at the rail station considerately less stressful.

Unlike most days at that time I was only able to take my blood pressure three times (at 08:00 − 165/107, at 18:00 − 174/102 and at 22:00 − 191/99). By 22:00 I Was dead on my feet and was in bed soon afterwards.

As was the norm at that stage after my stroke I was awake at 04:00 and as was also the norm then I started taking my blood pressure and took it religiously throughout the day with five measurements (at 04:30 − 148/94, 08:00 − 163/98, at 14:30 − 163/93, at 19:30 − 177/105 and at 22:00 − 183/99). The gap between 14:30 and 19:00 was where we were watching the Scotland v Wales match in an Irish pub in North London after which we met our friends for the journey home.

My MRI Scan - What Rot!

When I slid into the claustrophobic tube that was the MRI Scanner during my short post stroke stay in hospital (see posts; MRI Scan and Hospital - Inpatient) I assumed that, not that I was thinking about at the time, that the resulting scan would form the basis of both my diagnosis and on going treatment. There was also a subliminal thought that in this day and age the scan would be instantly available to anyone with authority, all you needed access to a computer. How wrong could I have been

As I covered in my posts about my hospital stay, there was a long wait for the medical staff to “see the scan”. It’s never like that in the movies where people and their doctors get to see the scans on iPad type machines within minutes. Bearing in mind that this is a scan of my brain, such as it is, and that I was having difficulty in seeing it it felt as if there was a deliberate attempt to keep it secret. No one outside of the hospital has ever seen it or seems even to have access to it, not my GP nor the Stroke Nurse or anyone else. WHY?

When I asked my GP to see it she said that she did not have access to it and that the only for either of us to see it was to get a copy from the hospital. When I asked how one went about that she told that she did not know but that she would ask her secretary find out and let me know. Two days later a message was left on my home phone, giving a name and number of the person to talk to at the hospital.

Finally getting in contact with the lady in Patient Administration, who I will call SK, at the hospital I requested my MRI Scans only to be told that I would have to fill in the Data Protection form that she would send through. All I could do now was to wait for the postman to do his stuff.

When the form arrived it requested basic information such as my name and address and which particular records I was requesting. It also required a payment of £25.00. I duly filled in the required details and enclosed the cheque before walking across the road to drop the envelope in the village’s post box.

Almost two weeks later a small thin package from the hospital arrived, which I left on the side in the kitchen for a further couple of days. Over this two days I would glance at what was obviously a CD but didn’t touch it. The partner, who had been one of the reasons that I had requested the scan in the first place showed no interest either, which surprised me.

Then on a Sunday afternoon I decided to at least give the CD a look. With a slight feeling of trepidation, which was a bit odd as I had seen the image the CD contained before (more of that in later posts) but I think its never easy to see the inner workings of the body and especially the brain.

As I pushed the CD into the slot on the side of the laptop I had the feeling that I was going to be disappointed. The CD appeared on my desktop and when I opened it there were six files listed:
autorun.bat
autrun.inf
Content.cfs
pfmap.exe
scriptList.txt
start.bat
None of which could I open!

When, on Monday morning, I contacted SK in Patient Administration again to inform her that I was having no joy in opening the CD I was given another number, in It, to call. The young lady (LW) I spoke to was initially concerned, her attitude changed the moment I told her that I had an Apple Mac. At the word Apple she became very dismissive and told me that I should get another computer. When I told her that I had a legal right to have my records provided to me in a format that I could read her response was that it was not going to happen “ … not on a system that hardly anybody in the area uses.” When I pointed out that between 20 and 40% of people use Macs her only word was “exactly!”, and was told to go back to Patient Administration. Which I duly did! But before I did I asked for the name and telephone number of LW’s manager, which she gave me which as it happened was the same as her’s, but she said that it would do no good as she would say the same thing as her. SK in Patient Administration was very surprised and promised to look into the matter. She also agreed that it was a legal duty to get my records to me in a format that that I can read or view.

Later I phoned the Manager (NH) of the LW in IT, who I have to say was completely different to her subordinate. After a short conversation, during which I gave her my contact details, I received assurances that it would be sorted within the next week or so.

Regardless of the outcome, the point is that in this day and age can it acceptable that a national organisation such as the NHS to make a conscious decision that a common format of computer platform is not one that they will support? There are many programmes that allow graphics of all kinds to be viewed on any platform (pdf, tiff to name but two). It is a legal and moral right for everyone to have unrestricted access to their medical records, including all forms of scans. What I did not appreciate was the pompous attitude of LW from IT. Not only was she repudiating my rights, she appeared to have no understanding of what its like to view a part of your body that is dead.

It was hard enough to even load the CD never mind actually seeing what it contained and the disappointment, on a number of levels, of being denied was like a kick in the guts.

The story is not over and I await with bated breath to see how the hospital is going to take to “sort” the issue.

Stroke Nurse - First Visit

On the 5^th Feb 2015 and totally out of the blue a letter arrived from my Local Community Stroke Team.

The letter informed me that they had received a referral from the hospital that I had attended after my Stroke. Something that I was not told would happen.

The sender of the letter informed me that Local Community Stroke Team's role “ … is to offer support, explanation (sic) about the stroke, ensure you understand your risk factors and medications and monitor you (sic) blood pressure etc.” And then asked “I would be grateful if you could contact the number above to let me know if you would like my input and support: I will then try to arrange a visit to your home.”

The writer went on “I hope this letter finds you well and I look forward to hearing from you.” An interesting comment considering that I was a little over three weeks post Stroke.

The letter was signed

“Kind regards

RP

Community Stroke Associate Practitioner”

What kind of request was that?

Of course I would welcome her input.

The line about finding me well was a little strange as she knew that I had had a stroke, so how was it going to do that?

The most important thing for me was the fact that such an organisation existed came as a complete surprise: a pleasant one, but a surprise nonetheless. In fact I had every reason to believe that I would not be seeing anyone from any form of community based health organisation as on my discharge notes it clearly said that there was no need for transfer to Community Rehabilitation as well as there being no indication for a Social Service / Community Care Plan to be put in place (See: Information. What Information?, 02/03/2016).

Needless to say that I phoned the number at the top of the page very rapidly, only to have to leave a message. Having left my telephone number I had nothing left to do but wait, which lasted for two days. When RP did phone back we arranged for her to come to the house on Friday 13^th Feb at 09:00. It’s a good job that I’m not superstitious.

As the morning of the 13^th arrived and not really knowing what to expect my partner and I awaited RP’s arrival. The partner was working in the office and called down to say that a car had passed the house twice so she thought the Stroke Nurse had arrived. A fact confirmed by Bruce who barked to let us know that there was someone coming to the house. I opened the door and Bruce ran out, tail wagging, to investigate the new arrival. A pleasant looking lady in a blue nurse’s uniform and carrying a black leather bag reached down to pat Bruce and then walked up to introduce herself.

Having offered the new arrival a drink, which she declined, we settled down at the kitchen table. The first thing she asked was “How was I?” With my dissatisfaction with the treatment that I received from the medical profession during the last few hours of my time in hospital still fresh in my mind I let the frustration come following out. There was also some truth in the fact that I believed, at the back of my mind, that I had somehow brought this stroke on my self by not remaining on my meds in 2010 (See: Horner’s Syndrome, 30/03/2016) and in some way knew that I was going to get a wigging from yet another member of the medical profession, so probably tried to get my defence in first. So much so that RP had to ask me to back off, and quite rightly so. Once I had calmed down I apologised and explained where the frustration / anger had come from. As she was always going to RP explained that she was not from the acute sector and what was in the past was just that. With no option but to accept the obvious truth of her comments I suggested that we start again.

RP opened her bag and withdrew an old fashioned Blood Pressure reader and stethoscope which she placed on the table. She then dug out an A4 ring binder which she handed to me. The image on the cover was of a blue, computer generated, slightly feminine human showing the right shoulder, neck and face from the ear forwards. The title of the folder was PATIENT INFORMATION PACK. The finale thing she took from her bag was a blue CL sized folded form entitled STROKE RISK FACTOR MANAGEMENT PLAN onto which she had already written my name, address, date of stroke, type of stroke (L Pontine Infarction) and her contact details. L Pontine Infarction is the medical way of saying that I had had an obstruction to the left side of my brain which resulted in local death of the tissue. RP then took my Blood Pressure which measured 160 / 102.

We then began to talk. The first thing RP asked was what had happened, so I went through the story again (Attack, 22/11/2015) , including my time in hospital (See: Hospital - Admission, 25/11/2015.; Hospital - Inpatient, 03/12/2015; Hospital - Discharge, 07/12/2015).

At this point my partner joined us. After introductions RP went on to tell us the good news: that having had a stroke it was very unlikely that I would have another. Of course the figures supported that assertion but it was not easy to believe when you have just gone through one.

The finale subject that RP talked about on this first visit was the whole issue of Risk Factors. I should definitely stop smoking: not a problem as I have never smoked, unless you count the odd cigar after a damn good meal and at New Year. There was the usual advice to reduce the alcohol intake, lose weight, eat healthily and to reduce stress. There was a difference of opinion between my partner and I as to the degree which each of the Risk Factors impacted on me. This was a discussion that RP quite rightly refused to get involved in, but only ticked High Blood Pressure and High Cholesterol in the “Your risk factors have been identified as.” Section of the Management Plan.

With that we conformed the next visit for the morning of 19/03/15 and RP left us.

Horner's Syndrome

In 2010 I was the owner of a Riding School and had been for a couple of years. I had been working with horses for a little over a decade and running and then owning a Riding School was in many ways the natural culmination of that work. Initially I was brought in to run the Riding School, located on the outskirts of the nearest Market Town. The school had been established almost 20 years ago by the land owner but, by her own admission, she was getting tired. When I arrived there were just under one hundred clients. After six months the landowner suggested that I take on the running officially so I bought the rights to the Riding School and began to really grow the business. By the end of 2009 the active client base was up to 300 or so and we were taking new ones on at a rate of one every 2 days. Just as I was beginning to make a profit the landowner decided to sell, without telling either me or any of the liveries, some of whom had been with there through a number of horses. The new owners, when they eventually arrived, did not want the hassle of a school. So even though I still had a client base of between 300 and 400 I had to find a new venue which proved impossible so I had to close the business.

The months either side of the closure were very stressful on me and the family. I managed to keep a small number of clients, those with their own horses and as I was teaching one of these I began to feel unwell and my right eye started to weep. This carried on for a few days before my partner persuaded me to go to the doctor, who diagnosed Conjunctivitis and prescribed drops, which had absolutely no effect. I eventually developed a whole range of symptoms including: headaches right across the front of my head, behind the eyes; a cough; tiny lesions on the right half of the top of my head; a loose bowls; and strangest of all a drying and flacking of the skin on the right hand, which appeared and disappeared in as short a time as half an hour. A return visit to the doctor gave a new diagnoses of Head Shingles for which she prescribed another set of drugs.

There was a mix up with the prescription, one of the drugs came in two boxes with different designs and even two different names, and as a result I found myself taking double the dose and within two days I was being sick every few minutes with a complete inability to keep anything down, even water. By lunchtime of the second day my partner called the doctor’s and when they suggested that I come in she told them that it was impossible, so it was agreed that a doctor would come out on a home visit. It was only once my own doctor arrived around tea-time that the error with the drugs was discovered. Having sorted out the issue around the dosage I got back to what passed for normal in a day or so.

The meds to deal with the Shingles had absolutely no effect. So a few days later we were back at the doctor’s. This time I saw a locum who thought it might not be Shingles and sent me to the eye department at a hospital at a seaside town 35 miles away. The partner drove me as I was not really up to it and we had been advised that it was not good for me to be driving because the tests might prove bad for my eyesight in the short term.

As is often the case when one presents to hospital my blood pressure was taken and it was 240/100. My partner was convinced that I would be hospitalised with those measurements but I was not. After an MRI Scan and much painful digging in my tear ducts with stainless steel medical pokers the doctors were no nearer making a diagnosis. They had, however, noticed that my right upper eyelid had dropped so that it was resting just above the pupil. With symptoms ranging from headaches, a cough, a dropped eyelid and my alarmingly high blood pressure the medics were struggling to come up with any firm diagnosis so they sent me home.

A few days later I received a letter from my doctor asking me to come in for a consultation during which she admitted that she had no idea what I had. We discussed the possibility of me having either a single problem or even three or more separate ones and any combination therein. She was, however, concerned about my blood pressure and put me on a new regime of drugs.

I was 47 and being a male I was not happy at the concept of having to take drugs for the rest of my life so started agitating for the doctor to let me bring my blood pressure down by lifestyle changes. At no point was the concept of a Stroke mentioned, except in passing. There was never any form of conversation around exercise, diet, stress management. The doctor gave me a medicine to help calm the coughing and things were left at that.

Eventually I was sent to a Cough Clinic at yet another local hospital. I underwent a hole range of tests which proved that there was nothing wrong with my lungs. Then a consultant thought he had cracked it: there was a cluster of nerves in my throat which was playing up. He was ever so excited as he told me, so much so that he was bouncing up and down. He sent me for a CT Scan which he hoped would confirm his diagnosis of something he had only ever seen once before and would mean that he could perform a very rare piece of delicate surgery. When, at the my next Out Patient’s appointment, the CT results failed to show any sign of the noodle that he expected he refused to even see me and sent a minion to break the “sad news”.

But the consultant did have some interesting news, which he communicated via a letter to my doctor: he thought I had something called Horner’s Syndrome

Information! What Information?

There I was sitting at home heading toward my 52^nd birthday and now a Stroke Survivor.

The really strange thing was that I really had no idea of what the hell that meant.

Studies suggest that somewhere around 120,000 people have their first Stroke each year in the United Kingdom with a further 30,000 having a second one. Of these 1:5 (30,000) will be fatal. In other words one every four and a half minutes. In the area of England where I live there are 1,000 strokes a year.

On a very rough and hugely unscientific survey, carried out by me amongst those fellow survivors I know personally it seems that most of these Strokes leave the Survivor with a range of deficiencies not so different to my own. I know a woman, in the village, who lives in the old peoples housing and must be in her late seventies or early eighties who had a stroke three weeks ago and is up and a bout. Unsteadily and with the aid of a stick but up and about. A more scientific study (produced by the Stroke Association) indicates that the average length of hospital stay post stroke in the UK was 20 days in 2010 which would allow for very many to stay for only a few days or less.

All this, unfortunately, adds up to a Stroke being a large part of what the National Health Service has to deal with. That being the case you would expect there to be a well oiled machine ready and waiting to burst into life.

Well, I got nothing! I found myself at home after two days in hospital with a bag of meds knowing next to nothing.

After leaving A&E not a single Consultant, Doctor, Nurse, Therapist or any other Medical Professional spent so much as a second explaining anything. There were many opportunities but they were all by passed. The Consultants were only interested in getting a diagnosis. The two more junior doctors I was put in the care of disappeared without trace. The nursing staff were only interested in taking my sats and getting drugs into me. The only people amongst the hospital staff were the cleaners and those bringing the food, who were all very nice and chatty but of no use when it came to Strokes.

The only information I gleaned about Strokes while in hospital was from a noticeboard on which was pinned a copy of some colour leaflets. Even without my history in marketing and having printed thousands of similar pieces of paper it was obvious that they were printed and meant to be part of a folder. I have not seen them again.

One of the things I craved after my Stroke was information and yet there was nothing coming from the very people and organisations I thought would not only be most helpful but would want to provide it.

I was discharged from hospital having been diagnosed as having had a Stroke with a bag of meds, the advice to get my Blood Pressure down, not to go to my GP, to and keep it at 145/90 and a copy of my “Immediate Discharge Letter”.

The letter, which was also supposed to go to my GP,  was full of long words and implications that it was my fault. There was no explanation of what had been found. As it turned out some of what it said was plain wrong or at least missed important information, but more of that in further posts.

There was no conversation about how I was to achieve the stated Blood Pressure target. Nor was there any discussion around any of the other risk factors: alcohol; diet; weight; exercise; stress. 

I was given no information regarding support services; either Health Service based or those provided by the Third Sector. I had no idea that such a thing as a Community Stroke Associate Practitioner even existed.

I was left with the internet as my only source of information and as we all know that is a coat of many colours. Some good and some bad! However I didn’t feel like surfing the world wide web at the time.

I have talked to almost thirty Stroke Survivors and they all agree that the information they received was diabolical to say the least. In this day and age that is nothing short of disgusting. There is no reason why a simple pack cannot be handed to every person who suffers a Stroke. But before that there should be a human being who is able to spend a few minutes explaining what has happened and what the Survivor might find happen into the future.

I have been told time and again that the deficiencies I had immediately after my Stroke was all there would be. Technically that might well may well be right but that is not what it feels like. After your Stroke you are not going to feel very well and as a result you are going to be resting and not using your body as you did beforehand. As you feel better you begin to use your body more and you come across other things you either can’t do or are having difficulty with. What the medics don’t realise is that every time it feels as if you are finding NEW deficiencies.

There should have been somebody telling me all these things: the good and the bad!

Having talked to a number of Stroke Survivors I know that what they really wanted was information. Without facts people tend to fill the space with whatever information they can which generally means that the space is not filled at all. What actually happens is that the black hole of non-information gets bigger and bigger.

All of which is utter rubbish!

All the information is out there and it is a disgrace that there is not a simple and well established routine that gives Stroke Survivors and their Carers everything they need to know.

One way round this impasse is for Stroke Survivors to be a part of the clinical team.

What do you think?

Deficiencies

“You are lucky to be walking and talking …”

With these never to be forgotten words my Consultant broke the news to me that I had suffered a large Stroke but had got away with it.

OK! I was lucky!

At the time that was not the feeling that came to mind, but more of that in a later post.

While I did not have the range of deficiencies that I could have ended up with, I certainly did not escape scot free. 

As I described in my first post “Attack” my stroke happened after a Burn’s Night Supper. My partner and I walked home with the couple who live over the road from us. I was later to find out that the man told his wive that he thought that there was something “a bit odd” about me that night. Apparently I shook his hand a number of times on the less than a quarter of a mile which was not something we were in the habit of doing. And certainly strange enough for him to comment on it when they got home.

The overwhelming feeling I had was of being “unwell” “under the weather” “not quite right”. I don’t have any other way of describing it. There was nothing I could really put a finger on but I did not feel great. To begin with I put this down to the after affects of having a tot or two at the village Burns Night Super.

I assume it started during the night but judging by my behaviour on the walk home it may not have. Regardless, I had gone to bed at around one thirty, after having a dram or two more but just could not settle. In the end I felt that I had to move into the step-daughter’s bedroom, she being away doing a ski season, so as not to disturb my partner. All day Sunday I felt tired and not quite right. But as I really didn’t do anything I missed most of the deficiencies. I felt some numbness in my right hand but as I had been feeling what I put down to the beginnings of arthritis in my hands for months I thought nothing more of it.

On the Monday I got up at seven to walk the dog. My right leg felt heavy, as if I’d had a couple of pounds added to it and I seemed to be “dragging” it, well maybe not dragging, more not being able to bring my ankle all the way through to complete to stride. I also felt cold: more so than the conditions warranted. I worked as normal but when I got back, at around eight, I was utterly exhausted. So much so I went virtually straight to bed, not that it did me much good as I barely got a wink of sleep.

Tuesday seemed just another day until I got home. The partner was working away. So as had been normal prior to the stroke I settled down into the evening to write. My right hand felt enlarged to such a degree that my fingers felt too small for the keyboard.

I was getting almost no sleep: regardless of the time I retired. I found myself awake during the early hours, sometimes as early as 3 or 4 am. Not only was I awake I could not get comfortable in bed.

Wednesday was very similar to Tuesday. I walked the dog, worked and got home around seven and after getting something to eat I went to bed, with the same results as every other evening so far. The thing that was different about Wednesday was that it was the first day that I remember having a headache since Saturday. For reasons that I will go into in a future post I am no stranger to headaches but this was different in many ways to the ones that I was used to. This headache was in a different place in the head.

Thursday followed exactly the same pattern as the other days of the week so far. I felt cold and my right side did not feel right. I have covered the rest of Thursday in earlier posts so wont go into it any further here.

So having had a stroke what deficiencies was I left with?

My right side felt odd.
Generally it was difficult to pin down to anything specific.

My right had felt enlarged or puffed up.
This was not a consistent thing but when it happened it made using my right hand strange.

My right leg felt heavy and felt as if its movement was restricted.
This meant that when I walked I “dragged” my foot every so often.

I felt tired.
So tired that I could sleep at the drop of a hat.

I was not sleeping.
I was tired but when I did go to bed I was finding sleep difficult to come by and when I did find it, it was so often short lived and fitful.

I was getting headaches.
These could last from half an hour to most of the day. The other thing about these headaches was that no regular painkiller would touch them.

My right side felt cold.
There were times when if I was not fully wrapped up, including gloves, I could not even cover the two or three yards to the car without a feeling a real pain in my hand.

I was left with a two sided body.
I know every body is two sided but I am left with a right side that reacts totally differently to my left. If my left was warm my rift was cold. My right had tingles, my left didn’t.

I was slurring some of my words.
My slurring happened more often when I was tired but not exclusively.

I was having trouble finding the correct word.
I knew what word I was looking for but often struggled to both find and then express the word. It is true that the words I had the most trouble with were the longer or less used one but again not exclusively.

The right side of my mouth had dropped a bit.
This was not obvious but did begin to show when I was tired. It often only became apparent when I felt a thin line of dribble trickle out of the corner

My stroke has left me with a number of deficiencies that, whilst not as bad as they might have been, and while not affecting me every day they were still capable of having a significant influence on my life. My job now is to get used to the new me.

Notes to carers about our injured brains

Every Stroke Survivor is the victim of a brain injury and as such there seems to me to be a number of things that it would be helpful for carers, family and those we come into close contact with tried to understand. I have compiled a list, after talking the subject through with a range of Survivors from those who have lived with the after effects for almost thirty years to a later generation who like myself are less than a year into this journey of discovery.

I think of the brain as a smart phone. And as such it has a finite capacity. This is the case even without the effects of a stroke. Just like a phone our brains capacity is split between a range of jobs. Parts of the brain's capacity is used to monitor and control / regulate the automated activity of the body; other bits of the capacity are used to run functions in the brain itself; further capacity is used for walking, talking, eating, etc. When one has a stroke the brain's capacity is reduced, not only that but a new function has been added. The brain has to find ways round the dead spots, which takes a share of a limited capacity. This being the case our brains make choices over how they are going to use their limited capacity. This choosing may result in us feeling a lack of energy so reducing the movement and level of activity or not remembering things or looking to avoid complex situations. There is one thing I would ask all those close to us to remember, that we have absolutely no control over the choice that the brain makes. None at all!

The list is by no means exhaustive and is in no particular order but I hope it gives a good starting point and even generator of questions.

We may need a lot more rest than we used to.

We get tired as well as a fatigued. Our brain finds it both difficult and tiring to think, process, and organise the wealth of stimuli that it is expected to on a daily basis. When the brain gets tired it tells the body to rest and thus reduce the flow of stimuli.

Even though we look fine our stamina can fluctuate.

Cognition is a fragile function. Some days are better than others. Pushing too hard can lead to setbacks.

Rehabilitation from a brain injury takes a very long time, sometimes years.

We may have been discharged from formal treatment, if indeed we received any, but rehabilitation continues long afterward. Please bare with us.

We are not being difficult when we resist social situations.

Crowds, confusion, and loud sounds quickly overload our brains, we cannot filter things as well as we used to. Limiting our exposure is a coping strategy, not a behavioural problem and certainly not meant to upset anyone.

When you ask what we have done that day we are not being difficult when we say "I don't remember" of "Nothing.".

We really want to tell you but we really do not remember. A day is a long time and at any stage of it our brain may have said that enough is enough and as a result will have failed to store the memories or our brain is tired and is having difficulty accessing the memories. It is sometime easier to say either that we don't remember or even don't know rather than "my brain hurts".

If more than one person is talking we may phase out.

This is because we sometimes have trouble following different “lines” of discussion. It can be exhausting trying to piece many conversations together. We are not deliberately being dumb or rude; our brains are being overloaded!

When we are talking we may appear to drift away or even switch off.

It is not because we are avoiding the subject; we need time to process the information and even “take a break” from thinking. Later we may be able to or even want to rejoin the conversation and hopefully be much more present for both the subject and for you.

Try to notice when our behaviour changes.

Our behaviour can be an indication of our inability to cope with a specific situation and not a mental health issue. We may be frustrated, in pain, overtired or trying to deal with too much confusion or noise for our brain.

Patience is the best gift you can give us.

The space your patience allows us gives us time to work deliberately and at our own pace; which in turn allows our brain to rebuild it’s pathways. Pushing and multi-tasking may inhibit that and cause us discomfort, frustration and even pain.

We will almost certainly stumble over words and thoughts.

Please try not to interrupt. Allow us the time to find the words we are looking for and complete our thoughts.

No matter how frustrating it is please have patience with our poor memory.

We need you to know that not remembering names, tasks or any other detail of daily life does not mean that we don’t care. It is just that our brains are using the capacity it would normally use for storing and organising memories for other things. It could also be that the part of our brain that is affected by the stroke, and is in fact dead, may be an area connected with memory.

Please try not to be condescending.

We are not stupid - well no more than we were before. Our brain is injured and does not work as well as it used to. The doctors are sure that our intellect has not been affected, its just that our brains don't work the way they used to.

We may sometimes appear “rigid”.

Our brains are rewiring and the need to do tasks the same way all the time is part of that. As is having order and a place for everything in our lives. It is like learning the route of a journey before even attempting the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy and not aimed to irritate.

We may seem “stuck”.

Sometimes our brains take time processing information. Coaching or suggesting other options may feel like it's helping but it’s almost certainly not. Taking over and doing things for us is not constructive; it stops our brains finding the route and will probably make us feel inadequate.

We know you mean well, but.

Unfortunately at the moment we work best on our own, one step at a time and at our own pace.

We will occasionally need to repeat actions; sometimes many many times.

If we repeatedly check that doors are locked or that the oven is turned off it is not because we have OCD but that we are having trouble storing the information.

We may seem sensitive, sometimes overly so, or even insensitive.

We know that we may appear an emotional lability since the stroke. But we prefer to think of it as a reflection of the extraordinary effort it takes to do things now. Tasks that used to be done on automatic and take minimal effort, now take much longer, require the implementation of numerous strategies and can often be a major accomplishments for us.

We need cheerleaders now.

In many ways we are learning life a new, just like teenagers and in some cases like toddlers. It may not be what you want from us but it's all we have just now. It will help us if you can find your a way to encouraging our efforts. Please don’t be negative or critical: we are doing our best.

Support our Hope.

We need hope. It helps us employ the many coping mechanisms, accommodations and strategies we need to navigate our new lives. Every single thing in our lives can seem extraordinarily difficult for us now. It would be easy for us to give up. We would ask you to take the fact that we don't and get up every day as a sign of our determination.

Background noise is a menace.

We would love to have our own quiet room; just as teenagers want there their own space. With significant background noise we can become overly stimulated which means we could become tired, frustrated, fatigued or even irritable and probably all of them.

Time for ourselves.

The fact that we seem to want to spend more time than usual on our own does not mean that we don’t want you in our lives and that we don’t appreciate the support and love that you give us. It just means that we need the time for us. Time where we can restrict the stimuli to our brain and hopefully as a result create the space it needs to re-establish the pathways it so wants to.

Finally, it is really important that you understand that we do not know when any of the above will appear. So, if it is days or weeks between episodes that's just the way that it is. It is also probable that we have not been telling you of all our headaches and other deficiencies which may mean that a lapse in memory appears out of the blue. You have to believe that we are not making anything up or indeed exaggerating the effects.

Arriving Home

Now a Stroke Survivor I was on the way home having spent a little over forty hours in hospital.

Friends from the village picked me at about 6:30 pm. The journey home was a strange affair: I kept being asked how I was feeling and to be honest I had no idea. On a basic level I was still able to walk and talk so could be described as OK. But on the other hand everything had changed and somehow I felt anything but! The friends asked if Kate was home. I had no idea. I knew she was picking up the step-daughter but as to whether or not they had arrived home? Pulling up outside our house the answer became clear.

Thanking our friends I entered the darkness of the kitchen to be greeted by the dog, Bruce. Normally I turn off unnecessary lights but this time I wanted lights and heating on. Even though I had not eaten all day I was not hungry, but definitely in need of a shower. Feeling refreshed I settled down, with Bruce, to await my family’s return, which happened at a little after 21:00 having stopped to pick up a Chinese Take-away which the step-daughter had been “dreaming of” while in the Alps. After hugs all round, questions about how I was feeling and turning down a plate of Chinese I headed for bed at about 21:30.

The next morning, 1^st February, was the one when Andy Murray lost to Novak Djokovic in the Australian Open final. We woke early to watch the match, but to be fair I had hardly slept. Within minutes Kate had the bag of meds and the Apple laptop out, wanting to investigate each drug and define how and when I should be taking them. All I wanted was to quietly watch the tennis and see what the day brought. She being the sort of person who needs things sorted, and I’m sure worried and confused, it did not go down well when I suggested that there would be plenty of time to do the meds thing later. She could not leave it, even after the appearance of the step-daughter, so in the end I went to watch the game in the extension. Within moments I had first the step-daughter and then both of them standing over me telling me I was being unfair, they were worried and so I should just do as I was told. We eventually did watch the game but with a tension you could almost touch. Once Murray had lost, Katw and I headed into the County Town, to buy a blood pressure monitor which I used for the first time at 3 o’clock (207/121) and again at 18:00 (204/111) when I also took my meds, setting a pattern that continues to this day.

On Monday, I rose at about 8:00 am, having been awake since five. The partner and step-daughter were talking in her room with the door open. I called out “Good morning” but got not a peep in reply. I took my blood pressure (183/111) before my partner appeared in the kitchen. I could not stop myself asking her why they had ignored me. She tried telling me that they had not seen me. At that moment the step-daughter entered and when I said, “Good morning” again she got herself a drink and headed back upstairs without a word. I asked my partner what was going on and was told that neither of them knew what to say. I was stunned! When I pointed out that, “Good morning” or even “How are you?” would have been a good start all I got in response was anger.  Again I was shocked. Surely they had discussed the stroke, and what to do and say, during the journey from the airport. But apparently not! I was completely floored and pointed out that if they were having difficulties what did they think it was like for me.

After the mess of the morning we agreed that lunch in town was in order. I was ready first and waited, not particularly patiently. When they eventually appeared their foul moods were obvious. Leaving the house I realised I had forgotten my gloves and went back for them but when I got to the car the two women where in the middle of a full blown slanging match. There was no way I was going to engage with that so went for a walk round the village. Twenty minutes later a crying step-daughter came to find me and we spent ten minutes talking, during which she admitted to finding it hard and having no idea what to say. My response was that whatever she was feeling I had the same doubts, worries and questions, if not more, and that the only way through this was to talk and take care of each other, all of us. We eventually made it into town and had a pleasant lunch. I took my BP when we arrived home at about three (207/118) and again at around six (186/112) with my meds and finally at ten o’clock (198/117) just before going to bed.

On the 3^rd, I woke at 4 am but finally got up just before six, setting a precedent for the coming weeks and months, eventually taking my BP at 8 o’clock (176/104). The day was much quieter than any so far. In the late morning I received a call from the daughter of a friend, who had died some years before. She had seen my Facebook post and was calling to see how I was. I have known her for all but one day of her life. My partner overheard the conversation and later I got into trouble for expressing things I had not yet told the step-daughter. My partner’s anger was not particularly ameliorated when I tried to explain that I had only been answering questions not previously asked. I probably should not have added that our friend’s daughter had an empathy due to her having lost her mother at a young age and being diagnosed with epilepsy.

I took my BP a further three times: at 3 o’clock (170/97); at 6:30 (197/111) and at 22:00 hours (197/106).

Wednesday was the day the step-daughter went back to her ski season. I woke early, got up and tried to write. The taking of my blood pressure was fast becoming a bit ritualistic and settled into a pattern of four measurements a day.

Eight in the morning (190/112)

Lunch time normally at 1 o’clock (178/102)

Tea or dinner time at 6 pm (187/109)

Then prior to bed at 22:00 hours (191/104)