HOD hypertrophic Olivary degeneration

Hi. So my partner had is brain stem bleed in sept 22, he was doing alright. Just began to walk in his own and we were considering getting rid of his need for carers. Then he kept falling. Long story short he had an MRI and was diagnosed with HOD in July 23. We’ve waited 6 months to see an expert in the field to be told it’s really rare and there’s not enough information to offer any definitive treatment. In other words there’s no cure, I’ve read so much about it and it’s scared me. Words like “palliative care” “life sentence”
My partner can’t use a computer due to eyesight and I don’t know what to tell him… he thinks he’ll get better… he’s only 53.

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Sorry to hear of your predicament. I had a bleed the same month same year, and there are several symptoms that are not readily explained. Anyway, good luck,


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Really sorry to hear of your partners diagnosis. I don’t know anything of the condition but rather than google it perhaps you should write a list of questions to ask the medical professionals. Some thinfs can be treated, but not cured, for a very long time but if this isn’t the case you need to know so you can plan what you want to do. Perhaps ask for a 2nd opinion if you feel you need to.

Wishing you both all the best.


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Hello @Allyshort
I’m sorry to hear about your situation :frowning: some lifes turns are cruel and unfair. Roland and Ann are right that googling often throws up the things to raise one’s anxiety when the query is general and unstructured :frowning: and that some conditions can be managed successfully extended period.

That are some big questions to be addressed in your situation: has your partner got good cognitive ability? In which case They are due the best explanation of the outlook :frowning:

Reading between the lines that maybe something you feel you need with? - maybe your GP could sign post or maybe age UK or maybe Stroke Assoc’tn helpline :iphone: 03033033100 / :incoming_envelope: helpline@stroke.org.uk

Cancer research and Marie curie & McMillan have web pages on the topic as do some specialist charities about end-of-life preparations for family and affected ones

Also a power of attorney like you said something get in place now?

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