One year update post stroke

It’s been just over a year now since I had a stroke, and wrote this post to introduce myself to the forum.

Looking back, I find it almost incredulous that I survived about six TIAs and a major stroke without any medical intervention. It wasn’t until the late evening of the next day, a stroke was diagnosed. I wonder sometimes how people coped before surgical and medical science could intervene or provide post-stroke care. Apart from being on anti-platelet meds and statins, I guess I would have been one of those people, having survived a stroke, and then just getting on with things as best as humanly possible. Although, I wouldn’t have had the creature comforts which make life easier, and my condition might have been attributed to displeasing the gods.

So, I wanted to post a little timeline of recovery. I was drafting up another text for this, but it began to form into a screed, so I thought to re-write afresh with a bit more brevity for ease of reading, combining initial symptoms with outcomes a year later. Put the kettle on if you are planning on reading this.

I had a multifocal, bilateral cerebellar infarction. A double-sided, multiple injury to the little brain at the age of forty-four, September 2020.

The early months consisted of a vigorous determination to get better by summer. I continued working, teaching and writing, despite being bogged down with symptoms. I was in a haze at this time, moving around my home as if I were being flipped and bumped in a pinball machine. I didn’t have time to ruminate on my condition but I was absorbed with researching a potential cause for the stroke. Symptoms fluctuated from almost none at all to very intense. Cerebellar stroke seems to have this pattern of relapse, and neurologists don’t know why. Getting better by summer was too ambitious, in reality, improvements happened over twelve months in 1-2% increments, on occasion I’d make a 10% improvement, and looking back, these all add up, but are hard to spot at the time.

So, here goes …

I had to hold onto something, and count to three before putting on socks and trousers. Now, I can get dressed with ease. Getting dressed properly was my first milestone.

I shuffled everywhere. I had hypometria, and under-stepped when walking. I moved ploddingly from room-to-room. A ten metre walk was like climbing Mount Snowdon. Strangely, I had no problems riding a bicycle, and was back on my bike soon after the stroke, but as soon as I alighted, I wobbled and shuffled back to the house. A year later, my walking has returned to its usual form, although if I am fatigued, anxious or my symptoms are acute, I tend to under-step a bit. Although, as I have always been someone who moves briskly, my brain is struggling to catch up with the new pace, and I get regular bouts of giddiness and nausea. Moving is still exhausting, but I feel a little more confident with doing it. So much so, I can go for a two-hour forage in the woods, regularly, with company, and feel great but knackered afterwards. Early on, I got a new Berkshire gilt for my sty to join my other two pigs, looking after these animals really helped me with getting moving, as come rain or shine, they need to be fed and mucked out. I practiced counting while I walked with proper steps (I did this for about four months). I then changed to doing crawling exercises, and walking on my knees everyday. Learning to crawl before I could walk properly again was novel but helped immensely. My partner and son thought I was nuts. Now that the shuffle has gone, I have abandoned my cane and only use it for aesthetic purposes because I rather like it and, before the stroke, I used to make walking sticks, so it wasn’t a big leap when I had to adopt a cane for getting about. I also practiced twirling it over several months as a means of coordinating the fingers of my right hand. I can now twirl the cane quite well with both hands but still a little clumsy with the right.

Making the bed was taxing, like putting a puzzle together. It exhausted me physically and mentally. I had to allocate bed making as part of my weekly schedule. Now, making the bed is a no brainer.

It took me a couple of weeks out of hospital before I tackled having a shower. My first shower was like completing an obstacle course. I needed to hang on to the rim of the shower door with the constant threat of slipping. Now, showers are pleasurable, and I can take one anytime I feel like it, even if my symptoms are acute. I’ve even started having baths again, I only ever had baths before the stroke, so this is an added luxury to my life again. I don’t need to hold onto anything now, but will on occasion if the floor surface is particularly slippery.

I read vigorously while in hospital, and continued after discharge. I got through a five hundred page biography, reading several chapters a night. I’m glad I did this, I’ve always been a keen lover of books, and I wasn’t going to let a stroke take that away from me. No matter how bad my symptoms are now, I can always turn to a book. I’ve trained my brain to keep that ability as a stopgap. As a result I can read for fairly long periods of time quite happily. At first I had trouble summarising paragraphs, but with practice I can follow the story as a whole with ease, and recently discovered even books written in Elizabethan English are not a problem.

I had frequent insomnia. I couldn’t get comfortable in bed, the pillow felt like a stack of magazines, and I had cramps every night. My head was swooshing, and felt tight like an invisible internal pressure was clamping it. The cramps were the first to go which was great. The swooshing fuzziness in my head turned out to be tinnitus. I thought tinnitus was a ringing sound, so I didn’t make the connection. I ignorantly thought it was my brain repairing itself. I still have tinnitus, it is more pronounced when I wake up, and before going to bed. My pillow now, on the most part, feels like a regular pillow. I still get insomnia but not to the point of it being 3-4 am. I listen to ambient sci-fi drone and drift music on headband headphones, and every night, I have a few make-believe narratives I play out in my mind to help me drift off. These narratives always do the trick, but it takes me a bit of time to reach the point when I feel settled enough to start them. I have also developed a hypnic jerk which usually occurs in my leg, but I’ve felt it elsewhere, it amuses me more than anything else, as the sensation is startling but kind of ticklish.

I occasionally had nausea, but a year on the nausea is probably worse than it was at the beginning. I suspect this is a kind of motion sickness, and also has something to do with the neurones in the gut, as they communicate with the neurones in the brain. I probably need to find a diet that can help with this more than anything else. The brain uses a whopping twenty percent of the body’s energy and nutrients, that’s probably why I am so lithe, I’m constantly thinking, researching, examining, pondering et cetera. :laughing: I have always had quite a diverse diet, but I am making an effort to diversify even more, even if that means preparing a separate meal than what my family are eating.

Standing still was painful, I often got wobbly and shaky standing in one spot. Then, if I moved, I’d get to a point where I thought my legs were going to seize up, and my nervous system was going to shut down. This has reduced significantly over time, and I’m much better with standing still now, although when cooking I use a stool to sit on if I need to hover over a dish or chop foodstuff. Instinctively, I hold onto a surface even though I don’t have to.

Anxiety was fairly rife. I had previously suffered from panic attacks before my stroke, and had dealt with them for the past twenty years. I was hoping the panics might vanish as a result of my brain injury but, alas, they didn’t. By March, I had opted to take anti-anxiety meds (SSRI), and was out of action for about six weeks while my system became accustomed to them. These kind of meds aren’t for everyone, but for me they pretty much did the trick, and I had a lot more resilience to anxiety and panic which I needed at that time, so I could concentrate on rehabilitation rather than concentrating on rehabilitating the anxiety. Besides, SSRI’s enhances neurogenesis in the hippocampus, so encourages improved memory function. Due to my memory problems, this surely can only help. My anxiety could get so bad that I would experience, sweating, clammy feet, and light-headedness. I recognised these were also most prevalent during days of internalisation, when my thoughts were speaking aloud inside my head. The theories behind mindfulness help, and for me it’s Tai chi which is meditative and tactile, music, keeping my mind occupied, learning new things, and keeping my sense of humour at the ready, are key.

Brain fog and confusion clouded me every day until about some time in the ninth month, it lifted. It was a very distinct feeling. It was wonderful. I could concentrate and focus again on things with clarity. It happened over a week of having one of the larger ten percent improvements, but I remember having had a fairly vile week before it corrected itself. It has been one of the greatest gifts of recovery because I can concentrate on my other symptoms now.

For the first three months or so, I had difficulty focussing on what people were saying, and it took me great effort to get my words out. I made sure I practiced speaking with people. I was still teaching, attending stroke-survivor Zoom meetings twice a week, and forcing myself to be in company. I put an Alexa in my bedroom and study, so I had an algorithm to talk to and by about the fifth month I came to grips again with talking and, if anything, I wasn’t able to shut-up. Following a conversation now is not a problem, but sometimes I close my eyes when I do so because visual stimulus tires me out and distracts my mind too much. I do this at dinner functions where there are more people. I also put my feet up on another chair while I listen, is that rude? I don’t care, I’ve had a stroke. A close friend always jibes at me at the dinner table, “wake up”.

Odd sensations cropped up all the while early on in recovery. On occasion I get a striking pain at the side of my eyes. When this first happened I was concerned, but speaking to other cerebellar stroke survivors, it seems to be quite common. It still happens now and then, I suspect it’s something to do with the oculomotor muscles, and misfiring neurones. My point of view with these odd physical feelings is that they are nothing like what I experienced when having the stroke or the TIAs, so most likely they are blips concerning the central nervous system. Let’s face it, body and mind are no longer a well oiled machine, and mental and physical hiccups are expected along the way of getting up and running again. These physical oddities are are a doddle to deal with compared to what I went through having TIAs and a stroke, so I am more curious about them than worried.

I do want to mention dyspnoea, even though I have written extensively on it here. The statins I were taking were causing nerve pain in my left leg. After joining another forum at the Heart Association purely devoted to Atorvastatin, the most common complaint people seemed to have was breathlessness. I stopped taking that statin, and the nerve pain went away, the dyspnoea subsided. I still had dyspnoea but it was more manageable, leading me to think that the statin may have exacerbated this. I switched statins on the advice of my GP, after a while the nerve pain has returned, intermittently, but not as acute, and I can live with it. The dyspnoea is still there, but not as regular, so at the moment I am monitoring things, and adjusting my diet, so that next time I have a general check-up, I can determine whether or not my cholesterol levels are low enough for me to stop statins completely. I didn’t have high cholesterol, but my GP said it was high enough to warrant the precaution of taking a statin. Statins can cause muscle weakness and it makes sense that it may weaken the respiratory muscle, when I lie on my right side (my right side is the most affected by stroke), it takes more effort for me to draw in a full breath. This may be because I am putting all the weight on my right lung. On my left side, I breathe more freely.

Headaches, before having the stroke I had never experienced a headache. I have heard of stroke-survivors who once experienced headaches to have rid themselves of this after their stroke. For me, after the stroke, I have experienced very mild headaches, and they have been rare. Thankfully, this has not plagued me as a symptom. If I do get a mild headache, paracetamol deals with it within the hour. I still don’t know if it is a headache because I never had them before my stroke, and so it could even be just fatigue. I must make a quip though, sometimes I tell people around me I have a headache when it is actually my stroke symptoms that are causing me to feel rotten. I have found people are much more empathetic to the symptoms of a headache than to the complex symptoms of stroke, and so it saves me a lot of extraneous explanation that often falls on deaf ears. Shhh though, this is only to be known between me and the stroke forum. :wink:

I must mention fatigue and residual symptoms. I’ve always been a sort of idle-minded chap (some people call me a world weary sort of fellow), I’m physically active, but never rushed or officious, but I am an over-thinker with a persistently ticking-over mind. I have experienced mental weariness before the stroke, and mental exhaustion now is not something I find particularly challenging, however, it’s the acuteness of my symptoms that drain me. I used to take time out before the stroke, so I’ve kept to the same routine but with more frequency. My eyes get tired and blurry, my vision can’t judge distances as I have stereopsis, and so looking around while moving makes me giddy and my head swims. I have trouble focussing my eyes and tracking objects, and my vestibular system can’t quite calibrate itself. My balance is good, my coordination is good, but I experience a disorientation that comes from within, and then affects how I move and what I see. This leads to giddiness and nausea. I get this sitting down, lying down, standing up, and moving. Oddly, at night, in the wee hours when the house is dark, I can move around more comfortably, so I suspect there’s also an issue with how my cerebellum is transmitting to my photoreceptors.

Finally, how do I feel about all this? I have a dry and acerbic wit (perhaps, conditioned by the amount of Russian authors I read as a child), and after the shock of being told I had a stroke, my immediate follow-up thought was, “just typical”. My cousin messaged me soon after, writing, “you always have to be the first”. I chuckled at that. That’s the way I deal with tragedy. I haven’t experienced lament or regular anger but I did have one angry outburst at family and friends. I think this stemmed from having at the time dropped the anti-anxiety meds down by 10mg (since have rectified this), and was at the time under a lot of pressure from a busy period, with people being either indifferent to my condition or impudent. As an example, I had been allocated the task of cleaning the pool and covering it for winter. Moving the net through the water made me feel sick, and I let people know this. I had attempted to tackle it one day but the feeling made me so nauseous, I had to stop. Later on that week, I did it, and despite feeling extremely ill, and needing to lie down afterwards, managed to complete the task, albeit, needing to rest the entire next day. While I was doing it for the second time, an external family member came outside and saw me, she said, “You’re finally doing it, you’ve been asked to do that all week.” Well, normally, water off a duck’s back and all that. During that time, these kind of remarks were coming at me left, right, and centre. I guess, I finally just had had enough, because I was trying to be inclusive and participatory as part of moving forward with my recovery, instead of sequestering in my safe space. How unprepared I was to rejoin the hustle and bustle of regular family life. So, anger came out, whereas it hadn’t been apparent at any time up until that point. I have addressed that now, and feel back on track with being able to cope with other people’s nescience.

I see this as another chapter of my life, and a challenge. I am deeply curious about my condition, and want to help others who are experiencing similar. I think the feeling I get week-to-week is wretched, but it’s not the end yet, and there are so many splendid things in life that are too addictive to ignore. It has been challenging adjusting to having a disability when I thought myself so robust, and almost prided myself in that, but although I am now eating humble pie, it has taught me how wonderfully delicate and complex living organisms are, and my survival instinct is intact.

As a writer, most of what I experience through life is grist to the mill, so I channel my angst and affliction creatively. Having said that, I’m still quite neurotic and fidgety of mind, so I suspect that much of the sluggardliness of my recovery is psychological. I still have a bit of an issue with writing because the right side of my cerebellum was also injured. This mainly has to do with missing words, muddling up consonants in single words, and using past tense. I am training my brain to fix these issues by using spelling apps, language apps, and memorising sentences in my mind, reviewing them and repeating. I also edit anything I’ve written whether it is a short message or email, making sure I pay attention to the mistakes I am making, and correcting them appropriately. This takes a lot of time, and can be quite boring, but it will be worth it in the end.

I have not stopped daily exercising my mind and body, apart from when I recognise the benefit of rest. The key is not to push one’s brain too hard, otherwise it can’t do a full repair. The analogy of an injured wrist, I will use here. If you injure your wrist, not straining it will give it a chance to repair properly. Gentle exercises and movement will not exacerbate the problem. If you continue to strain it by overdoing its use, it will take longer to repair, and there will also be the risk of having an injury that never fully recovered.

The second year of my recovery will be all about building on what I have already achieved, and taking it slowly, no doubt I will face future challenges, but I feel I have done the groundwork. I hope that some of this overview will help stroke survivors who are more recent in their recovery put some of their future goals into perspective, and provide a little hope.

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Rups, a very interesting account and well done for making such a good recovery. Like you, I quite like to analyse my condition, but, being older, I doubt I will get to 100% recvery.I am an ex teacher and long retired. I can read a little, but years ago I could read books by the score. Not now. However, I have macular degeneration and whilst my eyesight remains reasonable, the concentration is not there.

My stroke happened on holiday. I remember falling over in the hotel corridor and somehow getting helps, but after that I have no memory of being in Exeter A&E, but can remember arriving at Derriford Hospital, Plymouth. After a few days I was brought home to Worcester Royal and then transferred to a rehab ward in Bromsgrove. Then the hard work of recovery began.

I never dwell on the circumstances of my stroke, because that is pointless. I do keep as active as possible and attend three exercise classes for seniors each week. I did attend an exercise class solely for stroke survivors, but found it repetitive and without challenge. It was a bit like being stereotyped as ‘limited’ and I found that unacceptable.

Lockdown,of course, has not helped. A lot of support systems vanished or became limited in availability. That said,it is up to each of us to find a way forward. Thank you for sharing your experiences.

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Hi Rups @Rups thanks for the motivational account of your post stroke journey to date, you have made progress and appear to be determined to keep moving forward with your rehabilitation and I’m wishing you all the very best. Stay strong and keep up all the good work you are doing for yourself :+1:

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Thanks John (@John_Jeff_Maynard), I suspect I’ll never reach 100%, I don’t think any of us really do. The trauma in itself prevents that happening, even with the youngest survivor. I enjoy audiobooks and podcasts too, so story-telling is always accessible. Story-telling in its original format, so to speak. I am still intrigued to what caused my stroke, not just as an incentive as a preventive measure but to put some things in context. I have suspicions to what may have caused it, and have discussed this with doctors, but although possible, nothing has been confirmed. Although, I don’t ruminate on it, and there’s nothing in life I need to avoid, but perhaps I should not attempt to lift anything heavy.

I agree with you about ‘limited’ exercises for stroke-survivors, there’s a big difference between over-doing something, and something being challenging enough to make a difference. I’m pleased that you sought an alternative. Lockdown has wiped us clean of many support services, hopefully, these will be reinstated, and there will be further improvements in after-stroke care.

I hope you are doing well, John, I always like reading your posts and comments.

Thanks @Mahoney, I’m not sure how many of my nine lives I have lived, but I am sure I have a few left. It hasn’t been a pleasant journey by any stretch, and continues to have its sore points. I made sure I wrote this over a period of time when I was feeling rotten and when I was feeling good, to lessen the bias toward any one feeling. I hope you are having a reasonably pleasant weekend despite any over-hanging symptoms that might be getting in the way.

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Lovely to read Rups, did so enjoy it and everything you stated is so true.
Thanks for sharing. Jane.

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Thanks Jane (@jane.cobley), really good to hear from you, I hope you are well. Have you been posting recently? I look forward to an update on how you’re doing. :grinning: I’d taken a break from the forum as part of getting away from tech for a bit.