And we have Lift Off!!

Suzanne and Susie caught us on the hop this morning as we were expecting them at 11am and they arrived at 10.30am - they thought they were a half hour late and we thought they were a half hour early!! Still, it was fine as we weren't doing anything except had just sat down for a cup of coffee! They remembered the FES and so Susie did some arm and hand stretches whilst Suzanne set it up. It runs off one of those small oblong batteries and is quite small. I don't know what I really expected but probably something more impressive in looks!! But, no matter, it is impressive in results, and that is what matters. There are two electrodes which stick on Pete's right leg and a wire runs up his leg and plugs into a control box which hangs on his pocket. Then another pressure pad is attached to an insole which goes into his left shoe, again a wire runs up his leg and plugs into the control box, creating a circuit. So when he puts his left foot down it triggers the power and sends shocks to his right leg, causing the muscle to contract and his foot to lift a bit so makes his foot lift better when walking. Amazing!! It stays on all day and there is a pause button to press when he is sitting down and then he presses it again when he starts walking - thereby turning himself on and off and causing lift off! I certainly didn't expect that we would be able to keep it, but it seems we can, which is brilliant. Suzanne tried a few different spots on his leg and eventually found the most effective which she has marked on his skin so that I know where to put the electrodes. I will have to put crosses on with indelible marker I think until I know exactly where to put them! Pete can up the power if necessary as his muscle can become fatigued and then needs a bigger boost. There were no signs of pain when they first activated it and, indeed, he didn't even flinch and his hair stayed in place and didn't stick up on end, so all is well.
He also has to do more walking as really all he is doing is pottering around the house, no distance covered. So his instructions are to walk up and down our hallway (which is very long and straight) five times, three times a day. This will build up his endurance and distance - so more exercises to add to the daily routine! But at least he has to do this on his own and doesn't need me there. He also has to practice more with the ordinary stick rather than using the quad stick.
I have put two photos on, one of Pete's right leg with the electrodes attached (not a pretty sight) and another of the control box on his pocket, on which I noticed he has already got clay all over, but I didn't see that until looking at the photo!
So, that covers the arrival of the FES, and another day is done, indeed another year is done.
We both wish everyone a very happy, healthy and prosperous new year. Especially all stroke survivors and their families, and very especially everyone who has been so good to us in various ways over the last few months. Thank you all so much. HAPPY NEW YEAR!!

Exercises and Eggs!

Have you ever tried to eat a boiled egg using just your non-dominant hand? Not easy, as Pete discovered at tea time today! For a start the egg won't stay still and just swivels round in the egg cup, and then you can't get the spoon in the right place due to the shape of the egg! In the end we just had to take all the shell off and put it on a plate so that he could eat it. When he decided that was what he wanted for tea he got two eggs out of the fridge and tried to bring them to the cooker, whilst also using his stick! Something had to give and, unfortunately, it was one of the eggs which ended up all over the floor! He hadn't planned that manoeuvre very well - but will know better next time!
We did loads of exercises today and it went so much better than yesterday which proves the point that they must be done every day. Pete did 30 lifting his leg from the knee whilst lying on the bed, then 10 foot sliding followed by 10 sit to stands. Sit to stands have to be done with his left foot further forward than the right in order to push up on the right leg. I think he is a bit frightened of what Suzanne will say tomorrow if he hasn't been doing the exercises!!
We have also been doing some writing of names today without copying. Pete can write his full name on his own providing I give him the first letter P, this was totally on his own and without copying. Then it was on to writing my name and Martin and Adrian. He can write these if I tell him the letters, it takes a bit of thought but he did it several times. As it is quite a while since he has done writing I was really encouraged by this. It seems as if he may be getting some letters back into his brain and can write them if you just say the letter - an impossibility a couple of weeks ago. Of course it is just a few letters at the moment - but slowly, slowly the track is being made.
More of 'the book' in which Edwyn has now been transferred to a rehabilitation unit so is getting more interesting again as can compare it to Pete's progress and the therapies used to achieve results. Edwyn had the full right side paralysis just like Pete.
Personally, I have felt a bit down this evening, just that feeling again of being on my own trying to cope and am I doing alright? Whatever, I am doing the best I can and I know these feelings will pass as they always do.
Tomorrow Suzanne brings the FES machine (if she remembers, I'm sure she will) so that should be interesting! Pete has practised a bit with the normal walking stick, he is ok on the level but a slight slope throws him off balance still and causes wobbles, but practice makes perfect as they say.

Mediocrity

It has been a pretty mediocre day today. It did start badly when Pete decided to make beans on toast for his breakfast and it didn't really go as planned. He hit a couple of problems and got quite upset - probably because he thought it would be fairly straight forward and he could manage it on his own. I reassured him that it will all become easier with practice but I think he just gets so down at not being able to do something so simple that he never even had to think about before. He did manage to get his own lunch without any trouble - only a pasty, but it involved getting it from the freezer, defrosting it in the microwave, putting it on a piece of baking paper and into the oven and removing when hot. Sounds simple, and it is, but it is another task mastered which involves quite a few steps which we never actually think about, we just do it automatically but Pete has to think every step and how to do it and plan it.
After lunch we did a few exercises, not as much as we should have as, again, he didn't get on so well. This is because we haven't done any since Monday, which is too long, we have to do them every day if we can. I have no excuse for not doing them with him, purely couldn't be bothered - bad, bad, bad. I won't make that mistake again as it is purely repetition that gets everything going again. We read a bit of 'the book' which had a couple of funny incidents which made us laugh. One was when she left him alone for about a minute and he managed to fall out of a pretty shoddy wheelchair but she wasn't going to admit to the staff that it had happened!! But he had other ideas and tried to tell them it was her fault - but, as she said, the aphasia was useful in this incident as they didn't understand him!!
Then, whilst waiting for Martin, we tried a few sounds for about 5/10 minutes. Not much progress but then went on to gesturing thumbs up for yes and saying yes and thumbs down for no and trying to say no, I was doing it as well as we were going quite fast in the hope the word no would pop out automatically - and I'm sure it did, only once, and I may be imagining it but it definitely sounded like it. We need to get gestures going as a means of giving clues, we have got the thumbs up and thumbs down and the ok gesture, but that is all at the moment and Pete doesn't always use them appropriately, also trying to get pointing mastered as against just generally waving his hand about.
Pete's leg , from the knee down, and his foot are again getting very cold, not just cold but icy, icy cold. Funnily enough I don't mind him putting them on me when in bed to warm them up, before the stroke woe betide him if he came anywhere near me with cold feet!! In bed is the only time at the moment when they are warm.
And that is it for today, how can I write so much about a mediocre day?!?

Leaflets, Pamphlets and the World Wide Web

As today has been another day doing not a lot my mind has gone back to the days and weeks after Pete's stroke. After someone has had a stroke you are inundated with leaflets and pamphlets "explaining all you need to know" and telling you all about the effects and all the support that is available. But, in actual fact, I don't think any of them actually tell you how hard it is going to be or how long it is all going to take - years. All the support? Where? You also go on the Internet to find out all you can, but then comes the point when it all becomes too much and you really don't want to read another single word about it. I have recently been given another couple of websites to read, and after several days, I eventually went on them quite reluctantly, and, to be honest, I don't think they have helped at all. There are often articles in the papers about strokes and effects, for example today I read about a man who came round after his stroke to find he could only speak welsh - my first reaction? Well, at least he can speak! That is such an awful reaction and I feel quite ashamed to admit it. We have had a few conversations today which have really emphasised to me how bad this aphasia is - even clues go round and round in a very convoluted fashion. Nothing is easy. Today Pete wanted to say something about Martin - easy way would be to point to where his name is written down - but it involved Pete waving his arm in the general direction of the window, me not getting it, so over to the window we go and Pete waves his arm backwards and forwards pointing to the drive in front of the window, eventually I suggest someone driving in, yes that's it, then go through list of people who come and get the nod on Martin. I would even welcome a conversation conducted through writing notes. No leaflet or pamphlet told me that it would be this hard - probably just as well! They talk about aphasia causing speech and language problems and give suggestions how to deal with it, but none seem to tell you that ALL communication skills can go, although the intelligence is still there.
I think that is enough moaning now - I'm sure you get the picture! But it helps to have a moan sometimes.
The photo today is of Adrian playing at a gig with his band 'Spectres' just before Christmas. They are a VERY loud band but this just seems to add to their appeal. They play loads of gigs in Bristol and all round the country in fact and are doing very well. Adrian and one of the other band members also have a recording label 'Howling Owl Records' and are recording other Bristol bands and making a name for themselves. Adrian is the one on the left with the gold glittery guitar, not one to fade into the background!!

There it was - Gone!

Well, that is Christmas over for another year. I hope everyone had a good time and enjoyed themselves like we did. We had a really great time with Martin and Mel and the kids on Christmas Day and Mel set a very festive table and cooked a very very tasty meal. Mel's parents also came over during the afternoon so that was nice to see them. They helped me a lot when Pete was in Bideford and I am very grateful to them. There was obviously a lot of noise during the day with talking, excited children, crackers and party poppers - so, at one point, Mimi (Mel's miniature dachshund) took refuge with the only person being quiet! Pete!! (photo today and also one with Martin and family) He was very happy to have her on his knee and she dozed off a bit which pleased him.
Boxing Day was equally enjoyable when Martin and family came to us for the afternoon and the kids had more presents as we saved ours til then.
So there it was - gone! The only thing that was a bit poignant and sad was that Pete couldn't join in as usual which I know upset him a little, but he did try as much as he could. It also really tired him out and today, which has been quiet, he has dozed off a few times, a bit more than usual.
I did let him have a couple of glasses of wine last night, it seemed mean not to, although one of his tablets advises not to take with alcohol, but he seemed ok and didn't have any after effects thank goodness.
And that is it I think, hopefully Pete will be able to communicate better next Christmas, but I am not banking on it!

New Challenges

Christmas Eve is here! Santa has already started his deliveries! Much excitement among all the little ones! Tomorrow we are off to Martin and Mel's which will be fantastic as there are still believers there! Mel is an excellent cook so we know Christmas lunch will be superb and we are so looking forward to it.
So, back to today - Suzanne and Susie came for physio, bearing a gift!! An ordinary walking stick!
This is the first of the new challenges. Pete took to it very well indeed, surprising us all, but he has to just do short practices to start with as, obviously, he has to readjust his balance. The biggest problem we foresee is that when he stops to do something (eg switch on a light, or pick something up) it will fall over! The one he uses now just stays there as has 4 prongs. Perhaps a wrist strap or something will solve that problem, we will experiment and see. The other thing they are going to try is FES (functional electrical stimulation) and they will bring that machine next Monday. Sounds scarey but Suzanne has assured us his hair will not stand on end!! As I understand it, and this may not be quite right, they will attach electrodes to his leg on some of the nerves, send a very small electrical impulse through them, and this will send messages to the muscles and wake them up and make them contract, thereby making his knee and foot lift up better. They say it will just feel like pins and needles, let's hope they are right! The third, and final, challenge is for him to attend the Vista (I think that's right) group at the hospital which is held in the physiotherapy gym and they have lots of equipment like exercise bikes, treadmills, etc. they are going to try to start that in February as will definitely be ready for it by then. This will pose problems getting Pete there but we will do it by hook or by crook. So that's Pete's agenda sorted for the new year.
My challenge is the dreaded driving lessons!! My provisional licence has arrived, complete with horrendous photo, so no more delaying tactics! Although, obviously, I will have to wait until the new year - at least!! It may then snow, perhaps, it is a possibility, yes??
Anyway, that's it for today except to say I won't be writing a post tomorrow so I would like to wish everyone a very happy Christmas - especially all stroke survivors and their carers. Have a good one everybody.

Mr. Angry visits!

First of all, Pete had a better night last night and slept quite well. It almost seems to go in cycles whereby he sleeps ok, then as the nights go on, he wakes up more and finally has a night when he is more awake than asleep and then the cycle starts again. It is all very odd and I have no remedy for it other than to just go with it.
Well today Pete seems to have been a bit up and down during the day with a couple of visits from Mr. Angry! Not Mr. Extremely Angry, thank goodness, just short sharp bursts of temper. They happen mostly when he is trying to do some sort of task (for want of a better word) and can't do it properly first time. For example, today he was trying to get a mixer off the top of the fridge/freezer and it was obstructed by some empty ice cream cartons (it was he who decided to keep them, not me) and one fell so the rest of them were flung in all directions! I just left him to it and he then picked them up and marched off to the bin with them! I appreciate he finds it extremely frustrating not being able to do things easily, but he knows that temper doesn't solve the problem. There have been a couple of other episodes today over small things. They have not lasted long though.
There has been no rain today but it is coming in again tonight. I have never been so glad to live at the top of a hill! Apparently last night the road at the bottom of our hill flooded and some people had to leave their homes, but, thankfully, the houses didn't actually flood. We have plenty of water running off the fields at the back but it is rushing down the sides of the roads.
I think we are ready for Christmas now - plenty of food in! I have been on the stress diet since Pete's stroke and was quite shocked to see this morning that I have lost over a stone! Still, that means I can eat as much as I want over Christmas! I have to get Pete on the scales one day soon, but keep forgetting, but his appetite seems to have waned over the last month so must check that he is not losing too much although, in general, he seems quite healthy. I need to feed him lots of pies!!!!
Tomorrow we have the only session of physio this week, he misses the second one as it would be due on Boxing Day, then I need to do some cleaning and then put out all the biscuits, chocolates, etc. so they are easily got at! Then let the non-stop eating begin!!! Why do we behave like this??

Bad, bad night.

Last night was a very bad one for Pete with him not sleeping at all well. This seems to be a bit of a problem for him, I'm not absolutely sure why. It could be that he wakes up with his arm aching or it could be that his arm just makes him uncomfortable as he can't move it and it gets in the way. He sleeps either on his back or on his right side. Also, although he starts off the night with his arm splint on, he usually takes it off at some point as it is a bit cumbersome, and this could make his arm ache. His arm is also tightening up again as the effect of the Botox wears off. The next dose is on 15th January and the physios think he will get a bigger dose to make it last longer, so I must remember to mention that it didn't last the full time. When I made a cup of tea first thing this morning I could see that Pete had had one at some point in the night. He has been taking paracetamol to help him sleep but he wants to take more which I am not sure about, and seems a bit pointless as they are not really helping.
He was very tired this morning and when I went out for an hour I think he had a bit of a doze, but I was only gone an hour so he wouldn't have slept for long and he had emptied the washing machine and put the drier on, so definitely would only have dozed for a short time.
We have done plenty of exercises today and also tried to loosen his arm a bit, but that seemed painful for him. We have read some more of 'the book' which, at the moment, is all about the physical effects Edwyn had and the myriad of infections he got. It seems words do come out without much effort, but also they have employed a private speech therapist to go in to help him, an option not open to us - so, all in all, Edwyn did have a head start on Pete.
We watched some Christmas films this afternoon, the regulation ones with children and a romance, when they got to the happy ending Pete was trying not to cry and we were both laughing - he is not impressed with this emotion business!!
Pete has been fairly quiet all day. It could be because he is tired or it could be that the weather just makes you feel down - it has rained very heavily non- stop all day. We have had the lights on all day and the wind has also been howling round the house. There has been serious flooding in a nearby village - this has actually been the wettest day yet.
So, to cheer us all up, a beautiful picture of Ella ready for her school party yesterday.
And ..... We won £15 on the lottery last night!

End of the World - Not!!

This is going to be a short post, for a change!
Well, the world didn't end and we are all still here, so that is yet another prediction that was incorrect! Today was also the shortest day but, in actual fact, because the weather was a bit better (for one day only) we seemed to have a day when it was lighter for longer.
Anyway, we have done no exercises and not read 'the book' but we have a good excuse in that my sister did manage to get here so we have just had a lovely day with her.
So, there you go, that's it for today.

Words in his Head

We started badly today with another episode of confusion. It lasted about 30 to 40 minutes when Pete just seemed very puzzled. We awoke about 7 am and he went to the bathroom whilst I made a cup of tea and then we got back in bed. Pete started looking around the room and at his wheelchair with a questioning look and also sometimes listened intently to the news on the tv. He did answer me that he knew where he was, who he was and who I was, but once or twice he answered no to did he know why the wheelchair was there, but then answered yes he did. I established he had no pain and didn't feel sick but when I asked did he feel confused, I consistently got the answer yes. So worry worry time again. It is if he doesn't acknowledge me I will panic as that was the second indication I had that all was not well on the day of the stroke. He seemed to understand the news on the tv but really had to listen and concentrate. Then, after about 30 to 40 minutes, it was like a fog had lifted and he smiled and came back to normal. Now I don't know if this is alright or not, but I have no confidence in his GP who has never even bothered to check whether we have any problems or questions, but Mel suggested I ring the ward at Bideford hospital which I may do when Pete is having a snooze sometime as he doesn't like me making a fuss, it really angers him, so better he doesn't know!!
I had a really nice time with Mel and her Mum, we had a coffee and chat in town and I really value these times as I can be me again for a while, so thank you to you both. It is like a bit of respite time.
Speech therapy went well and today Bev tried him on sounds again. Then she wrote some names and let him look at them, then covered them up to see if he could write them (only one at a time). He was allowed a quick look if he couldn't remember the next letter, then it was covered up again and he had to write from memory. Ok, he could only do 2 letters at a time, but this is progress from straight copying. We will do this exercise again methinks.
Exercises this afternoon, then 'the book' and then I decided to ask him something I have wondered about a few times. If he wants to say something, can he say it to himself in his head? He said he can, just can't actually say them out loud. The same with words, he can see them in his head, just can't get his hand to write them. He can count, I know because when I say we will do this exercise 5, 10, 15, 20 times, he always stops after the requisite number, so I can't sneak extra ones in! He can tell the time and he can read and understand 2 or 3 sentences, but not much more. He looks at the tv magazine and if there is a programme he wants to see, he points it out to me.
I'm looking forward to seeing my sister tomorrow, hope she makes it despite all the rain. Of course the other thing is that the world ends tomorrow according to the Mayan calendar, so I may post tomorrow - or I may not!!!!!!!

Aphasia Problems Again

Although there is not much to say about today, the main problem has been communication again.
We have had about 4 episodes of question time! If I can't understand what Pete wants to say he tends to get quite upset now. I think this is because he feels he is a bit of a failure in not being able to give me clues. We have got an understanding that if he wants to know if I am going out to town then he looks at a particular clock, and then if I am going out I can tell him what buses I am going to catch, so that one works ok. This morning he got his wallet and got a £20 note out - I guessed he wanted to buy something, questions and answers followed and I established what he wanted me to buy - this took about half an hour. Then he kept holding up the £20 and tapping his leg - I couldn't make the connection at all but he kept on doing it, hold up the note then tap his leg, what the Hell was it? Just about to give up when he did it again but tapped his leg slower, 4 times. I don't know what made me count how many times he did it but it suddenly came to me he wanted me to spend more than £20 - tap 4 times again, and I GOT it!! Spend up to £100 - the original 20 plus 4 more. It must have been so obvious to him what he was trying to say and so frustrating that nothing I suggested was right. This is what our conversations are like all the time. Sometimes he just looks in the general direction of what he wants to talk about or what he wants if that is appropriate but he still doesn't point to things, he doesn't seem able to make the connection. Gesturing is still difficult.
We have been out shopping tonight which Pete really enjoys. Only to the Lidl supermarket because that is always quiet and has really wide aisles which makes a big difference.
Susie came for physio this afternoon but, for some reason, I think he was a little bit more tired than usual so, although it wasn't too bad, it wasn't as good as normal, but plenty of exercises were done, just not as many of each one.
It has been wet and windy today and the heavy rain is coming back tonight. This doesn't usually affect us but my sister is planning on coming up for the day on Friday and she comes by train, so if we have too much rain it may wash some parts of the rail track away (as it did a couple of weeks ago) and scupper her plans - so fingers crossed we don't have too much.
Speech and language therapy tomorrow then I am off to town to meet Mel for coffee - looking forward to that - then back to do exercises and read a bit more of 'the book', which we haven't done today.

Is There Anybody Out There?

I have been blogging for nearly 3 months now, can hardly believe how time has gone, but no-one has ever commented!! I know people are out there reading it as I am a bit obsessive about seeing how many people view every day!! There seems to be an average of 40 views a day and sometimes it spikes up to the 60's, 70's and 80's and, the day before yesterday 93, Wow!! And I am amazed to see I have views from all over the world, Russia, America, Lithuania, Denmark, Poland and Israel, to name a few. I hope some of them are like me, caring for a stroke survivor, and I would love to know if it helps to read the ups and downs of someone else, also I would welcome any comments from ANYONE! Anyone can email me (shirleypdutt@gmail.com) or even tweet me @ShirleyDutt - so, is there anyone out there??? Tell me what you think - even if it just to say I write utter rubbish!
Back to today, got the tablets for Pete, we are lucky in that he only has to take 6 a day, doesn't seem like many considering the severity of the stroke - but we are grateful to have to take so few. Apparently the main treatment after a stroke is just aspirin or paracetamol and tablets to control blood pressure. I also finished the Christmas shopping, thank goodness, and cards all posted, only got to finish food shopping now.
We did the whole range of exercises this afternoon, finishing up with the step ones. Pete should do 20 but only managed 15 today as then he started tiring and started dragging his foot off the step rather than lifting it, so we called it a day.
Then back to 'the book' with a cup of tea. I am disappointed with the aphasia side of it as thought Edwyn had no speech, but it seems he could say words. He couldn't read or write or say sentences that made sense, but he could say words. Now, as regular blog readers will know, this is the monster in our lives - absolutely no speech at all, so I was hoping this book would help us in saying how someone else coped, but it is not to be. Don't get me wrong, Edwyn suffered very badly physically in the beginning, much worse than Pete, but selfishly I wanted someone else to be the same as him. Wrong, I know, but that is how it is. We will carry on though and see how the days unroll for Edwyn.
Also we will carry on and see how the days unroll for us!
Photo today is Robbie in his school play - all I can get out of him is that he is 'a child' and it is about Victorian Christmases! He looks like butter wouldn't melt!!!

Still on the Level!!

We are still on the level, two days now without the see-saw going up or down - and I like it!! It is much easier to cope if we are just gently rolling along without any extremes.
I went off to town this morning and whilst I was away Pete was very busy with his modelling - to the extent that he didn't hear me come in, so no cup of tea ready!! Bad! He had music playing and was very absorbed. Good!
Suzanne and Susie arrived for physio and, as usual had a good session with a couple of new exercises using the large gym ball. One was they rolled the ball to him and he had to kick it back with his left leg whilst standing unaided, they just had hands ready to catch him if he wobbled. Then he had to bounce the ball as hard as he could, again whilst standing unaided. This helps with weight transference and aids balance, he did really well on both, very very little wobbling. He also did the dreaded right foot sliding exercises and also ones lifting his right leg from the knee only, using hamstrings (I think) and not his thigh muscles, these are done whilst sitting up with legs outstretched on the bed. More toe wiggling which seems quite easy for him now although his big toe doesn't join in yet!! Step exercises in the kitchen which we now have to add to our routine.
We read some more of 'the book' and it seems he did suffer from the dreaded aphasia. We have just got started on how they dealt with it but I think he had intense speech therapy for quite a time. I am hoping it will describe some of what they did to overcome it. If anyone is interested, the book is called Falling and Laughing, the restoration of Edwyn Collins, written by Grace Maxwell. If you are in the same place as us you will read it avidly. We read at least 30 minutes a day, more if Pete can process it.
Back to town tomorrow to get Pete's prescription for his tablets - once a month we get them, it would be better if they dished out 2 or 3 months at a time, but apparently the Government changed the rules a few years ago, a month's supply at a time and that's your lot!!

Busy Day

After yesterday getting absolutely nothing done, today we seem to have done quite a lot and made up for yesterday.
We started by getting everything prepared for lunch with Pete doing as much as he could (although he hasn't got round to peeling the veg yet). Then Amie's mum and dad popped in for a while which was really nice. They had helped Adrian and Amie move so were able to tell us all about the new flat, as well as a general catch up. We really enjoyed their visit, Pete likes to see people even though he can't actually say anything. He follows all that is said and can answer yes and no. It is good that everyone treats him as normal and isn't patronising, which he would hate. So far everyone has been fantastic in that respect.
After lunch, half an hour rest then on to the dishes, which Pete always helps with - he washes, I dry, although he can dry them if necessary. Then on to exercises which we did quite a lot of to make up for yesterday. Cup of tea and then back to the book. It is talking about the few days following Edwyn's stroke and so we discussed this (via questions and answers) and what Pete remembers. He can't remember anything about actually having a stroke, nor the following days in Barnstaple hospital. He said he couldn't remember being in Bideford hospital either but when I named some of the nurses and other people in the ward he can remember them. So I think it is all a bit confused in his mind, he definitely remembers coming home though!
After about 45 minutes of reading today, everything had to stop so we could watch E.T. on the tv!!
This is my most favourite film and Pete insisted we watch it, not that I took much persuading! Now, although Pete has always enjoyed this film (well, the first and second time maybe) it has never really moved him, but today there were floods of tears!!! I know this is because he can't properly control his emotions at the moment, but I had to laugh! After 30 years he cried watching E.T., he will never live it down!!!! I don't intend to ever let him forget!! It chokes me every time and goodness knows how many times I have seen it.
Another major decision Pete has made today is that he will now get out of bed in the night to use the bathroom, instead of using a bottle which has been removed! This is admirable because it requires quite a bit of effort for him to do this, he can't just hop in and out of bed easily. Another thing you never think about.
Back to routine tomorrow and, at the moment, the see-saw has levelled out, long may it last!

Correction to post

Just tried that link - it doesn't work! But if you google Edwyn Collins, Tim Burgess and Roddy Frame perform A Girl Like You - then it will come up and it is the first on the list.

Going Up!

Well, still on the see-saw but going up, slowly, but heading in the right direction! I felt much better after my rant yesterday! But that is what this is about, the ups and downs of life caring for a stroke survivor, warts and all! It's not all plain sailing but I wouldn't let anyone else have the job of caring for Pete, he is my life.
So, today, he is back on the modelling thank goodness and seems happy to be doing it, and reasonably happy with his progress. Today has whizzed by and nothing really done, so nothing to report. We did have the final visit to the dentist and now Pete is the proud owner of new dentures!! They will take a bit of getting used to but seem alright so far.
We haven't even had time to read about Edwyn Collins! But, on that subject, Adrian sent me a link to see a video on YouTube of him performing with Tim Burgess and Roddy Frame this year. It is so inspiring - his right arm still seems inactive but the speech is there (although I'm not sure exactly how much that was affected), anyway I think the link is: www.youtube.com/embed/pkuOPb4Espw. Try it.
Slight blip tonight when the dyspraxia kicked in again - Pete tried to turn the tv off with a cigarette lighter! But these are now few and far between and are actually quite amusing.
The horrendous shooting in America has upset us both, many tears from Pete every time it comes on the news. We are both thinking of all the families involved. So, so sad.
A bit shorter post today - makes a change as I usually seem to ramble on a bit!!

On a See-Saw

I don't know, this life is exactly like being on a see-saw that is out of control. One day high up, next day low down. It is very hard to cope with the difference. Yesterday was brilliant, Pete doing his modelling again, but today, no good. This morning was fine, Pete did a bit more modelling and he put a CD by The National on, they are a very mellow band, and I got on with a couple of letters and read a bit - fine. Then I went out to get lunch from the kitchen and come back to find Pete in tears, why? I asked if it was about the modelling, yes it was, he doesn't think it is going well. For God's sake!! Told him he has been doing it two days and with his left hand so can't expect to be as good as he was immediately. He still wasn't happy - but I have told him it is amazing what he has done. I can only say that so many times, what more can I do to help him? After lunch it was staring at the floor time again, so went to do some exercises and then came back and read some more of the book which was extremely hard. (if you don't know who Edwyn Collins is, he wrote and sang the song 'A Girl Like You' , look it up on you-tube). We are reading about when he had his stroke, very emotional. Pete then did a bit more to his model - he is doing a pig now - but then after tea, back again to staring at the floor and he wasn't happy.
How do I cope with these swings in emotion? It seems to be getting harder with each day when he is down. I am running out of ideas as to how to cheer him up. Some times I feel I am either going to explode or implode. He goes quiet, I go quiet. If I am doing something he can't do then I feel guilty, especially if he keeps giving me sad looks. Do other carers of stroke survivors feel like this? Our world has got quite insular.
So, I don't know what tomorrow will bring, I can only hope (as I often do) that it will be better. At least I feel a bit better for writing this down!

Gobsmacked!!!

We have read some more of the book about Edwyn Collins today and at the start of every chapter there are the pictures he taught himself to draw after his stroke. They are so good. Yesterday Pete had got the clay out to try to make something but it wasn't working that well and somehow, don't ask me how we got there, he managed to convey to me he wanted plasticine instead which is the medium he always worked in as it is more pliable. So, this morning, off I went, and purchased two packs of plasticine which made Pete smile broadly when he saw it. Then, to cut a long story short, I broke his phone and had to go back to town this afternoon for a new one. I was only gone for 40 minutes but when I got back he had started to make a model of a pony (photo today) and I was shocked when I saw it - amazingly brilliant! This was done starting with a lump of plasticine and only using his left hand, remember he was right handed before! If I didn't know that he had definitely been on his own I would have accused him of getting someone else to do it!! This is all thanks to the book showing him what can be done - never give up. He has been busy with it again tonight and has got all his tools of the trade out. I am so pleased as this is something he can be doing rather than the awful staring into space. He has also got the same attitude that he always had - never satisfied with his own work! I told him it is amazing and he is shaking his head 'no' !!!! I am so pleased for him, I love him so much and to see him doing what he loves is just - well, words can't describe how I feel.
The other photos today are of Ella in her school play. She is the angel on the left - doesn't she look beautiful, Mel also put a video for us to see and the inevitable tears flowed from Pete, and I don't think they were entirely caused by his heightened emotions!!
Adrian and Amie moved to a new flat on Tuesday and we did FaceTime with him tonight and he gave us a conducted tour! The marvels of modern technology are so mind blowing!
I am sorry to say we have done no exercises at all today with everything else going on! But we did read more of the book about Edwyn Collins and have now reached the point when he had his stroke, so it may be harder from now on but we will do it as it is spurring Pete on as nothing else has and it will help me too as it is his wife, his carer, who wrote it. We will read half an hour a day come what may!

Stopped Tumbling!

This has been a reasonable, average day. Pete has been a bit happier, not as smiley as I would like, but better than yesterday.
Susie came on her own again this morning and basically put Pete through his paces for an hour. She always stops occasionally to let him have a rest as he really has to work hard and put a lot of effort in - but he never wants to stop for long, in fact I think he would be happy to keep going on and on, but this makes him tired and then it doesn't work as well - so short rests are necessary. Yesterday Pete wouldn't do the foot sliding exercises but Susie has told him these are important and he must do them to get his brain rewired to the muscles, so he has been told!!!
This afternoon we started reading about Edwyn Collins. Unfortunately Pete can't read it himself, it is still too much for him to process, so I read it out - so far, so good, as at the moment it is just describing his life as a musician in the world of hit music, how they met, etc. we read for half an hour and I think this is enough in one go. Then it was on to the homework given by Bev! (photo of him hard at work) he has to copy our names over and over, just to get the pathway fixed in his brain - its a bit like lines at school! It must be so boring for him but he stuck at it for just over an hour, he really is so determined. I can't help but admire him and be proud of him. Whilst he was busy doing that I managed to get a lot of Christmas cards written, now it is just letters to do. That then was the whole afternoon occupied.
Susie did say, just before she left, that she can see improvement all the time, tiny tiny improvements, but they are there, so that is very encouraging.
This evening Martin, Mel, Robbie and Ella popped in - I rang Martin earlier to say Pete wanted to see him, I don't know why, he just wanted to see him! Ella is the obligatory Angel in her school play tomorrow so Mel is going to take photos for us to see. Ella made us laugh tonight as I think she has been having lessons on 'attitude' in school today - she is 6, going on 16!!!
So another day ends and, I'm pleased to say, we have stopped tumbling downwards.
Tomorrow morning I am off to meet another friend for coffee which I am looking forward to. I have really realised just how important family and true friends are.

Tumbling Down -again!

After a fantastic day yesterday and really looking forward to today, I felt we were on a high again but today we are tumbling downwards - again!
The day started well enough with me going into town to get new shirts and a couple of other bits, and I planned to be back well before Bev came at 12. Unfortunately, I got held up in the Building Society - their cash machine broke down and they had to lock the doors before opening it up - nobody allowed in or out and unluckily I was inside so couldn't get out for a while. This meant I arrived home at the same time that Bev and Alison arrived. This seemed to be alright but I could sense Pete wasn't happy and I don't think the session went that well. After they had gone I asked if he was ok and he said yes, but he wasn't. He got his mobile phone and this seemed to be the problem - he kept randomly pressing keys which annoyed me (!!). I tried to get whether he wanted me to ring someone, text someone, take a photo, show him how to use it, all to no avail. So I got even more angry, and he got more upset - vicious circle. I told him there is nothing else to do with a phone, but as I am writing this I am wondering whether he was trying to say I should have rung him and told him I was going to be late - I don't know and am certainly not going to go back there. But I suppose I could have rung the landline and put a message on the answering phone for him to hear.
He helped me change the sheets on the bed after lunch and then, reluctantly, he agreed to do some exercises. We did a few but some he refused to do, so not much success there. Then a girl I work with popped over with her beautiful springer spaniel and she stayed a while which cheered him up a bit. But after she left he went quiet again.
This damn aphasia is such a problem, this is when I feel totally helpless - I get annoyed and frustrated but probably not as much as him.
The book I mentioned about Edwyn Collins arrived today and, flicking through it, it looks really good. I don't know whether I will be able to read it out to Pete though as it choked me up just reading the odd sentences. He tried to read a bit himself but I'm not sure how successful that was, will go back to it tomorrow. A few words I can really identify with are: 'Shouty McShoutington of Shoutytown puts in a regular appearance and Will (their son) and Edwyn can't bear it. I tell myself off, try to get it under control, but to no avail. You can't have everything and serenity eludes me I'm afraid' - snap!!
That's all for today.

Sunshine and Smiles

It has been a glorious day today, both indoors and outdoors! Although it has been very cold out it has been lovely and sunny and dry all day. And indoors, Pete has been in a really good mood and very smiley all day.
This morning I had some dusting and hoovering to do and so Pete decided he would have a go at dusting and polishing in the hall. He did that really well, only one blip when he got the carpet cleaning spray rather than the polish, but I saw what he had got and gave him the right one, which made him laugh. He dusted all the ledges and pictures and polished everything that needed it, and he managed fairly easily. So, another box ticked in getting back to doing what he used to.
He also did a few sounds, nothing new but the ones he does are coming easier. Unfortunately, Suzanne was off sick today so Susie came on her own, but she put him through his paces and he did well. There were a couple of exercises that need two of them so, obviously, she didn't do those but compensated with plenty of others! One he has to do is to step on and off the half step (from outside the front door), without dragging his right foot off - he has to make the effort to lift his knee. He did a few just dragging the right foot off, but then it suddenly seemed to click and he started lifting his knee and getting the foot off beautifully, he did this about 15 times so that is a good move.
Tonight he went off and came back with a shirt! Now what I wondered? But I quickly established he wanted a new shirt, so I asked him to think of the colour he wanted and when he had decided, I just listed all the colours and got the head nod and big smile on blue. Then he picked up the shirt again - "do you want more than one?" I asked, yes, so go through the colours again and he also wants a brown one. Now, this doesn't sound like anything major, but the fact he went and got a shirt to indicate what he wanted to talk about is quite a breakthrough, hopefully the start of clue giving!!
Altogether, a fantastic day. I did think of getting him to do a bit of ironing, which I am sure now he could do, but decided dusting and polishing was enough for one day!! It all makes me sound really lazy, but I assure you this is all him getting back to normal!! Really, it is!! For the last few years he has done everything in the house whilst I go out to work - this works well for us and we are both really happy with the arrangement. All the girls in work think I am incredibly lucky to have a husband like him - and I am! And I know it!!
So tomorrow it is off to get new shirts and then back for his Speech Therapy with Bev. And the sun is forecast to shine again. Happy, happy, happy.

Good weekend

We have had a good weekend! Friday night we finished the tree (two photos of Pete looking happy now it is done) and Pete was so much happier. So Saturday was a really nice smiley day, also a very busy day! We started by putting up our ceiling decorations (photo) which Pete made 2 or 3 years ago. I wasn't going to do them this year, but we decided to give it a go! It took about 2 hours as all the threads had to be untangled first, which Pete helped do as much as he could with one hand and then I had to climb a step ladder to get them up! This worried Pete and there were many sharp intakes of breath as I wobbled up and down! There were 11 to put up in all. But it got done with no mishaps - so we are now fully decorated and ready. You have to understand that, usually, I trot off to work one day and then come home to find it all done, and then after Christmas, I trot off again and come home to find it all down and put away! So major change this year!!!
Then Saturday evening I went out with Mel and my mate from work, Fiona, whilst Martin was on daddy sitting duty again! They watched 'Men in Black 3' and all enjoyed it although Pete did fall asleep for a while apparently. We three ladies had a nice meal, couple of drinks and, mainly, a good chat and gossip. Also admired Fiona's new engagement ring, beautiful, so congratulations Fiona and Manny. I will be bringing Pete to throw the confetti on 1st June next year!
Today has also been a good one, we had a really good lie in, then in the kitchen to prepare lunch.
This afternoon we had a look at an article about Edwyn Collins, a musician who had a major stroke a few years ago and ended up a bit the same as Pete, right side paralysis, speech problems etc. it is very inspiring as he has now recovered enough to record a new album. He has the same right arm inactivity but feels it will get a bit better soon and is slowly overcoming the no speech bit - this gives us much hope. Adrian found the article and emailed it to us and he has also ordered the book written by his wife - so are looking forward to getting this and I will read it to Pete. It has all taken 2 or 3 years but this seems to be the norm. He also started drawing wildlife with his left hand and is doing well. After reading this, Pete went and got some clay and tried to start to make something. This was so good as it is a start to him getting back to what he used to do. He only did it for about 5 minutes, but I will encourage him to do it again. It won't be perfect just using his left hand but I am sure he will improve.
Martin also came this afternoon to give me lessons on my new phone! Pete got a bit upset after this and I think it was because he can't use one at the moment.
We have also done our exercises, so, all in all, 2 good days.

Change of Mood

Well, I think we may be back on track now! Last night just deteriorated from bad to worse, all about Christmas tree lights! They all worked at the beginning but then one set packed up. Easy solution, get more bulbs. But Pete didn't seem happy about this and wanted it sorted NOW. Anyway after lots of bad temper and swapping bulbs and eventually chopping off a plug (don't ask) and me not understanding what he wanted to do, and then me rewiring a plug at 10.15pm, we went off to bed in a bad mood and basically not speaking. By the way, I haven't rewired a plug before (I know, everyone should know how to do that, but I didn't) and had to do it under instructions from Pete, involving much banging around finding screwdrivers, etc.
This morning we woke and I resolved to be nicer as I really hadn't been last night. It went ok although Pete was very very quiet and subdued. I had to go into town so bought two more sets of lights and some spare bulbs. I also indulged in a little retail therapy for myself, and then got the left handed scissors and vegetable peeler for Pete. When I got back we had lunch but then the lights had to be put on the tree, so I counted to ten and then did that. Then it was on with all the baubles etc. which Pete helped with and the atmosphere was getting lighter all the time - so obviously all the upset was to do with getting the tree finished. Then he went and got a couple of presents that needed wrapping, so that was done and he used the new scissors to cut the paper - what a difference the right implements make. Worked brilliantly!
Then on to do exercises on his legs and hand, and I think we did them all - and to finish, a bit of toe wiggling!! We used the ball for some hand exercises which, I think, Pete found a bit painful but he wanted to continue so we did. Mission completed!
At tea time Pete tried his new peeler and peeled a potato with not many problems. Once he gets used to it, it will be great. Slow, but great. But now this is another task he can do and he can be more involved in meal preparation, which is what he wanted.
So, we are both much much happier tonight. About an hour ago Pete went off and got the local paper out and found the adverts for cats!! So, he wants a cat now, which I am all for. Not a kitten, more rehome an older cat, but first I have to get permission from the Landlord. We have always had a cat until just before we came here. We did think about a small dog but I was a bit concerned as he could fall over it and also would need walking. I think a cat would be ideal, especially an older one that likes to be fussed over. Will keep you updated on this!!
Phot today is our beautiful granddaughter after having her hair curled. Good day today.
,

Impatience!!

No blog yesterday - just didn't have time to do it! Speech therapy with Bev in the morning, and I had decided I wouldn't tell her we were trying sounds, but lo and behold, she had decided herself to try some!! So I told her which we were trying but couldn't get any further and she didn't have any more luck. Pete tends to get hooked on the 'Lu' sound and can't get past it, just keeps saying it. The word for this is perseverance, where the brain perseveres with one thing and just won't give up. Anyway, she then decided to try singing (yes, we have been there already with nothing happening) and tried the song Jingle Bells, in the hope a word would pop out, but, again, nothing. So then moved on to writing and letter recognition, which went quite well with Pete being able to remember missing letters for a short time, but then perseverance kicked in with the letter O which he tried to put in everything! It is a very odd phenomenon.
Suzanne and Susie came in the afternoon for physio, which went well, and we have also got a new exercise with the ball. She asked about kitchen tasks Pete can do and I said the main problem was peeling vegetables as couldn't get the angle right. She had the answer - he needs a left handed peeler - doh, why didn't I think of that!?!?! I told her the kitchen work station is pretty useless and wouldn't recommend it, but the one handed tin opener is brilliant. Anyway I need to purchase the left handed peeler and some left handed scissors.
Today we have done no exercises at all. Despite agreeing the decorations wouldn't go up till the weekend, Pete decided today was the day. He has got very impatient and doesn't like planning ahead, if he decides to do something it has to be done NOW. This has happened several times and it doesn't matter what I am doing, that has to stop to do what he wants. This can be very annoying at times. The Christmas Tree caused an anger outburst as he has customised the base, which has been fine in previous years, but this year I had no idea how to set it up. We tried several ways but had to give up and we have had to get a new tree. He just got very angry, and so did I, that it wasn't working. This resulted in us both being so cross we didn't want any lunch. Then come tea time I asked him something and got another outburst, he just wasn't making himself clear - he says yes to every question and then you have to wait for the head nod or shake, and he wasn't making any sense, so another disasterous meal. We have been out tonight and bought the turkey and a few bits and a new tree and things seem to have calmed down a bit thank goodness. But we had to put the tree up immediately, and I said I would do lights tomorrow, but no, out came the lights to go on now.
So a bit of a stressful day today, and now the wind is howling and rain/hail banging on the window. Hope for a better day tomorrow.

Censoring!!

When I have written my blog Pete likes me to read it out to him, which is fair enough as it is about us both. But I must admit that I do leave certain bits out, especially when it is about how I am feeling as if he knows I am upset, then he gets upset and off we go on an emotional bout. Today has been fine until this evening when, again, for some reason, I just keep welling up. I have to hide this as don't want to set him off, but if I disappear then he comes looking for me, so sometimes when I just want to go off on my own and have a good cry - I cant!! This doesn't really help but I have to think of him first so can mostly hide it.
I went to sort about his signature this morning and they said if I put an explanatory note with the signed form they will accept it - I hope they do! Will soon find out - it is all to do with money so it had better work!! They did suggest I should get Power of Attorney but this seems a bit extreme to me at this stage, after all he fully understands everything, it is just that his signature has changed. Anyway will see what happens.
Today we did all the exercises but I'm not sure I got the new ones right, but had a good go anyway. I can check with Suzanne tomorrow. Pete's foot was icy cold again and apparently this is quite common after a stroke - the brain not receiving message that the foot is cold and opening blood vessels to improve blood flow - you live and learn! So really just have to rub and massage it to get blood flowing better manually!!!
We are also continuing with sounds and may have got the 'Ooooh' sound as well now. One problem is that sometimes the brain just latches on to one thing and just keeps on with that and won't move on to something else, as in a different sound. There is a word for this but I can't remember what it is. We have got the speech therapist coming tomorrow which is the first time for two and a half weeks - but she won't see any difference. I haven't decided whether to say we are going for words/sounds, probably won't!!
I am feeling a bit better now after writing this! We had a good night last night so hoping for the same tonight.

New Exercises

Today has been a quiet day, with us not doing much. Pete hasn't seemed too bad in spirit but after lunch he was feeling a bit 'off'. It was too late to cancel the physios so we decided to just see what he was like when they arrived. He is also still getting pain in his leg, but there are no visible signs of infection - no swelling, rash or redness - so that is a bit of a mystery but it is not unbearable. Probably just muscle pain, but the physios are going to monitor it. Anyway, when they arrived he said he would like to do exercises so it was agreed they would go gently and if he felt unwell they would leave it. He actually got on alright and managed to do all they wanted and after they had gone he said he felt alright, so probably concentrating on something other than how he was feeling was good for him. I have been shown two new exercises to do with him to try and loosen his hamstrings. Just a few times each day should be enough. One is getting him to lift his right leg from the knee only, not moving his thigh or hips, the other is to slide his right foot along the floor and then pull it back, and not to lean back whilst doing it. This is done whilst his foot is on a plastic carrier bag to enable it to slide easily. So we will add these on to the core exercises we already do. Also we are keeping on with sounds.
Tomorrow I have to go to town and try and sort something out that needs both our signatures. I am going to have to explain he can't speak or write his normal signature, so what is the procedure? I have already had one argument on the phone with another company to do with something else and they insisted they wouldn't speak to me about it, even though I explained the situation (this was about 2 weeks after the stroke) and the upshot was I lost my temper and asked what they didn't understand about can't speak or write? They said they would write to him and ask his permission to discuss it with me, he would just have to sign or make a mark - told them to do that despite the fact he couldn't write so we would get nowhere. In the end I was passed to the manager/supervisor who decided they would talk to me about it! This is another thing you never think about in everyday life. Anyway will see how this goes tomorrow, but at least they will discuss it with me!
So, another day gone, no physio or speech therapy tomorrow - just us doing exercises.

Sunday again.

We had a better night last night although we were still awake for a while and making tea at about 2.00am. But then went back to sleep after about an hour - much better!!
I am still trying to sort out how I really feel - am I sorry for Pete, am I sorry for myself or am I just sorry about the whole thing? Probably a bit of all three, but am trying to get more positive. The trouble with Sundays seems to be that come the afternoon, after a big lunch, I just want to relax but Pete doesn't seem to want to do anything, and there is nothing to watch on the tv. As I have said before I hate it when he just sits there either staring into space or staring at the floor, I feel I really have to do something with him. He doesn't want to listen to music or play on the iPad so it has to be exercises or something to pass the time. He would normally have either put music on, gone outside to do something or read the paper or a book or played on Angry Birds, but now he either doesn't want to do those things or can't. Or we would have put a DVD on but we are limited as to what he can watch - nothing complicated, although that is getting better. Anyway enough of moaning!!
We have done more sounds again today - no new ones but he is finding it easier to say the sounds we have tried already. He tends to get quite tense and try too hard, I have to keep telling him to relax and then he is better. He has also mastered a couple more of the mouth exercises on the iPad app which is encouraging.
Pete did indicate the cupboard where our Christmas decorations are and then looked up at the ceiling today. I got it that he thought about putting decorations up, but we have agreed it will be done next weekend - I always think 2 weeks before Christmas is plenty early enough!! Pete has always put up loads of decorations, many pinned to the ceiling, and a very good job he has always made of it, but probably this year they won't be so elaborate as I am not as good as him. It is probably the artistic side of him coming out!! Anyway, we will see how it goes next weekend!!
We are watching a programme about Aliens at the moment, and very interesting it is - makes you think. Pete does enjoy documentaries - as long as they aren't too sad which brings on the tears!!
Then it is the ghost story about Crickley Hall which he has followed very well so far even though it flashes back in time. A few weeks ago he would have been absolutely lost trying to follow that - so perhaps the CSI programmes may be back on the menu soon!!
And the rain is back today!

Making Sounds

We had an extremely bad night last night, with both of us awake for hours and both getting very upset and emotional. After all that Pete eventually fell asleep but I was still awake trying to make sense of how I really feel. I don't know why, but I thought of my mum and how much I miss her, especially now. She would tell me that this is what life has dished out to us and it is no good feeling sorry for ourselves we just have to do our best and get on with it. I thought about what would be my one wish in this situation, and the answer is that if Pete could just get one word out I would feel so much better. It would give us such a lift. So I determined that we will practice sounds as much as we could, just a few minutes at a time every day. It may be the wrong thing to do, to try and force the issue, but I am going to go down that road - and tough if the experts disagree!!
With this is mind we have had two separate sessions of trying to make different sounds and Pete seems quite happy to do this. He can do 'mu' and 'Lu' (as in much or lurch) and we are going on to 'eee' and 'I', then put together to get me, my, lie. We have actually been quite successful just on these few sounds. Then I think we will move on to 'o' and 'ah', and go on from there. I am convinced that if he can start to make the beginnings of words we will both be much happier. We really need to start and take a few more tiny steps as this week hasn't been the best.
This afternoon was another visit to the dentist for the final try for new dentures, we now have just one appointment left, in two weeks time, for collection of finished product!! Just in time for Christmas.
Whilst we were in the dentist Martin did a tesco shop for me, so no need for online order at the moment (phew!!) then it was on to Argos to get a couple of presents.
So, all in all, I feel a bit better and more determined today. Surely it is time for us to have a couple of happier days - I surely hope so. (thanks mum for the words of wisdom!! Miss you so.)

Quiet Day

Nothing much has happened today. We have had a very quiet day, didn't get up until late as Pete didn't sleep at all well last night. Why is it that you can't sleep in the night, then when morning is near you fall into a deep sleep?!?! Good job I don't have to go to work at the moment.
I have bought some Christmas cards and done some online shopping - so made a start at last!
We did some leg exercises and stretching and a bit of letter recognition. Pete is still trying to wiggle his toes with a bit more success today!! So he is a bit happier. We have had one anger episode but nowhere near as bad as they used to be and he soon got over it.
It has been nice to have a chilled out day without worrying about what we should be doing.
And that is it for today!! Sorry it is a bit boring - but sometimes we find boring is good!!

Toe Wiggling!

Pete's leg is still causing discomfort today. He has only worn his ankle brace for about half an hour and has had his slippers on, rather than shoes, all day. I mentioned it to Suzie and she said the discomfort may be caused by the brace or be because his hamstring muscles in the thigh and behind the knee have become tight this week. She did a lot of work to try to relax them which is fine, but then I think they tighten again. She said he will probably ache tomorrow after the stretching they had today! He can get around the house alright without the brace but must wear it outside where the ground can be uneven. He has also become very concerned about this toe wiggling!! He used to be able to do it with not much problems, but last night couldn't make them move, and tonight he keeps trying - some times it works, other times not. The trouble is that he keeps on at it and if it doesn't work he gets a bit frustrated, and it seems the harder he tries the worse it is.
I think the family is jinxed at the moment because today Mel has had an accident and badly torn the ligaments in her ankle! Her Dad has also been in hospital but, thankfully, on the road to recovery and back at home now. All we need is for Martin to have something happen and we are up the creek without a paddle!!!
Pete's brother Gary popped in for a visit today which was nice to have chat with someone. Pete enjoyed seeing him.
Pete has been a bit happier today and this morning we did some more letter recognition exercises which was good as we haven't done that for a few days. Also he has been trying to make some more sounds. We need to practice this a lot more than we do at the moment. Nowadays speech therapy is more to do with establishing communication than making the sound of letters and words which is what it used to be a few years ago. So mouth exercises and letter sounds have been a bit neglected.
There always seems so much to try to do, with the result that not a lot gets done as it is all a bit overwhelming and sometimes I don't know which is the most important. We tend to concentrate on one thing instead of doing a little bit of everything every day. As I have said before, I really want to get him writing or drawing and I tend to concentrate on the letters and copying words. But now I need to change all that!!!

Plateau

We seem to have reached a plateau where no progress is being made. In fact, it seems to be tilting slightly backwards - in some things Pete is slightly less able than he has been. He is having a bit of a problem with his right leg at the moment. Last night he woke and indicated it was uncomfortable, I think it was aching rather than sore, and this evening his foot is really icy icy cold. I have been rubbing it for about 1/2 hour and it has warmed slightly, though not much. He has also taken his ankle brace off and put his slippers on which is unusual. He has also been trying to wiggle his toes without much success - he can usually do this. I have noticed he isn't lifting his foot as much as usual when walking. I need to keep an eye on how this progresses. The right arm seems to have been a bit painful today too.
The aphasia, again, is causing problems. I think this is the reason he has been so down this last couple of days. He keeps getting up, moving to another chair or sofa, then just sitting there staring at the floor for a while before moving on again. I asked him today why he was doing this but, of course, couldn't really get an answer. He just seemed really upset about the whole scenario. I suggested I contact the doctor and see about some anti-depressants and suggested this may make him feel better and try to do more to get a breakthrough - but this met with an emphatic shake of the head. So, we finally agreed to do more work tomorrow with letter recognition. He feels he isn't doing very well at all, whereas he is as he can pick out some letters.
When we went out for a walk this afternoon he wobbled a couple of times on the steps and very nearly went over, none of this makes him feel any better. Or me, come to that. I feel I should push him on to do things but I haven't got the heart when he doesn't want to do it. I am trying to get him to give a clue when he wants to say something - no luck so far, and this is so frustrating when I can't find the subject, despite many many suggestions. So, all in all, I don't feel of much use at the moment. It is at these times that I feel quite isolated and on my own.
But, I have to keep telling myself, tomorrow is another day and may be quite different.

Christmas is Coming!

Well, Christmas Day is exactly 4 weeks today! I know this because it is Adrian's birthday and that means 4 weeks to go. Today he has hit the grand old age of 30! I hope he has had a good day, at least he and Amie both had the day off. Photos today are of Adrian (not acting his age!) and one of him and his lovely partner Amie. They were taken in July on one of the few dry sunny days we had when they were down in this part of the woods.
Pete hasn't seemed particularly upbeat today, not wanted to do anything, although he did put some CD's on at one point when I was cleaning. The physio session was cancelled and re-scheduled for Thursday. It has seemed quite a long day today. The weather has been wet, again, and when it wasn't raining it was thick cloud - that makes you feel depressed in itself.
We have been out to Lidl tonight to do some shopping but even that didn't particularly cheer him up. One thing I find really annoying is that he won't turn the wheel on his wheelchair, still insists on using his left leg, so if he wants to stop he just puts his foot on the floor and one of these days I am going to hurt it because I am still trying to push it along. Also, if he were to turn the wheel then I wouldn't find it so hard to push it as he would be helping. I really don't know why he won't do it.
Also had a few communication problems but at least he didn't get angry. I have said before about him getting very emotional, well tonight he was crying watching the news about flooding in Wales, especially when they said an elderly lady had been found dead in her house. These sad stories really affect him. He would have been concerned before, but since the stroke, they really upset him.
I must start some Christmas shopping soon, just can't seem to get interested in it yet. Mind you, that isn't unusual! Today is the day I always think I must get on with it.

New Equipment!

On Friday I went out and bought, at the request of the physiotherapists, a gym ball!!! This isn't for me!! When I was asked if we had one I was a bit scared as to what they were going to get Pete to do with it! I couldn't really picture him being able to roll around the floor on it yet! However, it was put to a very good use. Pete's right hand was placed on it and then his left hand on top of the right, and then he had to gently roll it around. This stretched his right arm as well as giving him a different sensation through his right arm and hand. He also had to have a hand either side of it and lift it up and then down and drop it. Then, after a lot of work with the ball, Suzanne was behind him on the bed with both arms around his trunk and he had to sink back against her whilst trying to keep his feet on the floor (I am pretty sure he REALLY enjoyed this exercise!!!!!). The muscles on top of his right thigh were really tight and Susie had to work on that to get them relaxed in order to keep the foot on the floor. Then, finally, before moving on to the kitchen for stepping exercises, the ball was gently rolled towards him for him to kick back. This gets the right leg kicking out forwards instead of to the side. All good stuff. Again he was worked really hard and as it was all new exercises I think he really felt the effects of it afterwards as he took a couple of paracetamols. This is actually good as it means all the muscles have worked harder than they are used to. You know the feeling yourself when using muscles you haven't used for ages. Using the ball also made it all a bit more fun than just straight exercises.
I forgot to tell you yesterday that Pete had a fall! Not a bad one - he doesn't seem to go down with a thump just gently topples!! It was when we were going out. As he gets in and out the door himself I wasn't really watching him, I was busy getting the wheelchair collapsed and into the car. I'm not sure exactly what happened, possibly he didn't quite get his foot down flat from the step, anyway over he went! As Martin was there it was relatively easy to get him up, no big drama. In fact, when Martin asked Ella did she see Grandad fall, she said no and was possibly quite disappointed she missed it!! He had no after effects and the afternoon was fine, but this morning he had got a bit of red knee, but no broken skin or anything.
More physio tomorrow, but not with the ball, mostly core leg exercises with Suzie. But we will work with it over the next few days.

Trip Out

I think I am starting to be more accepting of our situation and realise I have to take it day by day and not just see a long dark road ahead - which is how I felt yesterday. I am pretty sure it was reaction to Friday - which seemed fine at the time, but yesterday it just hit me that there is no five minute fix. I knew that really, but being told there isn't much going to improve with Pete's arm and that his communication will continue for 2 or 3 years, it seemed that we had 2 or 3 years of being the same as we are now - and, of course, that is not the case. It is going to happen but it will be over time and quite slow. But today I feel I probably will be able to deal with it, providing I don't try to see the future! No looking ahead too far, just accept every tiny step as he takes it. It does seem that we are pushing rocks with feathers at times, but other times I feel very positive and feel we are on a roll - so, just roll with it, deal with each day as it comes and goes, accept there will be bad times but there will also be good times. Pete hasn't been too smiley of late and I really miss that, but they will return.
Today we have been watching the news a lot about all the flooding, it has not affected us thank goodness but we really feel for all the people who have had their homes flooded. We would normally have had a good talk about this and I do miss that. But never mind!
This afternoon we went out with Martin, Robbie and Ella (whilst poor Mel was at work!!) and we went to Westward Ho! and into the arcades. Parked in the Disabled Bays and displayed Blue Badge for first time!! Then we had to get to the arcade which was fairly near, but had to look at all the kerbs to cross the road - this is all so new, and we take so much for granted. I can't get the wheelchair over a normal kerb as Pete is about 10 stone and then the wheelchair weighs about 35 to 40 lbs, so it is impossible for me unless we find all the dropped kerbs. Luckily, the arcade was all wheelchair friendly and we had a really enjoyable time there with the kids. We walked along and could see the sea which was quite rough in places and very loud!! Very bracing as they say! Just to get out and about and mix with everyone (again you never think about this) in a normal way was so good. When we came out it was raining again!!
This evening we have done FaceTime with Adrian which is always nice, and Pete really enjoys seeing him, even though he can't say anything. But always a bit emotional when we have finished.
Then, cherry on the cake, we have arranged to go to Martin and Mel for Christmas lunch.
Altogether, a much more positive day.

Rubbish Day

I am finding it very hard to deal with the whole situation today - just going to write it off I think.
No more to say.

Good News and Bad News

Well, today we went to see the Consultant for the follow up appointment after discharge. Pete's blood pressure is fine, but needs to be checked every couple of months through the GP, so have made a note of that. The good news is that Pete is doing very very well physically with his mobility and what he can do, the consultant said that because of the severity of the stroke he was really pleased with his progress in this area. Also he was pleased that Pete has full comprehension of what is going on and what is being said to him, because of this we should be able to sort the communication problems one way or another, he said these will continue to improve for the next couple of years. Good news. He asked about moods and whether Pete ever got so depressed and frustrated that he wanted to end it all (!!??!!), luckily Pete replied with a laugh and shaking of his head. Good news. I mentioned the bouts of extreme anger (which are happening less often thank goodness) and he explained that control of emotions is usually difficult after a stroke, but, again, will improve. He didn't have an answer for sleep problems and the episodes of being hot were nothing to worry about. So far, so good. Then the bad news! Unfortunately, he doesn't think Pete's arm will get any movement back, certainly not enough to be able to use it. But we do continue with Botox as this will keep it loose and stop it from clamping and clawing up. I think we are both agreed that we can live with this, he just has to learn to do everything with his left hand, and I am sure he will. Final good news is that Pete is doing so well he doesn't want to see him again - but, on the other hand, he said he is always there if we want to see him. We just have to go to GP and ask to be referred back and there will be no problem.
Change of subject - driving!!!! Aaaagh!!!! When we got back Pete wanted to say something and eventually looked at all the words he had written out yesterday. Amongst them was the word 'scarf' but couldn't get anything from that, then he picked out 'teacher' , and I immediately thought learn to drive (driving teacher) and, yes, that was it!! We had had to drag Martin out of work for today's visit. I think 'scarf' was 'car'. So ..... First step, I had my photo done for the licence application! I will fill out the form over the weekend. I really have decided I have at least got to try to do it - really we need to win the lottery and employ a chauffeur!! But that's not ever so likely to happen so I must make the effort.
Final good news today, I have been awarded Carer's Allowance whilst I am not working. This is going to really help. I had expected to be turned down as I am still employed.
So, on the whole, lots more good news than bad, and we can cope with the bad.

Wild weather day

The weather today, as forecast, has been really horrendous. Torrential rain at times and gale force winds. Lots of flooding around, but luckily we live at the top of a hill so don't have to worry about that. A very large branch was blown off one of the trees that surrounds our garden, no damage though. (photo today, but not very good as it was pouring with rain and I took it through the window).
Yesterday I tried to contact the secretary to the Consultant that Pete was under at Bideford. He was supposed to have a follow up appointment 8 weeks after discharge and we had heard nothing, and it is now 10 weeks. She was away so had to leave message with another secretary at a different hospital - so didn't expect to hear anything until next week. But then this morning we had a phone call to say he has an appointment tomorrow at 10.30am, so I can't help but think he probably had got lost in the system and so needed a follow up fast!! I hope we may get some advice on the pain in his arm and how that is progressing and also perhaps some advice on his sleeping. Also need to mention the 3 episodes of him feeling really hot in himself although not hot to touch.
There was no physio scheduled for today so were going to do some exercises this afternoon, but never did as too engrossed in watching the weather! However Pete has done a lot of filling in of missing letters and then copying the word out. At least it makes a change from writing names and the alphabet. There is an app we use that shows a picture and writes what it is below it but with letters missing - then gives a selection of 4 or 5 letters to choose from, I tell him which letter is missing and he has to pick it out. He is getting quite good at recognising the letter he needs and only looks at it once before writing it, so this is an improvement, but still can't just write a letter from memory. We have had two sessions of this today and I think he quite enjoys doing it.
We have also done hand massage tonight and loosened up his hand and fingers. He can now get his fingers far enough apart to be able to link his other hand in between and then we rub fingers together and his thumb on the fingers.
So, I am glad we have got the appointment tomorrow and, hopefully, we will find out if he is progressing alright or if there is more we need to do.

Feeling Sad

Today I have felt very sad just to see how hard life is for Pete. I am not feeling really depressed or anything, just sad. He manages so well with things that you just do without thinking, like getting up and down or going to the bathroom or preparing meals. He has to make such an effort with everything. I was also a bit annoyed last night when I read an item saying about how to recognise a stroke when it happens and some Neurologist had said he can stop a lot of damage if he can treat the patient within the first three hours otherwise they are hopeless and helpless cases! NO, this is definitely not the case - there is NO WAY Pete is hopeless and helpless, far from it. Yes, there is an injection that can be given in the first three hours that will stop much of the damage, but if it wasn't a stroke then this injection can be very harmful. So they have to be absolutely certain of the diagnosis, and, as I have learnt, every stroke is different. Pete showed none of the classic symptoms and was a puzzle to the paramedics and the A&E dept, and was only diagnosed when all other possibilities were ruled out. Hence, he missed out on the injection, but hey, some you win some you lose. But it was the 'helpless, hopeless cases' phrase that really made me see red. All in all, from what I have heard, most stroke survivors go on to make remarkable progress even if they don't get back to how they were. OK, so now I have had my say this rant is over!!! I still feel sad to see his struggles though!
After saying yesterday that Pete doesn't sleep well, he took a stronger painkiller before bed last night and he slept really well, we didn't wake for a cup of tea until 6am!! Brilliant!! I don't want him to get reliant on these tablets but, on the other hand, nights are long when you can't sleep.
This morning we decided to make some rock cakes which are easy using the mixer. Pete measured out the ingredients with no problem and also operated the mixer fine, and as you don't have to put them into cake cases, just slap a spoonful on the baking tray, this went well and they are a treat after shop bought cakes. May try a fruit cake next! Mind you, I still don't like cooking (even our dog refused one of my cakes a few years ago!!) but when it is helping Pete's rehabilitation it is worth a go and as, so far, the results are edible we will carry on!
We have seen a bit of sunshine today but the forecast for tomorrow is horrendous and they are switching on the Christmas lights tomorrow evening so don't know how that will go. I think we will just stay at home all warm, dry and snug.

Dead Weight

Pete's right arm, although much more relaxed and looser, is still causing him quite a bit of pain at times. Although he lets the physios work on it, he is reluctant to let me do too much if it is the slightest bit uncomfortable. Sometimes just the sheer weight of it is almost too much, he has tried a couple of different slings to try and make it more comfortable but then the weight of it really hurts his neck. It really is very heavy, there is no way to describe it as you naturally take the weight of it on your shoulders or something - it is sheer dead weight - even I find it heavy to lift it. In the evenings Pete will bathe it in warm water to relax the hand and then rub different textures on it and we do exercises and massage - but, as yet, no vast improvement. Just time I suppose. We also have to be careful that it doesn't just hang too much as this can slowly pull the shoulder out of its joint. He is wearing his splint quite a lot which is helpful.
The other problem he is having at the moment is not sleeping very well at night. He seems to be awake an awful lot, but then he sleeps a bit during the day. He seems to go into a really deep sleep round about 7.30am and again at about 5.30pm, so probably no wonder nights are difficult!! Perhaps he is becoming nocturnal!! Trouble is that nights are so long when you are awake hour after hour. This is why he is taking paracetamol last thing, but doesn't seem to help.
Suzie has been today to do leg core exercises and some arm ones. We haven't got any more speech therapy this week, just one more physio session tomorrow. I tried to do some work with him on communication but he didn't want to do it so didn't get far.
Pete seems to have found it a bit better today, not struggling so much when doing anything. I really hate seeing him having such a hard time and try to help, but he is so determined to do it himself however hard he is finding it. This is one of the hardest things - remembering how he used to get around, it is so sad to see how he is now even though he is doing so well.
The weather today has been really awful, wet and windy, so hoping it will be better tomorrow so that at least he can get out of the house.