affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- lala land
of course there are actually hundreds, but these are the top 3 things I miss:
1. Free and easy conversation. With bulbar onset my man who used to talk constantly has of course become so quiet and conversation is stilted as he tries to find easy words to say and I have to ask him to repeat at least half of what he says now.
2. Making project plans. We were constantly coming up with hair-brained projects for bigger better gardens, pavers to make new paths or some such thing. His ability to think so creatively and find a way to make anything work made these projects hilarious and so fulfilling. I hate that we can't do any more big projects together.
3. Laughing. With the bulbar effect, we have to be so careful about laughing as he aspirates so easily, especially if he gets to laughing too hard and with the emotional lability this is even more of a threat as if he starts to laugh it can be hard for him to stop. Laughter was one of the worst things to be taken from us. We do still laugh a bit, but I'm always having to hold back and so is he.
3 things I am grateful for:
1. He still has a sense of humour
2. I met him for that first coffee date
3. Each and every day
1. Free and easy conversation. With bulbar onset my man who used to talk constantly has of course become so quiet and conversation is stilted as he tries to find easy words to say and I have to ask him to repeat at least half of what he says now.
2. Making project plans. We were constantly coming up with hair-brained projects for bigger better gardens, pavers to make new paths or some such thing. His ability to think so creatively and find a way to make anything work made these projects hilarious and so fulfilling. I hate that we can't do any more big projects together.
3. Laughing. With the bulbar effect, we have to be so careful about laughing as he aspirates so easily, especially if he gets to laughing too hard and with the emotional lability this is even more of a threat as if he starts to laugh it can be hard for him to stop. Laughter was one of the worst things to be taken from us. We do still laugh a bit, but I'm always having to hold back and so is he.
3 things I am grateful for:
1. He still has a sense of humour
2. I met him for that first coffee date
3. Each and every day