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
great to see you stop in Cereus. I never knew of that other forum, but was talking to other CALS on fb and I believe there is a new closed group there now for FTD/ALS as well.
Interesting that it hasn't been recognised well for a long time. It is now believed that 50% of all PALS have some FTD and/or at least some cognitive changes (I believe too they are now calling it fronto temporal degeneration rather than dementia which is more fitting really). The level of degeneration is as variable as the presentation of physical symptoms and wastage around the body.
I think that to survive after they are gone, you really need to get clear with yourself on not being drawn in to the behaviours. I know that for the first 3 months after Chris passed I was literally haunted by things he used to say to me. I've noticed this really easing off over the second 3 months.
Interesting that it hasn't been recognised well for a long time. It is now believed that 50% of all PALS have some FTD and/or at least some cognitive changes (I believe too they are now calling it fronto temporal degeneration rather than dementia which is more fitting really). The level of degeneration is as variable as the presentation of physical symptoms and wastage around the body.
I think that to survive after they are gone, you really need to get clear with yourself on not being drawn in to the behaviours. I know that for the first 3 months after Chris passed I was literally haunted by things he used to say to me. I've noticed this really easing off over the second 3 months.