good luck with it all
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Hi Joey.
So sorry you’ve had such a nightmare time of it. My heart goes out to your family too.
I had my stroke nearly a year ago. I’m currently awaiting a recording loop implant for my heart to see if my stroke was due to AF. Apparently, in 10% of cases they never find the cause !
I know how it can hurt when loved ones turn out to be unsympathetic. Fortunately my family were ok but a couple of close friends shook me to the core. Basically, I accepted things wouldn’t be the same with them but said my piece and moved on! Life is obviously too short.
Don’t beat yourself up. Hope you can enjoy life and make the most of things. Holidays are a bonus.
Best wishes to you all.
Cynthia
Ps if it sounds like everything is wonderful my end, I’d be lying but I’m doing my best. 
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I. Have most of your symptoms and feel I am regressing. I do have saliva problems and when I swallow things go the wrong way and I cough and choke. My walking even with the stroller is not steady and I have had several falls one which cracked a rib and 6 weeks later, still hurts and I am frightened. My daughter is getting in
Ncreasingly cross with me because she feels I don’t try,I,m about ready to give up!
,
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@Georgie2021 sorry to hear of your struggles. If your current issues arw now or getting much worse you should get checked over. There are many ups & downs in the recovery journey. Please don’t give up. Have you sjpwn your daughter this forum? It might help her understand a little bit more.
Sending my very best wishes.
Ann
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Please don’t give up, I say as I feel the same way. I haven’t fallen for awhile now, so that is good. I have upset my daughter in some unknown way. She isn’t speaking to me much, but I am afraid to ask her what I have done. Very sad as she and my grandson are basically my only in person contacts outside of drs and therapists. The choking and coughing…I always get caught by surprise. I have forgotten to keep my head forward while swallowing, not try to carry on conversation or do something else while I am eating or drinking. After getting through the extreme dysphasia, I guess I thought it would never be a problem again. I was wrong. I won’t be trying to relearn multitasking while I have a drink or food near me! I am choking enough these days to remind me again.
I am sure, your daughter, like mine, loves you dearly. She may just be frustrated that she can’t help you with some things, or tired. I am certain mine is tired as her whole life changed along with mine due to the strokes.
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Hi Ana , I am 80 , had a small stroke and expected to be fit by now( my stroke was July27 last year) . Instead I have regressed in the last 6 months . Pressure in my head and giddiness have stuck there and it only seems to get worse , almost intolerable . Putting my head down is the only way to ease it . I finally went to a neurologist who wants an MRI to see if there is anything else going on in the brain . Still waiting for MRI Judging by your experience and others I may be waiting for improvement for a long time to come .
I should really check in to the forum more often because knowing what others are going through does somehow help .
There are still small things to give pleasure and in particular my children have astonished me in their care and concern . A few old friends are in my loop but many others have dropped out . Unsurprisngly ,
as I have dropped out too .
All the best to you and let’s hope the next year brings some magic ,
Gay
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When it comes to stroke or any brain injuries, the one thing I’ve come to realise is you are not in charge anymore, you are not in control, your brain is! And particularly in the early stages of recovery, your brain will dictate what you can and can’t do and when and where and exactly how much you can do!
Your brain is in charge now not you!
Doesn’t matter who tries telling you you’re not doing enough or you’re not trying hard enough, the brain is one stubborn bugger when it comes down to it’s own health and recovery. It will not allow outside influences to its own healing. Why do think you get so tired, fatigued, that tight squeeze you may feel in your head, headaches. That’s your brain dictating and there’s no use anyone trying to argue with it, if your brain decides that’s as much as it’s going to allow you to do, then wild horses aren’t going to budge it.
It has to be that way because it’s been damaged and it needs time to heal and repair and regrow and it doesn’t simply happen over night or in six weeks. And anyone trying to push for more too soon or too often are not going to get anywhere. That can hinder progress or there is also the risk of causing further damage. Let your brain and body dictate as it should do, it’s doing what’s best to heal and grow.
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My siblings and I used to get that way with our mum when she’d be recovering from illness, and two of my sisters was nurses. They had the greatest of patience for their own patients, but now one likes to see their parents ill and are always going to want them to hurry to get better regardless of conditions. Also we didn’t have the power of the internet to even look up mum’s illnesses as we can do today.
Mum was always seen as the glue that held the family together after dad died even after we’d all flown the coop and we were scared of losing her too. We’re older and much wiser now having been through our own ordeals. That fear often comes out as frustration and anger, impatience and criticism and needs to sat down and discussed. Show her this post, let her see for herself, through us, what you are up against, the kind of efforts you are already making, that she just cannot see. It might just make her understand and maybe even appreciate just what you are having to go through on a daily basis.
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Hello Gay, just a quick note to send you cheerful vibes and ask for an update.
We seem to have vaguely parallel experience, 80 y.o. With ischemic strokes a year ago so I wondered how you were doing. My daughter keeps me going and cheers me through the bad patches…after six months I was doing fine but since then the deterioration is more frequent and I no longer have the energy to fight by going for walks and just getting on with the things I can do.
How are you getting on? Best love, Ana
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Quick one @stokiejoey
I watch loads of ‘ambulance’ on bbc and Royal Stoke seem good and competent… would you agree?
Kieran
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Hi Kieran.
Yes royal stoke are great and really looked after me for the week I was in there while they got me medically stable and taking my first assisted steps before I was transferred to a specialist rehab hospital in cheadle, Staffordshire. The ambulance was also quickly despatched from the moment my wife called 999 after I collapsed in our bedroom. I’m actually going be back up there sometime next month to see my old stroke consultant to try and sort my ongoing stroke pain issues.
All the best 
Joey
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Hi Simon and thanks for that most interesting and thought provoking input.
After more than a year in this situation I’m sure most of us stroke recoverers realise that there is an awful lot out there that the experts haven’t even tapped. I definitely listen to my body now and I had a very interesting observation recently…I have been deaf all my life, never bothered me, just wore the aids and got on with things and most people never knew. With this recent really hot weather I developed a fungal infection which meant I couldn’t wear my aids - disaster as I am stone deaf without them, and very frightening as one feels abandoned in a sea of silence. I just managed by spending a lot of time reading and not frustrating myself doing things that actually require one to be able to hear (just imagine I don’t even hear the loo flush and the only way I know the kettle has boiled is to put my nails against it and feel for the boiling water making it quiver). anyway that is just an aside to the point I want to make which is about upsetting the brain. I found a documentary with subtitles which I watched…it was fascinating and very thought provoking, all about Chile and Pinochet and the slaughtering of the Terra del Fuego Indians, the ones that one saw pictures of starkers with snow falling on them. The documentary ended with the political victims being thrown to their deaths from planes…you cannot believe that they actually found a lot of those by dredging up the heavy railway ties used to weight the bodies… anyway, it was a very moving documentary and not being able to hear anything like the music or the Spanish dialogue, I just read the sub titles.
My poor brain had a real wobbly and I was shattered the next day and for two or three more days by this completely new experience. I was already coping with the deafness and now there was this extra mental diversion, I have to say I had to go to bed so extreme was my reaction. It had to be the brain being over stretched. The Xanax helped to calm me down a bit,
I can draw no conclusion from this episode except to realise that we know so little and can only do our best and, as you say Simon, listen to our bodies.
I am averse to doing repetitive exercises because if one is trying to lead a normal life, then one repeats things constantly anyway…we have so much to learn but it is important to be positive and make the best of what we can do rather than moaning about what we can’t. Onward and upward! Ana
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i had pressure in head stroke last may. still have
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Oh don’t give up. I have most of the symptoms to some degree, the coughing one is very trying, twill get better. I swear my beloved “D” thinks that I cough on purpose. I regard my stroke as the enemy and every little (and they are little) advance as a triumph. Forgive your daughter tis very difficult for non strokers to understand at times but bear in mind that they are really anxious for you to improve. Russ
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So sorry that you and your family are going through such an awful time. I truly hope things improve for you all. Xx ps it’s difficult but you have to concentrate on your recovery and not your Dad. Hopefully, in time, you will find out why he’s been so awful.
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A year on since I started this thread.
Thank you all who posted advice and wished me well.
It’s now 2 years since the stroke (21/06/22)
During those 2 years. My in-laws have died, Our cat has died and my dad has basically disowned me for no reason.
So not the greatest 2 years of my life! 
But I’m still here. My wife still has her husband and my daughters still have their Dad 
I’ve also been struggling the last few months with eczema. How does a 49 year old bloke get bloody eczema?! I’ve been mis diagnosed 3 times and was told it was a fungal infection twice before finally getting told it’s excema and given steroid cream . Still not cleared up now some 4 months since it appeared. Set me back quite a bit especially as the stroke pain intensified the pain on my affected left side. The stroke pain is about as good as it’s ever going get. Thanks to high levels of pregabalin and amytrypytoline I know it will never disappear completely
I’m now kind of back driving but only with my wife in the car with me at the moment . I’m hoping to be driving independently in the coming weeks. Apart from the occasional stall it’s coming back to me and confidence is growing . I’ve just got be a bit more patient and take on board the advice my wife is giving me. Bit strange as i used to really enjoy driving but I’m having to concentrate so much I’m not even aware of the music my wife has put on!
Thanks all
Wayne in Stoke
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Hi Wayne, it’s certainly been an eventful 2 years for you. My hubby developed eczema later in life too. He has phases where it is ok then it’ll flare up again.
Good news on the driving front. Your confidence will return i am sure. It does seem to take a whole new skillset post stroke.
Here’s to the next 12 months bringing more progress.
Best wishes
Ann
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Thank you for that
Yes it certainly is strange. I’m having to really listen to my wife for a change I’ve been driving for 30 years and my wife for 5 years. One positive is she’s become a much more confident driver, especially as she had a serious accident 3 years ago but its like she’s become my driving instructor the last few weeks
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