Vision therapy

One of my greatest hurdles has been rehabilitation for the following:

  • Oculomotor dysfunction
  • Proprioceptive impairment

The damage to my cerebellum has resulted in my brain having issues with communicating with my eyes and limbs. My eyes are in good health, as are my limbs, but it is my brain that can’t quite coordinate and fixate effectively with my eyes, and how I move. The cerebellum has a direct relationship with the CNS and the vestibular system, so these issues might be more pronounced with cerebellar stroke syndrome, but because the entire brain chips in together, these problems will also be found with other types of stroke.

I don’t get dizzy, but I can get giddy. Dizziness is something else for me, it’s the room spinning, what I experience is a sort of disorientation or detachment from the physical objects in one particular space. So, patterns, or clutter, or visual noise disturbs my movement and visual control - and this leads to fatigue.

I have trouble tracking objects (control when moving/looking from spot to spot with accuracy), visual-vestibular integration (so movement and seeing at the same time), visual processing (so viewing my environment effortlessly). I also have nystagmus and occasional blurred vision. The proprioception issues arise from the oculomotor dysfunction, not so much balance, but more to do with movement. I can feel wobbly, sitting with my eyes closed. The best way I can describe how I navigate around is like being in the dark with the lights on, or like moving underwater and able to see clearly.

I have been desperately researching rehabilitation for this, and have been practising exercises everyday, but there is so little literature or rehabilitation for these problems after stroke, that I have had to go to other conditions in order to see what they do, and then apply them to me. Anyway, I wanted to start a thread for people who have these kind of oculomotor problems, so that we can collectively figure out exercises and rehabilitation that is effective. There are a lot of misleading exercises for brain-eye communication that only serve to exercise the eye muscle, and that does not improve vision.

So, if you have vision and movement deficiencies like the ones I have mentioned above, please feel free to comment here about them. This will help others who have recently had a stroke get back on track sooner rather than later. I have spent a year doing the wrong kind of exercises, but I know that doesn’t matter, because I can still rectify the situation, it is just going to be harder and take me more time.

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Update on vision therapy: I have been working around the clock to rehabilitate what is for me quite a debilitating oculomotor dysfunction. Once I work out completely what is effective, I plan on writing a lengthy post about it on my blog. For now, I continue to research in order to get to the bottom of things. I have made leaps and bounds in identifying the specifics of my condition, there is so little literature out there in respect to what physiotherapy is required for my symptoms. I have now come across other cerebellar stroke survivors with the same symptoms as myself, and know that there is a wider community of stroke survivors who would benefit from my research. So, here goes, this is an update on what I have uncovered, and the exercises I am doing to correct the condition known as cerebellar stroke syndrome. As a caveat, I am no medical expert but am stabbing in the dark like everyone else, and I could be barking up the wrong tree. However, I can know what has been working for me, and hope I’m on the right track. My understanding stems purely from cerebellar stroke, other stroke may have different causes for visual and balance problems.

At first I thought I had a proprioceptive impairment, which generally speaking is true, but it goes much more deeper than that and is far more complex. I worked out I have an oculomotor dysfunction, which also is true but, as above, goes much more deeper than that, and is far more complex. I will try not to make this too technical, as there is a lot more to this condition than my summary in brief.

The issue lies in what they call the vestibulo-ocular system, this system is a very complex visual-balance and coordination reflex affected when the cerebellum is damaged. It’s complex because it requires so many functions in order to do the most simplest of tasks.

For instance, sitting on the side of the bed and putting on a pair of socks may seem like an effortless activity but the eyes must operate vertically and horizontally, they must track the hand to the socks, they must adjust to the lighting, all the while the body must balance upright, the socks must be coordinated onto the feet, the eyes will track the feet entry into the socks (perhaps noticing other things in the space while doing the task), the body must balance while the leg is lifted, all the while the eyes are adjusting focus from the feet being on the floor to being lifted, as well as the foreground movement of the hand with the socks. When you think about it, the brain must account for accuracy, it has to factor in any latency, it must follow multiple trajectories, and time speed and acceleration of saccades (eye movements) in order to coordinate a movement.

Normally, the cerebellum makes sense of all this movement and sight. It will organise visual noise so that the eyes can focus only on what it needs to focus on. It will calibrate movement of the body and the eyes so that this function can be plain sailing. This region is called the vestibulocerebellum. When there is damage, the cerebellum can’t do this without difficulty. Usually, the eyes and the vestibular system are working perfectly, it’s the cerebellum that isn’t able to synchronise.

Okay, take a breather, there’s more. Nystagmus and blurred vision are two symptoms that can be a result of brain injury. Medical professionals don’t really know why nystagmus occurs but it does, even without brain injury. There are different sorts of nystagmus which makes it difficult to assess just what issues may result unless one has a thorough eye test (via the Optometry Department at the hospital)

So, this is why giddiness occurs. I make the distinction between giddiness and dizziness. For me, dizziness is the room spinning and relates to vertigo. Giddiness is a sensation of whirling that comes from within the body. Initially, I was given ‘gaze stabilisation’ exercises to do but this kind of exercise benefits vertigo, and in my experience, not giddiness. I then moved to doing eye exercises like pencil push-ups &c. While these are good, because they concentrate on focal points, they are limited as they only pay attention to oculomotor functions. I then moved onto ‘visual tracking exercises’ which are also beneficial but are passive, i.e. there is no movement of the body involved. So, recently I have begun what they call auditory biofeedback in combination with movement, visual and focal tracking.

Auditory biofeedback is a way of commandeering the body through an outward-looking voice, essentially talking to oneself. It’s been proven to ease nystagmus, and so I have adopted it as part of my exercise routine. I will write more about the practical side of this at another time, save to say, I have identified that the up/down movement of my head is causing the most giddiness. Every person will be different, and I will write something clearer as to what I have been doing to improve my situation. Logically, this impairment can improve naturally, as we have to move and see in our every day activities, but the benefit of controlled exercises enables the brain to work on one problem at a time, resolve it, and then move onto the next. The natural rectification of this would take a long time if left to its own devices because every millisecond of the day, movement and sight changes, and it means the brain doesn’t get time to use repetition in order to put into place a result. This is why impairments can drag on for many, many years as opposed to a few years. As I mentioned at the start, everyone is different, so an individual’s circumstance may prolong something even if controlled exercises are applied.

Hi Rups - I have made an account on behalf of my father who suffered a severe cerebellar stroke over two weeks ago. He cannot swallow, has lost control of his left side and suffers from severe dizziness on the slightest movements (although could be giddiness as you describe).

There doesn’t seem to be any care plan at hospital right now save to see what happens and to keep him alive via an NG tube.

As a family member I’m at a loss at what to do and desperate to help. Would you be able to point me in the right direction of things to be asking his care team / how to start proper focussed rehab? Thank you

Hi and welcome to the forum @HiSi, sorry to hear about your father, hopefully he’ll make progress over the upcoming weeks and months.

Best wishes

Shwmae @HiSi, sorry to hear your dad has had this experience. Assuming, he has not gone private which means he’s at the disposal of the NHS, which may mean a dearth of experienced care or an abundance of it, depending on which side of the lottery postcode ones resides. Cerebellar stroke has twice the mortality as other strokes (apart from brain stem), this is not something to panic about but at the moment I imagine they are concentrating, as you say, to keep him going. The reason for the high mortality rate is because it is so near the brain stem, and vital functions can be affected. Especially, swallowing, breathing, and heart function. However, when ready there are things to be focussing on.

Rehab for cerebellar stroke is problematic because there isn’t a lot of research into the neurological complications associated with this kind of stroke and, therefore, not a lot of guidance ahead with the symptoms. What worked for me, as every stroke will be different, was practicing reading in hospital. It sounds dull but I am glad I did because many cerebellar stroke survivors struggle with this afterwards due to the focussing of letters on a page and reading them in sequence, but also problems associated with patterns. Reading at first was difficult but I did it anyway, and it is the most benign form of physio one can do without needing to actually move. Well, I say that, but giddiness associated with cerebellar stroke can make any slight head movement painful.

Determine his weak areas, looking up, looking down, left side, right side. The movement that causes the most amount of giddiness is the movement that needs working on using visual-tracking exercises. The can be done in bed, pencil pushups, focussing near and far, et cetera. Also, I found that just passive exercises like this are not really pushing the brain forward, there should be some head movement involved and if possible, walking. Following lines around a room, looking at moving objects. For me, this took a year to get to a comfortable level of functionality, it may take your father less. Some cerebellar stroke survivors got going again after six months or so. It also depends on how stoic he is. I have never been a particularly stoic person, so I really struggle with giddiness, and don’t like it at all. I tend to crumble easily if things get too much. I also have some neurosis and can obsess with worry, so we all have our burdens. This makes recovery quite different for each individual, depending on their personal needs.

As for control of his left side, regular stroke rehabilitation would be beneficial, such as not using his good side, and forcing him to use his weakened side. Some rehab centres have their patients put one arm in a sling to enforce this. His left side is probably fine, but the brain isn’t getting the signals through to it. As long as there is spasticity in that side, faint signals are being made.

Your father is in the very early stages of recovery, at the moment, just the shock of the stroke is going to blur the lines of where to go from here. His brain is doing its own repair work now, so plenty of rest to allow it to do that. I had six TIAs and one stroke, my method was working out my symptoms or the weak spots in my functionality, and then redressing those problems. I have done this one by one until satisfied I can bring myself together as some sort of satisfactory whole. Then, I begin again, working on each symptom one by one. It’s just the way I work.

Please type in cerebellar or cerebellum in the search bar, and hopefully some of my older posts may pop up with further info on managing this syndrome. Keep in touch, if you have anything you want ask specifically, you are welcome to message me. I am only too happy to share my rustic wisdom.

One matter of my splitting hairs with the terms dizzy and giddy, I do this because I was misdiagnosed with BPPV (vertigo), a specialist in determining the difference between labyrinthitis and cerebellar stroke explained that there was definite physical distinction between the two in a matter of seconds with head movement. I liken it to when you spin around and around, you start to feel dizzy, but when you stop, that’s when you feel giddy, and the giddiness is the vestibular system not calibrating properly with the brain (balance) rather than the eyes not calibrating visually. Visual-spatial awareness is part of cerebellar stroke, but it’s a different set of issues like stereopsis, nystagmus, blurriness and double-vision.

Thank you so so much, that is such a huge help. And I have been reading through your posts all day.

You are quite right in relation to his stroke - I think his brain stem was also affected and that is why for the first few nights the focus very much was on his ability to breathe (which, I understand, was touch and go at one point).

Thank you, in particular, for your comments on how to “self help”. That is certainly needed right now as the staff are so stretched at his hospital his physio sessions are often missed. I will make a start with some reading for him, and also focus in on the areas that are troubling him the most. At the moment he hates looking to his left as that can cause a dizziness spell. Would you suggest that I ask a member of the ophthalmology department come see him?

Dim problem. I would put him in touch with ophthalmology, not because they would have an answer for his recovery but they may provide aides to assist with managing the condition. My eyes are 100% healthy but I was given varifocal glasses to ease the strain of my condition on my eyes, to avoid morbidity. They may also pick up nystagmus and other conditions which can then be managed or rehabilitated as best as possible. At this stage, your father may be experiencing brain fog, fatigue, and emotional issues. These don’t just exacerbate symptoms but are symptoms unto themselves and are in turn caused by the symptoms! If the medical staff are pushed to their limits, and he is willing to cooperate with you, both of you can work for a good recovery and a positive way forward. Cofion cynnes.

HiSi best wishes to your father. I hope that he can continue to recover.

Rups I find this thread fascinating. Your description of the act of putting socks on is fasciating - its so difficult. It’s a wonder anyone ever learns to do it! Interestingy, before the stroke, I was involved losely, in some study of interoceptive processing differences. My elder daughter is Autistic (diagnosed later, in her early 30s) . Looking back she was obviously quite dispraxic too. She and some of her friends have an expression to describe themselves “dinosaurs before shoelaces” They were able to learn and discuss the characteristics of dinosaurs in minute detail years before they could tie their shoelaces. Of course, to many, dinosaurs are a lot more interesting than shoelaces and there may be behavioural and social factors involved but reading your description I am struck with just how difficult some practical tasks are and just how much the brain needs to be able to do to perform them. No wonder they found such tasks difficult to do.

I’m also interested in your description of giddiness. I was also wrongly (self, I hadn’t got round to seeing the GP) diagnosed with vertigo in the weeks of (now obvious) nausea and vomiting before the stroke. I think my balance IS involved in the persisting symptoms but wonder if my brain/visual/gut axis is still just a bit mixed up. I can now look up and down a lot more easily than before and crossing the road, while still a bit worrying, is much easier than it was even a couple of months ago but I do wonder if there is anything I can do (other than carry on gently doing “normal” things that involve tilting the head to help improve things.

Do you find your varifocal glasses helpful? I had a routine eye test five months after the stroke and my optician recommended them, as he had the year before, but I’m wary of my brains capacity to get used to something new but Im now wondering whether I should try

@FionaB1, the varifocal glasses have assisted in a few ways. I could always see better without them, but I found that when my vision started to go blurry, they were useful for putting things back in focus and taking the strain off my eyes. An arbitrary benefit was that the frames created a barrier for my peripheral vision which cut out peripheral visual noise, this was very handy as peripheral visual noise would affect my direct vision, so I was able to focus just where I was going. and looking. I don’t wear them all the time because I don’t want my brain to adjust to the glasses, I want it to experience the world without them mostly.

thank you Rups - that’s an idea not wearing them all the time