I don’t get on the forum very often because of browser issues. I just thought you might want to know I am still alive and battling on. This last year has been a bit regressive since an inner ear infection played havoc with my balance and walking. Fortunately, I have been able to get physio again and things are improving. After 7 years I still get post stroke fatigue, but live with it. I still cook, bake and make marmalade ans still manage short coach holidays. We survivors must always try to hope for the best and do our best. Best wishes to you all.
@John_Jeff_Maynard its good to hear from you, wishing you all the very best, take care
Hi J.J.M good to know you’re still around. Stroke is bad enough without complications but pleased you’ve battled through. Glad you’re still baking. I gave up marmalade making a few years back when I couldn’t get it to set, so lots of jars of ‘runny’. My first coach journey was a disaster, as soon as I got to destination was drained so after a coffee got next coach back But now as I know what to expect fine. Live life to full. Are you still managing to make music ? Paul
I, for one, am glad to hear from you. It’s always good to read something from the ‘old guard’. It is reassuring to discover that there is life after stroke and satisfying to be given some sort of idea how things work out.
It is about eighteen months since my ‘event’ and it is a continuous learning process for me. I find this forum to be a good point of contact, important in my life. My views are not always conventional but I do get chance to express myself and to follow what others have to say.
I don’t know what your browser issues are but I did have a problem of that sort myself. I solved mine by using a different browser and touch wood I now no longer struggle to connect. The browser I am using is called ‘Brave’ and is available across all platforms and in apps stores. It is a free software and easy enough to access or remove.
Just ignore this if it doesn’t suit you, I do hope you resolve your problems and we see more of you. I must go it is 7.30 am and I’ve a loaf of bread must be baked. Take care and . . .
Keep on keepin’ on
Hello @John_Jeff_Maynard. Really good to hear from you, I was wondering how you were getting on. Anything that compounds stroke issues must be difficult but well done on keeping up with the things you enjoy. I was talking to a lady who lost her husband earlier in the year yesterday, and we discussed how important it was to fill our time with the things we love as we are only here for a short while. You sound to be embracing that , Julia x
Nice to see an update from alumni @John_Jeff_Maynard
If you’ve got browser issues that you wish to try and resolve I’m happy to help. You can reach out here or by message
It would be interesting to hear some of the lessons from your latter stages of your journey for example when/ why you stop and why you went back to physio and what gains you’re getting. What are the reflections do you have?
Most forum uses fall into the very new to this world, and the regulars in the first year or three. Those in the first year or three can advise those who are new. Nobody really is providing insight for those regulars or others in the same time frame
Thank you Simon. I was improving well until a second small stroke in 2020. Then came lockdown and,last year, a series of small infections…the worst being the inner ear infection. I am also growing older and will be 80 this year. So I am trying to combat age as well as the effects of stroke.
The greatest danger after the first three years is inertia and lethargy. So…I still do three exercise classes a week aimed at seniors, push my walking and try to do what household tasks I can. If I am honest, Ihave got into bad habits with my walking and am now trying to correct these. You also have to work your way through down days as well as enjoying the good. It’s all about keeping motivation going.
I don’t think any of that was a surprise. However reading it was a salient reminder of where the focus should be thank you
I am struck when I read the posts on here from folk who are navigating their journey in the context of being further down the temporal path form me -I’m a mere 65 - there are a few commonalities that lay ahead expressed in their descriptions that my wife and I should be anticipating and maybe wise to do some ground works to prepare in advance
Of course that has not translated to action!
Early days yet perhaps
Best wishes on your journey
@John_Jeff_Maynard good to hear how you are getting on. Hope your balance issues are now sorted.
Sending best wishes.
Many of you know my story as a caregiver for my mother who had a brain bleed stroke 2 years ago. At any rate, she recovered very well physically from her stroke, but not at all mentally. We were told about post-stroke regression, and that is exactly what happened to her over time. Her mental state got slightly better after the first 4 or 5 months (her speech and memory were excellent at this time), but then she suffered a steady decline in her emotional state. Her rational side also started to go about 7 months after her stroke (didn’t want to take a bath, wash hair, take contact lenses out at night, etc.). This continued on until her death. Her apathy got worse and worse and worse. But, physically, she never declined - only got better over time (very weird!). Her physical recovery was at about 85% or more a few months before she died, though we know that she may have started to decline physically as she aged further into her 70s.
The whole point I am trying to make is, is that you can never let your guard down after you recover from a stroke. Post-stroke regression sneaks up on people quickly, in particular for those over 65. That’s what we were told, but it can happen at any age. They said my mother’s age was against her because she was in her 70s. Regression can be very hard to stop once it starts. Why? Because apathy is often a part of post-stroke regression life, leaving one discouraged to exercise, sharpen their minds, etc. It’s an upward battle, and it’s just unfair.
Best of luck to everyone on here. Stay strong and keep moving forward.
@John_Jeff_Maynard good to hear from a fellow veteran. Similarly 7 years going on 8( next April). Like yourself have had a few setbacks in recent years. A couple of falls, one quite serious, a DVT followed by a new round of blood thinners and strict instructions not to fall! A couple of ear infections. All negotiated and treated now but it did knock the confidence out of me for a bit. However. Good news is I also to o my surprise was still on the treatment schedule with a spasticity clinic. Left hand and arm still badly affected. I have been given a thorough assessment. It all came to a temporary stop during covid lockdown. But I am back on a programme now with Botox which is helping a great deal with stiffness and the inevitable curling up of fingers in the affected hand. I still have no function there but still maintain hope. The excellent physiotherapist said that progress is always possible it is just increasingly slow as time goes by. So I have stuff to work on. Slowly. I have been instructed to keep working on whatever small movement I still have. And I do have some tiny movements so theres an ember that I have to nurture into a flame. Walking had suffered, due to confidence knocks. I don’t go out independently at all now for fear of falls. This will change. It isn’t as bleak as it sounds, I actually go out quite a lot I just always have a companion which is great actually. For theatre and other shows I can almost always get a companion ticket either free or st a substantial discount so everyone is happy. I have learned vto always book assisted travel on trains etc.
It really helps to relieve stress for companions as well as me. I use a very compact powered wheelchairas I can’t walk very far. It has made a huge difference. Just makes the world bigger. Fatigue is occasional still but not as bad as in the early years. I don’t work now after losing my job five years ago. I don’t miss it. The stress was a major source of fatigue. It wasn’t a happy parting but I got a settlement. It still took a long time to get over, still not completely over it. It was very unpleasant. Otherwise I have lots of activities and involved in a few local projects. I started a blog on one of my projects:
It is a historical project. Do have a look.
Still here! alive and kicking
Hello John Jeff, so pleased to hear you’re doing ok. I’m still making some improvements with my memory but occasionally I’m reminded of the brain injury when my mind goes blank all of a sudden — very frustrating but I guess I’m getting used to it. Glad to hear you’re still baking and making marmalade. I’m getting ready to make Christmas cakes, I’m not making as many as I used to but I’m looking forward to getting started.
Do you ever hear from Colin, I miss him not being on the forum, he gave me a lot of advice when I first joined the forum following the stroke.
Stay well John Jeff it’s good to see you back on here.