Walk Out The Door…

So.. 3 days after hospital discharge.

Amanda took the opportunity of the peace and quiet to make napping an Olympic event over the weekend. This is good for brain recovery (for all of us actually), and made me realise how noisy and distracting her hospital room must have been. Even though she had a room to herself for the entire 3 months of her stay, there was still people walking past or coming in to check her or take her to physio.

The Occupational Therapist suggested rails for the shower. I was reluctant to drill into the shower surround and add permanent ones so looked at the ‘suction-cup’ options. No many in New Zealand, so I investigated overseas, on  US Amazon. I found something suitable and chrome ratehre than plastic to go with the existing shower metalwork. So I ordered from Amazon U.S. on the evening of Friday 19th May  (NZ time) and they arrived on the morning of Wednesday 24th and have been put to good use already. The other advantage is that they can be removed and taken with us when we go away next weekend.

These next 2 weeks while I’m off work are about getting into a new routine. sS this morning I got up at my usual 6am as if I was going to work and just let Amanda do her own thing (with me on ‘safety watch’ just in case). She got up, showered, dried, selected clothes and put them on, and then got breakfast and a cup of tea, all with very little input from me. Truly amazing after just 3 days being at home full-time.

This morning we had an appointment with her GP. Just a catch up visit now she has been discharged. The Health Centre doctors have been getting all the regular updates to her medical notes and obviously discussing them. The first thing her doctor said was;

“None of us ever expected to see you again, let alone walk in here.” Her parting comment to Amanda was ‘You’re an inspiration.’

Both of them walked away with big smiles on their faces.

Home at last…

Amanda was finally discharged from Nelson Hospital at 1pm , Friday 26th May, one week short of 4 months in hospital.

Although she didn’t actually leave until 1.30.

The day before the ATR unit had a special admission.
The former matron (Margaret) who herself set the unit up many years ago had a stroke while undergoing surgery.

Many of the staff know her as their old boss and had mentioned how well Amanda had recovered so far. Margaret was desperate to meet her. So Amanda stopped on her way out, took a detour and spent 10 minutes with Margaret, who appears in better shape 3 days after her stroke, than Amanda was 3 WEEKS after hers. She was so inspired to see Amanda’s recovery and it gave her the motivation to get well again. They chatted about how they felt, how their stroke had affected them in different ways and their hopes for recovery.

Once Amanda had said goodbye and good luck to Margaret she headed for the door. The Occupational Therapist stopped her and asked if she might be able to come into the unit from time to time in the future to talk to, and motivate some of their ‘younger’ stroke victims, so they could hear her story, share their experiences and see what to aim for. Of course she will be very happy to do so.

Now we’re home it’s time to get into a different routine. I’m off work for two weeks. Then after that we have 2 hours of assistance each day, paid for by the local health board, to look after showering, breakfast and then lunchtime activities. This will be more of a supervisory role as Amanda continues to recover and the care can gradually be withdrawn.

In addtion Amanda will have home visits by a physio and a speech therapist several times a week.


Almost Home…

This week, in preparation for discharge this coming Friday, Amanda has been home twice with an occupational therapist so they can see how she handles everyday tasks and what equipment she might need. As a result they actually REMOVED the rail she uses to help herself get up off the bed! But we will need a couple of safety rails in the shower and also hand rails down the back steps. We have to keep telling ourselves these will be temporary as she will continue to recover the feeling in her right side and hence her sense of balance.

Her right arm continues to regain movement and her brain has got to the stage of sending 2 basic signals – hot and cold. She has also commented on her tongue and cheek on her right side feeling icy cold, yet perfectly normal to the touch.

As a result of the trips home I gave her her handbag back, so she had somewhere safe to carry a door key and which, as any woman knows, is a significant milestone.

We didn’t bother bringing a wheelchair home as a back up this weekend and she also went the entire time without resorting to needing a sling to support her right arm.

The battery on her watch died and it transpired the whole watch is buggered. So I found an old Casio digital watch she could wear. This revealed she actually tells the time by looking at the position of the watch hands.

Just like letters, it turns out she also has problems recognising numbers. It took 15 minutes on Saturday for her to remember (after much repitition) the 4 digit PIN on her phone. So on Sunday I did away with the symbols for numbers (1,2,3 etc) and resorted to using coloured tokens for simple adding and subtracting practice. This gives us something to practice once she is home full-time (as of next Friday).

For some idea of how her brain is currently working, she misread the word ‘apple’ as ‘100%’ I can sort of see how she got that.


Saturday evening. Half a glass of red wine, The first in over 4 months. Purely for medicinal reasons of course! Then making use of her right hand to carefully control a bowl of yogurt.The third photo shows Amanda concentrating on trying to put all the tokens into the bowl. Not there yet, but we both know this will come with practice.



Memory Discharge…

After leaving Amanda’s leg splint off at home the physio has agreed it can now stay off permanently. One of the things on her ‘wish list’ was to start showering standing up and that is now happening, at least at the hospital.

On Wednesday she spent an hour making scones in the Occupational Therapy Kitchen which were then shared with the other patients. She talked about her cake making prowess and as a result the charge nurse is bringing in her special chocolate cake recipe for Amanda to bake tomorrow!


Movement continues to return to her right hand and arm as the shoulder regains strength and the brain continues to slowly re-wire the connections. She is now able to touch her nose and should be able to lift a cup to her lips later this week.

On Sunday I sat her down to watch the recent BBC documentary made by BBC journalist Andrew Marr. She was very interested to see how other people cope and we noted how her stroke appears to have been more severe than the people shown, yet already her recovery has outpaced most of them. Well worth a watch on youtube, or click the link above.

Also a return to retail therapy with a quick shopping trip to buy some track pants and matching top now the temperature is beginning to drop. She enjoyed a ‘proper hot chocolate’ at Columbus Coffee afterwards.

Great ‘phrase of the week’ this week; We watched the latest Doctor Who and she said she was gong to ‘put it in her memory discharge’ After a bit of discussion I worked out she meant she was going to forget it.

Marmalade is the new jam…

Highlights this week have included an effective ‘all clear’ from the follow-up MRI scan which happened on Monday. They could find no cause; no tumours, lesions or aneurysms or anything to suggest it might ever happen again. So basically a spontaneous bleed.

Amanda’s new glasses arrived at Specsavers 3 working days (as opposed to the expected 10) after ordering. So she was able to test drive them at the weekend. As a result she has started using her ipad to read things like the news and pinterest. The only issue is trying to get her to remember her PIN!. I ended up diabling it.

She also began reading the Facebook posts I have been making on her account which I hacked (and which this blog is based on) but got a bit freaked out by the early ones when things looked a bit dire, so has stopped for now.

Earlier in the week she wrote out the complete alphabet with virtually no prompting. Movement (and more importantly;control) is also slowly starting to return to her right arm and hand.

She still has ongoing issues with choosing the right nouns though.
As an example she told me she made breakfast – toast – one day last week.
“Did you have anything on it?”
“What flavour jam?”
“No flavour, just jam”
“Not strawberry or raspberry or blackcurrent?”
“No, just jam”
“So just red jam?”
“No, it wasn’t red, it was just jam”
I thought for a moment…
“So it was…marmalade?”
“That’s the one, marmalade!”

We also tried today (Sunday) at home with her walking without the splint in her shoe which corrects her ankle and toe position when walking. She managed fine without it so hopefully the physios will agree that can go permanently this week.

Eyes Right…

Sisters Sue & Liz are now on the first leg of their return journey to the UK after 12 days of visiting and helping hugely in Amanda’s recovery.



On both days at home this weekend she was able to make her own lunch and wanted to help with sorting out the washing and other tasks which, although mundane are huge physical and intellectual leaps for her at the moment.

My hunch on arranging a trip to Specsavers paid off. The optometrist confirmed some optic nerve damage which should improve, but also noted her prescription has actually improved! Her current glasses don’t help her distance vision and hence her depth perception when walking. She should also now be able to read clearly without glasses although still needs some persuading he is right and she is wrong on this!

New glasses which should help to convince her (and improve her quality of life) should arrive in around 10 days. The optometrist was superb. He totally understood stroke recovery and Amanda’s issues with not being able to accurately read a standard sight test. He improvised and took an hour to get her back on track while explaining a few eye exercises which will help as well.

But on the sublect of reading… first positive signs of this earlier this evening when looking at next week’s hospital menu. She said ‘Tuesday’ as she read it, making a connection for the first time with what her brain ‘sees’ and what her mouth actually ‘says’.

MRI scan tomorrow (Monday) afternoon, now her brain has healed enough to see if they can find out what actually caused the stroke in the first place.

…and drugs and rock ‘n’ roll…

Reading today’s news I realised Amanda was actually kept alive by the precise drugs which killed both Michael Jackson (Propofol) and Prince (Fentanyl). When she is feeling better I may get her to record a few disco tunes. You never know…

Amanda’s care team were pleased her long weekend at home went so well. Her doctor says her recovery is going ‘better than they could have hoped for’ and has given the OK for weekends at home from here on in.

Easter at home

Amanda has been at home for the Easter break & goes back to the Nelson Hospital Rehab Centre tomorrow (Tuesday).

We have packed a lot into the last few days, thanks to assistance, catering skillz, teaching expertise and general sisterly support from Liz & Sue

Saturday morning was Nelson Market followed by lunch @ the Riverside Cafe and then a long walk around an antique & collectors fair.

With rubbish weather on Sunday we concentrated on reading & writing and remembering what numbers are!
In the evening I gave her back her wedding & engagement rings which had been removed in the Wellington ICU 11 weeks earlier.

Today we had a trip to Kaiteri for lunch followed by a real fruit ice cream. Amanda is currently zonked – out in the lazyboy and will probably complain again tonight about being sent to bed at 10pm!

So a very successful first long trip home. A few lessons learnt about over-extending her stamina, but the wheelchair remained in the car throughout, and despite a few minor stumbles she continues to be trip/slip/fall free.

She is not looking forward to going back tomorrow but realises there are still some bits of both body & brain which need fixing!

Walk on by…

This week Amanda has continued to improve with her showering and dressing skills.

I was able to bring her home for the day on both Saturday & Sunday. The hospital lent us a wheelchair but it stayed in the car the whole time. She was able to just use a stick to walk up and then back down the 3 back steps and also around the house & garden.

As Sunday was the better weather day we went out – first to Rabbit Island and then we agreed it was time to go out into the big wide world again… so we went to the shopping mall!

The stroke has impaired her vision . Amanda normally wears contact lenses. Her glasses are only a back up and so not her pre-stroke prescription. So she has the double whammy of wrong glasses and C – grade vision! While at home she just wanted to check to see if her contact lenses were any better. Bearing in mind she is right-handed she somehow managed to get her contacts into both her eyes FIRST TIME before realising they didn’t make any improvement. But at least she tried.

This morning, back in the Rehab Unit, I held her stick while she walked, entirely unaided the 40 metres or so from her room to the physio suite. When I told the physio he happily decided she doesn’t actually need a walking stick anymore – Amazing!


As I suspected now the basics of walking have been re-established he has decided to concentrate on getting her right arm and hand back on line. This is a bit more complicated than the relatively ‘primitive’ action of walking as hands are far more sensitive. But like the legs it’s all about repetition and more repetition, and she is very motivated to get it working as the promise of time in the occupational health kitchen looms later in the week..!


As I write, Amanda’s sisters, Liz and Sue are on their way from the UK to New Zealand for 10 days, and currently between Singapore and Auckland. It’s wonderful she has come so far in the last 10 weeks that she will be able to fully appreciate their visit.


A short visit home…

Walking continues to improve. No more wheelchair, no more frame, just a stick and as much practice as possible each day.


The occupational therapist continues to be ‘amazed’ at her daily improvements in showering and dressing.

The speech therapist is using the strength of the ‘strong’ side of Amanda’s brain ( the creative right side, not the damaged analytical left side). For example instead of giving Amanda instructions the therapist is just putting down the 4 scrabble tiles and letting Amanda work out they can spell ‘JOEL’ or ‘JESS’ for her self. This afternoon I tried a bit of an experiment to see if she still understood how to play noughts and crosses. Not only did she understand, she could see, after 3 moves the game was un-winnable!

The highlight of the week came today. After the brief car trip earlier in the week, her care team were confident enough to allow me to bring Amanda home briefly ( 4 hours) for some quality cat time, a bacon sandwich and a proper nap in a proper chair!

Exactly 2 months ago she sat in that exact position in the kitchen and told me she thought she was having a stroke. I never expected to see her back there so soon…