Stroke and Dementia

I had a stroke over 20 years ago. It was a haemorrhage rather than a clot and left me unable to speak or have any awareness of my right side. With intensive nursing I recovered remarkably, each day over many weeks showing improvement. From the very start I was confident I’d be ok. Eventually I recovered enough to return to work but couldn’t sustain it and took early retirement. Since then I’ve had brief (24-48 hour) episodes of losing use of my right side coupled with emotional changes - sometimes crying, often anger. Neurologists have tried and failed to remedy the situation with some medications making things worse. I’m now discharged as there’s nothing more they can suggest. I’m having an episode today which prompted me to reach out in this forum as a bit of self help. My greatest concern that I feel I might be showing signs of dementia. Not memory loss but confusion and needing to really concentrate on simple tasks. I can easily cope with the occasional episodes but worry that I’m on a slippery slope. I don’t think there’s anything can be done but appreciate the opportunity to share my fears. Thankyou.

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I’d give you a hug if I could. Not sure of your age but I can imagine you’re very concerned that you have the start of dementia. You need to get checked out and, hopefully, doctors can reassure you. I def have good and bad days following my stroke but have come to the conclusion that rest is best. We try and carry on as normal but should accept we have to be kind to our brain by resting. Overdoing it and stressing are other things to avoid if you can.

Hope this helps.

Sending very best wishes.

Cynthia

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Thankyou Cynthia. Your virtual hug and advice gratefully received.

Peter

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Shwmae Peter, sorry to hear you are going through some troubling times. If it is a slippery slope you feel, perhaps you might start thinking of some grounding activities you can turn to, in order to settle and balance your mind. Sometimes, the more selfish the distraction, the better it is for us. Dementia is a result of a condition, so I can’t comment on that as I have limited medical knowledge but I do know that using parts of the brain associated with freer activities such as those that might be considered unrestrained and creative can massage tension from other parts of the brain that provide a more logical and practical performance.

Post stroke, I suffered from a few angry outbursts, in hindsight, I realised that much of this was my frustration at the way the rest of the world, in my eyes, worked. I didn’t feel I fitted in with my brain injury, and so had to shake the tree a little bit. That’s a Charlie Chaplin reference, he’d conceive an amount of gags, and then proceed to shake the tree until he was left with the best gags. I removed myself from activities and processes that irked me, or affected me negatively. I filled those spaces with activities that brought me pleasure. I guess, the flight or fight reaction also exists with things in life we don’t quite like.

Not sure if anything I have written may be helpful to you. I am having a wonky day, so my brain is blunt.

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Glad you reached out to this brilliant group you do need to speak to a professional just to put your mind at rest I also gave up work before I needed to as they wanted me back on my old job I had all the emotions anger sadness feeling a failure and am working through it and am glad now I also went through bad memory which was worrying but came through that thanks to support from the wonderful people on here I am now getting the odd lapse in memory again which frightens me but you may need a scan just to put your mind at rest everyone is here for you keep us updated x

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Thankyou for sharing

Peter

Thankyou for responding. All the replies are very helpful but you’ll appreciate it’s not always easy to take even the best advice when you’re feeling low. I’ll rest until things improve then read them again. For now, just Thankyou. Peter

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Hi Peter @Pedro001 I agree with others in that you should seek advice from medical professionals. It may be they can put your mind at rest a bit.

This is a great place for reaching out so please pop by when you need or want to.

Take care.

Ann

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Hello @Pedro001

Welcome to the forum You will find folks here who have a lot of perspectives on stuff in the stroke domain. How much actual knowledge of dementia I’m not so sure also.

After my stroke I took part in a dementia study that ministered some drug and I can’t remember the name of but the research was led by Joanna wardlaw at Edinburgh university and you can find the paper online they show that a low dose of some drug which is used commonly in Europe may be effective

I guess you need a GP to start the referral process to a neuro something who could then start a suggesting if you have early signs what avenues are available

Best wishes on your journey

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Thankyou Simon. Much appreciated. Peter

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Dear Pedro,

I am so sorry that you are facing such worries. We’re with you here. You can say and post whatever is on your heart. If you are feeling negative, please post it; in fact, we want you to. Post-stroke life is unbearable at times.

I understand fully why you are concerned about dementia. Do remember, though, that strokes are only linked to vascular dementia – not other kinds of dementia. I am almost sure about this, but I still could be wrong. And, no, memory loss is not usually seen with vascular dementia like you see with Alzheimers from the get-go. The memory loss comes in very advanced stages of the disease… But the good news is, is that vascular dementia can really be slowed down with certain medications, I believe, and even reversed a little in some cases. This is because vascular dementia is caused by physical issues with the blood vessels in your brain. Other forms of dementia are even harder to treat.

My dear mother lost her mind several months after her stroke (post-stroke regression). We thought she had vascular dementia, but they said she didn’t. It was just the effects of the stroke + PTSD. Who knows really? My mother sadly died from sepsis 2 years after her stroke. Again, she lost her mind over time, and it is still hard for me to accept.

Again, my suggestion to you is to have a brain scan, etc. If I am not mistaken, this is how they can identify vascular dementia. I don’t know about Alzheimer’s, or other kinds of dementia.

Sometimes people experience post-stroke regression many years after a stroke. We were told about this. My mother started to regress around 5 or 6 months after her stroke, but she made a remarkable physical recovery (walked liked a normal person with great speech, memory, balance, reflexes and use of her affected arm and hand). But, sadly, her emotional/rational mind never recovered, even though she could be very sharp-minded at times

One more thing: my mother had a brain bleed like you. And, like you, some medications made her mind worse (anti-depressants). Anti-psychotic drugs also had little effect, and almost numbed her. We all just gave up at some point with medicines.

Again, I am deeply sorry. I wish I had the answers for you. Strokes are complex, and continue to affect survivors for the rest of their lives. But don’t give up. Things might not be as bad as you think. Whatever the case, we’re with you on here. I went through hell with my mother, so I understand what strokes are all about. We just have to march forward somehow.

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Hi Peter, I just wanted to welcome you to forum and hope you find some solace in the advice you’ve given.

I think many stroke survivors have such concerns about dementia following their stroke. I too have my concerns as Alzheimer’s runs in my family. But I shove those concerns to the back of the cupboard in my mind 'til such time as I need to more seriously address it…there’s not really a whole lot I can do about it anyway. So I stay as fit and healthy as I know how and every time those worrisome thoughts rear up, I just mentally slam the door on them again. Distraction is the key! If it’s something you can do absolutely nothing about anyway, then find things to distract yourself from those thoughts.

It might help to talk to your GP about your concerns, if only to alleviate your concerns. Your GP can refer you to the memory clinic where you can be tested for this. But with old age comes comes memory issues anyway, it does deteriorate naturally. It’s never going to be as sharp as it was 50yrs ago or 20yrs ago or even 10yrs and that’s just fact of life. We’re getting old! Our bodies do burn out! You can let such drag you down or do as I do and refuse to worry about them…I could be hit by a bus or struck down by lightening in the meantime. Que sera sera!

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My guess is the Neuro’s have already looked for signs of dementia, but I wasn’t there so don’t know. My memory for past things is good. It has only been two years, as opposed to 20 but I still have to make my mouth tell my brain how to do the simplest things, such as make a phone call, brush my teeth, take my medicines, how to tell time on an analog clock, and I get annoyed, angry or cry for apparently no reason. The tears are when I don’t even feel sad…more anxious, overwhelmed, or frustrated than sad. The tears aren’t depression, which makes me more apathetic than angry or tearful. I suspect this is an emotional change in me that might be here to stay, and I must learn to keep it in check. I also have trouble with being impulsive and disorganized, which is completely opposite to who I was before stroke. As others have mentioned, I would still ask every doctor I see about it, using the best words you can to describe what is going on and what isn’t. long term vs. short term memory, cognitive functions, emotions, mental processes… I have the most trouble with executive functions…remembering to pay bills on time, organizing a schedule, communicating in a linear fashion, instead taking a story all over the place. Staying on task is very hard as well as I am very easily distracted by noise, movement, lights, another thought, a pet, or an ad for shopping online! I wish you only the best. No matter what is going on, stress can only make it worse. Do what you need to keep that at bay. I find being on this particular forum the most helpful to me in that way. Most especially at Zoom gatherings. Probably because one of the best medicines for Brain health is using it for tasks, as well as to communicate with others. I hope you will join us for one soon.

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Thankyou for your insight. Much of what you say rings true for me. I suspect just living with it and making the most of all the good things in my life is the way forward.

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Hi @Pedro001
Sorry to hear about your frustrations etc., but you have some pretty knowledgeable people on here who will always give you the support you need based on their own experiences. I for one didn’t know about my stroke for many years, but with the frustrations of forgetting things and headaches, fog etc., I always find that keeping my mind busy helps. I’ve been a writer for many years and find that in times of frustration and uncertainty, I start writing a story and this can be about anything, but I make sure to write a good 500 - 1000 words and by the time I’ve done this, the black clouds have lifted. It’s a great therapy and works for me, we can all add things on here to say what works for us and some of them might help you too. Welcome to our group! Take care, Bert

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Thankyou Bert. Sound advice from you and everyone who has taken the trouble to respond. Thankyou all. I’m now recovered from my last episode. Just feeling tired with headache but much, much better. Hopefully research will eventually lead to cures and future generations won’t need to find coping techniques.

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Pedro , Like others on here have suggested , Go see your GP and get a scan/MRi or what ever it takes to statisfy your mind one way or the other . I try and put the thought of dementia to the back of my mind . ! You are not alone . Most folk on here have high emotional days (Yes crying for ??? ) anger, frustration and lapses in memory that soemtimes you just cannot put your finger on it as to why. The distraction tools given by the stroke psychologist do not always work . Maybe a revisit to a stroke psychologist may help ? I do believe that your GP can help, if there isn’t already one in person at your surgery .

Sending hugs

Sandy

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Thankyou Sandy. I appreciate the advice . Pedro

Hello, I had a haemorrhage stroke myself in July 2017, I struggle with my concentration and my memory and I guess we are not alone, take care John

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Concentration…what’s that? Just kidding. Now what was I trying to say?

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