Hypertrophic olivary degeneration

Hi everyone, I’m new here!

I was a physio before my cerebellar stroke in Feb 2024, 6 weeks off retirement! I was 66 1/2 and active, good diet etc. Though the bruises has resolved, I’m left with hypertrophic olivary degeneration. I have the following symptoms: tremor and weakness down the right, upper limb shakes with intention. Walking is affected - I can walk a mile with sitting and difficulty. Eyesight affected on right with nystagmus, I feel dizzy a lot. My voice is affected, and apparently I can’t always be heard, esp if there is ambient noise. Singing getting better but hard.

On the left, my “good side” I can’t feel hot or cold, or some types of pain. There are pins and needles if something is too hot/cold ., i cut or burn myself. I have one sided headaches, and feel the sun on the right but not the left.

I have falls x 6 since the stroke and do better on even ground. Things take MUCH longer. I dont drive. sing, or drawer. I found I can do things on the left.

So far the emotional side hasn’t been adressed, but ive just received the Stroke Association’s booklet on behavioral changes after stroke. I need to understand that aspect too. I’m going through a range of emotions.

I’ll be posting about my experience, what is getting better or worse!

I have a husband, who is my main carer, driver, cook, tea maker!

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Welcome to the cerebellar stroke club, an extremely rare and complex type of stroke as it can manifest CCAS (Cerebellar cognitive affective syndrome). CCAS shares space with other neurodivergent conditions as well as basic motor functions. Nystagmus is the bane of my existence. Five years on and I still haven’t got entirely used to it. I look forward to your updates and feel free to pitch any pertinent questions, or otherwise, on the forum.

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Hi & welcome to the community @ula. Sounds like you still have a lot going on following your stroke & I am sure it drives you mad at times. Getting used to doing things in a different way, or having help to do them, can take a while but needs must. I have adapted reasonably well but still need my hubby to do things for me. I had a different type of stroke. Loss of independence is a big thing to deal with.

Look forward to your updates.

Ann

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