With Winter in full swing in the Southern hemisphere, Amanda is reluctant to go out for a walk in the cold, even when the sun is shining and the temperature struggles into double figures. Evening walks are currently not an option as it’s dark by 6pm.

I saw an exercise cycle you can use from a chair advertised on TV – one of those long ‘infomercial’ ads where they don’t tell you the price unless you phone the free number. I checked on Amazon and they were more than $300. So I looked for a cheaper version and found the one pictured below for $40.

Amanda is now able to sit and watch TV during the evening whilst pedalling in a dining chair. I set the stopwatch on her smart watch so she can monitor her progress. She can pedal for 20 minutes at a time but is determined to build up her stamina and do more.

Amanda is also keen to rebuild her cooking skills. With the damage to her executive functioning capability, she has difficulty with planning and sequencing tasks. So cooking is an enjoyable way to relearn those skills

With her support person, she had decided that Tuesday mornings are the best time for this. So she spends time looking at her many cook books and decides what she would like to try. So far has made carrot & coriander soup. …

This week she decided on cheese scones.

Browsing the cook books has highlighted that my cooking repertoire, which has sustained us for the past 24 months is, nevertheless limited. So over the next few weeks we’ve agreed to go through the books together and choose some different meals which we can cook together – and there are plenty of books to choose from!

Another effect of the further lifting of Amanda’s ‘brain fog’ has been an increase in her concentration level.

Last weekend for the first time she completed 93 different tasks using the Constant Therapy app. She took around 90 minutes, with no break and scored 91%. I reminded her that when she first started using it, she could only manage 2 or 3 tasks in 20 minutes before having to take a break – and the way the app works means it ‘learns’ as it goes so has actually got incrementally harder over time.

She is also keen to continue taking the natural supplement Voluntastrols.

These were having a positive effect before her diabetes diagnosis and now with medication controlling the ‘brain fog’ we never knew the diabetes was causing, Voluntastrols will continue to help in promoting Amanda’s mood and ongoing positive attitude to her stroke recovery.

Amanda enjoys playing Scrabble – something we have done since the early days of her recovery. Back then it was all about letter recognition and the whole organisational aspect of just playing a game. Last week her support person noted for the first time that she was actually arranging the tiles into words before placing them on the board, with no help.

One thing she has no difficulty with is adding up her score; mental arithmetic seems to still be way ahead of literacy. Luckily she has really got into audio books and listening to a novel has now replaced daytime television, which has to be a good thing.

For the last 4 weeks, Amanda has continued to show more signs of motivation and increasing energy and alertness. She actually acknowledged that she does feel ‘sharper’ since the diabetes medication began in early March. This is in addition to continuing to take 2 Voluntastrols capsules each day I reminded her, when she was diagnosed how the doctor bluntly put it; “You must be feeling like crap”. But of course any feeling of ‘crapness’ was probably being confused with the ongoing stroke fatigue. To keep organised, both for shopping and what to eat, I write out a basic menu for a few weeks in advance. Amanda has recently gone from asking me what’s for dinner to actually taking an interest in not only reading my scribble, but reading it aloud. This is a significant breakthrough. She has been able to read in her head for a long time but has struggled to verbalise the words other than to give a general impression of what something says. She can’t yet do it every time but it demonstrates that even after 2 years and with regular practice, her brain continues to rebuild connections. Following on from this, she was self –motivated enough to try a little harder. So she picked a random novel from the bookshelf to see if she could read it. But at this stage, the words were; “Just mush.” A few nights ago, just before bed, I found her walking around the kitchen island in her nightdress.  Since she doesn’t usually leave the bedroom for the night once she is in there, I asked her what she was doing. She held up her wrist to show me her smart watch. She was on 2930 steps and was determined to get to 3000 before bed. Last week, as she was browsing Facebook, she spotted her old job advertised on her former employer’s page. She sighed. “Ah well, onwards and upwards.” She said. “How far?” I asked. “To the moon.” She replied

This post is a bit off-topic but we both agreed it is still an important part of Amanda’s stroke recovery journey…

 

I just checked when I published the last blog post – 12.35pm, March 15^th 

 

We were staying in Christchurch for Amanda’s radiotherapy on Papanui Road, less than 2 miles from the Musjid Al Nor Mosque on Deans Avenue where, an hour later a gunman would shoot so many innocent people.

After I uploaded the blog post we boarded the shuttle bus for the hospital and headed for the other Cancer Society Motel on Riccarton Road. As we left our motel my phone flashed a news update.

There had been a shooting incident in Central Christchurch. We were in Central Christchurch.

The bus collected one other patient and headed the short distance towards the hospital. We had already driven through several sets of traffic lights which had been set to flash amber, confusing other drivers, but alerting them to the many emergency services vehicles now speeding across each junction.

We headed down Riccarton Road towards the junction with Deans Avenue. Our feisty and determined driver, Raewyn had already committed to getting her patients to the radiotherapy unit in complete disregard for her own safety and was loudly explaining how, if we heard gunfire we were to get on the floor and she would put her foot down.

We were stopped at the junction by a machine gun – wielding policeman. For non-Kiwis, you need to know that our police do not usually carry guns, which are reserved for use solely by the Armed Offenders Squad. He briefly argued with Raewyn who explained her urgency before looping around the block and arriving back at the same junction to be confronted by a different officer who let her through this time.

 

Two minutes later we were the only vehicle outside the usually busy hospital main entrance and were confronted by a sole police officer also with a machine gun, and an unarmed hospital security guard.

We were refused entry.

At this point (we found out later) there had been unconfirmed reports of gunfire at the hospital and the number of potential gunmen was unknown. Once again, Raewyn remonstrated with the police officer. The security guard suggested we try  the entrance to the Women’s Hospital, further along but in the same building.

Raewyn took off once again and this time we were greeted by a flustered and agitated hospital administrator.  She was also reluctant to let us in and was unable to raise the radiotherapy department on her phone. I suggested I run down there and see if they were open and able to still take appointments as by now Amanda was already five minutes late for hers. She agreed.

In hindsight it was a bit rash of me. I was dressed head to toe in black, running through a hospital in lock down as a gunman potentially roamed the corridors.

The radiotherapy department was still operational so I retraced my steps and escorted Amanda down into the lower part of the hospital to receive her short treatment.

When we emerged, due to the lockdown we were unable to leave and so made our way to the waiting room; usually almost empty due to the efficiency of the booking system. But this afternoon every one of the twenty chairs was taken, with more people standing as everyone on the lower ground floor had been corralled into the room.

I noticed they all had small white stickers attached to them, so I approached the desk. The nurse took our names, checked them off against a list and handed me two small pieces of white sticky paper. “It’s in case the gunman is still in the hospital. Anyone who comes through that door not wearing a white sticker could be him”.

At that moment I realised we were part of it, not just observers.

We sat for a few more hours watching the live news on the TV and communicating with the outside world thanks to the free wifi. It was bizarre as reports were filed from the otherwise deserted front of the hospital to think that we were  inside; safe and secure while elsewhere in the building the staff were dealing with an unprecedented  influx of gunshot wounds.

Around 6pm the lockdown was finally lifted and we were allowed to leave. But Uber had been taken off Christchurch roads and it was impossible to get a normal cab. A nurse offered to take us back to our motel and we finally got back around 7.45pm. It was only then that the magnitude of the afternoon began to hit us.

A few days later, as the flower memorial grew, while Amanda took her afternoon nap I wandered across Hagley Park to take a look. Hundreds of people stood in silence looking at the vast display and reading the numerous cards, many personal tributes to friends and family members. Later, I drove Amanda slowly passed the ever-growing display, but she found it too upsetting to stop and take a closer look.

 

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Earlier this year I was invited to make a short video to talk about Amanda’s experience with the Kiwi innovation – Voluntastrols.

I made a few attempts while we were in Christchurch, but even in the middle of Hagley Park, the distant but constant sounds of sirens or helicopters made recording impossible. I eventually succeeded once we returned home. The video (below) is also a short summary of Amanda’s stroke journey to date and has so far been viewed over 500 times.

As Amanda’s stroke recovery continues, life goes on.  Her ongoing challenges with reading, using the phone and the internet means I look after general household admin. This include dealing with the mail and organising hair, dental and doctor’s appointments.

Back in October the appointment letter arrived for her regular 2 yearly mammogram. A few days after the visit to the clinic we received a phone call to say they needed to see her again.

Not the call anyone wants to receive.

After another mammogram we were immediately taken to a small room where a doctor performed a biopsy.

Then we waited for the result.

The doctor (the same one who never expected to see Amanda again when word reached  the practice she had been flown to Wellington following a massive stroke), confirmed the biopsy had revealed cancerous cells. The doctor  left us alone for a few minutes to take it in. She later admitted she had to leave the room to shed a few of her own tears at this latest news.

The doctor informed us that Amanda was fortunate that Nelson has one of the best breast surgeons in the country, and we were both encouraged by the no- nonsense practicality of the amazing Dr Roz Pochin who explained everything carefully and clearly, fully aware that Amanda was coping with the whole situation while also recovering from her stroke.

A week later, Dr Roz called me from the theatre as soon as she had finished to say the surgery had gone well and she had removed a golf ball-sized piece of tissue to be sent away for analysis.

A few days later we received a call.

Firstly the surgeon emphasised the tissue was pre-cancerous, but that the bad tissue went all the way to edge of the extracted sample, so she wanted to go in again to take some more, just to be certain.

By now it was just before Christmas. Dr Roz was due to go on long term leave and wanted to see the job through. So she  decided to make the surgery urgent by noting it as cancerous and put Amanda on the non-elective surgery list for New Years Eve.

The sample was rushed through and  2 days later the surgeon was able to confirm she had removed all the pre- cancerous tissue which had been detected.

To make absolutely sure Amanda was then booked in for radiotherapy at the nearest available unit; Christchurch Hospital, 400kms away.

30 minutes of high intensity radiation is carefully targeted to kill any remaining cancer- causing cells, using 2 minute ‘blasts’ over 15 days.

So now, in March here we are, in the Cancer Society lodge in Christchurch (funded by the charity), taking a daily bus (funded by the charity) to the nearby hospital, for non-invasive, painless and preventative radiation treatment.

To most people this whole ongoing episode would be calamitous, life-changing and emotional. But Amanda has already been there and done that.

She wasn’t able to read the vast amount of supportive booklets, leaflets and web pages we were offered.

She could not remember from one visit to the next, what information she had been given, what the prognosis along each step might be, or what the risks of radiotherapy might be.

For both of us, this was merely a blip on her stroke recovery journey.

As you would hope, and expect, every medical expert we have encountered has been incredibly empathetic towards the additional complications as a result of the stroke.

So, here we are,  halfway through our ‘radioactive mini- break’.

I’m making sure Amanda is walking more each day than she has in the previous few months, getting her regular nap, and trying to see a few of the sights of Christchurch.

 

 

Yes, a 32 year old ice cream. I’ll get on to that later.

Firstly, as Amanda’s stroke recovery enters year 3, she continues to progress. Once again I’m reminded that her brain basically ‘reset’, or re-booted and each new  milestone occurs and is noted in much the same way as we would probably have noted similar events as our children grew, if social media and smart phones has been around 20 years ago. I make a note of each small step on the journey back to her previous self.

When our daughter came to stay over the Christmas holiday, she offered to paint her mum’s toenails, something Amanda would currently struggle to do, but a thing she would regularly do pre-stroke.

All the various colours remain neatly lined up in her bathroom as both a reminder and an incentive to be able to once again paint them herself. It was amazing to see how such a small thing made her feel like her ‘old self’ again. Thanks in part to our current warm summer weather; she has barely worn shoes since.

She was also proud of the fact that, with a little assistance, she also beat her support worker at Scrabble, and by a respectable margin.

Both these otherwise small events, in conjunction with her daily Voluntastrols capsules before bed support lifting her self-esteem, energising the spirit and engendering a positive overall mood which in turn makes for a willingness to try new things even more.

Amanda surprised herself recently when I once again encouraged her to use her right hand more. As mentioned in a previous post, she now has both significant movement and sensation in the right arm and hand, but her brain simply fails to acknowledge its existence for most of the time.

I tested her grip strength. It’s almost as strong as her (now dominant) left hand. As I got her to squeeze her left hand with her right, I pointed out there was now no excuse for being physically able to lift and carry objects. It just needs constant repetition for the brain to finally remember it should be able to simultaneously control both hands, not just one.

Amanda was recently asked if her sense of smell had altered since her stroke, or if certain smells were particularly evocative? She didn’t think so.

But then, as I was tidying, I found the bag she had brought home from work on the day of her stroke 2 years ago. In it was a small can of ‘Impulse’ body spray. I showed it to her and gave it a spray.

“Remember that?”

“Oh wow!” The effect of the scent was instant and powerful and she just smiled.

 

So… the ice cream story.

 

We were watching a gardening program on TV and Amanda remembered  years ago we attended the Stoke Garden Festival in the UK. She remembered it, not for the flowers or the amazing displays, but for the fact they sold large waffle cone ice creams, covered in fresh cream. The memory was vivid.

She cannot recollect an item on the TV news 30 seconds after it has been broadcast. But when I checked, the Stoke Garden Festival was held in 1986. The ice cream must have been significant.

 

I found the photographic evidence…

 

As we enter 2019 and Amanda heads towards the second anniversary of her stroke, she continues to make constant improvements and shows clear signs her brain healing is ongoing.

I also wonder if a recent diabetes diagnosis may actually be having a positive benefit.

There was a 4 week gap between the blood test, which revealed a very high blood sugar count over the preceding 3 months, and the doctor’s visit to discuss how to manage it.

During this time I drastically cut what I already thought was a low sugar intake to as little as possible.

As a consequence Amanda lost 6kg in weight and the ongoing swelling of her right leg, an issue since before her stroke but apparently made worse by it, drastically reduced to just about zero.

The doctor decided  since this dietary change was already having a measurable physical effect, that she would hold off on medication and re-test Amanda in 2 months’ time. At this point a new blood test would be able to check on the preceding 3 months since our sugar intake has been cut back.

As diabetes is now better understood it has become accepted that, with early intervention, it can be reversed, and with minimal indulgence over the Christmas period I’m hopeful that we have managed to achieve that reversal process.

The positive stroke-related benefit?

Like too much salt, from what I have read, too much sugar can also impair brain functionality. Since cutting back the sugar, Amanda’s mental agility, alertness and definitely her short term memory function, all appear to have improved.

One of the most significant effects of her brain bleed was the loss of ‘symbol’ recognition (numbers, letters, colours and shapes) and a loss of short –term memory. But regular examples, which could easily be missed unless I make a note of them, seem to prove her healing process is being assisted with a combination of daily cognitive therapy, using the Constant Therapy app, and the ongoing use of Voluntastrols as a supplement designed to assist her brain function.

She pointed to a group of flowers at the bottom of the garden, noting ‘the red ones’. She meant the red hydrangeas. But she correctly identified the colour.

Watching TV, a choice on a quiz show was the word ‘Purple’.

“Does that say purple because I can read it?”

That was a first.

When it was announced recently that British actress June Whitfield had died, Amanda surprised herself that she could actually recall June’s face in her memory, because she cannot do that with every face.

When  an end of year highlights programme was broadcast on TV and the subject of the Thai football team trapped in the cave in June came up, she said (for the first time) that the story was her most recurring dream. This from someone who had apparently lost the ability to dream on a regular basis. Now she has a recurring one!

At Christmas after going out for breakfast, I persuaded her to go into a busy shopping mall. While she didn’t want to venture too far into what was a very bustling and noisy environment, she was quite happy to wander as far as the nearest public seating area and just people-watch (and occasionally comment) for an hour.

One of the stores had an ad in the window for retail staff and I jokingly said that could be an opportunity to re-enter the workforce at some point in the future. She wisely, and instantly pointed out that although her mind was willing, her brain was still too weak.

Amanda’s ability to read aloud still eludes her. But confusingly and frustratingly she will easily get the gist of a sentence and be able to paraphrase it. The short clip below highlights this, as she uses one of the exercises from Constant Therapy to demonstrate (sound on):-

 

Amanda recently had to have surgery for something not linked to her stroke in any way and she wishes to keep private. But it highlighted two things.

Firstly, she had to have a blood test. The doctor suggested using her affected right arm as she wouldn’t feel the needle. But she clearly did. We discussed it afterwards and came to the conclusion she actually has quite a bit of feeling in her right arm. The issue with it is spatial awareness.

So, whereas a non-affected person is able to look at an object, then turn away and still reach out and touch it, in Amanda’s case she has no idea where her arm is, in space. She gets no feedback as to its position or location, unless she is actually looking at it and using purely visual clues.

This lack of spatial awareness, which extends pretty much across the whole of the right hand side of her body, is what limits movement and confidence in walking or grasping objects. This is something else we can work on.

A week before her surgery, the anaesthetist asked her to stop taking Voluntastrols as a purely precautionary measure as he was not personally familiar with their effects. I thought that might allow me a few days to gauge whether or not this would make any difference. But it was difficult to tell if her slight drop in mood was simply pre-surgery anxiety or something else.  Post -surgery she is now back to taking them regularly and coupled with the obvious relief  the surgery is behind her, she is back to her usual positive and motivated self.

I joked with her that at least she wasn’t one of those people who emerged from a brain injury with the ability to speak another language or speak in a foreign accent.

“Imagine if you suddenly sounded Welsh!”

“I wouldn’t mind that.”

Then I remembered.. Amanda is half Welsh.

 

This week, with assistance from her support worker, Amanda decorated the Christmas tree; the second time she has done this since her stroke. This time around the support worker commented on how Amanda remembered exactly where everything should go. This re-enforced her ability to use her long term memory, whereas earlier today she could not remember the number ‘45’ from a brief conversation just 2 minutes previously.

Also, in a step up from last Christmas, she wrote all our Christmas cards – slowly and following a written prompt, but it was an advance on 12 months ago.

Word recognition is still sometimes an issue. With today being our first hot summer day, we had all the windows open. She called out asking me to get rid of a wasp which had flown in. Not a ‘thing’ or a ‘fly’, but very specifically a ‘wasp’ which was barely visible as one, from where she was sitting. On the other hand, as the warmer weather started she told me she no longer wanted to wear ‘long sleeve trousers’ a perfect description of the opposite of ‘shorts’!

Finally, her support worker writes regular notes in a book to let me know what Amanda has done or accomplished on a daily basis.  Last week she wrote;

“One of the answers on her quiz show (The Chase) was ‘Elephant’.  Amanda broke into a wee French song about an elephant!”

I had never heard it, so she repeated it (in French). She insisted it was not from her Girl Guiding days or from school.

Maybe I was wrong about being able to randomly speak a foreign language after a stroke?

 

Firstly the down…

Amanda fell over for the first time since her stroke exactly 19 months ago.

It has always amazed me that even when she was learning to stand up and walk, she never once toppled or lost her balance. But for some reason which she cannot remember her affected leg somehow caught the leg of a dining chair and, unaware of its position, it pulled her onto the solid kitchen floor.

It was around 9.30am and she was alone in the house. Due to her short –term memory issues she initially had no recollection of what had happened. But over the next week we gradually pieced together, with the evidence of some very heavy bruising around her right knee,   she had fallen face down on her affected side. She remembers laying there for a while before managing to pull herself onto her backside and shuffling to the wall behind the kitchen door.

It was there my mum found her propped up, unable to stand, around 30 minutes later. I was called home from work and arrived to find her shocked, upset but otherwise mostly undamaged with the exception of a large dent to her confidence and apparent invincibility.

The advantage of falling on her affected side seemed to be she didn’t tense in preparation for the impact so there seems to have been no significant damage. The downside to this was that she landed heavily and so the bruising was quite dramatic and she felt sore for days after.  But this ‘soreness’ also seems to indicate more return of sensation in her right leg which, long term, is good news.

And the ups…?

I’ve mentioned Amanda’s loss of ‘executive function’ before; her current inability to plan, anticipate or participate in everyday tasks. She patiently waits to be called for dinner each night but has no concept of participating in either choosing or preparing the meal.

So I was surprised earlier this week when she navigated her Ipad to a recipe app she had been an avid user of before her stroke – Pepperplate.  She said;

“I’ve finally found this meal I’ve been wanting for ages.”

It’s a chorizo sausage chicken traybake recipe she used to make.

“How did you remember where that was?” I asked her.

“It’s been on my mind for ages.” She said.

Which is remarkable, since the concept of having a ‘mind’ in the way most of us don’t even appreciate, has mostly eluded her for the last 20 months.

I’m cooking it tonight.

In addition to enjoying cooking, Amanda has always been a keen gardener. Her support worker is encouraging her back out into the garden as they plant seeds and vegetables ready for the upcoming summer. Unfortunately aphasia has robbed Amanda of the ability to remember plant names as she used to.

This week she was watching a UK TV house renovation show. During the big ‘reveal’ at the end the home owners were admiring their new garden, but struggled to name their new plants.

“They don’t even know what agapanthus is.” Amanda commented.

It took me a few minutes to realise what she had just said.

“Erm for the last 20 months neither have you… up until just now.”

One of the tasks she really struggles with using the Constant Therapy app is identifying a location on a map, or naming a particular shop based on a picture of a shopping mall layout. The pictures are always small, full of detail and lots of words. The test is obviously to filter out the required information from its surroundings.

This week she insisted on coming into the shop to help me choose a birthday card for our daughter.

You’ll be familiar with card displays; rows and columns categorised by gender, age and the type of celebration. In essence, very busy and not dissimilar to the challenges in her app. I selected an innocuous and generic card but she stopped me.

“No, that one.”

She pointed directly into the display at a ‘Happy Birthday Daughter’ card, surrounded by all the other cards on the stand.

The whole point of the task had just been proven successfully.

 

Finally, as we move into summer, Amanda has decided to change from a hot (porridge) to a cold (muesli) breakfast. This means I can no longer break open her Voluntastrols capsules and dissolve their contents into warm milk. Instead she is taking them, as suggested by the manufacturer, with water, before breakfast.

Given I believe they have improved her cognitive ability and accelerated her stroke recovery even in the way she has been consuming them for the past 6 months, it will be interesting to see if she improves even more, now they are entering her system before, and not with, her breakfast.

I’ll keep you posted.

Over the last few weeks there have been a few more noticeable milestones.

In the life of anyone not recovering from a stroke they would be insignificant. But when an action, reaction or emotion suddenly reappears after being absent for more than 18 months, their re – appearance is literally remarkable.

Firstly an incident which most of us would just heave a sigh at, and get on with it;

Ants in the cat food.

This happened one day whilst I was at work. They came into the house, marched across the length of the kitchen floor and then infested the dry food. When Amanda spotted the problem she did several things;

Firstly she managed to bend down and pick up the dish; a movement I didn’t think she was capable of. Next she remembered where we keep the clean dishes and the food. She then remembered the best way to protect the food was to put the dish into a saucer of water, so the moat keeps the ants at bay.

This simple procedure required both the planning and execution she has shown no motivation for. Until now.

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The day before my birthday was just another day for Amanda. She worked on her Constant Therapy app, watched a couple of quizzes on TV and listened to her audio book.

Except she didn’t.

She told me all these things were happening when I Facetimed her after lunch. In fact she had surprised her support worker by announcing she wanted to make me a birthday cake, which she then spent the morning doing.

As far as I’m aware, humans are the only species that can keep a secret. it’s something small children (or rather their brain capacity) have a hard time doing. But Amanda sat stony-faced and lied convincingly to me during the call. It’s a trait which she has managed to re-acquire, or redevelop, which is completely fine with me.

…………………………………………………………………………………………………………………………………………………….

The final revelation was on Sunday afternoon when she asked me if our son was moving house. When I told her ‘”No” she said she had an extremely vivid dream about it the night before and then proceeded to recount details of the dream, more then 12 hours later.

I’ve read many stroke recoverers lose the ability to dream and Amanda has been no exception. She has not been concerned by it and in fact says she just sleeps very soundly.

But ‘experts’ tell us dreams are important for making sense of our emotions and for allowing our brains to file and sort memories.

That skill appears to have also returned, along with all the others.