Recovery Blog
Damian's strokes in May 2017 are having a huge impact on our lives. Since the first of them I have been using social media to keep friends and family up to date. Here are the posts - unedited.
12th May 2017
Due to have a dinner party with Neil, Mairi, Marion and Tom. Finished school at lunchtime so due to meet Damian at Waitrose at 2 to shop for it. Couldn’t get hold of him. Phone rang just as I got on the motorway – Damian’s number. It was a paramedic – Damian was in the Queen Elizabeth hospital A&E. They weren’t sure what had happened but I should get there when I could.
Went straight there – they suspected a stroke but he was sitting in bed, talking with a bit of difficulty. I asked him what happened – his eyes rolled back and he groaned. They wheeled him away. Neil turned up (I’d phoned him to say there might be a problem with dinner). A doctor came to see me – he had had a stroke, and then another. They had carried out a procedure to remove the clot, during which he had had a seizure.
Lots of waiting around. Thank God for Neil.
Eventually he was put on a ward (514) and we could see him. He was exhausted and we were told to go home about 9pm. Had to phone his dad and sister and my family. Neil phoned Mary.
She came the next day,
16th May 2017
I had been at the QE all day every day. About 8am I was walking to the hospital – he had been improving: able to walk with a bit of help, and talk albeit slowly and deliberately. My phone rang. He’d had another massive stroke overnight. Severe damage.
Neil came again.
The consultant came and told us how severe it was. He had lost most of the capacity of the left-hand side of the brain. He would probably never be independent again. Can’t begin to describe the numbness. The consultant was factual, honest but had no warmth and offered no hope.
23rd May 2017
For the 12th day I am here at Damian's bedside. For those who don't know he has had a stroke but is being very well cared for at this amazing hospital. Progress is slow and the damage done was severe but he has age on his side, a steely determination to get better and the love of so many friends, family members and colleagues to help him in his recovery. I'm not sure FB is the place for updates like this but I know that many friends old and new were concerned about him. He is in the best place, getting the best care possible. I have to be patient and positive.
30th May 2017
A quick update on Damian:
He is still in the QE and the care continues to be second to none. He is a little stronger and generally more alert for greater portions of the day. He was sick for a few days at the end of last week but his appetite is returning although he still needs to get more calories into him somehow.
After three days of rest over the bank holiday weekend he had a physio session this morning. His balance has improved since last week and he was able to sit up and keep his head up without help. Gradually the physios raised him up and with a bit of help from three of us he managed to stand for a few moments. It was really moving to see it. Needless to say he is now completely exhausted again and snoring his head off.
He is on the list to be moved to Moseley Hall Hospital which specialises in rehabilitation. Although I feel uneasy about the move it is the right thing to do and a positive next step.
Friends and family continue to be wonderful and both school and Damian's employers are being incredibly kind and understanding.
I'll post again once he's moved to Moseley Hall and we see how things are going.
2nd June 2017
I promised an update once Damian had moved into Moseley Hall Hospital for the start of his rehab therapy.
The move finally happened on Wednesday evening and saying goodbye to the wonderful staff at the QE was very hard. Moseley Hall is much less swanky and hi-tech than the QE and feels quite shabby in comparison. It will take a while to settle in and get used to it. For now at least Damian has his own room which is a blessing. The staff are being just as wonderful here as they were at the QE and they take as much interest in my welfare as they do Damian's.
Yesterday was a very difficult and emotional day; the move hit us both and I think that now I am over the initial shock of what has happened I am starting to realise the enormity of what faces us.
He had an initial assessment with the physiotherapists which was hard work and very draining. His appetite was poor and he seemed very low.
Jill Stephenson looked after me in the evening and I was back here for breakfast today. Damian had slept better and was ready for a more intense physio session which again was exhausting. He came back to his room and after a short break the speech and language therapist came and got him counting, singing (which was amazing) and writing. Every small thing was a huge effort and took an immense amount of energy but his determination and stamina makes me feel more optimistic about the future. His appetite has been much better and the food seems nicer here too.
I know what a long journey lies ahead and I know that there will be some really bad days as well as some better ones. I can't pretend that everything is OK because it really isn't. This situation is bloody awful and we have no choice other than to make the best of it, wherever we end up.
Again the messages and visits from our families and friends are keeping us going - so thank you.
Jon & Damian xxxx
10th June 2017
It's difficult to give much of an update on Damian's progress as it is extremely slow. There are a few very small victories which lift our spirits but mostly he is exhausted and spends much of the time dozing.
He has had two therapy sessions every day this week and the effort he puts in is incredible. Tiny movements require enormous effort and tire him out. The good news is that his appetite is quite good now, and he has been put on a "normal" diet. He hates being helped to eat so now largely feeds himself. He refuses to use the special cutlery and will only use regular spoons and forks.
The speech and language therapy started with single words. Reading seems easy for him, writing is getting there (albeit with the "wrong" hand) but speaking is still very hard. He did say his name yesterday which was a triumph (and very emotional to hear). Singing is still the way he finds easiest to make a noise.
The therapist is brilliant, using his interests to base the work on. He could recognise musical instruments by hearing the words and reading them. By pointing he could show which instruments he can play and I can play. He could link books to their authors (I didn't know most of them but he did). All shows me that his understanding is good.
Physio has made progress too. He can now get out of bed and into his wheelchair using a frame with a platform and wheels instead of the hoist. This is much quicker and less traumatic. With help he is able to stand and even take steps (although it needs a physio to help move his right leg). On Thursday they felt the muscles in the top of his leg start to fire so I hope and pray they are waking up.
Massage and a bit of electrical stimulation are being used on his arm. I keep thinking I can see movement but it might just be wishful thinking.
The worst of it really is his mood. He is very down - sometimes upset, sometimes angry. It is very hard to watch all this, especially when we can't talk about it. I try to make encouraging comments but he knows how serious things are and the frustration must be incredible.
I tried to go back to work. I managed Monday morning, but when I came back to the hospital I didn't understand what had happened in his physio. One of the therapists said that they thought his understanding was poor. I couldn't argue (even though I strongly disagreed) as I hadn't been there. I went into school on Tuesday morning but just couldn't do it. After making a show of myself in the staff room I came straight back here. For now I need to be here with him. Thank goodness school are being amazing. I will do my best to go in before the end of term but it's too soon now.
Once again family and friends have rallied - visiting, taking me for coffee, talking, listening, giving me dinner and generally just being there for us. We are very lucky and feel very loved.
J&D xxxx
15th June 2017
It's been a much more positive week and I really feel we have turned a corner. Damian's mood seems to have lifted and he is much more responsive and motivated than he has been. Wednesday was a particularly good day. There were many firsts. I won't go into details but aspects of his toilet arrangements became much more normalised which makes him more comfortable. Also he was happy to practise his speaking and writing exercises with me, he wanted to go out into the garden here and he watched some TV on his iPad. There was the daily physio session and an occupational therapy session too which both went well.
In the afternoon we held the "Goal Setting meeting" with the therapists where we discussed our hopes and objectives, and what level of recovery they felt was realistic and possible.
They confirmed that the next move would be for Damian to come home (massive relief for me) but that his therapy sessions will continue there. They guess he will be ready to come home in about 5 weeks. A care package will be put in place so that carers will come to the flat for as long as necessary.
Damian insisted on being at the meeting and reacted positively to everything that was said. I felt better about it too. They made no promises as to what the future holds but they did at least give me reason to hope that things will get much better than they are now.
After the meeting he was becoming tired. He'd been in his chair for 7 hours - so went back to bed. It had been a really good day and it was made extra special by Jill bringing a meal in for us both. It was wonderful to eat together and for D not to have hospital food.
It was really hot in his room though, and it was difficult for him to get comfortable. He had started using the controller to set the angle of his bed himself. I left him at about 8. Later they phoned me to say he had fallen out of bed. Obviously I was worried but they said he hadn't got any injuries and that he was back in bed and comfortable.
On Thursday morning I found out that overnight they had taken him back to the QE to check him fully. He didn't get back to Moseley Hall until 5.30am so I thought Thursday would be a write-off. I was wrong - he was at "Breakfast Club" at 8 am where he made coffee for everyone. After that we went into the garden for a while before more physio and voice practice. He now has a new bed with sides, but more importantly controls he can get to himself.
After lunch he was ready for his bed and he slept most of the afternoon, but was alert and responsive in the evening again.
I had worried the fall might have set us back a bit but it doesn't seem to have. He continues to work extremely hard and is totally committed to making as full a recovery as possible. It is wonderful to see him interested in enjoying things on his iPad again, and actually smiling now and again. He never was any good at disguising his feelings and that hasn't changed...
We still have a very long way to go but I am much more confident about our future now. Again the support and love of so many people has kept us going. We are both more grateful than we can say.
J&D xxxx
23rd June 2017
It's six weeks today since the first of Damian's strokes and time for an update. It's been a very positive week as far as physio and his movement are concerned. At the start of the week I was shown how to use the sara stedy frame to get Damian in and out of bed. This means much less time waiting for nurses whenever he wants to transfer from bed to wheelchair. Yesterday he was shown how to transfer using only a stick which will be easier again (although that is only with a nurse's supervision for now).
Walking is improving enormously - the physiotherapist is working really hard with Damian whose effort is immense. A brace on his right foot has made a massive difference and he can now walk with almost no assistance - just the physio checking his balance. Practice is making all the difference and she has to intervene less every day.
There is less encouraging news about his arm. I hope that once the work on his leg is consolidated and he can get about safely, there will be some improvements there too.
His speech and language therapist is as dedicated and conscientious as his physiotherapist and has spent an hour with us every day again this week. Whilst his reading and understanding are good, writing is hard and speaking is really hard and he becomes very frustrated. Slowly his confidence is improving and sometimes he manages a 'yes' or 'no'. He is more prepared to practise now than he was and again I am hoping that with time he will find it easier to communicate.
Occupational Therapists are doing a bit more now - he is being shown ways to wash, dress and generally look after himself. I am sure as time goes by they will become even more involved.
He is much less fatigued now, and keen to spend time in the garden and to go for walks. I am getting used to pushing the wheelchair and it is giving me a great work out. We have been to the pub next door a few times, and spending an hour in there with family and friends gives us both a huge boost as it feels as though we're doing something normal.
His mood is generally much better now - and I can see it brighten when he does well in physio, and darken when the words just won't come. He remains stubborn and determined though. Mostly that motivates him to improve but sometimes he takes risks. As I type this, he's just come back from the bathroom where Tiger (one of the nurses) caught him as he almost went A over T trying to stand without his foot brace on.
Anyway - generally things are moving in the right direction. I am technically back at school next week. I'm not doing any teaching but still have quite a bit to do before the end of term. I will be here as much as I can - his physio is going to timetable him at 9am every day so I can be there, then go in to school mid morning. School have been incredible - I am very, very lucky. I had a really nice email from the Headmaster the other day which was so kind and supportive.
In all the gloom and misery of what has happened, we can see just how fortunate we are to have the amazing doctors and nurses, the therapists, our families and friends. We can't thank any of them enough for what they're doing.
1st July 2017
Damian has really turned a corner this week and for the first time we are feeling optimistic and confident about the future.
Walking continues to improve. There is now mobility in his knee as well as his thigh and he is able to walk (carefully) with only a stick for support. He is not supposed to do it unaccompanied but he has been caught trying a few times (and in a heap on the floor once). His stubbornness and determination can be a double edged sword.
Over the last four Wednesdays I have videoed his walking. For the first time this week I watched them all back to back and the difference is amazing.
Technically I have been back at school this week but in reality I have only been away from the hospital for an hour or two here and there, other than yesterday (the last day of term) and this morning for Commemoration. I found it difficult being away all day yesterday but Damian was fine and coped perfectly without me.
Tomorrow we are going to have lunch at home. It will be the first time since the original stroke that Damian has been at home. It will be wonderful to be there together even though it’s only for a couple of hours. A friend who happens to be an OT is going to meet us to help us get in, and then come back to help us out. We’ve got friends visiting in the afternoon and family coming in the evening so it will be a full day.
Probably the biggest change this week is in his speaking. The speech therapy he’s been having has taught him some words and simple phrases and at the start of the week he was starting to use them confidently and accurately. In the last couple of days he has been much more adventurous and used words he’s never done with the therapist. I cannot tell you how good it is to hear him speak. Just so moving.
We probably have only two or three more weeks at this incredible hospital. We are both desperate for life to go back to the way it was before, and the longer he stays here and takes advantage of the relentless therapy, the more likely that is to happen. Perversely then I want him to be here for as long as possible. I honestly don’t believe we could have had better care anywhere in the world.
4th July 2017
Sending love to Matt Leighton and Paul Hodgson on their happiest day. We're with you in spirit ❤️🎉🍸🏳️🌈
8th July 2017
Firstly thank you for all of my birthday wishes. Obviously it was not a normal birthday, but it was very special to have so many messages wishing me well. Weeks ago, when Damian first moved to Moseley Hall, I had a goal in mind that we would be able to go for lunch with friends, for my birthday, in the pub next door to the hospital. We have been able to get to the pub for a while now, but yesterday was the first time we'd been to eat a meal and we managed it!
Damian's thoughtful speech therapist had gone through the menu with him and he had practised saying the names of the dishes he wanted. He really struggled during the week, but he went for it yesterday and it worked. I cannot tell you how proud I was of him. He managed so well. It was very tiring for him though, but it was lovely to be with our friends doing something normal.
The week has had its up and downs. Last Sunday we came home for lunch. Just being in the flat, on our own, was emotional but wonderful. He wanted to go into each room and have a look. Going into the dining room where the piano is, with the music he'd been playing still on the stand was really poignant. He didn't go up to the piano but you could see by the look on his face what he was thinking.
All of the therapy is continuing to go well. Leg movement is going particularly well. Yesterday he was able to move his ankle for the first time. Getting up, walking short distances and managing with washing and dressing are really improving. Speech is steadily progressing too, and he is becoming good at getting his feelings over clearly. Whilst he is sometimes able to move his thumb a little, and he can usually manage a shrug in the shoulder, there is nothing much to report on the arm. They have given him a Saebo Flex device to use for an hour a day. It stretches the muscles in his hand to try to stop them shortening. He finds it uncomfortable and quite distressing to use, but he is going with it in the hope it will allow some improvement. Just before his leg started to improve the muscles in it started to "flick"quite strongly. They still do for a while when he gets up in the morning. His arm has started to do the same so I really hope that we will soon start to see some progress.
Whilst the medical care we have received at The QE and Moseley Hall have been incredible, the "advice" we've had for other aspects from so-called professionals has been pretty dire. The woman who came last Friday to give us advice about benefits we might be entitled to, given our income has pretty much halved overnight, was particularly useless. She spoke at us for an hour (my head was spinning) with no clarity but she promised to register our PIP (?) application. On Tuesday she phoned apologising for missing our meeting. I said she hadn't missed it, so she asked what she had promised to do for us. It didn't inspire confidence. On Wednesday she phoned again to say she had had to go on leave because of a family emergency, so she would no longer be handling our case. I was pretty pissed off so I wrote to the matron at the hospital. She put us in touch with a much more switched on woman who made the application with us there.
Then we finally met the social worker who has been assigned to us. Her job is to organise the care package for Damian when he comes home. She was useless too, and frankly I don't think she was used to dealing with people in our situation. We came away feeling that we wouldn't have access to any care as we won't have any spare money. Between us we've paid tax and NI for nearly sixty years without a break and now we actually need a bit of help we're probably not going to get it. Don't get me started (but our MP had better brace herself.....)
Another reason we are feeling a bit unsettled this week is that discharge is looming. Whilst part of me is desperate to get home, part is nervous about being on our own. I know therapists will be coming to the flat but we have had the safety net of the hospital staff for so long I can't imagine coping without them. It will have to be faced, and it looks as though it will be sooner rather than later. Projected discharge date is 17th July.
Anyway I've rambled far too long. Thanks again for the birthday wishes and of course for all the messages for Damian. They are appreciated enormously. Thank you xx
14th July
It’s nine weeks yesterday since the first of Damian’s strokes. This part of our journey seems to be coming to an end. We are being prepared for discharge - hopefully on Wednesday if the Social Worker does what she promised she would and gets a care package in place. This experience has been a massive learning curve for me and my understandings of the NHS, Social Services and the benefits system (not to mention the attitude of our bank) have all changed beyond recognition. This is probably not the place to vent but of all those organisations only the NHS actually treats us as people with human needs and emotions. The rest rely on computers to coldly go through their list of limited options and shoehorn us into a category that suits them.
Of much more importance is Damian’s progress. His leg is still improving with some ankle movement returning. We’ve been given exercises to continue at home which will strengthen his muscles and will hopefully mean he will not need the ankle brace for ever. The wheelchair is used only outside now. Last Wednesday we had a home visit with an occupational therapist who checked he could get in and out of bed, his chair, the shower and the bathroom. Whilst he will need help with some of this (hence the care package) he managed well and it was wonderful to see him at home.
His speech therapist has continued to push him and he is starting to use full sentences, ask questions and join in conversations. It’s all very difficult for him and an enormous effort but we will carry on the work at home and we will soon start with a new team of therapists so I hope he will continue to improve. I’m keen for him to get to grips with a QWERTY keyboard again too - something we haven’t really looked at yet.
I am trying to keep positive about his arm but once again there’s nothing to report. He does still have a good range of flexibility most of the time but there’s no real movement yet. Sometimes he can twitch his thumb a little but nothing else.
Damian’s mood seems to have been better this week - he remains determined, hard working and largely positive (at least when he is with me). He is enjoying the company of some of the other patients and many of the staff here and we will miss them terribly when we go home. I have to confess that I am quite worried about the change that being at home and on our own will bring. The staff at the hospital are being incredibly supportive to both of us though and I know things will be OK eventually. We have many friends and a very supportive family so are incredibly lucky.
The week ahead will be another milestone and, all being well, the next update will be from home and not the hospital.
19th July 2017
Today's the day. We're going home.
22nd July 2017
We are home. To say it has been an emotional and significant week would be an understatement. At the beginning of the week, we were hoping to be discharged on Wednesday but as the social worker (useless IMHO) hadn't done her paperwork I knew it would be delayed. To be fair it was only by a day but Damian was very disappointed.
The week started with more therapy and Damian got more and more excited at the prospect of coming home.
We enjoyed the last full day until he tumbled in a meeting with the Stroke Association ladies. Nothing serious - he stood up without placing his right foot and fell in slow motion onto a chair. Because the room was small it was awkward to get him up again. There was no damage done and he wasn't hurt but there was loads of paperwork and a "huddle" meeting to find what had happened. He was worried it would affect the discharge but it didn't. I hope it will make him more careful.
Thursday came and we packed up everything. After lunch we left. For me it was one of the most emotional things I have ever done. I have had such faith in the staff at the hospital and they have been so caring, compassionate and friendly that the thought of not having them around us all the time was almost too awful to contemplate.
The first care call was at 4 in the afternoon. One of the managers and a carer came. They assessed our situation and decided what we need. I think it will be fine, and so far it has been. Instead of 4 visits a day they are just coming first thing and last thing. That suits us well I think, especially as I'm on summer holiday so will be around during the day.
I didn't sleep at all on Thursday night. I was listening for any sound at all from Damian (who slept like a log). Yesterday I had to leave him for a couple of hours to go to the bank and I hated it. He tends to be over-confident with his walking and I made him promise not to get up. I felt MUCH better when I got home as he was in the same place I left him (although I can't guarantee he hadn't moved in the meantime). Also the bank have come up trumps with sorting our mortgage and more than halved the payments. It will make a huge difference to us financially, and once the PIP is sorted we should be able to manage OK.
We have done a few speaking, writing and physiotherapy exercises at home and will continue to do them. Our new speech therapist is coming on Monday, but we're not seeing the new physio until 9th August. The rest of the time will be spent catching up on the ten weeks of telly we've missed (that won't take long). I was really cheered up last night when we watched the John Williams Prom. While we were at the QE I had put music on most of the time. Once Damian could make his feelings known he hadn't wanted it. Every time I asked he said no. If I didn't ask and just put it on, he turned it off. Last night though, I put the Prom on. He loved it. Absolutely loved it.
There's still a very long way to go. We aren't yet settled back at home but we will be soon. I am looking forward to the new set of therapists starting and am hopeful that once we've got ourselves organised here there will be a new spurt of improvement.
Onwards and upwards.
J&D xxx
26th July 2017
Look what's just been delivered. We have some wonderful friends - many of whom we see too rarely but it's great to know they're thinking of us. Thank you xxxx
12th August 2017
3 months ago today Damian had his first two strokes. We've been home for 3 weeks and I haven't posted an update for a while so ...
Being home has been a mixed blessing. Of course it is wonderful to be in our own environment but losing the support of the hospital staff has been harder than I thought. We have had carers twice a day (first thing in the morning and last thing at night) and that certainly helps although they won't be here for much longer.
The powers that be are still not happy for Damian to use the shower which is a cause for concern. I hope that we can sort this before the care package ends. Some more physio might strengthen his leg to the point where it will be safe to go into the shower, or we might need to make a few alterations to the bathroom - either way it needs sorting, and soon.
Speech therapy at home started immediately and the new therapist comes twice a week. We work at it every day in-between too, and there is a noticeable improvement in reading, writing, typing and speaking. He is now able to respond to text messages on his phone which is reassuring when I go out.
He had his first physio session this week but the therapist will come only once a week. I'm a bit disappointed by this - I can tell that there has not been any improvement in his mobility since we left the hospital and I was hoping for a more intensive approach to his therapy. There are a couple of courses he is being referred to - a 12 week intensive course of multidisciplinary therapy at Moor Green (back at Moseley Hall Hospital) and a 10 week course at the National institute of Conductive Education. Both of these will be fantastic but neither will start imminently and so we will need to push for something more in the interim.
One bit of great news is that Damian's employer has decided to keep paying him a portion of his salary. This is a huge improvement on the Statutory Sick Pay we thought we would get and is a weight off our shoulders. Several of his colleagues have visited and they clearly care about his progress enormously. Someone from HR is coming on Friday to see how they can best support us. We are enormously grateful to them for being so understanding.
His mood is generally positive but fatigue is still a big issue. We've seen family and friends regularly which is wonderful but it takes a lot for him to be persuaded to go out. I hope when the fatigue subsides he will spend less time in front of daytime telly. A diet of Heartbeat and Bargain Hunt is not doing my sanity much good.
Anyway that's enough for now. There is a full week ahead of appointments, therapy and of course his birthday. I'll report more when there are developments.
Love as always
J&D xxxx
28th August 2017
The summer holidays are coming to an end - and I can't say I'm sorry to see the back of them this year. Some sort of normality will come as a massive relief and I am really looking forward to a new term at school.
The last couple of weeks have been mixed. He has been having two speech therapy sessions a week and his communication skills are improving well. Speech is clearer, words come a little more easily and writing and typing are getting better every day. Last time I posted an update Damian had had one physio session since leaving hospital. The second one was cancelled. To say I was disappointed would be a massive understatement. Following some intervention from our MP (!) he has since had one other session from the NHS team and it seems they consider one session a week is sufficient (although by my reckoning he's had two since 20th July which is far from one a week). Anyway - his mobility had taken a turn for the worse and I could not stand by and watch any deterioration.
Following some advice from the Stroke Association we made some 'alternative arrangements' and I am delighted that things have been moving positively again. Our wonderful GP made an urgent referral to the Spacticity Clinic at City Hospital and 24 hours later he had botox injections to his arm and leg which have made a massive difference. The injections have made his muscles more relaxed and he is walking much more fluidly and with a flatter foot. His arm now hangs in a more natural way and we are working hard on stretches to try to get a bit of recovery there too.
At the weekend we're off to Tilling for the annual shindig. I was doubtful that we would be able to manage it this year but we're going to do our best to do as many "normal" things as possible. It's a much shorter stay this year and I think Damian will just come to the lunch but it will be wonderful to get away albeit for just a couple of days.
It's been good to see friends and family over the last few weeks. Lots of Damian's colleagues have visited and it does him good to catch up with his work gossip. They are being very supportive and are as keen as he is to get him back at work as soon as possible. We know it will be a long road with lots of very hard work but he is as determined as ever to get there.
We try to set weekly goals. This week's goals were to walk round the church next to the flat (achieved Thursday) and to go to the supermarket (achieved Friday). It's vital that we go out every day. We haven't used the wheelchair for a couple of weeks, and we hope the stick will be unnecessary soon.
As I go back to work we'll be starting another new phase in Damian's recovery. The care package is coming to an end so I don't know what help we'll get with day to day stuff, and we're still waiting to hear when the multi-disciplinary therapy course will start (soon I hope). Lots of unknowns but we're both learning patience... (Damian is much better at it than me).
J&D xxx
8th October 2017
It's been a while since my last update on Damian's recovery, and I suppose it is to be expected that there will be less news as time goes by. He has made some good progress in the last month or so and we are getting used to a new (but hopefully temporary) way of life.
Last time I posted we were about to go to Rye for the Tilling Gathering. We made it and I am delighted that we made the effort but it was immensely hard work. As beautiful as Rye is it must be one of the most unsuitable places to go for anyone with mobility issues. It's hilly and cobbled and the pavements aren't wide enough for a wheelchair. We found a lovely room where we were well looked after and with the help of good friends we managed to get around as much as we needed to.
The following week I went back to work. For me at least it is wonderful to be thinking about other things but the days can be very long for Damian who is getting very bored stuck at home.
His mobility is slightly improved, and his stamina is getting quite a bit better. Most days he goes out by himself and walks round the church next to the flat.
The physio provided by the local Health Authority is, I'm sorry to say, pathetic. I can't bring myself to go through the battles we've had/are having here but they are failing Damian, me and the staff at the hospitals where he had 10 weeks of incredible therapy. His physiotherapist comes, at best, once a fortnight and seems to think leaving a sheet of exercises for Damian to do himself is enough. The occupational therapist came once and discharged him. To be fair his speech therapist comes twice a week and seems the only one to be conscientious.
We are extremely lucky, that with the help of friends we are able to afford extra physiotherapy which is getting us through.
I hope that next month a course of intensive therapy will start back at Moseley Hall which will get things going again. Apart from anything else it will give Damian a structure to his day as well as lots of speech, physio and occupational therapy.
Damian's employer's HR people have visited us a couple of times and they are being fantastic. It's good for him to keep a connection with his colleagues and he really enjoys their visits. He is determined to get back to work and they are doing everything they can to make it possible.
Our care package is coming to an end and the social worker is coming on Tuesday to decide what happens next. I am hopeful they will continue to fund a morning carer which we will need for the foreseeable future.
I think that's about it. We are pottering about in the flat, able to pop to Harborne for the odd brunch and go for a drive now and again when we feel the need for a change of scene. Damian's fatigue means we're never out for long but our friends, as always, are understanding and there when we need them.
J&D xxx
11th November 2017
Six months ago our lives changed out of the blue and beyond recognition. I wish I could say things were getting back to normal but I can’t. I know that eventually a new “normal” will emerge but I have no idea what that will be like.
Damian is continuing to be stronger, more hard working and more determined than ever. We are throwing everything we have at getting back as much as we can after his strokes. We couldn’t possibly afford it without the help we are getting and I am overwhelmed by the generosity of some very special people.
The therapy sessions are really ramping up now and he has speech therapy 3 or 4 times a week and physio at least 3 times a week. I can notice some real changes in his speech, especially when he’s not shattered. His mobility is continuing to improve too, thanks, in part, to a new fancy foot brace. I have come to realise though that of all the effects of this wicked, cruel stroke, the fatigue is the most debilitating. We find ways of coping with only one working hand. He can walk short distances slowly and carefully, and we can use the wheelchair if we need to. His communication is difficult but with effort and patience he can get his points across.
I don’t know how he does it but most of the time he remains cheerful and optimistic.
Last weekend we went to stay with Paul & Shaun in Wales and it was lovely to spend some time with them and have a complete change of scene. Damian coped well and we both felt better for the rest and the company.
This coming week is extremely busy with appointments including an assessment for the Moor Green course. It is supposed to be excellent, and takes place at Moseley Hall where we know lots of the therapists so I hope it lives up to its reputation. On Friday we are supposed to be going to see Sunset Boulevard at the Hippodrome. I am keeping everything crossed that Damian will have the stamina to go.
We are seeing his colleagues on Wednesday as they have invited us to join them for a curry. His work are being incredibly supportive and it will be great for Damian to see them and for them to see how he’s doing.
My work too are being amazing - letting me fit my teaching around appointments and come and go as I need. I miss being fully involved though. I hope that once the Moor Green course starts I will be able to throw myself back into work.
Much of the time I feel very sad about everything we’ve lost but I am also aware just how lucky we are. We are lucky that he survived at all. Many don’t. We are lucky that we have over 29 years of wonderful memories and experiences together. We are lucky that he got such amazing treatment in the first crucial weeks. We are lucky that we have such incredible support from our family and friends. And we are lucky that he is continuing to improve thanks to the amazing therapists who see us so often.
The person who helps me most though is Damian. He caught me in a down moment yesterday and told me in no uncertain terms that we must just go on. So that’s what we’re doing. Going on.
xxx
16th November 2017
A quick update:
Damian has, somehow or other, sprained his ankle. It is very swollen and his toes are bruised. Obviously this is a bit of a setback as far as his mobility is concerned. Our physio has been several times to help us sort it: we're doing ice packs and he's supposed to keep it elevated as much as possible.
The assessment for the multidisciplinary course went well and he will be starting there in January. It starts with sessions twice a week for three weeks where they will asses his particular needs, then a bespoke timetable will be created for him. I was slightly disappointed it doesn't start for a few weeks, but on reflection waiting a while might mean he is less fatigued when the course starts and he'll get more out of it.
We went for the curry with Damian's workmates on Wednesday evening. It was really good for him to see them, and he managed a coupe of hours of chatting and eating. It was really lovely.
I'm still not sure about the theatre tonight - he has his Conductive Education assessment this afternoon which may well tire him out, but we'll see.
Mary is here for a few days which is a great help, and I hope we'll have a quiet relaxing weekend after a very hectic week.
J&D xxx
31st December 2017
A quick update on Damian's progress. We had a quiet but lovely Christmas - just went to mum's on Christmas Day for lunch, otherwise we've been pottering about at home, seeing friends and eating and drinking far too much.
I am pleased to say that Damian is doing really well. After a few weeks (or months) of very little progress, the last couple of weeks have seen a transformation in his mood and his outlook. He is walking much more easily and with more energy. He is much more interested in what's going on and he is starting to be really involved in life again. He is talking a lot more too - still with difficulty, but he perseveres and always gets there in the end.
I cannot say I am sorry that 2017 is nearly over - in fact I am delighted. It has been the most difficult year of our lives and we are both thrilled to see the back of it. Things can only continue to improve in 2018 and with our family and friends' continued love, help and support we will be in a totally different place a year from now. Onward and upward.
Happy New Year
J&D xxxx
21st January 2018
I thought I’d leave it for a while before any more updates on Damian’s progress but so many things have happened this weekend I will forget if I don’t do it now.
Firstly he has continued to improve steadily since Christmas - his vocabulary is increasing and with it his confidence; he’s even been able to talk on the phone to his dad.
I noticed this week he had started putting his lunch and breakfast plates in the dishwasher. Sounds trivial I know but it was a first.
Yesterday when I got back from Waitrose he was listening to some opera. Then later while I was working he did some laundry. I also heard him play a few chords on the piano. He denied he’d played it when I asked him later but he had certainly gone to it and tinkled a bit. I believe and hope this is massively significant.
Yesterday evening we went to a friend’s for dinner and I heard him laugh - properly laugh - for the first time. He also wasn’t ready to leave until 9 pm - a good hour later than he’s been out before.
Today for the first time since his stroke he wanted to wear his watch, and then another first - he asked to listen to the radio.
So many firsts all within a couple of days. I don’t know if it’s relevant but we got the letter yesterday from the intensive rehab course. It starts with a three-week induction course (2 days a week for 3 hours or so) a week on Tuesday.
Whatever the reason I am just delighted at how things are going. We still have a very long road ahead I know, but he is getting there.
Thanks again to everyone who’s sponsored me and my family for the Stroke Association run in March. It means a great deal to all of us.
J&D xxx
29th January 2018
It's a big day today: Damian's intensive course begins. It feels like a new stage in his recovery and we are both hoping for great things.
For the next three weeks he will go for the starter programme which is twice a week for a couple of hours - increasing to four hours by the end. After that will be a bespoke course - I think three or four days a week lasting for about three months. During the starter programme they will assess his needs, abilities and his aims (still very definite about going back to work ASAP) and then work out what will help him achieve his goals.
We had thought that the speech therapist would stop coming when his course started but as he is making such good progress she is going to carry on twice a week. I can't tell you how delighted I am about this - she is wonderful.
I am (very slowly) getting back into training for the run in March. Our family team is growing by the day. We are being joined by Fiona McCanlis, Vickie Barton Glew, Neil Glew and Dominic. Again the whole family is bowled over by our wonderful friends' generosity in helping us to raise money for a fantastic organisation who offer real practical help to people like us.
More when I see what's what at Moor Green.
J&D xxxx
17th February 2018
A quick update on Damian's progress:
On Friday the induction course at Moor Green finished. He's been going twice a week for three weeks to learn about Moor Green and what we can expect from it. I went with him on Friday. Like the rest of Moseley Hall Hospital it was all a bit chaotic and tatty but run by the most wonderful, dedicated people. I feel that we are incredibly lucky to have their help and support.
At the end of the session on Friday we met four "buddies" - ex clients of the course, all of whom have had brain injuries of one sort or another. It was really inspiring to hear how much they loved Moor Green and to see how incredible their recovery had been. It was particularly moving to meet Cameron - a stroke patient who had not been able to speak or move his arm or leg for a year. He played his guitar and sang and to hear him speak you would never know what had happened to him.
Over the next few weeks Damian will have a course of one-to-one assessments after which they will design a timetable for him. That programme will begin on 26th March and last for 8 weeks. He'll then have a break, more assessments and have his timetable tweaked. It will be very hard work and tiring but I think we are both looking forward to it.
On Thursday he had his FES machine fitted to his leg. It has a switch under his ankle which fires when he tries to walk, lifting his leg a bit. It makes quite a difference to his walking - steps are much more efficient and less tiring. It will take a bit of getting used to and is a bit of a faff to set up but will be worth persevering with. Hopefully it will mean he won't always have to wear his leg brace.
His physio and speech therapy have been continuing at home too. He is starting to feel sensation in his right side and is gaining more control over his arm. Improvements are very slight but encouraging. His speech is still difficult but vocabulary and sentence construction are coming back slowly.
I am still hauling myself round the reservoir in an effort to train for the run next month. We are overwhelmed by the support of family, friends and colleagues. It looks as though we will be able to make a very decent donation to The Stroke Association. Thank you.
Friday was our 30th anniversary so to celebrate we went to Simpsons yesterday for lunch. It was pretty special and I asked Damian if he wanted to get married. It has never really seemed to matter before - we had legally become "next-of-kin" years ago but after everything that's happened I felt we should be acknowledged properly as a couple. He said yes so we are going to work towards Summer 2019. Damian will be two years post-stroke and I just know we will want to celebrate his recovery. He will also be 50, so a party will definitely be called for and we might as well make it a good one.
J&D xxx
21st March 2018
Ishould have posted this a few days ago - sorry.
The run I was doing (along with family and friends) to raise money for The Stroke Association was postponed because of the snow.
I was disappointed as we were geared up for it, but seeing the weather on Sunday it was probably the right decision. The run will now take place on Sunday 6th May. There are two positives: I will be able to do a lot more training and hopefully get round a but more easily, and there will be more time to raise extra donations.
Again - thank you so much for all the generosity so far.
(I'll do a proper update on Damian's progress next week)
Jon xx
12th May 2018
It is a year today since the first of Damian’s strokes which have changed our lives completely. In some ways it seems like yesterday - I can remember every detail of parts of that ghastly day - and in other ways it seems a lifetime ago, as I can barely remember what it was like before.
Since my last update, Damian has come on in leaps and bounds. The course at Moor Green is just amazing. His speech and communication are getting better and better. More importantly his mood and attitude are vastly improved. He goes four days a week and has quite a full timetable. At first he was exhausted by the time he got home but his stamina is much better now.
Robbie, Damian’s physio, still comes three times a week and his dedication is paying huge dividends. At last Damian’s arm is getting some movement and he is able (sometimes) to squeeze his fingers. He was very reluctant to use the FES machine on his hand at first but now he can see changes happening he is much more willing to put in the work.
The leg FES has not been as successful as we hoped - the pull on his foot makes him very unsteady without his leg brace - but we will keep trying. His walking speed now is amazing and unless he’s tired the stairs at the flat ore no problem.
The Stroke Association Resolution Run finally happened last Sunday. It was raging hot but I managed to complete the 5k in 34 minutes. I was delighted to get round and as a family we raised over £2600.
Damian’s employers (like mine) have been extremely understanding and generous. On Wednesday this week his manager retired and Damian was invited to the lunchtime do to say goodbye to him. It was the first time he had been to the office and his colleagues were really delighted to see him. His chair and desk are still there waiting for him to go back. It will be a good while yet but he is determined to get there. It was great to be able to thank his manager for his kindness and generosity.
A significant issue is Damian’s music. I am delighted to say that he is now listening to music again. It’s lovely to get home from work to the strains of Mozart rather than crappy daytime telly. He really enjoyed the choral concert at school the other week and is keen to sing in it next year. He hasn’t played the piano (he says, but I have some suspicions that when I’m out he has a go). When Damian was in Moseley Hall there was another young stroke victim who was a music teacher and he is now at Moor Green too. There’s another bloke who plays the guitar as well. One of his therapists is going to get them together each week with Damian on piano. It won’t be his kind of music but it’s a start and it would mean the world to both of us if he could start playing again.
I think that’s all the news for now. We are tottering on, making small improvements every day. It’s frustrating, hard work and tiring but the little victories make all the effort worthwhile.
J&D xxxx
19th July 2018
It's a year today since Damian came out of hospital. I can't believe how quickly the time has gone. There hasn't been an update on his progress for ages so I thought I'd better post the latest. Whilst he has improved enormously we still have a long way to go. He is working incredibly hard and always with such determination and good humour.
As well as the physio and speech therapy at home, he goes to the rehab course at Moor Green four times a week where he takes part in all sorts of classes and therapy; music, tai chi, cookery, gardening, speech and language therapy. They also go out and about to various places to practise using public transport, going into coffee shops etc. Getting out most days and interacting with lots of different people has made a massive difference to his mood and his confidence and I will be very sorry when the course ends in a couple of months.
His speech is still a real struggle, but he never fails to try - wherever we are, and whoever we are talking to he will always have a go.
His mobility is ok - he can walk reasonably well. He is getting a new foot brace soon which was made from a cast of his leg, and we are hoping he can have some surgery before long which would mean he wouldn't need a brace at all. That would be truly life changing for us as he would be able to get up, go to bed and get in and out of the shower without help.
The arm is coming slowly. His incredibly dedicated and conscientious physio is getting results that others have told us were very unlikely. He can now lift his arm and even squeeze his fingers, and work is starting on serious hand work to get some function back. I know he will do it - we won't stop trying everything we can to get back as much of what he's lost as possible.
Still he is being supported by his employer and we are working towards some kind return to work at some point. Their generosity and faith in him have made a huge difference to us, not least in allowing us to get the extra help at home.
The good weather, the fact I'm off school and his improving stamina mean we can get out and about a bit more now and we're seeing more of friends and family. We are looking forward to a few days away with the family soon, and a trip to Lugano at the end of August. I can't say things are normal or as we want them yet but we'll get there.
J&D xxx
17th August 2018
Today is Damian's birthday and one year before we celebrate his 50th, his recovery and our wedding. Also today my FB posts about our experiences over the last year have been featured on the Different Strokes website. They support younger people who have had a stroke.
We're doing ok at the moment - there's lots going on rehab-wise. I will post an update soon. Xx
19th September 2018
Summer Update
The summer holidays are over and looking back at my posts form a year ago has made me realise how far we’ve come but that we are nowhere near where we want and need to be. This is a long journey.
Damian is still going to Moor Green most days for his rehab therapy and it is continuing to make a huge difference to him. The activities and therapies all improve his confidence and mixing with others, especially others who have suffered some sort of brain injury, is very helpful. It has meant we haven’t been able to go away for more than a few days at a time but to be honest, I’m not sure that would have been wise anyway.
We’ve had weekends in Keswick (to celebrate my bother’s fiftieth birthday), Wales (to see friends) and to Rye for the Tilling Gathering. We also had four lovely days in Lugano with Michael and Piyush. It is always hard work being away from home, but with our wonderful friends and family we have made some great memories this summer.
One of the most significant things to change over the summer is Damian’s attitude to the piano. At first he didn’t go near it, but once the music group at Moor Green started his attitude changed. At the end of July there was a Hawaiian Party at Moor Green where the Music Group played. Damian played keyboard (left hand only obviously) but seeing him lead the group was just like seeing is old-self. He seemed to come alive, encouraging the others, singing along and keeping the whole thing together. Since then he has done some practising at home and was happy for me to get him some music written for one hand. He seems more fluent reading music than reading words which I hope will build his confidence. We also met the coordinator of the Birmingham Centre for Arts Therapy to see about Damian becoming a volunteer in one of their music therapy classes. I hope we can incorporate this into his last set of weeks at Moor Green.
His mobility is improving well - mostly I think, because his stamina and strength are better. He was due to have some more botox in his leg and foot last week but when the physio saw his foot he said surgery might be the best thing. It sounds drastic but if it means that eventually he won’t need a foot brace then it could be worth it; no foot brace would mean he could use the shower unaided, get up and go to bed when he chooses and we wouldn’t need a carer. We have an appointment to see the surgeon in a couple of weeks.
In August we went for an assessment to see how realistic it would be for Damian to drive again. He did really well after a bit of practice driving an adapted automatic car so that will be something to think about at some point. The recommendation was that he would need a few lessons but they could see no reason why he shouldn’t drive again.
Life is still almost entirely consumed by dealing with what has happened and it still doesn’t feel settled in any way. I don’t know when or if it will. We are getting used to it though and mostly cope. It’s tiring and hard work but we are very lucky with all the help and support we get.
More when we’ve seen the surgeon in a couple of weeks.
J&D xxxx
31st October 2018
Wow - it’s four years since we were in New York. We had both just got new jobs (which we love) and moved into our flat (which we also love). Life is very different now and not in a way we expected or wanted. I have been meanin to post an update for a while so here goes.
Damian is still making great progress - particularly with his arm. This is the arm some told us it wasn’t worth working on. We can’t and won’t accept this and his hard work and persistence is paying amazing dividends.
His new orthotic has been something of a disappointment. He’s on the second version which he can wear for ten minutes before being in pain, so we are back to the one he’s used to. We have an appointment this morning to see if it can be made to fit him better. Given its bulk and the hideous shoe thing he has to wear I’m not sure it’s worth the effort but we’ll see.
On a more positive note he is now on the waiting list for surgery on his leg. The surgeon was hopeful it would make the difference we want. We may have quite a wait for this (up to 9 months) but it will be worth it. His mobility is OK and he is speeding up but we have had a couple of falls recently. One of them was quite spectacular - deeply upsetting at the time but he was OK and looking back I can see the funny side. We were leaving a restaurant (one of the open-plan eateries in the middle of Grand Central) and he fell into the table of a young couple who had just had two large bowls of ramen soup delivered. You can imagine the rest...
On Friday last week we visited Damian’s office. It was great for him to see his friends there and his desk is still there - waiting for him to go back. His HR people are doing everything they can to facilitate this. His rehab course comes to an end in four weeks, and then we will be contacting ‘Access to Work’ to see what’s possible.
I feel quite unsettled by the thought of the course ending. It has been great for him to have structure to his week, and to mix with others who have had similar brain injuries. I don’t know how we can replace this but we are looking in to options. We have his discharge meeting this afternoon so it will be interesting to see what they have to say about the future. I am deliberately posting this before the meeting as I always leave them feeling negative. I’m not sure why but that’s the way it is.
It feels as though things are about to change significantly again after a fairly stable six months. Who knows where we’ll be in another six months. I’m not sure another trip to New York will be on the cards by then but we will keep doing everything we can to make it possible one day.
J&D xxx
19th November 2018
Just a very quick update on Damian. The course at Moor Green is coming to an end which I am very sad about in many ways. It has given him a structure to his week, lots of people to interact with and some good therapy. We will both miss it very much and life will be be very different when it's over.
The surgery on his leg will hopefully make a very positive difference to him, and I am delighted that it has been brought forward. We had been told to expect the date to be around June next year but it is going to happen on 3rd December. It's going to be a bit awkward work wise for me but it is great news overall I think. He has two appointments before so hopefully we will have some idea how it will affect him in the short term.
Lots more to say but not much time this morning - I will update properly soon.
J&D xxx
28th November 2018
It’s a big week for us this week. Damian had his pre-op this afternoon. Everything was fine and all being well he will be having his surgery on Wednesday next week (not Monday as originally planned).
This morning he gave a presentation at Birmingham University to a class of thirty or so students about his life coping with aphasia and his other difficulties. He managed to prepare the PowerPoint file himself and deliver it successfully.
Tomorrow is his last day at Moor Green. I have been dreading this for weeks. It has provided therapy, stability, continuity, friendship, advice, rehab and encouragement to us both week in, week out since April. Now the end is here I feel OK. It is time to move to the next stage of his recovery and we need to take responsibility for what comes next. We will continue with his physio for as long as we possibly can. He will strive to get back as much of what he has lost as he is able. His courage and determination make me so proud of him.
I’ll post again once he’s had the operation.
J&D xxx
31st December 2018
I’m not sorry to say goodbye to 2018. It’s been another difficult year in many ways. Damian’s courage and hard work have had some really positive results but I can’t pretend we are where I hoped we’d be twelve months ago.
Damian has been very down over Christmas and this has had a detrimental effect on his skin, but the antibiotics are finally working and he is now much more like himself.
Now his rehab course is over we are trying to find useful ways for Damian to spend his time. We will continue with the physio for as long as we can afford to. Last Friday we re-connected with the speech therapist he saw before Moor Green. It was a really positive meeting and, I think, one of the reasons for the improvement in his mood. She has lots of ideas for more therapy and is going to focus on IT and social media, reading and writing. He will see a speech therapist twice a week as well, and they are going to organise some occupational therapy to work on functional activities like cooking and cleaning.
As well as the therapy he will be going to the University once or twice a week to a support group and a conversation analysis class, and to a stroke club with our lovely friend Helen Neylon on Fridays.
The end of his course, his operation, Christmas and other factors have made the last month or so really difficult but I’m optimistic that things will improve once we get into a fresh routine in the new year.
We’re out tonight with some neighbours and have the family coming tomorrow. His cast comes off on Wednesday then a couple of days off before the new routine kicks in.
Thanks for indulging me by reading my rambling posts.
Have a great New Year celebration tonight and here’s to a better 2019 for all of us.
J&D xxx
16th February 2019
It’s our 31st anniversary today and time for an update.
I couldn’t say too much until now, but just before Christmas we found out that Damian’s employer was ending his contract. We knew it was coming, and they have been extremely supportive of us both but it was hard for Damian to accept that the possibility of him going back to his old job has disappeared. I’m fairly sure that the stress from that caused all of his skin problems over Christmas.
This change has, obviously, had a very detrimental effect on our income. The process of claiming benefits is pretty horrific I can tell you. Because I am (apparently) so well paid, Damian is not entitled to Universal Credit. I believe there is one benefit that doesn’t take into account my income or our savings so we are hoping to get something from that. It won’t go anywhere near to making up the shortfall but it will help. I started the claim on 31stDecember and we don’t have an interview until next week. These things move frustratingly slowly and nothing is guaranteed.
On a more positive note, Damian is finding lots of ways to fill his days. He is back at Sandwell Hospital for some brilliant therapy. He goes there twice a week. He sees a physiotherapist three times a week (this we have to pay for and it is pretty eye-watering but we’ll carry on for as long as we possibly can). He is helping out at a class at the university once a week – this is something I hope we can expand on, and eventually he might even be able to get paid for taking part in training for health care and speech therapy students. Once a fortnight he goes to an aphasia support group at the university and he will soon start taking part in a research project back at Moor Green. We have both started going to the local Silverlining meetings and events. They are a charity with a really positive outlook who support people who have suffered brain injuries. They are a really good bunch of people and I think we will both get a lot out of being involved. All in all his week is kept pretty full which is a huge blessing.
His foot is massively improved following the operation in December. He was in a cast until early January, then an air boot. For a couple of weeks he wore it 24 hours a day, then for three weeks or so he wore it during the day. He now only wears it until his carer has been, and the rest of the time he walks in regular shoes with no brace and no extra support. This is a really significant improvement. He is a little slower but I think that is a confidence issue. He is getting stronger everyday and as soon as he can get in and out of the shower safely we can stop having a carer.
He (and his physio) are working really hard on his arm and hand. It is true that there is some progress here. He can lift his arm up and squeeze his fingers a little but the improvements, once again, are frustratingly slow.
I find it difficult to notice improvements in his speech to be honest. I’m sure it is getting better but it is still very hard for him to communicate effectively. He is amazingly patient and perseveres to get his point across. He absolutely refuses to use the aids his speech therapists have recommended. He finds typing and writing really hard but he is starting to use Twitter a bit again. Reading remains a struggle, but again he shows perseverance.
His stamina is certainly improving. He is still very focussed on time, and likes have dinner and to go to bed at the same times but he has more energy, is more active and sleeps less during the day.
And so we go on. The next hurdle is sorting Damian’s income, then we can start to make plans for the rest of the year including our wedding and his 50th birthday celebrations in August. Keep your fingers crossed for us.
Love
J&D xxx
12thMay 2019
It’s two years today since our lives were turned upside down by Damian’s strokes. I haven’t posted on his progress since February and I know some friends we don’t see often rely on the updates for news so here goes.
Since my last update he has been back at Moor Green three times a week as part of the research project. The routine is good, and he seems more communicative and words come more quickly so I’m sure it’s been really beneficial. It ends this week, then there will be assessments, then a month with no therapy, then another assessment to see if the improvements are maintained. After that he will be back under the wonderful people at Sandwell. It will be great to see them again, but he will miss the staff and patients at Moor Green. Whilst he hasn’t been seeing his speech therapist from Sandwell, they have been sending an Occupational Therapist. She is a formidable woman who takes no nonsense at all. She really is amazing – strong, bossy and pushy but very caring. She has got him cooking with little or no help and will get him going with other household chores. He has needed a lot of encouraging with some activities, but he is always delighted when he can manage something new.
His arm and hand are very tight at the moment, but he is due for some more Botox injections next week which will relax them a bit and hopefully allow him to do more targeted physio exercises. In July he has an appointment to see a hand surgeon at the Royal Orthopaedic Hospital to look at the possibility of some surgery on his hand to free it up a bit, hopefully eliminating the need for Botox and allowing some more permanent improvements and maybe some functional movement.
We have been to a few Silverlining meetings and events and are enjoying getting to know them. Their positivity is really encouraging, and it is great to see what a good attitude can achieve. The support group at the University has also continued and he has been asked to be part of the Experts through Experience scheme there – helping students learn about people with aphasia and other speech difficulties and brain injuries. I hope this can be something he can really get involved with on a more long-term and regular basis as he will need a new routine now the research project is over.
We’ve had a couple of weekends away which have been lovely – one in Wales with Shaun & Paul and another in Cheshire with Claudia and Jon. We are trying to get out and about bit more now too, although both of us tend to be knackered most of the time. We are really looking forward to our summer holiday with Michael and Piyush and of course to our celebrations in August. School is very busy and I love being there – I still can’t spend as much time there as I would like but I am confident that will change over the next stage of Damian’s recovery as he becomes less dependent on me.
Damian’s mood is generally good although his motivation varies a lot. Since Christmas his skin has been really playing up. He has always been prone to eczema and when it flares up his mood and motivation dip. I’m not sure which is the cause and which is the effect but it has certainly caused some difficulties recently.
When this all first happened, we were told to expect three stages: shock, grief and then acceptance. I think we are struggling with acceptance; I know we have to learn to live with coping with all the losses, but surely there has to be an attitude of fighting to get back as much as we can. In fact, I don’t think we will accept it. The fight goes on and the very small victories make it all worthwhile.
In Damian’s words – “onwards and upwards”.
J&D xxx