In the middle of the journey of our life I found myself astray in a dark wood where the straight road had been lost sight of.   

Dante Alighieri

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Motivated… to the moon.

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. 20190601_090828.jpg 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

An itch on the side I can’t feel

 

With the hiccup of Amanda’s radiotherapy swiftly becoming a distant memory, it’s time to focus once more on her stroke recovery and reflect on the past 2 months and how, in retrospect, she has continued to progress.

Despite the longer nights and cooler mornings, Amanda’s positivity and motivation remains unrelenting. Her brain, even 2 years after her significant stroke, continues to repair and regenerate.

We were warned the radiotherapy treatment could cause fatigue and this was difficult to detect, given her ongoing stroke fatigue. But in the last two weeks, as the effects have obviously worn off she has increasingly become more chatty, more humorous, more assertive and, as noticed by several people, more cheeky.  More so than before the radiotherapy. I attribute this at least in part to her ongoing use of Voluntastrols – a natural health supplement which supports  brain function

So here is what I and others have noticed over the past 2 months;

Amanda’s sight –reading ability has improved. One of the tasks on the Constant Therapy app plays a phone message followed by a written question and 3 possible written answers. Up until now I have had to read every question aloud. I then deliberately read the three possible answers out of the sequence in which they are displayed so Amanda can get the visual clues by looking at the number of words in each answer. But now she is mostly able to read the question (or rather understand the meaning and context as she is still unable to read aloud), and select the correct answer.

The app also challenges her mathematical skills and these have also increased dramatically to the extent where her mental arithmetic is probably better than mine. This has also helped her working memory.

So for example questions like…

If Jack has 6 pens and Bob has 20 pens and he gives Jack 10 of them, how many pens does Jack have now?

..actually requires  the ability to retain a lot of information, move it around in your head, and then mentally calculate the answer –  and she can do it!

Last week she was walking along the street with her mother – in –law and asked her to speed up.

Amanda has also started to wean herself away from daytime TV by instead listening to audiobooks. Although these have been available to her for months she is now listening for several hours at a time and easily retaining the story so far from one session to the next.

I’ve noticed Amanda can focus her concentration best when there are no distractions. So quietly lying in bed, lights off is a good time to test her.

Ever since her stroke she has insisted she couldn’t remember (other than in very general terms) what she did at work, on a daily basis. This week she was musing on no longer working and I asked if she could yet remember what she actually did – and she began reeling off a detailed list of tasks for the first time in over 2 years!

Then I checked her Achilles Heel; her short term memory. So I asked her what we had eaten for dessert 2 hours earlier. Slowly we got to fruit, round, yellow, begins with ‘P’, second letter ‘E’ and that she could picture it in her head before she finally landed on peaches and ice cream.

But it didn’t stop there. She asked me why she could not recall stuff which was obviously still in her head. So I explained how the bleed had damaged the existing pathways and so her brain had to build a new way to get to the memories and that the more she practiced the more ‘well – worn’ those new pathways became. I reminded her how, if she didn’t use her app for the few days her memory started to falter.

This was such a strange conversation to have. It was almost as if her undamaged right side was self-aware in its own right and talking about how the other half couldn’t function correctly.

She also made the startling statement that she could remember the exact moment of her stroke. She remembered standing at the kitchen sink, vomiting then… nothing. That was the moment she collapsed unconscious in to the arms of the waiting paramedic.

I guess it depends on the location of the stroke, but in Amanda’s case she has proved beyond doubt she has absolutely no memory loss. They are all still in there. It’s just the path to reach them has either been destroyed, or damaged.  She continually demonstrates the ability to either repair or build new ones.

As I drifted off to sleep I could feel her fidgeting.

“What’s up?”

“I have an itch on the side I can’t feel.”

“Ok, just think about what you just said for a moment. Goodnight.”

Christchurch – 15th March 2019

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 15th 

 

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.

 

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Stopped by a machine gun-wielding Christchurch cop.

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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A small section of the vast flower tributes just outside Hagley park

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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.

A stroke is not enough.

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.

 

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The 32 year old ice cream…

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…

 

Sugar free benefits? Recurring dreams & beating Aphasia.

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):-