No Progress yet

Pete is still suffering this infernal infection, but having spoken to the doctor today it has been decided to wait until tomorrow when they will have results back and then they can prescribe the appropriate antibiotics. So, hopefully, things will get better in the next few days.
Pete and I have also had a good talk today about his temper, etc. and he has agreed that as soon as he starts to feel back to normal he will make a big effort to get back to where he was with regard to exercises and communication. I hope this happens as it is quite depressing to see him making no progress and going backwards rather than forwards.
So, that is the situation at the moment. A dark grey cloud (rather than the black one that has been here for the last few days) still hovers over us, but it should get lighter soon.

Going Nowhere but Backwards

Pete is still very miserable because of this infection which has not cleared despite antibiotics. He went to bed this afternoon, got up about 4.45, but has gone off to bed again tonight - at about 7.00pm. Although he did up his liquid intake for the first few days, yesterday and today it has slumped right back again. I am going to have to go to the surgery again tomorrow with a urine sample and see if it shows up anything - the Devon drs told me this is what I have to do. I so wish Pete could just make an appointment and drive himself to the dr. and get treated. I can't really establish what he is feeling etc as his communication has slipped backwards and he just gets angry when I keep going over it - if only he could tell me his exact symptoms etc., as it is we are blundering along in the dark. It is now so difficult to get him to a dr for an appointment or anything. So I will spend tomorrow trying to do something to help him - I sometimes get the feeling he thinks I am deliberately being obstructive, I think he thinks I should rush him off to A&E. His sense of reasoning has all gone to hell. He doesn't see how much everyone has to rearrange plans just to sort him out.
As the title of this post says - we are going nowhere but backwards at the moment. His communication is shot and he won't do anything to try and improve it. Also he won't do any exercises or walking - and his walking is really bad at the moment, his leg seems really weak and he is walking on the side of his foot rather than put it down flat, but if I point this out then he just ignores me. I think we have regressed by about at least 3/4 months now. Someone asked me yesterday if I thought he would ever get his speech back or be able to write - my honest answer is no I don't. He definitely won't if he doesn't start and make a big effort.
Yesterday Martin and I (Pete wouldn't come) looked at some cars to try and get this motability thing started - we can't have a Honda Jazz as the nearest dealer is in Plymouth. Whilst I was talking to Pete (before we went out) trying to get him to understand there was no chance of a Jazz he got his notebook out and wrote F and C, there was no way I could guess what he wanted to say (bearing in mind we were talking about cars), full scale rage erupted with full on shaking etc., so I left him to get over it. I came back a few minutes later - still not guessing what it was about, then about 15 minutes later I established he wanted Martin to get something for him - eventually turned out to be fish and chips for tea!!!!! What that had to do with looking at cars I have no idea and why he thought I should understand what he meant straight away defeats me! I can laugh about it now but was furious at the time!! This is an example of how his concentration goes at the moment and how he expects me to understand what he wants with no further clues. I asked him for another clue and just got the F and C again - he isn't able to give any visual clues either. Extreme frustration on both sides!!!
I will have to cancel Vista Class tomorrow so won't have my one and a half hours a week 'me time' - still, that's life I suppose.

Botox results!

Well, all I can really say about the Botox injections is that the jury is still out on this one! They have definitely not made any major difference, but Pete has indicated that he thinks they have loosened his wrist and hand a bit, but I can't really see it myself. Also today we have received the appointment date for his next round of injections - early in July, which would be fine except that it is the same date as he has a haematology appointment, and, as there are only 20 minutes between the appointments, it's not really going to work (bearing in mind that we have waited an hour or more in each department before)!!!! So I am going to have to change one of them - eeny, meeny, miney, mo!!!
Meanwhile, Pete's urine infection is clearing I think, although not completely better yet. His leg doesn't seem to be giving him too much grief at the moment, which is about the only good thing going on at the moment!
Today we have been discussing with Martin the benefits of the Motability Scheme, which would go a long way towards solving our car problem. I must admit I was a bit dubious about getting involved in this but have been persuaded that it would be a good thing. I thought it would involve applying to someone and loads of paperwork, but it seems you pick your car (a Porsche please, thank you very much!!) and then approach the local Dealer to sort it out! Easy peasey!!! I think!! The thing is that, at the moment, we have a Honda Jazz which is ideal for Pete to get in and out of and the wheelchair fits in, no problem, and, coincidentally, I am learning to drive in a Jazz Automatic. Pete seems pretty adamant this is the car he wants. He would definitely qualify for the scheme as he receives Disability Living Allowance which includes the motability allowance at the high level. He would forfeit this bit of DLA, but in return would get a brand new car of his choice (and yes, the Honda Jazz is one of the models available), taxed and insured and all repairs paid for, etc. basically it is on lease for 5 years, then you get another new one!! No brainier!! So now we are going to go for this - I hope it is as easy as it sounds and there are no hidden snags!
I will keep you informed as to how this progresses.

Infection Again

Over the last few days I had noticed that Pete did not seem to be drinking very much at all - when he had a cup of tea he would only drink about one third of it, etc. Of course this led to the inevitable urine infection! Yesterday when I came home from work he seemed ok but then I had to go out again and, on my return, it was obvious something was very wrong with him. He was miserable and kept getting up to go to the bathroom (about every 10 minutes or so). After a couple of hours of this I realised it wasn't going to pass so had to ring the NHS Direct service for advice. They advised take some painkillers (crush paracetemol between 2 spoons and put in water, apparently just as effective as taking them whole) and drink (!!!) plenty and a doctor would ring back. A doctor eventually rang and we had to take Pete to see him - luckily Martin was already here as was doing an advert to sell our car - and antibiotics were prescribed.
I must admit I was a tad annoyed as felt Pete had brought this on himself to a certain extent by not drinking enough, so gave him a lecture about drinking lots of water and liquids, not very nice of me I know but it doesn't just affect him now - Martin had to give up time to go to dr and get antibiotics and wait around with us.
Anyway, after 24 hours of the antibiotics, and increasing his liquid intake tremendously (he has had nearly 3 bottles of water today) I think Pete is now feeling better and not going to the bathroom so much. However, I did have to cancel all his appointments for today, so instead of being a busy day, nothing much has happened. We have re-scheduled everything and one good result is that I spoke to Suzanne and she is coming on a different day next week so, hopefully, we won't get two therapy sessions in one morning again.
In the meantime we are now putting all our thoughts into selling the car and getting an automatic one instead - anyone want to buy it?!?!

Temper Outbursts

Over the last couple of days we have had several instances of me not understanding what Pete is trying to say. The trouble is that if I don't understand quickly then Pete loses his temper (he can't help this, it is all part of not being in full control of his emotions) and this then leads to him getting quite confused when I am trying to understand by asking the same questions over and over, some times he will answer yes to a question then a few seconds later will answer no to the same question. This then leads to us both getting quite hot under the collar and I have to walk away having lost my temper as well. This is the only action to take, but sometimes I begin to feel I am being used as a whipping post on which he can vent his frustrations. Fair enough really as there is no-one else around! Pete is very fond of just waving his arm vaguely in the direction of what he is trying to talk about - this is very annoying!!! And frustrating!!! It all is down to the damned aphasia and there is no solution at the moment. We just have to carry on and hope. The only bright side of this is that these outbursts don't usually last too long, (probably because I walk away!!).
Yesterday we bought some tomato plants, cucumber plants and grow-bags to put them in!! Unfortunately Pete couldn't come in with us as the place was not wheelchair friendly, but he seems ok with what I got. Today we have put the plants in the grow-bags and now just have to plant some runner bean seeds in a couple of days time. It is still too cold to put anything outside so there is no rush yet. We had a couple of arguments in the process of putting the plants in - I wasn't doing it properly!!
Today was Vista again and I think Pete went on the treadmill again and the exercise bike. He has been on the exercise bike at home every day and doing more walking, but still takes pain killers for his leg, but not as many over the last couple of days.
Pete has no appointments tomorrow but on Wednesday has speech therapy, physiotherapy and then venesection in the afternoon - busy day! I am going to see if the 2 therapists can change their days and not both come on the same morning each week which seems to be the pattern they are slipping into!

Go For A Walk? No Thanks!!

Yesterday and today have been pretty average days, as our days go. No major improvements, as is the norm at the moment.
Pete has been out for a good walk around this morning as the sun was out and it was really warm. We took the perch stool outside the front door and Pete sat out there for a while taking in the fresh air and warmth. (Photos) This didn't last however as, after lunch, the clouds all came over. Pete had a good inspection of his greenhouse and tomorrow we hope to go and get some plants to put in there. Hopefully Pete may be able to do a few things in the garden this year, but we will have to wait and see.
Last night Martin came and asked if Pete wanted to go for a walk around the park, as we have agreed he should do, but, unfortunately, Pete said no, so I'm not too hopeful that he ever will. His reason for refusing was that his leg was aching. He had been on pain killers all day so it shouldn't have been that bad, but he was adamant he didn't want to go out.
Pete showed me the app on the iPad called 'Grid Player' today. It is quite good as it speaks the words for you - there are several simple phrases used in everyday speech but the trouble is trying to remember which page you want! However, Pete quite likes it I think. There is also a keyboard section where you can type what you want to say - this would be excellent if only Pete could remember how to spell words. We are still only on first letters! When you type the first letter a selection of words it could be come up, but there are only about 6 choices, obviously the more letters you type the closer you get to the word you want, but this doesn't work for Pete on his own. We were doing it together and I was saying the second and third letters and then he could get the word. It is really odd how his brain operates now - take the word 'water', Pete can get the w, but that is it, but if you show him a list (about 6 or 8) of words he can tell you which one is 'water' straight away. I think he is beginning to be able to process short paragraphs now as well, which was totally beyond him a few weeks ago. So, as I am writing this, I am realising that very small improvements are being made, but it is definitely 'one tiny step at a time'. Dealing with the aphasia is mostly, as I have said before, like pushing rocks with feathers!!
Today has been Record Store Day at independent record shops throughout the country - as Adrian works at Rise at Bristol we have been very interested in this. (His own record label released a special vinyl record for the event and sold out! ). Whilst we were watching the regional news programme for the West Country tonight, blow me down, but they did a section on Record Store Day and filmed at Rise and there was Adrian - on the tv! Such excitement here! Pete got emotional - as usual!!
Tomorrow we are off to Martin and Mel's for lunch so are really looking forward to that, perhaps a walk in the park on the way home!!
Botox you ask? Still trying to make up my mind! I think it may have worked a bit, but it may be wishful thinking!

Did it work?

Well, did the Botox work? I don't know yet. As far as I can feel, there is not much change to Pete's hand and wrist as yet. I am still hoping we will get a result as he had the injections only 2 days ago and they can take a few days to work, but I keep remembering the first lot when we felt the difference the next day. Suzanne said in her note yesterday that she thought his wrist wasn't quite so stiff but to give it time. Meanwhile his fingers have stiffened up! If it's not one thing it's another!!! The remedy for this is to relax them in a bowl of warm water which he has done over the last couple of days. So we still wait...
Suzanne also had him use the exercise bike and he has to use it every day if possible, just for a few minutes. I went on it tonight (after Pete) and it does definitely stretch the calf muscles so we must keep it up. Suzanne has also agreed to taking Pete to the park rather than meet her in town to walk around, so this is also on the agenda. Although we have had a couple of sunny days there has been a very strong wind so we haven't been out yet - the wind can be Pete's downfall as strong gusts knock him off balance - but the forecast is better for the next couple of days so we hope to go out soon.
Bev also came yesterday for speech therapy and says Pete is doing well on an app called 'Grid Player', so this is positive as it is an app than can speak for you. But, I must admit, I haven't actually used it with Pete but I intend to try it tomorrow when I will have more time. I don't really understand how it works but will, no doubt, find out!!
This afternoon Pete's brother, Gary, called in so that was really good for Pete. We had a long discussion about changing our car as we need to sell our present one and buy one with automatic transmission, probably within the next couple of weeks. There was lots of other chat too which always helps Pete's communication.
And that is about it for the moment, so goodnight all.

Botoxed!! Again!!

Yesterday Pete attended Vista Class as usual on a Monday, but this week he apparently went on the treadmill! That was a first for him, but they said he got on alright - he was only on it for a couple of minutes at a time but went on at least twice. I can't really imagine how he managed it, but manage it he did, so that has got to be good. He also went on the exercise bike there and they did the usual arm stretches with him - all in all quite a strenuous session by the sound of it!
We have had some beautiful sunny afternoons and so yesterday Pete walked around the garden - the first time he has gone out for ages. It is so good to see him out in the sun enjoying fresh air.
Suzanne, the physio, has asked if she could meet him in town for a walk around. This could be a bit awkward as Martin would have to take even more time off work for us, so we have agreed with Pete that we will go down to the park in the evenings and he can walk around there - this will build his confidence in walking outside and also build up stamina. So we are hoping Suzanne will agree to this for the moment.
Today was the much anticipated day - Botox injections! Last time we had to wait for an hour or more but today we only waited about 10 minutes! I told the consultant that the last lot had had absolutely no effect whatsoever, so he more or less admitted that they do some times miss! Anyway he took a lot more time over it today and gave 5 injections altogether although in total it was still the same dosage as last time. There was one in the top of his chest (full amount), then 2 in the top of his right arm (half in each) and then 2 in his forearm (half in each). This should ensure that they will work this time, so everyone keep their fingers crossed for him please. I really hope they have the same effect as the first lot. Pete had indicated he wanted me to ask if he could have them in his right leg as well, despite the physios saying it wasn't necessary. So I did as I was told and mentioned it, but the consultant asked if he stood up and walked and when having it confirmed that he did, he said if he did inject his leg he wouldn't be able to stand - so that solved that and Pete was quite happy. So now we wait.
The other thing that happened today was that I had my first driving lesson in an automatic car!! I have had 7 lessons in a manual but found the gears totally impossible! Don't know why, but I just couldn't get on with them. I had to put too much thought into changing gears and it was really bothering me, so last week decided to go automatic. Pete had been against this but, as I explained to him, if he is going to drive again (which may or may not happen) he could only do it in an automatic so we would have to change the car anyway. So he is now quite happy with the situation ..... and so am I!!! I got on so much better today and, in my opinion, a clutch and gear stick are totally unnecessary accessories in a car!!! I found it so much easier and feel I can start to enjoy learning to drive now. Mel is also learning to drive and things are starting to click into place for her so I am confident she will succeed where I failed - mind you, last week when she went to change gear she grabbed the instructor's leg instead!! Hilarious!! It makes me laugh every time I think about it - yes, at the moment, I am the local idiot who walks down the street laughing away to themself!
Tomorrow it's both speech therapy and physio for Pete and work for me.

No Improvements.

No post yesterday as it was an evening out with the lovely ladies, unfortunately one of us was unable to make it but it was very enjoyable as usual.
There is nothing much happening with Pete at the moment, we seem to have reached a stalemate where no improvements are being made. This is because of his leg - it's become a vicious circle whereby he gets pain because he isn't doing much in the way of movement, and he doesn't move about much because of the pain! He is doing the stretches a bit - probably not as much as he should, but he does do them about 3 or 4 times daily but only 3 stretches at a time.
On Tuesday Pete has his appointment for Botox injections - I am pinning my hopes on them!! I really really hope they work this time, and I also hope that by relaxing his right arm it will help the whole of the right side relax and thereby help his leg - well, I can only hope, nothing seems to be certain in these troubled days!
Vista class tomorrow again and Pete does seem to enjoy that, it's the only bright spot at the moment!

Rubbish Days

Yesterday and today have mainly been dominated by pain and aphasia, resulting in bad temper.
There isn't really a lot to say other than the leg pain continues and communication problems continue.
Suzanne has been today to do physio and we now have to do our communicating via written messages. She has advised calf stretches little and often, about five minutes at a time every few hours, especially in the evenings when the pain gets worse. She also saw the exercise bike and Pete has to do two 5-minutes sessions on it this week, using the least resistance setting.
The aphasia remains a big problem with no answers, sometimes Pete gets so angry when I can't understand what he is trying to say. I do wish we could get some sort of breakthrough - but nothing happening yet. What to do?
That is it for today - nothing good I'm afraid. And it's raining again!!!
Rubbish.

Vista, Falling and Hospital Appointment.

Yesterday Pete went to Vista Class in the gym and I told them about the problems he had had with his right leg. They seem to agree it is purely muscular, nothing underlying. They did some stretches and massaged the calf muscles and he went on the exercise bike. They didn't think his muscles felt too tight and thought the pain was probably caused by the way he walks, which we can't do much about. At the moment he won't wear the ankle brace or the FES and I don't know why not, so don't know whether these would help or not.
In the late afternoon Pete went looking for a cushion (at least I think that is what he was doing) and ended up flat on his back! I was alerted by the sound of a loud thud! Sometimes he over-estimates what he can do and over-balances. Not helpful! He did manage to get himself up with only minimum help from me and doesn't seem to have suffered any after effects thank goodness.
Wendy went home yesterday afternoon and in the evening I did feel a bit lonely, it's amazing the difference just having someone else about makes - I don't feel on my own quite so much. But I am fine again today.
This morning it was a hospital appointment again in our favourite clinic! Haematology! This was because at the last one about 3 weeks ago we waited a very long time and didn't actually see the doctor as we had to leave. Anyway, today the appointment was for 9.50am and we went in at 10.15am, so a bit of improvement in the waiting time, but not brilliant. Why do hospitals think patients have all the time in the world to sit and wait for them - it seems to me that they know how the clinics run and should arrange their appointments accordingly. End of rant!! The result of the appointment was that Pete has to have another venesection (a pint of blood taken off) in 2 weeks, then one in May and one in June, then another appointment in the Haematology Clinic in July - so that's something to look forward to!!! I tried to get a first appointment but they were all booked - I wonder why?!?! One good point this morning was that the Consultant did seem to have actually read Pete's notes and seemed aware of the aphasia, as he addressed both of us and when a question needing more than a yes or no was asked, he looked to me to answer, but left it to Pete to give the yes or no replies - brilliant, this was a first. And this was without me saying about the aphasia first.
After getting home, I threw a cup of tea down my throat and then had to dash into town. On my return there was Pete entertaining his lady friend!!! Jane, from Connect, had arrived to see him again. He hadn't been able to tell me she was coming and she had been unable to write it in the diary as she has reading and writing problems herself! She said she will be coming every two weeks so I shall have to try and remember that!
So, a busy couple of days - nothing booked for tomorrow (other than work) so should be a bit more relaxed.

Leg pain again!

The pain in Pete's right leg is back! Unfortunately it seems that the calf muscles are really tightening up again. We did a few gentle exercises in the kitchen (this was after the pain had returned) to try to release them, but it seemed to be too painful to do many, nor has Pete done any walking today. I am wondering whether he should go to the Vista Class tomorrow, but he probably will, but I will have to mention the pain - perhaps they will be able to suggest something to help. His hip had been alright most of the weekend, to the extent he was back sitting on the sofa most of the time, but this evening he has brought the wheelchair into the sitting room to sit in that, so his hip must be uncomfortable again. Mind you, he hasn't taken any painkillers so it is still bearable.
We had a bit of a fight yesterday whilst making a cottage pie, the usual thing in that I didn't do it the way he wanted! He still loses his temper very very quickly - this is pure frustration I think in that he can't do something and can't explain to me what he wants me to do.
Yesterday the weather was absolutely beautiful, warm and sunny. Pete did venture outside, even though he had said earlier he wasn't going to, but when he opened the front door to see what the weather was doing, instead of flinching with the cold, it was really warm so he decided to go out. We met our landlord ( who also lives on the property) who had a good chat and he has cleared out Pete's greenhouse and cleaned it up after the winter, now it is all ready for us to plan what to plant this year - it won't be too much as gardening is Pete's thing, not mine!! Perhaps some tomatoes and runner beans. Nothing too complicated as if I don't do it right, there will be arguments!!
We have had a really nice weekend with Wendy staying - I have really enjoyed having her here for more than a day and will miss her when she goes home tomorrow. She has been going through all our mum's photograph albums, so lots of reminiscing there. There are also lots of very old photos which she is trying to identify to get the family tree. Very, very interesting but she has a lot more patience than me so I am relying on her to give me the finished product!!
And that has been our weekend, I hope yours has been good.

Good Days

Well, a week ago today we spent the evening in A&E - how much better things are now.
Pete's hip seems to be almost recovered so I think a weekend of walking exercises and just a few gentle stretch exercises, to see how he does, are in order. It is also supposed to warm up a bit tomorrow so perhaps a walk outside may be possible. His right leg also seems to be ok at the moment, just a few twinges in the ankle. So, yes, a gentle weekend methinks then back to normal next week, starting with Vista Class on Monday.
My sister has arrived today to stay for the weekend so it is going to be a good few days. We have reminisced a bit this afternoon about the good old days - flower power and fashions of the 60's!!
Pete and I have listened to Edwyn Collins new LP (yes, we have it on vinyl, can't beat vinyl!) called 'Understated' - excellent music. We so admire that man for the progress he has made and he deserves so much credit for getting back up on stage. We have also received the print signed by Edwyn and Grace Maxwell which is now going to be framed and hung on the wall!
So, all in all, good days at the moment. Pete is quite relaxed and easy going which makes life so much easier.

Back on Track

Pete is now back to normal thank goodness. Most of the pain has gone, just a bit of a niggle in his left hip at times, but not enough to warrant pain killers. He hasn't had any pain relief now for two days. I have spoken to Claire (physio) and explained what has been happening. She was not booked to come this week as Suzanne is on leave and they are really busy as they are a day short, (and we do exercises anyway) but she had had a message from Pathfinder to give me a ring. We agreed that it is best to just leave the exercises this week and concentrate on just walking about as much as possible, this will let his muscles recover. I said there was no need to visit but she said ring her if I want her or have any concerns - they are a brilliant team, always so helpful. We are so lucky to live in this area with this service and staff.
I went to work yesterday and today and don't foresee having to have any more time off, my employers were very good and totally understood I couldn't leave Pete at the weekend. He has been fine on his own, listening to music (Martin has given him the new David Bowie CD - excellent) and just pottering around I think. I haven't had to come home on my break. Today though he did have an unexpected visit from a speech therapist (not Bev) which I think caught him on the hop! He said he had been dozing when she arrived!! She has been a couple of times before so at least he knew her.
We are continuing to have beautiful sunny days but, boy, is it cold! This has meant Pete hasn't been outside for walks as it is so cold and he can't move too fast so we are hoping it will warm up next week and he can get out again. You begin to go stir crazy when you can't get outside!
Well, that's it for today, another month gone - can hardly believe it has been nearly nine months now since Pete had the stroke! He has done so well physically but we still battle with the aphasia which is a struggle. However we go on with hope and dream of the days when it will be improved - there is a short poem by Langston Hughes which epitomises this:
Hold fast to dreams
For if dreams die
Life is a broken winged bird
That cannot fly.

Hold fast to dreams
For if dreams go
Life is a barren field
Covered in snow.

And I leave you with that thought ...

May have to cancel Easter in the future!

Easter does not seem to be a good time of year for this family! My mum and dad both died at Easter, different dates, different years, but it was the Easter weekend. This weekend has not been as bad as that but Pete has definitely been suffering. Following the trip to A&E on Friday, and Pete seeming to be improving on Saturday, yesterday dawned with even worse pain and it was travelling down into his groin. After a few hours of wondering what to do, I eventually rang NHS Direct at lunchtime, was told a doctor would ring back and we ended up back at the hospital. This time they diagnosed an infection and prescribed anti-biotics, 2 to be taken right away and then 1 a day for seven days. Even more tablets! Pete took the 2 anti-biotics, had 2 pain killers and a bowl of soup (having not eaten for 2 days). He didn't have them all at once, but after the soup he promptly threw up! So that didn't go so well. He then went to bed, but got up again later, still in pain. This morning he seems a lot better and throughout the day has not been too bad, although at times it still seems to really grab him. He has walked around a bit when it gets bad, so I think it is back to the hip pain now and sitting on the sofa definitely seems to exacerbate it. He has brought the wheelchair into the sitting room and sits in that a lot which I think helps. He has also started eating a bit again, just really small amounts at a time. He does need to eat as his weight is quite low at the moment. He needs to put on at least a stone and a half to get back to normal.
I am hopeful that I can get to work tomorrow, but can't really say for sure until the morning. I think if I can't go then I will have to hand in my notice as they are not going to be happy if I take time off because Pete is unwell.
The weather this Easter has been very very cold but sunny, although today has been a bit grey. We haven't really been able to appreciate and enjoy the longer evenings, but I am sure we will in a few days.
And that is Easter over for this year - I am not looking forward to next year!