Motobility Scheme

First of all today I would like to update you about Katie who had a double lung transplant.  She is doing amazingly well, with no signs of rejection and today she had her first lung function test - it is up to 50% which is fantastic as it was at just 16% before the transplant.  You can read the blog Katie writes about cystic fibrosis at www.misskmgammon.blogspt.co.uk.  I will also put up 2 beautiful photos that Katie's lovely Mum, Angie, gave me permission to do.  There is one of them together after the transplant, happiness personified, and one of Katie taken two weeks after the transplant.  As her mum says, this girl rocks!!!

Now, the Motobility Scheme - we decided to go ahead with this about 3 months ago as I am learning to drive an automatic car and ours at the moment is manual so we would have to get a new car.  Also, if Pete can ever drive again (unlikely) then it would have to be automatic.  This scheme, contrary to what a lot of people think, is NOT free.  Pete has to give up half his Disability Living Allowance each month, but in return we get a brand new car, taxed, insured and with all repairs paid for.  This suits us as it means we won't be suddenly faced with unexpected car bills.  The car is replaced every 3 years.  Martin and I looked at quite a few and, in the end, opted for a Vauxhall Meriva as this ticked all the boxes we need.  It has height, so Pete can get in and out easily and has plenty of space for his wheelchair and any shopping.  It is also easy to get in and out of the back seats and has grab bars already in place.  We have named Martin as the driver and can add me when (and if) I pass my test.  So, all good, and we collect it next Tuesday.

I spoke to Pete's GP yesterday and he has upped the dose of nerve blockers as Pete still has quite a bit of dysesthesia, not as bad as before but still there.  He also gave me the results of the blood test and that is ok so no venesection needed for at least 3 months.  Good news!  We also discussed a couple of other issues and everything is now sorted.

Pete has been walking outside a lot, even going in and out on his own again.  The painkillers are down to 4 most days but sometimes 6 but this is ok.   He is still doing well in the kitchen - a big help!  And he is singing to himself - no words yet, but we live in hope.

The only down side at the moment is pain, and we hope to eliminate that in the next few weeks, and aphasia.  The gestures are not going at all well, Pete just cannot process to use them.

Probably no blog now until Sunday as it is another lovely ladies night on Saturday which I am looking forward to so much.

Creeping Forward

I really don't want to tempt fate, but it seems like we are still creeping forwards.

The warm foot on Thursday was just a blip, we don't know what caused it but it doesn't seem to have left any bad after effects.  We are now back to normal with a cold foot!  Perhaps not as icy as usual but that could be my imagination!  

As luck would have it, the District Nurse visited on Friday which was very helpful.  The reason she called in (we weren't expecting her and, typically, I had just embarked on my usual futile attempts to remove a few years by putting some hair dye on!! Had to apologise profusely for my appearance and did I feel stupid!) was to check Pete for any pressure sores and see his heel.  She had also been informed I had refused delivery of some equipment and wondered why.  The answer was very simple - they tried to deliver a heel cushion and cushion to sit on which we had already been given and also wanted to leave a single mattress - AGAIN! I refused it last time and did again as we have no single bed and what should have come was a double overlay for a mattress.  She said she will order the overlay, so I wished her luck on that one as it was supposed to have been ordered twice before - third time lucky perhaps!  We will see! 

She checked Pete over and he has no sores, probably because he is moving around so much more now and not just sitting for hours on end.  His heel is totally healed and looking good, but still have to put a protective cream on it as it is now a vulnerable area.  He doesn't have any dressings or other protection on it now.  I told her about his foot being warm and she didn't really know why that happened but it is fine, no infections or anything and she confirmed his circulation is fine.

I also mentioned to her that Pete had to have a blood test ( at the request of Haematology Dept.) and that I was going to ask the doctor if one of the nurses could visit and take the blood rather than him having to go to the surgery for it - her answer was "I will do that now", which she did - excellent!   She said they will always come out to do anything if it means we don't have to go to surgery.  Brilliant service.

Today we have been to the Garage for Pete to sign a form so that they can register the new car we are getting on the Motobility Scheme, we take delivery on 3rd September. Yay!!  I don't think I have talked about this before so will give details in the next blog. Very exciting! 

Moving Slowly Upwards

This was going to be an upbeat blog, concentrating on the good things Pete is doing - but now I have something else to worry about with him.  This evening his right foot is nice and warm!! I can see you thinking 'and????' but, the thing is, it is usually icy, icy cold! So why is it suddenly warm tonight?  It looks a little red but nothing too bad so I don't know if there is an infection in there or not - there is no apparent break in the skin to get infected, so I'm left wondering what is going on.  I think I just have to see what develops, but could really do without it. 

So, onto the good things.  Pete is doing much more in the way of helping with meals etc. and, a couple of times, has washed, dried and put away the dishes after a meal.  He is doing much more walking around and moving about.  He has been outside today, up steps to see the greenhouse and round the garden and sitting in the garden for about 10 minutes and he did that voluntarily, it wasn't me forcing him to go out.  Martin took me to Tesco and Argos the other evening and Pete decided to come aswell which was nice, he stayed in the car but at least came out with us.  As he hasn't wanted to go out of the house for weeks, these are all good signs.  

Bev, speech therapist, came yesterday and, although she did no therapies as such, we told her everything we are doing re communication at the moment (singing, book with words, gestures).  Then we all had a good session just with general chat and Pete joining in with his opinion (yes or no and facial expressions, etc) which was excellent and, I'm sure, Pete really enjoyed that.  

Today it was a visit from Candy, Psychologist, and then Suzanne, Physiotherapist, this afternoon.  The session with Candy was a good one and I think these are important as she asks him about feelings, etc and she probably gets more honest answers than I do if I ask.  There were a few tears when she touched on subjects of things he misses doing but it is good to talk about these things as then he is not bottling it all up.  She knows the questions to ask and how to ask them.  She will visit again in two weeks' time.

Suzanne exercised Pete's arm and said she can definitely feel an improvement, so the Botox is working.  His arm and hand can now fit comfortably back into the splint.  We just have to keep the hand clean and moisturised and if he can keep on building up his walking, then we are heading in the right direction.  She is not going to come regularly but will keep in touch and if I want her to come out then she will.

I am sorry to say that the level of painkillers has been rising and Pete is now taking 6 a day most days - so much for the challenge to stop taking them altogether!!!  

And that is the situation at the moment - forward several steps but then back one! 

Challenges!

The pain Pete has been suffering from over the last few weeks seems to be abating at last!  He is down to only 2 or 4 painkillers a day - he seems to have got a pattern of 2 one day, 4 the next, 2 the next, 4 the next and so on.  This is much better than the 8 a day he has been on for ages.  I think the nerve blockers have now fully kicked in and are controlling the pain to a level he can live with.  First challenge: to not take any at all.

We had a FaceTime session with Adrian on Thursday evening, better than the last one when Pete was in the bedroom and unable to take part!  It is always good to do a catch-up with Adrian and, I am pleased to say, Pete thoroughly enjoyed this one.  Anyway, Adrian challenged his dad to model an owl and he would draw an owl using his left hand only!  As Pete lost all interest in modelling this was a brilliant idea to get him back into it.  He started on his side of the deal this morning and did so well.  I am always amazed at how he does this - it's really weird how the aphasia has not destroyed his ability to do this at all, the only hindrance being he can now only use his left hand.  The photo today is of his effort so far, this is only the basis of it and took three-quarters of an hour.

Aphasia rears its ugly head again in the third challenge!!  To get some speech back!  One of the books Adrian sent, written by Oliver Sacks, is called Musicophilia.  One of the chapters is about music and aphasia - the point being that, very often, someone with no speech can hum along to a familiar tune and, providing someone else is also singing the words, (eg Happy Birthday) some words can just pop out.  We have heard this before and tried it, but perhaps not with the intensity we should have.  There is a man mentioned in this chapter who had had no speech for two years and had been written off as a hopeless case, but when they started this and had 3 half-hour sessions a week, he gradually got words out and could then start to say short statements.  This is more like our situation and I reckon I could deal with sessions like that, and if speech can be recovered even after 2 years then hope springs eternal.  We are definitely going to give it a go.  Also sometimes, singing words rather than just saying them, works apparently.  

The fourth challenge is to get Pete making some gestures to indicate what he wants.  This is going to be hard going as I will have to think up the gesture for something and then get him to make it every time that subject comes up - it sounds easy to do but, believe you me, it can sap the mental energy!!! 

I get to the stage when it is just easier to give up, which isn't good.  

So, those are the 4 challenges we have set - wish us luck! 

Emotionally Exhausted

Pete continues to be ok although yesterday he did seem to be in a bit more pain than he has been lately.

I, on the other hand, seem to be feeling quite down over the last few days and I don't really know why as Pete is fairly good.  I am feeling emotionally exhausted and overwhelmed by the situation at the moment, mainly I think because of the aphasia - there have been several instances recently when I just cannot connect to what Pete is trying to say.  He has been doing a bit of copying writing and we did try to get the first letters of a few words which did not go brilliantly.  It breaks my heart to see him struggling so just to think of a letter, and when he can't get it he gets so sad.  I feel particularly on my own as no therapists or anyone at all are coming in, although Bev will start again next week. 

Another thing which worries me and hems me in is that Pete seems to feel so insecure.  He needs to know where I am, what I am doing and when I will be back all the time.  If I just go outside, say to get the washing in, and then meet a neighbour and start talking for 10 minutes or so he will be in a right state when I get back.  Last night I had planned to go to a meeting about a local planning application and had asked Pete over the last few days if he wanted someone to come in and be with him as I had no idea how long I would be, and he said he would be ok, but when it came to it he seemed terribly worried so I couldn't go and leave him in that frame of mind.  When I go to town I have to say which bus I will get back and there is no way I could miss it.  Quite restricting, and at the moment, quite depressing.

Anyway, enough about me, just a quick update on Katie who I mentioned in my last blog, she is doing very well after her double lung transplant and has been on her feet, also talking within hours of the operation.  As I said, an amazing young lady and such a fighter.

Still moving forward!

Again, at the risk of tempting fate, I can say we are still moving forwards instead of backwards.

We had a lovely time with my sister staying.  It made such a difference to me to have someone else here and we hardly stopped talking.  Pete spent some time lying on the bed but this is part of his natural routine at the moment.  Wendy also looked at his heel to check it out for me, and she confirms it has healed nicely but said it is probably still painful because all the new skin in still quite tender.  I value her opinion as she is a nurse - retired yes, but still knows her stuff!! 

Yesterday Pete had his regular Botox injections - we had to cancel the last appointment so these were a month late.  He had the usual 3 injections but was given a higher dose as the last two lots didn't work so well.  Today he has been complaining that his arm is hurting - I'm hoping this is because the Botox is working and breaking down the muscles.  He has never had any after-effects before so this is new, but it could also be because of the dysesthesia.  Whatever, I really hope they work as his wrist and hand have been very very stiff.  I plan to ring the physiotherapist on Monday and ask her to come and give her opinion and tell us what exercises to do to help.  Incidentally, we only had to wait for 15 minutes and he apologised we had to wait that long!!!  People were moving through all the clinics all the time, so different from Tuesday in the haematology clinic.  Pete has had a letter from haematology apologising for the delay and asking him to go to his GP for a blood test - which we will arrange.

Today, as well as helping with the evening meal, Pete did a lot towards getting lunch.  He was having soup so he got it out, opened the tin and put it in the pan, then he got everything out for me to make a sandwich for myself.

Finally, I want to ask everyone who reads this to say a prayer for an amazing young lady I know.  She is 15 years old and has cystic fibrosis which is a very cruel disease.  She has been desperately ill at times and has been on the lung transplant list for over a year, and today they got the call they have been waiting for.  She travelled to Great Ormand Street hospital and the transplant went ahead today. Katie so deserves this chance at life and everyone is keeping fingers, toes and everything else crossed that it goes well.  At the same time, we are all thinking of the donor family and what they must be going through, losing a child - so a prayer for them aswell please.  It sort of puts all our problems in perspective.

Onward and Upward - I think!

First the good things (hoping not to tempt fate!!), then a rant and then the new book.

Pete has been amazing in his mood over the last few days, he has started helping again with the evening meal, getting plates etc. out, laying the table and taking what he can carry through to the sitting room and generally doing what he can to help.  Then last night he washed and dried the dishes on his own whilst I wrote a couple of letters, and today he came out with us shopping at Lidl. This doesn't sound like much to anyone else but as he has done none of these things for several weeks it is a big step forward towards us getting back to normal (normal as in post-stroke that is).  Today we also had a psychology session and Candy gave us a website to look at which shows how they raised the 'Verity' statue by Damien Hirst, in ilfracombe.  Pete is very interested in this and got quite emotional watching the short video - as he knows about sculpting and casting this is his 'thing'!  Candy is very pleased with the progress made and is now going to come in 2 weeks' time instead of weekly.  I think it is important that she continues for a while as Pete needs to be able to talk about his feelings and emotions to someone.  He has made all this progress on his own without the aid of antidepressants so I feel very proud of him.

Now for the rant - I will make it short!  Yesterday Pete had an appointment at the Haemotology Clinic, and for the second time, we had to leave before seeing the doctor.  This was solely due to the excessively long waiting times at this clinic.  When we arrived the waiting time was 30 minutes which was acceptable although Pete started getting agitated after a while.  Then, when we had been waiting 35 minutes and absolutely no-one had been called in to see the doctor, they upped the waiting time to 60 minutes AT LEAST! There were 3 people before us so we knew it was going to be longer than an hour and Pete started getting even more agitated, so, knowing he was heading towards a rage, I took the decision to leave.  I have been told before they always run late as the doctors have meetings about patients whilst the clinic is running - ok, but schedule them into the appointment system please.  They treat their patients with total dis-respect.  Anyway, a strongly worded letter of complaint has been dispatched to them!! 

Now, Adrian sent us the book 'The Mind's Eye' by Oliver Sacks who is a neurologist in America.  One of the chapters is about a lady who had a severe right side stroke like Pete, and it tells of her recovery over a period of years.  The main thing we can take from it is that we should never lose hope that there may be some improvement in the level of aphasia.  However, again we come to the fact that Pete seems more aphasic than anyone else we have read about.  This lady, and it seems everyone else, is usually left with at least a few words although they will probably be used in the wrong context at first or may not be recognisable for a while - Pete has no words at all other than 'yes'. Also they made a book of key words for this lady which became her 'bible' when communicating - she was able to use it very well with no problems. We have started a book like this for Pete but I have to tell him to use it, he has only once or twice picked it up on his own.  He can't seem to connect to use it to help communicate and also it can't be too involved as then he just gets confused with it.  At the moment it is quite short and basic, but we hope to build on it over time.  Then again, we come across the level of therapy - she had lots and was able to pay for more.  We can't find anyone who specialises in this - even if we could afford it! So that's no good, and again she has loads of people around her all the time which obviously helps - as it is usually just myself and Pete here 24/7, with the best will in the world, I cannot give that level of attention.  What I would really wish for is for some research group somewhere to pick Pete's name out of a hat and see if they could help, eg stem cell research, or any other trial going on. But, alas, that probably will never happen - the only time his name was randomly picked was for a tax inspection when self-assessment began several years ago!!!! 

My sister is coming tomorrow and is staying overnight so that will be a bit of light relief which I am really looking forward to.

Aphasia - again!!

Although Pete has been much more cheerful lately this damned aphasia is really getting us down at times.

I have made a folder containing various key words and actions to try to get Pete to give me an indication of what he is trying to talk about, rather than waving his arm around.  This works to a certain extent only because I give it to him and ask him to use it.  He still cannot connect to pick it up on his own and use it. I am also trying to get him to use the thumbs up or thumbs down gestures, but these tend to get confused and are being used along with the arm waving - which makes it even more complicated!!  We obviously both get very frustrated which ends with us both getting angry.  The other night I was trying to understand what he was saying about tablets and just couldn't get it - ending in manic arm waving and anger, so much so that his wedding ring flew off his hand.  That was really distressing (for us both) and resulted in me crawling round the floor for the next hour moving furniture trying to find it.  I did find it but told him he has to stop this frantic arm waving.  It is nearly as bad for me trying to guess what he is trying to say as it is for him to say it!  He used to be able to give me a first letter of a word as a clue, but that has gone.  I am hoping that now he is feeling a bit better we may be able to start the whole process again.

Pete is definitely more cheerful now, I'm thinking this is because the nerve blockers are working now.  He still needs painkillers but probably not so many now - the aim is to stop them altogether.  As for the antidepressants - these are still a no-go area.

Adrian has sent us a couple of books to read about communication difficulties.  I haven't looked at them properly yet but one of them is how music can help the brain start to refunction.  I am going to look at them in the next couple of days and will report back on the next blog!