It’s now 20 months since Amanda’s stroke, and way past the point where the so-called ‘Plateau’ effect means she should have stopped improving or at least slowed down significantly.

But with the benefit of two daily Voluntastrols capsules, as the only thing consumed in addition to a normal healthy diet and the regular challenging tasks set by the Constant Therapy app, even now, I’m still noticing her brain slowly, but persistently pushing onward, sometimes in unexpected, but welcome ways.

Amanda has always had a shuddering fear of snakes and scorpions, instantly changing channel if they appeared in any way on TV.

In the months immediately following her stroke I noted her apparent fear had disappeared.  But this wasn’t strictly correct, and wasn’t some kind of positive evolution. In retrospect, just as the stroke has caused what a psychologist had called ‘emotional blunting’ I think it also masked her phobia,

In the last week, as snake-related news stories seem to have randomly increased on TV, she is back to shuddering and reacting to them (and scorpions) as she did before.

Perversely I see the return of her inherent phobias a positive step forwards and a further sign of healing.

I’ve read that stroke survivors are often able to think more clearly in calm, quiet and dark conditions. One night last week, just as I was going to sleep, Amanda said.

“I used to read a lot didn’t I?”

In fact she used to read at least 15 minutes at that very time of day, just before turning off her bedside lamp.

“Can you still get audio books from the library?”

The next day we went to the local library and found out how to access online audio books using a platform called ‘Overdrive’. I set it up for her and we downloaded the first of no doubt many cheesy romantic fiction novels. Meanwhile our daughter who works in a large bookshop is going to make a list of the books mum has missed in the last 18 months.

So now she has the choice and can sit and listen to a story instead of watching TV. She has also learned to navigate yet another app. The worst part is I have to listen to the lurid prose while I’m trying to write this!

I may have to persuade her to wear earphones from now on.

Finally this week, possibly the most impressive progress has been made using her Constant Therapy App.

Over the months the complexity level has slowly increased and the tasks have become more complicated. These include some even I struggle with. For example – remembering and reciting six sets of 9 digit numbers one after the other (it takes her a few goes to remember the whole set), or pointing to 10 words, in aphabetical order, alternating between upper and lower case.

When she first started she struggled with 3 simple tasks in 20 minutes. This week she completed 96 tasks in 90 minutes in one sitting, with an 87% success rate…

… and didn’t even yawn at the end!

This weekend we celebrated 35 years of marriage.

Amanda made sure she remembered the anniversary by passing me a card at 1.30 a.m.  – while she thought of it

She then slept in until 9.30 a.m. on Saturday morning. I asked if she had been asleep all that time.

“Well, I was asleep until I woke up.”

Mmm… Sometimes you can be too quick.

We walked to the local café for lunch; a walk Amanda has  done a few times in the last year. The difference was, this time when we got home she proudly displayed the number of steps recorded on her watch

“Look, 2000 steps.”

It was, and it was also the first time since her stroke she had correctly associated a number with the digits on the watch.

Another milestone.

Amanda can still struggle with her short term memory. On Sunday evening she said there was something she wanted to tell me but couldn’t remember what it was.  At 7.15 on Monday morning she said she still couldn’t remember what she wanted to tell me from the night before.

So she remembered she had forgotten something earlier!

This week I read the Voluntastrols capsules Amanda has been taking to assist with her cognitive function have successfully passed the product registration process with the Australian Government’s Therapeutic Goods Administration and have gained approval to be promoted and labelled as (among other things:)

Maintaining and supporting mental concentration, focus & clarity, supporting healthy emotional and mood balance, and also maintaining and supporting cognitive and mental function.

These assertions all back up my own observations of Amanda’s improvements since taking these capsules. But to date, even in this blog I have had to be careful not to make unproven claims, even as a user, not a supplier of the manufacturer. So I’m really pleased that some strict criteria have been fulfilled and I can freely say what a difference Voluntastrols have made to the speed of Amanda’s stroke recovery.

Also this week, after being contacted by the producers of the Constant Therapy app Amanda uses, they have linked up with the American Stroke Association and now feature a short video they invited me to make on dealing with Amanda’s stroke recovery. I’ll also be making a 10 minute video to be shown at the Australian Aphasia Conference in November.

Meanwhile Constant Therapy has recognised Amanda’s regular improvements and tweaked the tasks to make them even more challenging. So the maths questions – which had got to 3 digit addition sums (e.g 978 + 422), suddenly switched to subtraction, which totally confused her! The concept of numbers going backwards as well as forwards is suddenly as new as it was 50 years ago.

Thankfully she enjoys the challenge.

I’ve realised the gaps between these posts are getting longer.

So does that mean Amanda’s recovery is slowing down?

I don’t think so.

But the more she heads back towards ‘normal’ the harder it becomes to notice  improvements since they are often so subtle I only realise after a few days that yet another pre-stroke behaviour or emotion has returned.

For example in the last 3 weeks  she has had a 20 minute phone conversation with her dad –  something she would have found hard to sustain even face to face only a month or so ago, let alone voice only.

Getting up and dressed in the morning has sped up by around 10 minutes as the speed at which her life moves  gradually increases.

Supermarket shopping is more active (and interactive) each time. This means the speed at which we shop has actually decreased as she stops to look at the products now rather than just push the trolley around next to me. I have set her a challenge next time that we will swap and she will use the weekly list to go around and select the items instead of me.

This brings me to a point which her support worker noticed a few weeks ago.

We use two different written alphabets in the English language; upper case and lower case. Some of the letters are identical; P and p or W and w all look the same. But A and a or B and b ? Completely different.

So Amanda struggles with switching between both, sometimes within the same sentence, in the same way people who find it easy to read this blog post would struggle if suddenly confronted with Chinese script.

Semantic quirks can also happen in a verbal situation. Neither of us could remember her doctor’s name. Amanda came up with Caroline Eve which I knew wasn’t right but sounded almost there.

When I looked it up I found the doctor’s correct name is Eloise Fry.

Syllable– wise , identical.

So why Caroline Eve? Luckily Youtube came to the rescue. It’s the name of a female fashion store in New Zealand which advertises on the TV from time to time! Amanda found the name in her subconscious and to her, it sounded right!

Short term memory is also improving, remembering for example last thing at night that I had suggested she moisturize her feet first thing that morning.

Or remembering on Monday morning that her support worker would probably be tired having worked all weekend; something she would have told Amanda the previous Thursday morning.

Probably the most significant thing about these memories is that she is now actually verbalising them as if she suddenly has a new-found skill she wants to show off when in fact it’s just the return of a missing one.

Amanda’s aphasia continues to play tricks with her brain even as recovery continues.  But she is winning the battle.

Each morning she takes 2 Voluntastrols capsules; opened and sprinkled over hot porridge with trim milk and manuka honey.

It’s still hard to believe the active ingredients in these capsules; 1000mg of what looks like vacuum cleaner dust is actually working its way into her system, and up into her brain. They seem to be not only assisting with mood and emotion, helping her to start the day off with the right attitude, but also activating the tiny pathways which support neuro plasticity and possibly helping her brain sort out the jumble of memories, thoughts and a lifetime of details and putting them back into the right folder and back on the right shelf in her brain library.

Over 18 months post-stroke she continues to defy the concept of the ‘plateau effect’.

Most mornings she uses the Constant Therapy app on her ipad. It takes a few minutes for her brain to get ‘in the zone’. One of the biggest challenges still remains reading aloud. The first sentence this week read:-

The Weatherman predicts the forecast.

“First word?”

“A”

“No, it can’t be ‘A’ – There is more than one letter.”

Amanda then identified each letter from her alphabet chart and by the time she got to the last one had forgotten the first one, so I prompted. After a few moments

“The?”

“Yes! Next word…?”

“The…Weatherman…predicts the …forecast.”

“Correct. How the heck did you just go from 2 minutes getting ‘the’ to the rest of the sentence without a pause?”

“I have no idea.”

The following video shows how Amanda uses ‘air writing’  while using the Constant Therapy app to remind herself how letters are written. This  then helps her brain recall the shape and hence identify the correct symbol

…………………………………………………………………………………………………………………………………

There have also been other improvements in the past 3 weeks, not just linguistically.

One morning last week we ran out of milk for breakfast. Amanda was in the shower. For the first time since she was discharged from hospital in May last year, I felt confident in jumping in the car, driving to the shop and coming back. It took less than 10 minutes. But I came home and she fine. That was a small leap of faith I had been waiting for.

Amanda also wandered into the kitchen asking if I needed any help cooking dinner. Once a week she is also doing simple biscuit baking with her support worker.

One of the lingering effects of her stoke has been her retrograde amnesia. She could not remember, among other things, Christmas 2016; 5 weeks before her stroke.

On Saturday we were talking to our son and the subject came up.  Without prompting she remembered who came for Christmas and where we went for Christmas dinner. To date, she has not been able to remember any of that.

It proved my ongoing theory that she has never actually lost her memories. She had just forgotten where she had quickly hidden them when the stroke happened.

I make sure Amanda comes with me on a weekly visit to the local supermarket.  Initially the whole experience was slightly bewildering and over –stimulating, even at the quieter time of early on Wednesday evening.

Last week I left her to retrace my steps back to the chiller section. When I returned she had moved on, for the first time on her own, to get the next item on the list. After more than a year –  another first.

As a very quick test today I asked her, without warning;

“What’s your address?”

She told me straight away

“Date of birth?”

No hesitation.

The book with all that information sounds like it’s firmly back on the shelf.

Finally.

Amanda is now 18 months post – stroke.

Her daily routine has switched completely from the same one she had for more than 10 years.

But routine continues to be important.

Routine gives her confidence and allows her to regain her skills and allows me to measure progress and compare her speed or the complexity of a task or action compared to last week or last month.

Last week she said;

“This time last year I was a bit of a zombie. Now I just need everything to work properly.”

She has much more sense of being in control, noticing more and participating in more. Her curiosity has returned. No longer just accepting her situation is a huge step forward.

She continues to take 2 Voluntastrols capsules each morning.

Their website talks about how they can support mood balance as well as cognition and neuroplasticity. This is the brains ability to build new paths in order to access information and knowledge.

In Amanda’s case she saved a back- up copy during her brain bleed and has since waited patiently for her brain to build new neural pathways to retrieve it.

Those bridges are clearly being constructed. Each day more and more of Amanda’s personality, which has been muted for 18 months, has slowly emerged from the fog of her brain.

Mood is a hard one for non-experts like me to define.

We all recognise happy and sad in ourselves and others. ‘Tuning in’ to our partners and those close to us is another innate human skill, often defined as empathy. But the person on the receiving end has to be able to give out the signals before we can tune in to them. Brain injuries can muddle, confuse and even mute those signals.

Having known Amanda for nearly 40 years I could tell immediately post-stroke that some of her signals had been either turned down or off completely. In the last few months many of these signals have found a way back once again and into her voice, her facial expressions and body language.

It could be argued that the Voluntastrols are merely having a placebo effect. But surely the term is meaningless when it comes to an injured brain? All the usual rules about how we react, whether consciously or unconsciously must be thrown out when a brain is not functioning normally.

So, in Amanda’s case I can only agree. Yes, Voluntastrols DO appear to be supporting both her cognition and neuroplasticity.

In terms of mood balance, while fortunately Amanda has not suffered mood swings or anything anywhere near depression or negativity, Voluntastrols appear to have assisted her to maintain an increasing positivity to the extent she has definitely moved to the next stage. More of which next…

The local Health Board has agreed to fund a further 12 months of home support; 2 hours a day 5 days a week.

For the past year a support worker has visited 9.30 – 10.30a.m. and again 12.30 – 1.30pm. The same support worker attended most of these sessions, initially supporting things like food prep and where to find stuff in the kitchen as Amanda’s recollection of the previously familiar world around her had almost completely disappeared.

A week ago Amanda’s main support worker told us she would be working elsewhere. So I took the opportunity to find out if we could get Amanda’s Wednesday morning person for more shifts.

This is an older lady who has worked almost exclusively and passionately for an hour each week to help Amanda regain her literacy and numeracy. They hit it off straight away and Amanda always looks forward to their short time together each week.

With a bit of organising she is now coming for a 2 hour session four days a week. This opens up huge possibilities for continuity, expanding Amanda’s concentration span and ongoing improvement.

In addition to the ongoing sessions already she is talking about the extra time being used for Amanda to start looking through recipes and re-learning her culinary skills. W

When spring arrives in a few months she intends to get Amanda back out gardening again, something which has sadly fallen by the wayside for both of us in the last 18 months.

This renewed momentum and positivity has further increased Amanda’s enthusiasm and motivation in the past week. Her minor ‘blip’ of ‘This is me for the rest of my life now.’ From a few weeks ago has been transformed into renewed possibilities and opportunities.

Amanda is now into month 17 of her stroke recovery and month 3 of taking 2 Voluntastrols  capsules each day – and recovery still continues.

I’m now opening the capsules and mixing the contents with her breakfast porridge. For her this is easier than swallowing them and just turns the porridge purple. As well as extracts from chamomile and citrus, the capsules also contain extracts from Theobroma cacao (a component of dark chocolate) and blueberries.

So for good measure, I’m also adding a small amount of blueberries to the porridge and also leaving a few squares of good quality dark chocolate   (Whittaker’s 72% Dark Ghana if you’re a Kiwi ) for Amanda to eat with her cup of tea

And the evidence for this ongoing improvement?

Firstly, her recall in general and specifically her ability to remember things she has previously read. For example she read a Facebook story on a missing dog. A few days later the story was updated when the dog was found.

“Ah, that’s good, he’s been found.” She said.

This, despite her ongoing inability to read aloud, or read detailed news articles or books. We have agreed that this might be because her brain cannot yet retain the ‘story trail’ of a long article or book. But short, sharp paragraphs of the kind usually associated with Facebook posts, are manageable.

I hit on the idea of getting Amanda to have a go at reading Dr Suess’ Green Eggs & Ham. It’s a book we read to the kids when they were small and they fooled us in to believing they could read at an early age when actually they just learned the whole book by listening to it night after night! The phrases are short. So are the words, and there is an element of repetition.

A support worker who listened to Amanda read noted she did well to recognise the words and read aloud, but as I had already suspected she too noted it required complex memory skills to memorise the previous page and retain the flow of the book.

Self- confidence to growing too. On Sunday we walked to the local café. Previously Amanda would sit while I went to the counter and ordered. This time she was happy to stand in the busy queue and choose her cake before sitting down.

The Constant Therapy app continues to challenge Amanda (in a good way) as it gradually adds more complicated and challenging tasks to an ever growing list of challenges. This week the added difficulty has been mental arithmetic  using hundreds; so 2 numbers to carry for those who remember when we learned how to do this all in our head all those years ago! But Amanda has risen to the challenge and has re-grasped a concept she first learned nearly 50 years ago!

Amanda also surprised her other support worker by successfully completing the following word grid. Not only identifying the words common to each category but also writing them down.

The most striking endorsement of her apparent improvement came from her Occupational Therapist. She currently sees Amanda for just 30 minutes each week and sent me the following text:-

It will be interesting to see the outcome of that assessment.

Last night as we left the gym, the lady who had been on the treadmill behind Amanda stopped and jumped off and we walked by. She introduced herself and Amanda remembered her as they used to attend the same gym and our kids are the same age. She told Amanda how amazing she was and that she was aware of Amanda’s situation as her future son –in –law had been the paramedic who initially attended to her when she collapsed at home.

Amanda gets a lot of casual praise, often from people she knows, but I don’t. Last night she floated out of the gym with a huge smile on her face.

Amanda has now been taking 2 capsules of the Voluntastrols botanical supplement every morning for the last 6 weeks.  In the last two weeks (and bearing in mind 16 months post – stroke), she has demonstrated further improvements.

Self – motivation continues to show signs of improving.

I set her a task to tidy the kitchen drawer containing the herbs and spices.  While I was at work she removed the contents, cleaned out all the dust and dirt and then neatly replaced the various containers. Unprompted she then moved on to the drawer next to it which holds various kitchen tool and implements in 3 compartments which years ago we decided to categorize from ‘blunt’ to ‘sharp. Once again she emptied, cleaned and correctly returned each item to the correct compartment.

A few months ago she would not have known where to start on this kind of task and certainly would not have kept up a level of concentration required to complete both drawers.

One afternoon last week I came home from work to find all the ingredients for a cake laid out neatly on the bench. I presumed she had been making a cake with her support worker.

“No.” She said, “I want you to help me make one later.” Amanda had found all the correct ingredients and got them ready. So we made a cake later that evening.

We had a brief chat about her current ability compared to how it was a few months ago, and also pre-stroke. She said she sometimes felt like an imposter in her own body, or that she had been transported to an alternative universe where people knew her and knew what to expect of her but she had no idea how to live up to those expectations; the written language was all different, and it was all unfamiliar but she was somehow getting away with being a version of the person people knew.

Watching her favourite TV quiz – The Chase, a question came up about the poem Jabberwocky. She instantly recited the first 2 verses almost perfectly, stumbling only over the last line of the second verse:-

’Twas brillig, and the slithy toves

Did gyre and gimble in the wabe:

All mimsy were the borogoves,

And the mome raths outgrabe.

“Beware the Jabberwock, my son!

The jaws that bite, the claws that catch!

Beware the Jubjub bird, and shun

The frumious Bandersnatch!”

We learnt that at school more than 40 years ago- and yet she still sometimes struggles to tell left from right.

This week there has also been a numerical breakthrough using her Constant Therapy app.

Up until today, when doing the arithmetic she has had to physically point using a table from 0 – 9 each time she wanted to add a number to her sum. For example to get to 7 on the chart she would labouriously point and count each one in turn until she reached the desired digit–

1,2,3,4,5,6…7

But suddenly today –  straight to each digit.

The assessment from her recent 4 hours (just 1 per week) block of speech language therapy sessions still points to ‘severe’ reading and writing deficits. But this assessment uses different criteria and does not take into account the clear and demonstrable progress she is making using Constant Therapy, which subtly alters the difficulty of the task in hand and challenges her far more than being asked to write her name and address again and again. As an example her latest 100 questions, spread across 2 hours of a day, scored 97%.

For Amanda, the key is variety; new tasks, mental and physical, gently pushing to try different things and introducing new challenges.  Gradually they become the norm until the universe which sometimes still feels like an alternative one, becomes the one she has actually always been in.

This is the longest gap between posts so far. Three weeks since the last one. So what’s been happening?

It’s been one month since Amanda began taking the Voluntastrol  botanical supplement and also a month since I signed her up to the Constant Therapy app.

In that time she has completed nearly 800 tasks on the app, increasing her mental concentration out to over 2 hours in some sessions and scoring an overall average of 80%. Meanwhile the app has slowly adapted, increasing the difficulty of some tasks and adding new ones.

One major development appears to be the return of her working memory capability. Six months ago she was unable to complete a simple test set by a neuropsychologist along the lines of:

If John has 20 apples and 5 grandchildren how many apples does each child get?

Trying to visualise the various elements of the puzzle and then bringing them together to complete the answer was just beyond her. I’ve just randomly tested her, completely out of the blue with the question above and she got it right.

Constant Therapy now includes simple arithmetical sums in her personalised program, and I’ve had to re-teach Amanda how to add the units, carry the ten and then add it to existing digits. The app includes an onscreen pad to write down the numbers in order to remember them.

But Amanda is no longer using the physical scratch pad. She is remembering the first column of numbers in her head; something we all do without a second thought…until we can’t. Her mental scratch pad is back.

The return of working memory is also helping with spelling as she is able to recall how to form letters with increasingly greater ease. It’s still slow and not always perfect, but she is now self –motivated enough to be able to plan when during her day she is going to spend time on her app.

As for the word board I mentioned a few posts back? Today her support worker has noted;

“Amanda made a sentence with words – big difference finding words – no hesitation”

The appointment with the lymphatic massage therapist resulted not in a massage, but instead the suggestion of a special compression sock. Amanda has been wearing it during the day for a week  and yesterday wore a pair of shoes she hasn’t managed to get on her feet for over a year.

Gym sessions are currently twice weekly and Amanda is enjoying using the recumbent exercise bike and is up to 15 minutes already. Once again this has sparked more motivation and she is increasingly pushing herself to stand regularly to stretch her legs.

Even remembering to do this is yet another leap forward.

On Saturday Amanda had a haircut. The hairdresser was meant to text a reminder the day before but didn’t – at least not to my phone. I mentioned this to Amanda.

“They did.” She said.

“I replied.”

I checked her phone which I thought she only used to answer my lunchtime Facetime call. Sure enough the text was there and she had responded with a ‘yes’ reply. This is the first time she has texted in 16 months.

On Good Friday, Amanda started on a nutritional supplement; Voluntastrols – a botanical supplement containing specific secondary plant metabolites extracted from citrus, theobromine, cacao and chamomile. Since then I’ve kept a close eye out for any changes in behaviour or cognitive ability

For many months she has tried to improve her spelling and alphabetical skills using an ipad app from Tactus Therapy This generates 20 words at a time and she has to drag and drop the correct letters to spell the word. She generally begins to slow down by word 10 or 11

On Easter Saturday, she completed 20 words for the first time without hesitation or complaint.

On Easter Monday, I received an email from a Canadian speech & language therapist (thanks Karrie!) who recommended an app from Constant Therapy. With a 15 day free trial it was worth a try.

This app has spelling, plus symbol matching and clock maths tasks as well as matching items to categories; speech practice and two-step object placement exercises. To set the app up and give her a baseline score Amanda had to answer 28 different questions. She did this with full concentration throughout.

The next day she sat the first set of 65 questions which she managed in just over an hour; that’s more than 60 minutes of full concentration.

The next day, and another 65 questions later she knocked 10 minutes off the completion time.

In the past 2 weeks I have also noticed she no longer says ‘sorry?’ (as in ‘pardon?’), every time I initiate a conversation. Her brain seems to have finally tuned in to the fact someone is speaking to her before she misses the first part of a sentence.

In addition there have been smaller, more subtle changes. For example she no longer confuses the names of our two cats,

Last week, on our regular supermarket trip she maintained grip on the trolley with her affected hand for the entire time.

Last night, without prompting, she correctly reset the temperature on the heat pump before going to bed.

She has also finally managed to negotiate the Playstation controller; a sometimes confusing mix of arrow keys and symbol buttons.

On Tuesday Amanda had an introductory hour at the local gym. One of the instructors has worked with a stroke recoveree as part of his training and so not only had a set of pre-prepared exercises, but also understood physical limitations and fatigue.

Amanda walked a few hundred metres on the treadmill and then used the recumbent cycle to pedal for 10 minutes. She was also shown how to use a Swiss ball to assist with balance and use a few muscles she’d forgotten she had!

14 months post-stroke she appears to have entered a further period of consistent and (thanks to the Constant Therapy app), measurable improvement.

She continues to take Voluntastrols each morning. She refers to the capsules as her ‘brain bombs’.

It’s apt that I’m writing this post on Good Friday.

This week has certainly been a little bit weird… and a little bit wonderful.

It all started last Friday when Amanda did her usual 3 hours at work in the morning. After dinner she spent 30 minutes practicing her spelling on the Tactus Therapy app. We then played assisted Scrabble for an hour. I commented at the end that she still seemed remarkably alert and perky.

“How long did you sleep for this afternoon?” I asked.

“I didn’t.” She replied.

The following day comments began to appear on the blog from a familiar-sounding name; one familiar to New Zealand TV viewers. He told me about a natural food – based product which had been used by a friend’s father as he recovered from a stroke.

I found the website  for the product and was intrigued to read about support for motivation and enthusiasm, brain health and cognition using a product based on 100% natural food extracts. Intriguingly there was also mention of support in recovering from brain injury, including stroke.

I sent the website link to our son who, studying for his psychology doctorate, would be able to give me a more informed opinion. He noted the site was big on benefits, but short on actual research.

I then talked to  a practitioner who is familiar with the product, challenging them on the lack of research or testimonials. They sent me some links to research not mentioned on the website.

Amanda and I agreed to give it a go.

Amanda took the first two capsules this morning. In the next blog post I’ll be giving you more information which will include the product name and any improvement I have noticed.

Also this week, I was contacted by Amanda’s speech therapist, offering further sessions (the first this year). I have also booked her introductory gym session and we have her appointment in two weeks for professional lymphatic massage at the local hospital to try and alleviate the leg swelling exacerbated by her relative immobility since her stroke.

All these separate events have somehow come together just this week and will hopefully work together pushing us forward and upward into a new and exciting phase of Amanda’s recovery.