On Thursday Amanda had her angiogram in Wellington Hospital.

Our instructions were she could eat a light breakfast before 6am, only drink water after that and report to the ward at 10am. She was on the list for the afternoon, so nothing was expected to happen before 1pm.

To avoid getting up at ‘stupid O’clock’ for the 7am flight from Nelson, we travelled to Wellington the previous day. In the afternoon we walked to the national museum –  Te Papa; a 2km round trip from the motel and back. Amanda had already made up her mind she wasn’t going to eat breakfast the following morning, so I made sure she ate plenty the night before.

Amanda was allocated Bed No.8, a set of clean pyjamas and throughout the day, two different nurses and three doctors, increasingly senior in stature as the day slowly wore on towards the headline act –  Pierre; the surgeon who would carry out the angiogram.

Each one explained the procedure with increasing detail and medical terminology until ‘Pierre’ (the only doctor who looked anywhere near our age) made his entrance around 1pm.

When I mentioned the AVM he said he couldn’t see it on the previous scans and that since he did this all day every day, and an angiogram was the ‘gold standard’ he would get to the bottom of it this afternoon.

An hour later Amanda was wheeled off to a room just 10 metres away.

She came back just under an hour later, still woozy from the mild sedation and followed by Pierre who confirmed there WAS NO AVM and that as far as he could tell it had simply been a stroke; a blockage which had backed up and caused the burst artery.

No further treatment required. No trip to Dunedin, location of New Zealand’s only Gamma Knife.

I blame it on the sedative, but for the rest of the day, whenever I asked Amanda where she was (and I checked on a regular basis), she kept repeating… Dunedin.

It felt weird to see her back in a hospital bed in Wellington exactly 10 months later. This time she was fully aware of what was happening and, as the picture below shows, taking it in her stride this time around…

Before we left Pierre returned, having written his full report and confirmed once again, no AVM. he did however comment that compared to the previous scans, he could clearly see how Amanda’s brain is healing well.

As Amanda’s brain continues to recover I’m realising how subtle the depths and variety of our human emotions are as more of her ‘old self’ is uncovered by the new connections her brain is making every day.

These manifest themselves in a number of ways. We’re having more ‘everyday’ conversations, discussing news items, or things which have happened during the day, and she is just talking more in general. When I brought this to her attention she smiled.

“You’re finally getting me back!”

Another emotion which appeared for the first time this week was fear. When she was in hospital and subjected to a variety of invasive and serious medical procedures, she had no idea what was going on and now has no recollection of these.

Later this week we are flying over to Wellington and she is having an angiogram in Wellington hospital. This involves inserting a catheter into the femoral artery via her groin, sending it up into her neck and then injecting a special dye which will highlight the AVM in her brain. A series of  detailed x rays will then highlight its exact size, shape and location so the medical team can build up a 3 D image and then prepare to precisely ‘zap’ it using the only gamma knife in the country, sometime in Dunedin in early 2018.

The hospital sent an informative leaflet and I found additional info on the whole procedure. I started to explain the basics and I could see the concern on Amanda’s face. Apart from a couple of MRI scans, which are basically fancy x-rays, this will be the first invasive procedure in 10 months. I reassured her that worry was a normal and healthy emotion and was a good sign of her brain’s increased capacity. Despite this, she didn’t want to know any more.

As part of the same conversation I reminded her how she had been taught to walk again and offered to once more show her some of the photos from very early in her treatment (which you can view on some of the earlier blog posts). For the first time they really upset her and she said she realised what a close call she had and how she was thankful I had been around.

‘I nearly didn’t make it did I? I’m sorry. You didn’t sign up for this’ She said.

I reminded her that actually we both did.

It had just taken 33 years before one of us had to make good on that particular marriage vow.

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The other day Amanda remembered she has always worn a gold necklace, at least up until 10 months ago, and wondered where it was?

I had a very vague recollection of valuables being handed to me in a bag in Wellington Hospital and thinking I must put this somewhere safe. So I spent several days looking in potential safe places; handbag, purse, drawers – nothing.

Then, last night I had another look in the drawers next to her bed, this time with Amanda in the room. Still nothing.

“Pull the drawer all the way out and look behind it” She suggested.

I did.. and there it was –  a small zip lock ‘bio hazard’ bag containing earrings and the gold necklace which she has been happily wearing ever since.

‘How the hell did you…?

“I have no idea.”

Nearly 10 months post – stroke and there are still daily improvements.

Subtle, but perceptible.

More neurons are firing on an increasing basis, and there seems to be a cumulative effect. Once a door opens it remains firmly open.

So, there are now elements of pre-planning going on – For example pre-filling the kettle in the morning so it’s ready for the mid morning cuppa.

We watched a documentary on the 90’s. There was an item on the first Gulf War and a senior military figure came on screen.

‘Stormin’ Norman!’

It was.

Amanda cannot remember the 2 months prior to her stroke. That’s almost 12 months ago now. So weather – wise, season-wise and general atmosphere/ambience -wise,  now feels very similar to the same time last year.

The TV is repeating Master Chef from 12 months ago, and Amanda says she can remember it, Perhaps because all the circumstances around watching it are also the same?

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This morning Amanda went for a pre-angiogram blood test. The nurse asked her to confirm her date of birth and, without hesitation she reeled it off. Correctly, for the first time in 10 months. Just to check, I asked her again in the car on the way home. Correct again.

“So that makes you?”

“Fifty three.”

Mental arithmatic sounds like its re-awakening at last…

These new milestones seem to be coinciding with… Spring and the warmer weather, the addition of a handful of cashew nuts to the daily diet, )good brain food apparently) and the creative ability to concentrate for over an hour at a time on the adult colouring book which is now a permanent fixture on the dining table.

Maybe the damaged, left side brain is getting a little jealous of all the attention the creative right side has been getting lately?

On Tuesday I was away on business while my parents stayed over. During the night a storm cut the power at home so I knew Amanda would wake up to her digital clock flashing some random time from several hours ago.

When I got home I checked the clock. It was correct. To the minute.

I asked Amanda if she had worked out how to reset it?

For someone who cannot yet read the time aloud she had worked out how to convert the time on her wrist watch to digital and then how to reset the clock.

Aphasia still baffles me.

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Each night as she gets into bed, Amanda runs her hand across her face and checks if she still has her glasses on. Most nights she has remembered to remove them, although she still occasionally needs a reminder.

Last night she also ran her hand across the top of her head.

“Did you just check if you were wearing a hat?”

“Yes.”

“when did you last wear a hat to bed?”

We were still laughing five minutes later.

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Sunday was International Use Your right Hand Day –  at least in our house. I encouraged Amanda after reading about ‘learned neglect’ and how using her left arm helps her brain to forget the right one. It’s all about repetition.

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Finally, this week we watched a BBC documentary Speechless

It follows 2 men as they come to terms with their Aphasia. It struck me how one, despite 6 months of rehab and appearing to have the ability to walk again, chooses to leave hospital in a wheelchair.

I reminded Amanda, with a far worse bleed, she walked out in 3.

This week we made the 800km round trip to visit our daughter in Christchurch who celebrated her 21st birthday on Thursday.

It was kind of a postponed trip for Amanda as she didn’t feel up to the journey when I moved Jess from Wellington to Christchurch  5 months ago. But this time she was looking forward to a holiday.

If you’re not familiar with the road, it’s quite a desolate one, only passing 3 decent places to stop in around 5 hours. This was the first time we had taken the trip knowing we would have to use the disabled facilities ( Amanda needs a handrail to help her stand).

The midway stop, at Springs Junction, is at a small, totally inappropriate and unprepared cafe. Since the Kaikoura earthquake shut State Highway 1 (the main coastal route south), the route is the only one available to ALL traffic; cars, freight trucks and tourists alike.

The massive increase in traffic volume was thrust on this, and other rest stops literally overnight. They were not prepared. They are not big enough, and have not had time to improve or add additional ‘facilities’. So this stop has no disabled toilet. I just had to let Amanda wander in and queue with the other women. Of course, she managed perfectly well.

The disappointing facilities en route were more than made up for at our motel. Initially we were confronted with a shower over the bath; impossible for Amanda to get into or balance in. But a quick word with the owner secured us the suite with the walk – in shower.

We spent a few days eating out (Amanda managed to read the menus and select her meals but as always, couldn’t actually tell me what she had ordered!), and she managed to clock up over 5,000 steps on her Fitbit while walking around the post – earthquake, almost – rebuilt centre of Christchurch.

I planned our days to ensure we were back at our motel by around 3pm so she could still take her 90 minute nap and be ready for the second part of her day.

We booked both cats into their regular cattery, just a 5 minute drive from home. When we dropped them off Amanda stayed in the car and I briefly explained what had happened to her, to the owner. She then launched into how she had grown – up with strokes as her father had died of one when she was 2 and her brother then had one when she was 7. But at 70 years old her attitude was somewhat different.

First question –  ‘Has her face drooped?’ –  er.. no.

‘I won’t go and say hello it might upset her’. (She did, and it didn’t).

‘I won’t get too close, I’ve got a cold’ For a moment I wondered if she thought strokes might be contagious!

When we returned to collect the cats she had some interesting news.

“Possum (our eldest Burmese)… is sad”

She went on to explain she grew up on a farm and has been around animals, and particularly cats, all her life.

She can ‘read’ them.

She had deduced from the fact Possum didn’t do his usual growling at the other inmates, and then take it out on his brother, that he knows his ‘mum’ is unwell and is sad about it.

While I respect her experience and apparent feline -whisperer skills, I’m pretty certain that, at 14, Possum is just past caring about the other cats as he spends around 20 hours a day sleeping when he is at home, and intended to do the same while in the cattery.

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So, forethought… the ability to think or plan in advance – and previously one of Amanda’s key strengths, but totally missing post – stroke.

I’ve noticed it starting to return this week.

Things like checking I have a door key when we leave the house. The whole ‘have you done this, have you done that’ which, in any other context a partner might consider nagging, is actually a welcome sign, yet again, of a gradual return to previous form.

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This week we also received an apointment for Amanda’s angiogram at the end of the month in Wellington. This procedure involves inserting a tube into the femoral artery in the groin and then feeding it all the way up into the brain before injecting a dye which will highlight the AVM in far greater detail than a regular MRI scan can see.

From this the exact position and size of the AVM can be determined with minute accuracy and allows the neurosurgeon to make an informed decision on the next stage which is the gamma knife procedure; the non-invasive high dose x-ray which basically shrivels the AVM and for which I’m determined she will be wearing an Incredible Hulk T shirt…just in case.

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Finally this week, more colouring -in. The recent trend for adult colouring books has been a great opportunity for Amanda to unleash her creative right – hand brain and spend sometimes up to an hour concentrating hard on keeping inside the lines.

This week has been bittersweet.

The physio, with our agreement, has decided he has probably shown Amanda everything he can and now the rest is up to us.

She can walk.

Her walking has improved to the point she has now started to wear her Fitbit again and is aiming towards the recommended 10,000 steps a day we all should take. Today was nearly 4,000.

From nothing she has regained movement in her right hand.

There is still a long way to go. But while teaching her to use tongs to pick up oranges from a bowl might display technique, it bears no relation to using her hand in the real world. The physio has said the only way to continually improve is to use the hand for meaningful, functional  tasks. Amanda is now capable of controlling the basic movements  and only her own persistence and tenacity will fine -tune these.

He will return again in a month to assess how she is doing.

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On Friday we received the  8 – page neuropsychological assessment report written by a senior clinic psychologist. I read it first before reading it aloud to Amanda. it summarised the results of two interviews and a series of tests completed over 45 minutes.

The results, in clear, but cold and (literally) clinical language highlighted Amanda’s strengths and weaknesses. Tellingly, on at least 3 occasions it alluded to the seriousness of her brain injury.

When I finished, Amanda was quietly weeping.

At last, and for the first time in 9 months she was finally expressing an emotion the psychologist had suggested had been gently ‘sandpapered’ away by the ’emotional blunting’ caused by the damage to her brain.

“I’m never going to get better am I?”

I had to explain the report had just captured a moment in her recovery, 9 months on from her bleed, and reminded her how, earlier in the week the physio had told her that she would continue to improve physically.

We discussed the report again later, and again she cried.

“I’ve lost who I was and what I was able to do before.”

I thought for a moment and then I realised…

Finally, after all this time, she was grieving.

She was the last one left to cry about the situation she found herself in. The very thing which had caused her situation, had damaged the emotional capability to deal with it. But now, her brain had healed enough to allow her to open the floodgates and, as we had all already done, grieve for the person we had lost.

Perversely, the ability to express this emotion once more, proves she is still healing, and getting back to be the person she once was.

I told her about a Facebook post I had read where the writer was also upset  he had become a different person since his stroke. I had replied to him and said that most of us only get the chance to be one person in our lives. Stroke victims often get a second chance to be a diferent person. In Amanda’s case the canvas was almost wiped clean.

Halfway through the life of her physical body, her mind is getting a second chance, and she should sieze the opportunity to go in whatever direction it takes her.

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As further evidence of improvement. she mentioned our son was going to a pet show today. I asked now she knew and she pointed to his Facebook post showing the poster advertising the event.

So I decided to test her.

“So where is it?” I asked, noting the location in the bottom corner of the poster.

“Not sure, it’s in Maori.” So now she can read Maori??

“Er – is Porirua a place?” Yes it is, and it was the venue for the pet show.

So she had read the poster, realised some of it was in Maori, and then successfully read a an unfamilar word aloud.

I’ve been joining a few Facebook pages to learn more about stroke recovery, find out about the experiences of others and promote this blog. As a result it continues to get more readers.

The graphic on the left shows the views and countries so far. People from 75 countries have viewed this blog more than 23,600 times since I published the first post back in June.

The many Facebook comments (and a few here) show Amanda’s journey continues to inform, inspire and educate people, whether they are living with the effects of a stroke or not.

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This week, Amanda finally fulfilled one of the early predictions by one of her hospital therapists.

They had noted her brain injury was on her left side. So the analytical part of her thinking and reasoning would be impaired. Hence her continuing struggle to re-learn to read, write and regain numeracy skills. But that means her artistic and creative right side would now dominate.

So when I suggested she might like to give colouring a go she was keen.

I printed off a suitably detailed design and found a box of virtually un-used colouring pencils. I placed them in front of her and left her to it.

She concentrated for more than 45 minutes, carefully selecting the colour scheme and drawing bewteen the lines, holding the pencil  in her left hand.

While this might seem basic and a somewhat mundane task, it requires a variety of skills and motor/hand/eye co-ordination to keep it up for that long. She also said she enjoyed it, which is good as it’s a simple pasttime which she can pick up and put down whenever she feels like it.

The other project this week, which crosses over between both the creative and the analytical came as a complete surprise to me.

I came home from work on Wednesday to find the support worker had noted in the diary that Amanda had requested assistance in tidying her underwear drawer. Sure enough the previously ransacked appearance to the contents of both drawers was now both colour and item – coded.

To me, this was yet another milestone since it required initiative, forethought, planning and perserverence. It was not something she had mentioned to me beforehand, and whenever she had thought about doing it, she had remembered it until the person she wanted to help her with it walked through the door on Wednesday morning.

So in some ways a very subtle, but in other ways another significant event on this journey.

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Today (Monday) is a public holiday in New Zealand. Many smaller owner-operated retail outlets are closed for the day. Especially, and bizarrely cafes, whose lifeblood is essentially the public wandering the streets in search of food and drink, and a demographic in absolute abundance on any public holiday. particularly one  which occurs on a warm Spring day.

So after a leisurely drive through verdant  river valleys blossoming with blackcurrents, apples, pears,  beer hops, kiwifruit and grapevines, we stopped for coffee and cake.

Once we found the one cafe open in a street where at least eight were closed, we ordered and then waited twenty five minutes while the three staff slowly served the dozen orders behind ours, turning away at least another thirty people (who could clearly see more than enough empty seats to accomodate them) and actually suggesting they go down the road to McDonalds!

By the time we got our drinks and cakes, the rush was over and the staff were left with us and about six other people. No-one else to serve. They were all up the road paying a multinational global fast food giant to make them their coffee. When they could’ve had what we had (see below).

Amanda’s language therapist set her a challenge. She sent her an email with an attachment (see above) which Amanda then had to print out and anwer the questions below it.

Amanda has sat in front of our home computer just twice since her stroke. On both occasions she gave up after only a few minutes as she couldn’t read the news website I’d chosen as there was too much information on the screen.

Last Monday, both the language therapist and the occupational therapist spent an hour with her in front of it again.

Then the email arrived on Thursday.

So, I thought we’d start from scratch. The PC was already on and I simply told Amanda she had an email and waited to see what she did.

First, she located the Outlook icon on the taskbar with the mouse and clicked on it. Then she managed to navigate to the correct email from a list of 17 unopened emails, and clicked to open it.

She read it in silence and I saw the mouse move to the top of the message, where it hovered over the PDF attachment, which opened in a completely different program.

She then found the printer icon at the top of the screen and followed the instructions to print the garage sale ad (above).  I watched in silence.

‘What?” she asked, seeing the look of happy surprise on my face. This was yet another intuitive task she would perform a hundred times a week, which has suddenly returned.

She struggled to read the questions, but when I read them aloud, she could easily locate the correct answer within the text of the advertisement.

With the question in relation to start and finish times (which refer to her ongoing Nemesis – numbers), she could see the symbol ‘8’ but could not fnd the word. So she proceeded to count her fingers until she got to eight and knew that was the correct word for the symbol ‘8’. When I pointed out she had also used the fingers on her right hand to get to eight, she didn’t even realise she had done so.

So she has reached another landmark; subconciously using her right hand for the first time!

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I’m trying to encourage Amanda to use her right hand as much as possible as she has full flexibility and movement and says she can feel the pressure when she grips something. It’s just the fine movement which needs refining, and only constant practice will improve it.

So today, I suggested she try and peel an orange, at first using the right to hold and the left to do the harder work of peeling. She managed it with ease as the video below shows.

Amanda seems to have fallen into a pattern of having one or two more subdued days, when she might sleep a bit longer during her afternoon naps or less inclined to keep up her therapy.

But she then emerges from these with renewed energy and often a new landmark, like those above, will follow.

In addition her ‘external monologue’ has increased. She is talking herself through her day like she did pre-stroke. She’s initiating conversation, commenting on the TV news and expressing an opinion once again

I read that nuts, and cashews in particular can aid brain development. So as well as a generous handful of blueberries on her porridge she has also been getting a small bowl of cashews with her lunch for the past two weeks.

I’d like to think they’re helping.

A few weeks ago we were offered a couple of sessions with a neuropsychologist who would be able to properly identify which cognitive functions have been affected by Amanda’s stroke.

After completing an initial visit followed by a written questionnaire (which had a version for me and a version for Amanda), the second visit was a full 40 minute test.

The first questions were grammar and language – based. The Psych read aloud a list of 30 words three times and Amanda had to remember as many as possible. She remembered the first 5 but struggled to get any further.

Next were a series of questions like ‘What is water?’, ‘Why do we explore outer space?’ This time she managed a sensible answer each time.

Next, the number questions.

Amanda was able to remember a spoken sequence of up to 5 numbers. Then she was asked to verbally put up to 5 numbers into the correct sequence from lowest to highest.

Success again.

Finally, 3 questions along the lines of ‘if John has 4 children and 20 apples, how many apples does each child get?’ –  Versions of this got progressively harder, and this is where Amanda struggled.

The neuropsychologist concluded Amanda has lost her ‘working memory’; the whiteboard or scratchpad we all carry in our brain which allows us to formulate the first part of a puzzle and hold it while we work out the next part before putting the two bits together to give the answer. By the time Amanda has worked out the second bit, she has already forgotten the first!

This was clearly demonstrated this morning when Amanda was practicing reading aloud from the list below. She has an alphabet to hand to assist in identifying letters and can easily spot an upper case letter in the alphabet even though the actual word is in lower case. But, for example with a word like ‘fox’ by the time she gets to the ‘x’ she has forgotten what the other 2 letters were!

Bizarrely if I ask her to point to any one of the words on the list, she can do so straight away. So I could say “point to bridge” – and she points to bridge immediately. But if I point to bridge and ask her what the word is…she doesn’t  know.

I asked her if she realises how strange that seems , when she has been reading for the previous 50 years? Her response was that she could not remember being able to read and each time she looks at the letters it’s like trying to decipher hieroglyphics all over again.

But…

Amanda’s support worker has noted her multitasking has improved to the extent that she can now easily make lunch and a hot drink simultaneously. Also, during her 2 hours at work on Friday morning her occupational therapist noticed how well she can carry out tasks when they are in a work context rather than just exercises.

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Amanda was desperate to remember my birthday this week and had carefully noted the first day of October.  On the other hand, I had no expectation

So on Thursday morning as she showered, I answered the phone.

“Who was that?” She asked. So I had to say it was my parents to wish me happy birthday. She looked at me in horror and I had to tell her not to worry about it.

But on Thursday evening I came home from work to a chocolate cake. In the morning she had remembered to ask her support worker to help her bake it, and then when she returned at lunch time, Amanda iced it. Amanda then insisted I take the cake to work on Monday morning.

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Physio Jason continues to challenge Amanda with new tasks. The latest videos, which he records on Amanda’s Ipad so anyone else can see what he wants her to (re)learn, shows why learning to grip the clothes peg was so important a few weeks ago. This has now progressed to practicing holding a plastic cup (see below).

Most evenings, about 90 minutes after our meal, Amanda gets peckish for something sweet. I usually offer her fruit and yogurt; sweet but usually healthy.

In the past few weeks I’ve been making cakes so she can have something home – made with her morning and afternoon tea.

So on Monday, she knew there was cake in the house…

For the first time she stood up and made her own way to the kitchen.

“I’m going to get some dessert.” She said confidently. I followed a few steps behind, just to make sure.

She opened the cake tin and stared at it.

“I don’t know what to do next.”

First I asked her how she was going to eat the cake?

“Ah, I need a plate.”

Then, how was she going to get it onto the plate?

“I need a knife.”

She was back on track

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Monday night was the premiere of the new Star Trek series on Netflix. Humans and Klingons meeting for the first time in 10 years. Except the Klingons in this series speak Klingon… only Klingon, with subtitles for those of us not fluent.

Lots of subtitles.

Despite Amanda saying she can read, she certainly can’t keep up with subtitles on TV yet. So I volunteered at the start to read them for her.

Klingons are a mighty warrior race, steeped in ceremony and tradition, and this was reflected in the flowery language and extensive dialogue which I felt obliged to inject some drama into. I was woefully unprepared for multi – characterisation and lengthly speeches.. and episode 2 was no better!

I felt like a United Nations interpreter!

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On Saturday we ventured to the Nelson Home & Garden show. Imagine the picture above, but with hundreds of people. This was the largest crowd Amanda has attempted since her stroke.

She bumped into people and trod on a few toes. But her hand splint proved a good way to elicit  motivating smiles. The hour walking around what felt  like a heaving Indian market left her tired for the next 2 days.

As a result, she struggled with some simple spelling on Sunday evening. Words like ‘fox’, ‘car’ and ‘bed’ proved difficult.

Yet an hour later, as we flicked through the TV looking  for something to watch, she stopped. The TV caption was clear.

“Look, a Marvel series.”

Three letter words might have proved hard, but this was the frist time she had read a word aloud from the TV.

She can read her own Klingon subtitles next time…!