Over the last few weeks there have been more glimmers of improvement as Amanda’s brain and body continue to slowly recover and progress towards her pre-stroke fitness.

Firstly, small but encouraging developments with her executive function. For example late one afternoon after her nap she went into the kitchen and emptied the dishwasher. When I asked her she said;

“I intended to do that when I got up.”

Intention requires planning and forethought… which requires an element of executive function.

When the weather is fine we go for walks in the evening But as the autumn draws the darkness in, instead of spending the evening in front of the TV, with the agreement of the doctor, now is the right time for Amanda to join the gym (which is open until 9pm), and begin a proper regime to get her limbs working, her muscles re-toned and her overall body strength increased.

It will begin very slowly to start. Making sure there is enough equipment she can use safely and easily. The gym staff has agreed to help and provide her with a program to suit her limited abilities. The plan is to begin after Easter so watch this space!

It’s hard to find the time to supervise Amanda to practice her writing every day. This evening we spent 20 minutes checking how Amanda’s literacy is progressing. It’s been a week or so since I sat with her and in previous sessions it’s taken a few minutes for her brain to ‘warm up’. We’ve been using the words shown in the picture to create simple sentences.

I started by asking her to create ‘THE BIG DOG IS SLEEPING’. She did this straight away, no warm up required. I then removed the board and asked her to write the same sentence. She also did this perfectly. Finally I tried something different; something her support workers had noted in the diary, but I hadn’t tried before; reading.

I laid out a 4 word sentence and asked Amanda to read it aloud. With a few hesitations she managed it. I tried again, adding an extra word.

Success again.

Finally, a six-word sentence –  Mission accomplished.

With no warm up required or separate visual alphabet to refer to, this is clearly a step forward.

While making a cup of tea at the weekend I mentioned the other flavoured teas which have languished at the back of the cupboard for the past year. Today I found her looking through these and discovering the Berocca tablets. She asked what to do with them and I reminded her how you dissolve them in water to give you extra energy and vitamins to face the busy day ahead. Tomorrow she has her weekly 3 hours at work. So she wants to make sure she takes a Berocca this week.

The other thing I realised this week? Amanda is no longer asking me at least 4 or 5 times in 10 minutes how my day has been when I come home from work.

All these small, subtle signs would easily go unnoticed in other circumstances. But once again our strong bond and familiarity with each other allows me to see things which, if missed could easily just validate the myth of a recovery plateau.  Yes, many of the major milestones have long been achieved. But we intend to keep going until there is no more room to recover.

We’re nowhere near that yet.

So, the Smart Watch has thrown up a number of unexpected benefits, not least of which has been encouraging Amanda to use her right hand.

I swapped it onto her left wrist so she could feel the vibration which reminds her to move every hour. This means she has to use her right hand to put it on and take it off.

Before Christmas her physio encouraged her to hold a clothes peg between her thumb and forefinger to strengthen her finger grip. He said that this, combined with a wrist flick is the motion required to turn the key in a lock. Turns out it’s also the same movement required to undo a watch strap.

Exercises should have some meaningful purpose and until now Amanda has been very reluctant to use her right hand just for the sake of demonstrating she can move it. But now, with her watch on her left wrist, there is a practical reason to use it. So at bedtime she now tries (and mostly succeeds) to take off her watch.

The other obvious benefit of the watch has been the step counter which has her doing laps around the kitchen island if she thinks she hasn’t walked enough during the day.

The only complication is shopping. When she is pushing the cart, presumably because of the position of her arm, the watch thinks she is cycling!

She is still in the early stages of physical recovery and so as she continues to become more active the various features of the watch will become more apparent to her.

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I’ve decided she is no longer recovering.

After 12 months and having recently been discharged from the care of the hospital neuro team she is now simply getting fitter, both in body and brain.

So from now on this is a journey back to fitness, mentally and physically.

Amanda only sleeps on her back. Although she can roll,  sleeping on a side you cannot properly feel is apparently unnerving and so she doesn’t move all night, even subconsciously in her sleep. This means if she snores, she doesn’t move to relieve it.

I suspected this has been causing sleep apnea. Her doctor took us through a checklist and as a result she will get public funding to investigate it further. While we were there I also mentioned she is still concerned about her swollen legs, caused it appears by her general lack of regular mobility.

I mentioned to the doctor I was aware there is a local specialist who is able to perform lymphatic massage . This is commonly done for women post – mastectomy and consequently the masseur is in high demand. Once again the doctor put Amanda’s name forward to have it publicly funded.

So even a year post – stroke the New Zealand health system is still coming through for us. Perhaps this has something to do with the fact the doctor noted she hadn’t seen Amanda since shortly after she was discharged from hospital last May.

Finally, on one of this week’s evening walks, Amanda stepped off the kerb and veered into the road. I told her to watch out for oncoming cars.

“Don’t worry.” She said.

“I’m indestructible”

As Amanda continues to progress she becomes increasingly more self- aware of her situation;  a positive sign  her inner voice is beginning to return, which gives hope that her decision making and planning capacity will also improve.

She is obviously getting frustrated at her physical and mental capability, commenting a few days ago;

“I wish I had more ‘oomph’.”  A perfect description for what you might also call your ‘get up and go’ – or what the experts call Executive Function. I told her to harness that frustration to motivate herself to do more. An inability to self -motivate has been holding her back as she clearly has the ability to do more if only she could remember from one hour to the next what is was!

But there are clear signs that show continuing improvement.

With a large storm bearing down on our part of the world, the media has been full of warnings and advice on how to prepare. Amanda looked out of the window and suggested I move the wheelie bins into the garage and also put the car in there as well. She checked out the window to make sure there were no loose objects in the garden and that we had enough food, just in case.

Planning and forethought.

As a result of the impending ex-cyclone I decided to postpone her hospital appointment in Wellington. As it transpired Air New Zealand subsequently cancelled all flights so we would have been stranded had we gone.

However, at the allotted time of her appointment the consultant unexpectedly phoned. I put him on speaker so Amanda could hear him confirm the angiogram 3 months earlier had found no underlying cause for her stroke and that, after just over 12 months they were finally discharging her from their care.

Afterwards she watched a recent BBC Horizon documentary –  My Amazing Brain – the story (so far) of a recovering stroke survivor with similar issues to Amanda. I pointed out to her how it has taken Richard (the subject of the film) over 4 years to get to the point he is now at, but that with persistence and repetitive exercise and therapy, whether mental or physical, anything is possible. Highly recommended if you have access to BBC IPlayer

For her recent birthday I gave her a Gear Fit Pro – a smart watch designed to monitor fitness.  A slightly more lavish present than usual since she missed out on one this time last year.

The benefit for Amanda is that it can track her steps (as her Fitbit does), but also prompt her to move if she has sat still for too long and also set her some exercise goals. Once she gets the hang of it she can also connect to Spotify to play music, and eventually use it for more vigorous movement such as possibly running and even swimming. The other benefit is that I can monitor it remotely from my phone.

At one point this morning she was practicing her spelling using an app on her ipad when her watch vibrated on her wrist reminding her to do some gentle exercise by showing her images of how to gently stretch.

Technology can be wonderful. But you can still only (re)learn to write right – handed using old fashioned pen and paper.

Last Thursday, the views on this blog suddenly increased hugely. Six months ago I wrote a piece for the New Zealand news website STUFF and they had asked me to keep in touch. I sent an update to Amanda’s story about 3 weeks ago and they had finally published it, together with a link to this blog.

As a result, since Thursday afternoon this blog has had 7,000 views in 6 days, and her inspiring story continues to be read.

I made sure Amanda was not  aware it was the anniversary of her stroke.

Although a year of continuous recovery is significant, the event itself is hardly something to celebrate or commemorate. Flowers were suggested but I said that the day should be just like any other and making it ‘special’ might do more harm than good.

Despite this, Amanda decided (unknowingly) to mark it in her own way.

During the evening she decided it was time for dessert. Without suggestion or prompting from me, she got up, went to the kitchen and served up apple pie and ice cream for both of us before proudly presenting mine to me. This is the first time in a year she has independently got food and it demonstrated to me that her executive function capabilities are slowly returning.

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After 10 years a spotlight bulb in the hallway stopped working. I fitted a replacement; a more efficient but much brighter LED bulb. The difference in light, in an otherwise gloomy hallway is quite marked, and, without thinking I asked Amanda to take a look. She walked into the hall and looked up. Instantly she stumbled against the wall, momentarily losing her balance.  I realised the sudden bright light had affected her in a similar way to how strobe lighting can induce seizures. Luckily the effect was only limited to mild disorientation and a swimming head. Anti –nausea pills prescribed as a precautionary measure 6 months ago took effect within half an hour.

While sitting recovering, I suggested she practice some spelling using her Ipad app. It’s probably a coincidence but the sudden flash seemed to also give her brain a boost and she whizzed through words like ‘butterflies’ and ‘wheelchair’ much faster than usual.

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Yesterday was her 54^th birthday.

Last year’s birthday was spent comatose in the ICU in Wellington Hospital. But this year she was taken out for breakfast and then later, we re-instated our annual birthday evening tradition of fish and chips on the beach.

As we sat in the car eating I told her that I didn’t think we would ever do this again, and to me it was a real mark of her recovery so far that she was able to do this. Unfortunately, due to a recent storm,  she was unable to access the beach, but we stood pretty close and agreed that it was teamwork which had got her this far and we would do the same thing, same time next year.

She enjoyed the day, but is paying the price today. More dizzy spells and as I write, this afternoon’s nap is now nearly 3 hours long and counting!

As the first anniversary of Amanda’s stroke approaches, I reminded her that a year ago this weekend we were busy painting the window frames at the front of the house.

She said she has a vague recollection of this.

For at least 6 months after her stroke she couldn’t remember anything from the 6 months pre-stroke. This recollection indicated that the memory has always been there. The fact she can now recall memories from just a few days before the stroke shows that through  the trauma and damage, her brain has managed to retrieve and recall something which is now long term, not short term. Her brain is now using a different area to remember this memory. It appears that we also use our ‘working memory’ for short term memories as well.

I decided to test her working memory again today by laying out 6 objects on a tray and asking her firstly to name them, once I had covered them up again, and then tell me which one is missing when I removed one.

At first she had difficulty naming each item, particularly for some reason, the glasses case. But by describing what they are used for she managed to use logic and deduction to correctly identify them.

She didn’t so well with the list once I’d hidden the items but had a 50% success rate identifying the missing item.  To demonstrate it’s not just a recall issue I then asked her to name members of her family.

She managed 14. Working memory still needs work.

Another milestone this week is showering.

As I’ve mentioned before, I’ve been standing in the bathroom while Amanda showers each morning. In the early days this was in case she lost her balance or forgot the routine. This week she has been  making her way into the bathroom alone and getting as far as stepping  out before I have to intervene as she cannot dry her own back thoroughly yet. I’m just listening out for the water to stop and that’s my cue to go in.

Also, a week or so ago I mentioned on a few of the stroke Facebook pages that Amanda pours shampoo directly on to the top of her head so is unable to see how much she is using (… a lot!)

I asked for suggestions to manage this. The most popular suggestion was a pump dispenser mounted to the wall. But another was to pour the shampoo onto the palm of her affected right hand and then scrape it off with the left. I decided the pump dispenser was just enabling the disability, so instead suggested she try the other method.

So now she pours shampoo into her right palm, and scrapes the majority off with the left before making an attempt to rub any remaining shampoo onto her head thereby re-training and strengthening her right arm and shoulder.

Our marital telepathy is also repairing itself. Every afternoon after her sleep, if I’m at work, Amanda will make herself a cup of tea. If I’m home, I’ll offer to do it. Yesterday I came back from the gym as she was emerging from the bedroom. She just smiled and said,

“Yes Please.”

On Friday we were watching a comedy show on TV where the comedian began his routine by lamenting the ‘sadly departed David Bowie’. Amanda looked at me.

“David Bowie’s dead?”

I reminded her how he had released his final album the day he died.

Black Star.

Blue Banana.

Her Aphasia is in good company.

With Amanda’s working memory skills slowly improving, she isn’t  yet at the stage where she is able to venture into the kitchen other than to prepare breakfast, a hot drink or a sandwich. Things like planning, setting goals and carrying out sequenced tasks still require work and, like everything which aids improvement, constant repetition.

On Sunday I prepared a roast chicken dinner. I thought I’d test her knowledge so just asked;

“So, what would you do?”

She thought for a moment and then, slowly but surely listed all the ingredients, the utensils and pans required, how to prepare the meat and vegetables and even the correct temperatures and cooking times.

I’ve also noticed subtle improvements such as taking the initiative by making sure doors and windows are shut or putting partly eaten food into plastic bag or containers. While these sound simple and obvious, behind these mundane and everyday tasks is a highly developed hierarchical decision-making process which as fully functionng adults we all take for granted. Its only when these faculties are damaged or disappear that simple things become impossible to work out and have to be re-learned.

One ongoing challenge has been keeping in touch while I’m at work –  a 30 minute drive away.

When Amanda left hospital a medical alert bracelet was suggested. But she was discharged because she wasn’t sick. Neither did she have any ongoing illness.

She is recovering.

While her walking required ongoing therapy, at that point (and still) she has never fallen. With a support worker currently visiting for 2 hours per day her longest period alone is 4 hours – one of which she usually takes a nap. A medic alarm would not allow me to monitor her.

Coincidentally a month before her stroke we had installed a security system which can be monitored from a smartphone. The camera which originally pointed outside now sits at one end of the kitchen allowing me to check she is OK whenever she is in there.

The other issue was being able to check on her in the lounge, remotely. I eventually stumbled on the fact that if you have a Google account, it allows one device to access another. This means my smartphone can access the PC in the lounge and switch on the cheap webcam attached which points at the chair where she sits. By displaying the image on the PC screen I’m able to also see it on my phone.

Finally, after the frustrations of trying to re-teach her how to text, I realised Facebook Messenger has a video call facility.

When I call her phone it brings up a big green camera icon which is very easy to identify and press. With wifi at home and at work this allows us to talk whenever we want. This means I can give her reminders about exercising or emptying the dishwasher.

Motivation on a little but often basis is the best way to help her maintain concentration and avoid fatigue.

Amanda was fed by a strictly – controlled nasal drip for the first three weeks after her stroke. For the following 3 months, except for occasional weekend visits home and food I took in, she ate a perfectly acceptable hospital diet, rotated, we soon discovered, on a fortnightly basis.

As many will know, stroke recovery takes an enormous amount of both physical and emotional energy. So, despite being relatively immobile for a few months, she lost a considerable amount of weight.Perversely this made her look younger and healthier!

She was discharged from hospital in May and from that point she has eaten a healthy home -cooked diet; plenty of fresh vegetable and fruit, nuts and with the onset of summer, lots of berries!

But as her body and mind recovered, a combination of a bad winter and post-stroke fatigue meant that Amanda was unable to exercise as much as she probably should have.

So, post- Christmas she has decided to challenge herself (aided by a Fitbit and a lot of prompting and encouragement by me), to walk 10,000 steps a day.

Things started OK and she was soon heading towards 7,000 steps, despite this summer’s sweltering temperatures.

We had already discovered that after walking for around 30 minutes her affected right leg would begin tingling in a similar way to when feeling starts to return after pins & needles. We took this as a positive sign that normal feeling is slowly beginning to return.

On Sunday, after a 60 -minute walk around the local streets she sat down and wiggled her right foot.

“Ow, that hurts!”

Amanda’s right leg and foot has been swollen for a few months now. The doctors can find nothing medically wrong and we’ve put it down to a lack of muscle stimulation affecting blood flow. Her legs are beginning to look noticeably less swollen as the walks have increased in distance.

Another effect of her stroke is both right wrist and ankle weakness and they both tend to roll inwards. She wears a splint for 6 hours a day to counteract the spasticity in her wrist but her ankle has no such support and I’m unable to roll my own ankle over as far as hers goes involuntarily even when sitting still without causing myself pain.

On Sunday her right ankle was noticeably swollen. When she stands and puts the foot to the floor sensation disappears and she can walk normally and so any potential damage is masked.

The fact she is feeling ‘proper’ pain in her right foot must be a positive sign her nerves are healing and not just sending confusing random messages.

So a visit to the doctors is booked for tomorrow when hopefully we can get the painful ankle diagnosed and treated so we can can back on track to 10,000 steps.

Christmas 2017 was always going to be… different.

Christmas in New Zealand coincides with the main summer holiday break. Having emigrated from the UK, the novelty of a summer Christmas has still not worn off even 15 years later. So this year, like most others, we have stayed at home and convinced ourselves we are ‘away’ on holiday.

As the weather has warmed, Amanda has continued to improve and so has her ‘executive functioning’ capacity; the set of processes that all have to do with managing ourselves and our resources in order to achieve a goal.

Basic stuff like personal hygiene and simple food and drink preparation has slowly expanded, and the approach of Christmas has helped to drive that improvement.

In previous years Amanda has mostly planned our Christmas week menu, purchased and wrapped the presents, written and sent the cards and prepared much of the food.

This year, after 30+ years of apprenticeship, it was my turn.

Amanda’s attitude to Christmas this year has also been… different:- She is fully aware of it, participates and enjoys it and helps out when asked. But this year she displays no concept of how it all actually happens. Luckily having had 2 children and noted the similarities between recovering from a brain injury and childhood development, I had anticipated this

But there are sparks.

She questioned if I had sent cards to all the usual people and continues to remember where items which are only used at this time of year have been stored for the past 12 months. She checked I had bought presents for people and what these where and she certainly understands she has lost a vital set of skills, at least temporarily.

For the first time this week, when she saw on Facebook that it was a friend’s birthday. She sent her a birthday message, carefully typing out ‘HAPPY BIRTHDAY’.

Yesterday we went to the mall to collect Amanda’s new glasses. So far she has wanted to leave for home after only a short while, overwhelmed by the sensory overload. But this time, she wanted to go for a wander around (bearing in mind the sales are in full swing).

She headed for a clothes store, two in fact, and eventually found a new top she liked.

It turned out she fully intended to do all of this, but didn’t think to tell me. In other circumstances why would she? after all, executive function just happens. If we need to discuss it, or justify it, or ask permission then we cease to be individual.

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Thank you all for reading,  sometimes commenting, and generally supporting us on this weird, unplanned and eventful journey so far. I read out all your comments to Amanda and she is always bemused but grateful that complete strangers take time to check on how she is doing each week.

See you in 2018…

One of the things which surprised me about Amanda’s otherwise comprehensive treatment and rehab program was the lack of attention the hospital team seemed to give her apparent  partial loss of eyesight and hearing.

As part of her right side neglect due to her brain injury, they noted her initial obvious difficulty in seeing food on the right hand side of her plate. They also noted she had issues looking down to read.

Apart from holding a pen in front of her eyes and asking her to follow it, they did no formal eyesight testing.

So it was left to me, once she was able to get around, to take her to her optometrists (she has worn contact lenses since her teenage years), for a thorough eye exam. I mentioned that visit in a previous blog.

This week Amanda went back to the optometrists.

Although he had suggested a revisit after 3 months, I wanted to leave it longer so any improvement would be more noticeable. This time he noted that, although there seemed to be no further improvement in the optic nerve, her peripheral vision has improved, as demonstrated by the reports below.

The dark images show where her ‘blind spots’ are. There is a marked improvement between April  (left) and December (right).

As for her hearing? I suspect there is some loss as she asks me to repeat stuff a lot more since her stroke, an issue which I think is hearing related rather thnn about comprehension. I’ve also noticed the TV volume is now set a little higher than previously. But she has never complained about her hearing, so at the moment I see no need to persue it.

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I haven’t tested her reading aloud capabilities for a while, and her regular support worker often notes in our communication book that Amanda has been practicing her reading. So I decided to give it a go.

I chose a page in a magazine showing an ad with large type and only four main words. She struggled with the first letter  – ‘S’. So I asked;

“What’s the first letter of the first word?”

She pointed to it.

“That one.”

Proof, once again that aphasia doesn’t mean you lose your ability to be smart, or the ability to be cunning in hiding your deficiency!

POSTSCRIPT

Shortly after posting this I was contacted by an audiogist who offered the following:-

I’m an audiologist Matt & want to comment that you’re possibly confusing Listening (an active, ongoing, decoding-type, brain-level activity) and sound Detection (much simpler, ‘can you notice this or not’ ) which is of course the basis for Listening, but occurs in the ear/lower brain circuits rather than higher up & it’s what I think you mean by “hearing”.) Might be wrong, but the words you used led me to think that.

Hearing loss as depicted on an audiogram (what you get if you go for ‘a hearing test’) is about recording sound detection ability, not the decoding of sounds & particularly of speech – at brain level. 
I personally don’t (yet) have any peripheral hearing loss but post-stroke I have great difficulty in background noise, largely because of my inability to multitask, plus loss of some figure/ground ability. These are cortical problems. People ALWAYS try volume increases when they’re having difficulty listening because they have learned that any improvement in signal to noise ratio helps overall.

One evening last week, I deliberately left Amanda the kitchen after dinner so she could attempt the washing up on her own.

I came back a few minutes later to find her busily scrubbing the dishes. She looked up, confused.

“How do I make the bubbles in the water?” I looked in the sink to see just hot water.

“What is it you’re doing?”

“The washing up.”

“Again..”

“The washing… Ah! washing up liquid!”

The gap needed to make those connections is so small sometimes.

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On Saturday we went to a social event with some of Amanda’s work colleagues. Her job was to take dessert.

I came home from work on Thursday to find her with a handwritten cheesecake recipe on a scrap of paper. It was the recipe she wanted to use and so she had found it hidden amongst  her shelf of more than 80 cookbooks and assorted folders. She had remembered it, knew where to look and successfully recognised it and dug it out.

I helped her make it ready for Saturday.

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So as it gets nearer to the anniversary of Amanda’s stroke, Christmas also fast approaches; something she has no recollection of from last year.

But Christmas is about tradition, and every year Amanda always decorates the tree, and since this will be the 34th year she has done it, I figured there would at least be a memory of how to do it!

One of her awesome support workers agreed to help her and so I went into the garage to try and find where she had hidden the boxes nearly a year previously. If found them all – but not the lights.

“Any ideas?” I asked hopefully. “I can’t even remember last Christmas.” She replied. I eventually found them and added them to the three large boxes waiting for Becky to arrive and assist the next morning.

Becky was here from 9 – 10am. I checked the webcam at 11am just in time to see Amanda get up from her tea break and move out of shot to the front of the room. Later, when I came home, as I suspected, she confirmed she had carried on with decorating the tree after Becky had gone.

The room looks exactly as it does every year. She remembered.