Sunday foraging

Nos dah, @DeAnn, a post is a post no matter how old it is by time. I constantly grapple with vision. I know that some of it is cognitive nystagmus, double-vision, blurred vision, and then the rest is vestibular and oculomotor reflexes which includes a whole plethora of movement and sight focus issues. All this is compounded by other stroke related problems such as neurological fatigue but also affected by “normal” feelings and emotions, and thoughts. Can I also add to the cauldron, anxiety and stress. All these issues use energy, an immense amount of energy, every millisecond of every moment, used to engage the controls just to move and see. The problem gets worse, because if I shut me eyes, it doesn’t resolve the issue. My body can’t synchronise with my brain in space, thus, the cognitive visual-spatial reflex issue. Strangely enough, I have come to rely on smell as my main grounding sense. It is the strongest of our five senses, and has not been affected by stroke, for me. So, in an odd way, I tend to see and hear through my nose. If that makes sense. My movement is more fluid if lead by my nose.

As for eyesight, I have been meaning to write a post about that. Long overdue. There is lots to consider, and diolch, I will endeavour to write a post over the next few days, as it has helped me understand the way the brain interprets the world around it. If you end up in hospital with severe cognitive visual issues, alas, no one sits down to explain what is happening inside the skull. Many brilliant research studies are released and the sad matter is that many of us are locked outside of that research. Yet, we have this forum which is as good as any a place to share our experience and knowledge.

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I hope you will write it. Just your reply is helpful to me. I just started Vestibular Therapy…so far just standing on a foam mat with eyes closed; walking a line first with eyes open, then closed; walking while finding letters along the way to make me turn my head and try to focus at the same time; and finally tipping my head from side to side to my shoulders. I believe this was just for assessment. The last time I tried, six months ago, I couldn’t nod or shake my head as if saying yes or no, nor could I actually see a face right in front of me. I know they are there by either their movement, scent, or a sound they make, and one can just feel someone is there. I am more ready for this now. Hopefully ready enough, but no one is certain. I loved my job, but I can’t go back to it because it does not offer insurance and I would not be able to afford it. Yearly Echocardiograms and bi-annual MRI’s and CT’s would cost more than I make. I can’t imagine learning a new post at this time. I don’t think anyone thought I would live, let alone ever be able to work again, as I do not have to redetermine for disability for 6 years, which is usually done annually. Possibly I can do something from home in small doses. I would like to be able to drive, but don’t feel certain at all that it will ever happen. This is my last shot, I think, for now. Unless they come up with something new. Also, possibly prism glasses, but NeuroOpthamologist doesn’t want to talk about that for now. Not sure if she does not want me to give up, knowing it won’t work, or just putting it off to see how far I can get. She is also a stroke survivor and is quite patient with me. There are no other specialists of her kind around here and this is the 11th or 12th largest city in the US. I am very lucky they still even bother with me at this point…all of my medical team. I still get to see her, my Primary Care Physician, Neurologist, Cardiologist, CardioThoracic Surgeons, Urologist, Gastroenterologist, Physiatrist, Dermatologist, and Physical Therapists. Infectious Disease Specialist and Nephrologist are the only ones I am finished with. (Strokes were caused by Sepsis).

I’m sorry I am over explaining…I just wanted anyone who read to understand, sometimes even though we all have quite a bit in common, the beginning of this journey is often from quite different strokes altogether.

I would really like to hear about your journey, and hope you are still getting some help…or like TBI, stroke, or any other brain injury, everything just comes back out of the blue. And if not, that you have found work arounds that you are content with. I am just finding mine, little by little.

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Hello @DeAnn. I really hope the vestibular therapy works for you. I am currently trying again with prisms in my glasses as am due an appointment with the opthalmologist next week and I was given them in February but abandoned them after a few days due to a sore neck and nausea. It does seem a little easier this time but the resulting vision is still fractured, more so outside. I have a different issue to yours-third and sixth nerve palsy so my affected eye does not move with the other one which has a knock on on the vestibular system affecting balance and coordination.
Keep us posted on how the therapy goes, and I’m keeping my fingers crossed for you, Julia x

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@JuliaH

do you get support from any orgs such as rnib with vision related challenges?

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Hello @SimonInEdinburgh. Never been suggested and never looked into it. Have enough vision in unaffected eye to function, including driving (with affected eye patched), so can only be grateful for that. Julia x

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