rocmg
Distinguished member
- Joined
- Dec 29, 2008
- Messages
- 389
- Reason
- PALS
- Country
- UK
- State
- N/A
- City
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hi everyone... i've been lurking and not posting for a bit. i wanted to use this thread to say hello again and see how everyone is. never a day goes by that i don't think of you all, PALS and families.
it's been four and a half months since my mum's diagnosis and 14 months since symptom onset. i've noticed her speech is a little less clear than it was 4 months ago, sounds a little lazier and words roll into each other a little more frequently. the weakness in her arms and her dexterity seems to have taken a bit of a hit -- she finds she has to kind of saw food with her knife, rather than cut it, and turning over in bed is a bit more labored. she's still walking, although she says her balance isn't the best and she doesn't feel comfortable running. no excessive drooling or eating problems. i don't know what all this means in terms of the rate of her progression. i hope it's slow. she still looks the same and hasn't lost weight. i wish her outward radiance could translate inwardly. she is still having a hard time coming to terms with her diagnosis. she cries a lot and there are days she just gets a faraway look in her eyes and there's nothing i can do to bring her back to me. it makes me very, very sad. i have to say, emotionally, we've all taken such a battering. my dad is also very sad and depressed. my brothers are fond of saying to mum, "you're fine. you'll be ok." sometimes that makes me angry and i feel like saying "she won't be OK and she's never going to be OK again!" but then i have to catch myself. maybe she will be OK? is it lying to say she will be OK? is it possible that she might be OK? i don't know. i oscillate between a light and a very dark place. assuming she has come to terms with her situation, when the time comes she will be vented. my dad and i have made the decision that we'll always stay with her. is that as good as telling her she'll be OK and that she's going to live? i don't know.
anyway, please let me know how you all are. i hope you've been having fun and enjoying the summer.
r. xo
it's been four and a half months since my mum's diagnosis and 14 months since symptom onset. i've noticed her speech is a little less clear than it was 4 months ago, sounds a little lazier and words roll into each other a little more frequently. the weakness in her arms and her dexterity seems to have taken a bit of a hit -- she finds she has to kind of saw food with her knife, rather than cut it, and turning over in bed is a bit more labored. she's still walking, although she says her balance isn't the best and she doesn't feel comfortable running. no excessive drooling or eating problems. i don't know what all this means in terms of the rate of her progression. i hope it's slow. she still looks the same and hasn't lost weight. i wish her outward radiance could translate inwardly. she is still having a hard time coming to terms with her diagnosis. she cries a lot and there are days she just gets a faraway look in her eyes and there's nothing i can do to bring her back to me. it makes me very, very sad. i have to say, emotionally, we've all taken such a battering. my dad is also very sad and depressed. my brothers are fond of saying to mum, "you're fine. you'll be ok." sometimes that makes me angry and i feel like saying "she won't be OK and she's never going to be OK again!" but then i have to catch myself. maybe she will be OK? is it lying to say she will be OK? is it possible that she might be OK? i don't know. i oscillate between a light and a very dark place. assuming she has come to terms with her situation, when the time comes she will be vented. my dad and i have made the decision that we'll always stay with her. is that as good as telling her she'll be OK and that she's going to live? i don't know.
anyway, please let me know how you all are. i hope you've been having fun and enjoying the summer.
r. xo