How I coped with a stroke

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broken brain

Recently I had a brain-attack (or a stroke).

I have had regular disasters over the years but have always been healthy in between.

This time, I was lying on the floor doing back exercises about 11pm at night, watching some crap TV.  (That’s all that’s on, night and day.)

Yes

My wife Sue came in to see what I was doing, and the only word I could utter was “yes.”

I knew something had happened  — my memory and intellect were unaffected — so Sue rang for an ambulance.

While waiting (it took about an hour to arrive), I walked around, stared at myself in the mirror, played the piano (slipping from bad to very bad), and continued to answer “yes” to all Sue’s questions.

The ambulance arrived, parking at the bottom of the driveway (it is very steep). I walked out and down to the ambulance with the driver thinking, “Who is this weirdo and where is the casualty?”

Sue knew I was making no sense when the driver asked me if I was a diabetic and I said “Yes.”

Hospital nightmare begins

At the hospital, it all went to plan. A nice young neurologist — who looked about 15 — pronounced that I had had a stroke (I knew this) and sent me away for brain scans.

The speech was the only thing affected and I thought I could leave pretty quickly. Next thing, speech pathologists, tongue pathologists, balance and equilibrium pathologists (I am not balanced or equilibriated at all), more neurologists and occupational therapy-ologists all descended upon me.

There were three “onomists” there also. An agronomist looking for farm animals, a lost economist looking for reason and logic (aren’t they all?) and an astronomist  searching for extraterrestrial life.

I would walk all over the hospital trying to relieve boredom, but it was sterile (just as well), barren and depressing.

Olivia Newton-John Cancer Centre

Sue and I discovered the Olivia Newton-John centre for cancer treatment which had just been finished. It had gardens and places to eat and drink, so we used that a bit. It is an holistic centre, which is a good sign, as chemotherapy destroys lives, even more than cancer. Some nurses showed us around — they were under-employed as only a few departments had opened due to financial restrictions (bloody economists again).

Improving

Within 24 hours I had improved greatly, recovering speech — though a bit garbled (many never noticed the difference) and my memory was a bit off.

The tongue-ologist visited me twice and pronounced me fit for a normal diet. But they had left a card over my bed saying I was only fit for soft and mushy foods, so that was all I got. I protested to various people but it was cast in stone, so all I received was gooey stodge.

Setback

Then, when I was looking forward to going home after one week, they decided to send me to Royal Talbot for speech therapy. I had continued improvement, doing crosswords and trying to read, so I thought it was a waste of time. They insisted and so I went.

I fretted here for another two weeks, realising I was perfectly fit, could manage by myself and my speech and memory were nearly back to normal. The tongue-ologist thing followed me across to the Royal Talbot where sometimes I was treated as normal and other times I was back on the mush.

Though all I wanted was to come home, I took a great interest in the patients and the staff at the Royal Talbot.

I was dumped in a bed and ignored for five hours in a room with four other people. They all had wheelchairs and three of them couldn’t talk. The one who could talk didn’t want to speak to me.

I had the idea that speech therapy would start immediately, but this was a branch of the Austin where being ignored is an art-form, and it aggravated me until I left.

I had useless occupational therapy (which I didn’t need), useless swallowing exercises (which I didn’t need), useless neurology (they tried to make me re-arrange squares, circles and blocks which I have never been good at), and speech pathology. I quite liked the two girls involved and decided to participate fully, knowing that I would get out of there quicker if I passed all their tests.

In the meantime, I started taking warfarin again. I had been on warfarin for about six or seven years but continual nose-bleeds had forced me to stop. I should have had my nose cauterised, but I made the wrong decision—I have since had it cauterised.

Rebellion

Meanwhile, the doctors had ordered a very strong statin for cholesterol and blood-pressure tablets also. I have taken all this stuff before with bad side-effects. I would honestly prefer to die rather than to take these tablets, and I was sick of telling every doctor about it (which was always ignored), so I threw them into toilets or in waste-medicine baskets when no-one was looking.

There is a strong hierarchical system both at the Austin and Royal Talbot. Heads of neurology are treated as gods, while registrars and other doctors address them with reverence.

There was a hierarchy of nurses also, but the people I liked most were the orderlies, the cleaners, the gardeners, the odd-jobs man and the people who served up the food (except when it turned into Mush yet again).

The girls who ran the speech pathology involved me in games with other patients. Most were wheel-chair bound, couldn’t speak and had some brain damage (and they all beat me). These were from accidents, MS,  cancer treatment (side-effects from chemotherapy), or just bad luck.

The girls were excellent, treating all patients with dignity. I was quite happy to be beaten in games of UNO and bingo as we all tried to lighten their load. There was not much hope for any of them, but all the staff (except the doctors who operated from an ethereal plain) treated them generously and kindly with extreme patience.

I’m in trouble

One example of the hierarchies in this hospital was when I imported a few tablets.

I couldn’t sleep (not at all unusual) so instead of waiting for nurses to supply me with tablets (after contacting  every doctor in the Neurology Clinic, and then quite often forgetting), I smuggled in some Temazepam from home.

Like a dill, I left them on a bedside table and then All Hell broke loose. A nurse snapped at me, “ These will have to go in the safe. They weren’t prescribed here.”

After arguing, the head nurse was brought in for adjudication and said that the sleeping tablets would be kept in the safe and doled out to me at night. Of course, they never were — nurses change every day and no-one knew about it.

They let me go home on weekends . Sue would pick me up at 11am Saturday morning and bring me back by 4pm on Sunday.

I was so happy to be back with the dogs and the busy daily routine of not doing much at all. (Nothing has changed, then.)

The spacing between my various therapies had stretched so that I only had two or three  appointments in a full day, so when Friday came and there was nothing after 11am, I casually suggested that I could go home as an extended week-end. The big problem is that the Talbot centre is paid on a per-head basis, so I was knocked back.

I pleaded with various people to just lie, say I was there but couldn’t be found (I was wandering all over the place anyway, just to relieve the boredom).

People kept worrying about me, A nice nurse got into the shower with me (to see whether I washed all bits), I was taken shopping at Coles (I hate shops, shopping and particularly Coles) to see if I could purchase stuff. I was ordered to make a cup of tea (I have always been excellent at this), to prepare breakfasts and lunches for myself, and to keep fighting the doctors who insisted on feeding me toxic “medications”.

The Great Escape

I was really happy to escape all this, and I have the highest admiration for all those nurses and occupational therapists who stay cheerful, optimistic, and dedicated as they promote well-being in some of the sickest, saddest people in our care.

After this, I went to a speech pathologist at the Bundoora Extended Care for about 6 weeks.

She was again, excellent, but my speech (she was concentrating on articulation) was improving all the time ( doing cryptic crosswords helped).

Here I had to see an OT also. I had told her I was riding my bike and had no problems, so she gave a tick of approval. However, she rang me and told me that a doctor (further up the chain of hierarchy) had said she would have to ride with me to prove I was OK (more fear of litigation).

She came out to Hurstbridge with a clunky old bike she had borrowed, so off we went. I felt pity for her as she struggled up hills (her gears weren’t working), so I suggested we had done enough (I hadn’t hit anything or fallen off).

That’s about it –  from now on hospitals, medical treatment and me are mutually exclusive (I hope).

Robert Gosstray

Robert Gosstray is a retired pharmacist and the resident health writer for Midlifexpress. He is the author of The Pharmacist's Secrets: Drugs, lies and money.

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