Interesting. From the perspective of a person without this condition it's hard to imagine it being nothing but torture, but at the same time we often underestimate how adaptive we are even to extreme situations when we have social and emotional support
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@Jopo_dr Here’s an example https://t.co/YFqEU2bWyH See also: The Diving Bell and the Butterfly
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@mterburg Het is ook een nare aandoening. Ik was echter ook verbaasd toen ik voor het eerst las dat de kwaliteit van leven van deze groep nog relatief hoog is. https://t.co/zHqruEZeSy https://t.co/JaUohOru9b
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@adamcifu @timeisbrain Is there data on actual practices at the end of life for physicians? There is sometimes a discrepancy between what someone says they prefer and what they actually prefer. Perhaps not, but reminded of the QoL work in patients with loc