It will be the 2nd anniversary of John’s Stroke on 7th February and we think we’ve managed reasonably well (apart from the occasional rant from me,) Although John had had a massive Stroke, paralysis, speech etc, he’d recovered amazingly well so that he was discharged within the week. He shuffled slowly out of the hospital.
Looking back, he’s made further progress albeit slowly, and can walk half a mile to our local Co-op and back on a good day. He still drags the left leg! His left hand is weak. His speech came back quickly but his voice is very low. It has improved and he can even shout if I make him cross (I work hard at it ?).
Over the two years, we’ve managed to go on holiday abroad four times and taken long train journeys twice. We still have a good social life although it has been adapted to cater for John’s needs. For instance, we’ll do two dances, or we’ll leave a function early.
It sounds a very successful recovery and many SS would love to be able to do what he does. But he does have some cognitive issues, time management being one. We have a white board showing our plan for the week which has helped enormously. There are other things such as still saying goodbye on the phone even after disconnection, or hovering instead of walking away at the end of a chat. But these are minor issues.
Last weekend it really hit home to me how fortunate we’ve been in our Stroke journey. We’d travelled by train (6 1/2 hours) to Devon for a few days to see our grandchildren. Obviously, we expected to have plenty of rest to cater for Stroke fatigue and were staying in a hotel when John became really poorly. We eventually got medical help and he was diagnosed with UTI but the interim period was quite challenging. He couldn’t get off the bed. I struggled to lift him but once up he couldn’t tell his feet to move and,,,,,he needed the bathroom! It was very distressing for him but we finally succeeded.
My hat goes up to all of you who’ve had far worse things to deal with. Our Devon son was amazing, trying to juggle work, looking after his own sick family and the addition of elderly parents! We had further worries about our Derbyshire son!
I suppose I left that hanging in the air. It was a huge worry when John was so poorly. We have two sons. The Derbyshire one, a firefighter, was out in the Med rescuing 47 refugees. He uses his annual leave for humanitarian work. No port would open to them until Thursday stand-off was over at but the crew was threatened with prosecution for alleged people smuggling and a possible 20 year jail sentence. This has now been refuted but The GP said the worry didn’t help with John’s recovery. Thankfully, Bren is home and John is making good progress.
Hi Veronica. He has done well, but we survivors are always conscious that progress, after initial bursts, is painfully slow and there are setbacks. I just thought I would post again about my dragging left foot. As you know I had an FES machine to aid walking. Last December, after 3 years, my left foot began to lift by itself and I have not worn the FES machine since. When I looked up ‘dropped foot’ online, it said it can take up to two years or more to recover. So, whether through constant exercise or the stimulus from the machine, the dragging has virtually ceased, though there is still a small amount if I am very tired.
My left hand and arm are still weak, but I am now working on those. The other day I was being taken to the shop by car, when I realised, half way there, I had come out without my stick quite naturally. A bit of panic set in, but in the supermarket, I supported myself with a small trolley and my partner came round with me, so I managed. I need a list though.
Unlike John, I cannot really manage a long train journey, but might make that a goal for this coming year. Thank you for your posts.
Thank you for your feedback, JJM, especially about the FENS machine and continuous exercises. I’ve read your posts about it to him but it falls on deaf ears! He exercises spasmodically so is making some progress but it’s up to him at the end of the day. I read this Forum especially for my own benefit, to help me understand how he is coping with this change of life. I’ve had to adjust, too. It hasn’t been a piece of cake as John doesn’t drive now. Pre-Stroke we shared homelife. He did shopping, most of the cooking, gardening and general housework. I did washing, ironing and everything else. Over the two years, John has achieved success in cooking meals again - with some disasters and some huge successes - but, hey, he did it! Shopping is my nightmare though, but it always was. I whip round quickly, he takes a leisurely stroll! Now I leave him to shop then pick him up afterwards.
Sorry for the moan, it has been a very long month! Thank you for responding. Veronica
I’ve been watching your progress and amazed at all you’ve achieved so far. Long may it continue! I read out most of the posts to John, especially you driving again but he has made his mind up not to reapply. It’s probably just as well as our two sons were apprehensive. They are both Advanced drivers so extra aware.
This last month has been particularly stressful as we were at A&E January 1st with John’s damaged foot. Plantar fasciitis! It seems to be improving but he’s a lot less mobile. Then we both had heavy head colds. After that he had a UTI and S&D whilst we stayed in the hotel! You can imagine the scenario (which is amusing,,,,,in retrospect! ). But underlying all that was the constant concern for Bren out on the Med with threat of prosecution for saving lives!!
Thankfully January is over. Oh dear, it looks like I really needed to offload! Thank you for responding and taking time to listen,
Thank you for sharing Johns progress and his trials.
I think John made the right choice of train over car. I did the opposite. I decided to apply my energy to making longer and longer car journeys. Well after a while, about 9 months, I eventually made it to Clacton, which is a half hour. I dont think anyone has been so enthralled by Clacton as I was on that day. Grey, wet, chilly but I was thrilled.
I cant get much further than a halfhour and I am now 38 months. I cant take any risks because I have to be safe when I drive. Had I opted for buses and trains I could have risked increasing journeys on the basis that I couldmanage to get home if overwhelmed. My wife will not drive. On the plus side the car gave me a lot of independence in the early months. I still haven't ventured beyond Colchester (nice shops, nice Castle) and Clacton (sea side and the local stroke group). If I do a little more, say 45 minutes, then I havent got any energy to enjoy the trip. I have a second house in NW London and havent seen it for three years. We rent a seaside flat in East Wittering, which I havent seen for 4 years. I do miss those holidays in that flat.
I too think I am lucky as I was totally paralysed but got up and walked in the first week. Its right that we look at what we can do and not what we cant. But John and I are not lucky at all. Its very unlucky to have a stroke in the first place.
I too am troubled by the endless stream of medical issues that we seem to attract. My ear has plagued me constanly and its only now that I am sorting it.
I guess I think how lucky I am that an infected ear is now top of my problems.
The audiologist suggested I might benefit if I buy myself a tinnitus relaxer. Well it works for me ! I have gotten off to sleep three nights now, when I know I would have been out of bed and watching TV to get get sleep. Well worth the £30. I have also bought a light box, about £40. Reserve judgement on the light box. First time it was very good, but now less so. Perhaps I am not close enough for the box to work. I will try for a few more weeks.
If you are reading John Jeff then please note how pleased I was with your left foot easing. Thats a real testament to your efforts.
It's a pleasure to read your posts. Obviously better when it's good news and or funny. But extremely important and interesting when it's about V & J's real life. Helps you to share the burden a little and helps me to put some of my very trivial niggles in perspective.