Welsh, Wasps and short sleeved trousers

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?

 

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A month of ups and downs

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.

“I have a dream…at last”

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.

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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.

When phobias are good & reading with your ears.

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!

When you remember that you forgot…

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.

 

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One small step for man –another giant leap for Amandakind

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.

 

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“I can’t remember the right terminology. But I can remember the word ‘terminology’”

 

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

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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.