Off to Lake Garda from tomorrow morning onwards, so quick blog update.

Things I can remember from this week. kp feels “ashamed” about her disabilities. That’s the only word she could come up with to describe how she feels. That was on one of the lower days of the week.

She has been preparing for her hols next week by getting her hair cut, and last night I had to sort her bikini line, shave her pits and legs, and scrub her with some scouring pads (exfoliating) in readiness for her spray tan today. She is being pampered today as well. (nails and stuff)
Mum and Dad came for dinner on Wednesday night. That was nice.

Two Hydros and a Physio this week. No more hydros. She was due one more, but has swapped it for a physio.

We got a letter yesterday from the DVLA advising us that kp has to have a field vision test in the next 3 weeks, otherwise they revoke her driving licence. She is booking that today for when we get back.

The neuropsychiatrist phoned last night to discuss kp’s mood swings and to arrange for a weekly visit with someone. kp got a bit confused in the call, so she is writing it all down in a letter.

Generally, a good week. The tiredness seems to be subsiding a bit.

Well, we had a great time in Sirmione, Lake Garda.

On dad’s advice, we took the wheelchair. It was a good move, even though we only used it at the airports. Paris Charles de Gaulle is immense, and there is nee way we would have made connecting flights without it.

The weather wasn’t brilliant. I think we managed 1.5 days of sun out of the 6 days we were there. But it didn’t feel like it. But it was still t-shirt weather throughout.

I’ll mostly let the pictures do the talking, but here are some key points I remember about the holiday.

kp walked a LOT. She must have done half a mile a day minimum. Her pain broke through quite a lot, and we had to ramp up the patches, codeine and diclofenac this week. She didn’t quite get as bad that she wanted to take a morphine tablet. We were at 250ug worth of fentanyl patches for the majority of the holiday, with multiple codeine and diclofenac during the day as well.

The hotel was called The Grand Hotel Terme and was in the perfect spot for views. We had a corner room and one window looked over the castle, the other over the Lake, although for the first night we were in a different room with a terrace, but this involved steps (as well as the lift), so they kindly moved us.

Here is the view out of our new bedroom.

Day 1, we mostly stayed around the hotel. The hotel was one of 3 around Sirmione that had naturally hot spa water. It came out of the ground at 70′C, and filled a pool, the net temperature being 38′C. It was gorgeous, but STANK to high heaven of sulphur and all the other volcanic stuff. It was beautiful to be in, and we went in every day at least once. Here is a picture of kp in her hotel gown and then one of her in the huge hotel corridors.

Day 2, we went to Garda on the boat. We went on the fast boat (20 minutes), and returned on the slow boat (1hr 15mins). Here are some pictures from Garda.

Day 3, we walked around Sirmione old town. It is beautiful, very olde worlde and lots of wildlife around. We saw Swans with cygnets, some wild duck-like creature sitting on 2 eggs, and later we saw the same creature (different one), with 4 little baby versions that kept jumping on the mum’s back for a ride. Dead cute.

Day 4, we took a boat trip around Sirmione Peninsula with a funny tour guide. He knew enough english to say the price of the tour and to do his spiels. He prefaced EVERYTHING he said with the word “Sorry”. We would be sitting there, saying nowt and then all of a sudden, he would turn around and say……

Tour Guide :- “Sorry, disizda vundafulpoin awish dee spawaters ender dee leck”.

We couldn’t understand much of him and kp kept asking me what he said. I just told her what I thought he had said.

Day 5, can’t remember. Oh yes – massage day. We treat ourselves to an hour’s japanese massage each. It was gorgeous, very special, and so it should be at £50 a pop !
Day 6, we had met a couple earlier in the week called Anne and Ronnie. She was 67, and he was 70+ and they both hailed from Belfast.. He had a very bad back. And lo and behold every time we met them we heard the latest about Ronnie’s baaaaaaaaaack (Belfast accent). We knew all about his medication and how many tablets he had taken that day. Between ourselves, we called them Mr and Mrs ‘brufen (after Ibuprofen, the painkiller). They tipped us off about there being a market at Bardolino, so we went there on the last day. Fast boat there and back. It was heaving and we found it very hard going.

Day 7 saw us return home. We had to be up at 3.30am to start the day’s travelling. It was a long delay, with a delay at Charles de Gaulle. Here is kp falling asleep in her wheelchair.

It was a cracking holiday, VERY relaxing.

Marie had stayed home looking after the dogs. The house was like new when we returned and she had just cooked a Chicken for fresh roast chicken sandwiches. Gorgeous. Thanks so much Marie – you are a star !

It’s Sunday as I write this. 10:49am. kp is still asleep, and Marie has just phoned. Karen’s dad died overnight. I think he had had cancer for a while. She wasn’t very close to him, but you never know with kp how she will react. It’s her dad after all.

Bad week.

Not pain-wise, that was generally under control. But mood-wise.

The DVLA have asked that kp attend a Visual Field Test. This was on the same day as her physio. Unfortunately, I hadn’t been involved in the planning of it (my fault) and the day was a complete mess. kp had arranged the taxi to/from the physio session. There was an hour between the physio end and the start of the eye test. kp should have gone direct from one to the other, but didn’t.

We have a lovely taxi driver based in Esh Winning (Alan) that takes Karen on all her trips, but he can’t do school home time, which coincided with the time she needed picking up from the Eye test. So, the order of the day was the taxi took her to the Physio session, brought her back home. Alan was ready for her and rushed her straight to the eye test. Bit too rushed for kp. So, she’s starting to get a bit flustered.

The eye test itself was a bit of a disaster. Basically, they wanted to see what peripheral vision she has. She has been generally very tired this week, and add the flusteredness in and she was all over the place in the test. They shine little spots of light at the edge of your eyesight and she has to push a button when she sees one. The optician failed her on the test because there were too many false positives. She was trigger happy with the button when there was no light there.

So, she explained her tiredness and they have rescheduled for the monday.

So, even more flustered now, she had to navigate herself through Durham to the taxi rank. Which took all kp’s mental and physical energy. When she got to the taxi rank, she started to get in the taxi and the taxi driver (let’s call him Mr Knobhead from now on) wouldn’t let her sit in the front seat. kp doesn’t like to do back-seat since the accident, but she was too tired/flustered to explain, so she got in the back seat, but the taxi driver was tutting at the speed she was taking to get in. When she got in, he drove off without waiting for her to get her seat belt on.

When they got home, he wanted to drop her off at the end of the drive (well, it’s probably 40 yards long). Karen asked him to drive to the end, which Mr Knobhead tutted at, and he drove her a bit further along the drive, but not close enough. She asked for a receipt, and he virtually threw it at her.

So, not a pleasant experience.

I blame myself for the day, as I hadn’t been involved in the organisation, which normally I would.

Friday, in hindsight, we made another cockup.

It was a 12.30pm appointment for a medical-legal report with a consultant at the neurorehab centre in Newcastle. It was supposed to take an hour, so I thought I would meet her there (from work) and return (to work) after the appointment. Sounded great (in theory)

It was the worst rain of the summer so far. (irrelevant, but it will help kp remember it in a year’s time).

We were there on time and the consultant saw us. With the exception of a small physical examination of hands/arms/legs at the end, it was just loads of questions about how the stroke affects her day to day life. He covered everything possible (that we could think of).

Some interesting things came out of it though, which hadn’t dawned on us.

kp has occasional problems swallowing. We just thought it was a “reduced sensation” thing. It turns out the problem is not related to that, but to the trouble kp has with 3D stuff, When she has a mouthful of food and it’s all chewed up ready to swallow, she can’t work out how to get her tongue to get it to the back of the throat. Very interesting.

The consultant did a test which kp has had done before. It’s the one where he touches one of her knees and she has to tell which knee he is touching. She can do this fine as long as he doesn’t touch both knees at the same time. If he does this, kp only feels the right and this is because of the neglect about things on the left hand side. He then said, in bad cases, people only eat the food on one side of the plate. I remembered back to the time when kp did this. She has come so far.

Now, unfortunately, he went on to say a real life example of where this could be an issue. He brought up the driving issue. He gave the example along the lines of if Karen was driving along and a person walked out from the right hand side of the road, at the same time as someone walked out from the left, she would only see the one on the right. kp understood the implications of this, and I could see it being stored on her back burner.

This was also the opportunity for kp to ask some questions, which she did.

The whole thing (For kp) was a reaffirmation that her brain is damaged, that it won’t heal, and there may be still some recovery but not much until the end of the second year (April 2008). There were other points made, which I could tell kp was thinking about.

The appointment was supposed to be an hour but it was about 90 mins. About 15 minutes from the end, she got upset, very upset. She told the chap she was ashamed of how slow her brain worked, what she couldn’t do etc……He explained it was understandable, but it was not her fault etc etc…..

But, as we walked away from the appointment, she cried all the way to the taxi. She (and I) were wishing that we hadn’t come our separate ways.  I rang work and said I wouldn’t be coming back, and kp went home with Alan.

Lots of talking for the afternoon, and yesterday and today (Sunday), she is still thinking and talking about what has been said.

So, not the best of weeks, another busy week coming up, but this time we will plan better.

Monday – dentist / eye test (Karen’s dads’ funeral, but I don’t think she is going)
Tuesday – Zimmer and Crutches are being picked up, Physio and appointment with a neuro consultant (dp attending)
Rest of the week is quieter.

Especially sleepy week this week overall, but first the week, day by day.

Monday – some more time of work for me. This time to attend an eye test with Karen. I picked Karen up at the dentist, where she had had a filling. I paid the bill at the dentist, and it was £75 !!!! She had opted for the white filling amalgam. I was sweating for the rest of the afternoon because of that. We went on to the eye test that kp has been asked to do for the DVLA. We had some time to kill, so went for a coffee close to the opticians. The eye test was all computer controlled which was interesting. The lady set the test away and kp had to push the buzzer when she saw a light appear. They wouldn’t tell us the result of the test, they just send it on to the DVLA.

Tuesday – more time off work. Karen had physio in the morning. She went there herself with Alan (the ace taxi driver) who then picked her up an hour later and brought her to ITPS, where she had a coffee with me Julie (my work colleague) whilst I did the last few minutes of work I could cram in. We then went to see a Neuro Rehabilitation Consultant. Neither of us could remember what this visit was for. All we knew is that kp’s main neuro consultant had referred us there. It didn’t go too well at first. I felt I could sense a personality clash at first between kp and the consultant. He asked her a question along the lines of “what do you want out of the session?”. kp answered as best she could and followed it up with “if that makes sense ?”. His reply was “No, it doesn’t”. So kp answered again, to which he AGAIN replied “No, I still don’t understand”. Well, from my perspective, I thought he wasn’t being very understanding of her condition, and I could tell kp’s heckles were up.

kp:- What is it that you don’t understand ?

Eventually, she seemed to say the right thing. He excused himself from the room to go and ring our main neuro consultant. After 10 minutes he returned, and then everything was fine and we got on great. He was like a different man and we left feeling very positive.

The conclusion was, he is referring kp for Cognitive Behavioural Therapy and also referring kp back to her psychiatrist so that he can help her cope with the bad depressions she has.

After this appointment, we went straight to the doctors to get the prescriptions changed. We got the patches upped to 200, and the anti-depressants doubled.

Wed/Thurs/Fri saw no appointments. Michelle, Marie and Adele came up during the week and kp really enjoyed their visits. It left her very positive.

We are having our bathrooms renewed at the moment, so those are cracking on. The first (smaller) one is all but complete and they have gutted the bigger one which is going to have a bath in (with a seat for kp).

This week saw kp’s sleeping get to new levels. She has always slept a lot since the accident, but this last week (and  this weekend) seemed to have taken this to a new level. I don’t think it would be exaggerating to say she sleeps more than she is awake. And she gets annoyed about it.

Saturday, she didn’t get up until about 1pm. We went to IKEA to look for bathroom fittings. She went straight to bed on her return for a few hours.

Sunday (today), she got up at 8am for an hour and has pretty much slept until 4pm. She was up in the night from 1am to 3am, so basically her sleep is all over the place.

We are hoping to go around America (in a Camper Van) in October, and spent an hour this afternoon planning that trip. That’s pretty much it for this week.

This (upcoming) week sees only one appointment. Fracture Clinic at the QE Hospital Gateshead (Monday (tomorrow)). One of the things the rehab consultant recommended was retracing her hospital stays, so we are going to do that tomorrow to see if it helps her mood. It could go 2 ways he said, so fingers crossed it goes the right way.