Birdfriend
New member
- Joined
- Oct 8, 2010
- Messages
- 0
- Reason
- CALS
- Country
- US
- State
- Ma
- City
- Cambridge
Hi Everyone, my name is Oen.
I'm here for the first time today, and found this site while looking for more information about ALS and dementia. I have already found much useful stuff here and what seems a warm and thoughtful group of humans. Thank you in advance for that.
My dad is 77 and was diagnosed with ALS last year. At this point he has fessiculations (sp?) throughout his body. His muscles are very atrophied, especially his left hand, where the thumb is almost useless at this point, and he can't do up buttons and stuff, and he's stiff all over. His balance is pretty bad. He fell in the shower this morning, and two nights ago he fell on the sidewalk (at night) and hit his face pretty good and got a helpful ride home. His speech is also quite changed, often slurry, and there are other symptoms which indicate that yes, he has ALS. His dad and half brother both died of ALS, and his half-brother was first diagnosed with Pick's dementia but then later it was changed to ALS with FTD, so his mental changes came first before the neuro stuff, which was not the case with my grandfather who was lucid right up till the end. One thing which my dad has had for a couple of years now is that whenever anything excites him he gets uncontrollable laughter or tears or both. This I identify as the emotional lability part of ALS.
We are having some confusion over whether he has FTD or not. He has always been forgetful/A.D.D. and for many years has repeated the same stories and sent the same presents year after year. That is just Dad. He is an incredible smart guy, and can quite easily recite Yeat's "Second Coming" or Robert Frost's "Tuft of Flowers from memory, and he is an endless fountain of information about human and natural history and science (as long as he doesn't drink wine). We have often wondered if he has Asperger's syndrome, because of ritualized ways of interacting with others, and because of over-sticking to certain subject areas, despite knowing about so many. His behavior in social situations at this point verges on innappropriate though, where he doesn't seem to see himself at all and more or less forces his topics on the group, like rigidly holding forth and when the spotlight is off him he just gets quiet. He isn't mean about it, but it can easily make people uncomfortable. The other night at a dinner for his 55 year Harvard reunion he asked the same couple 4 times when they got married within an hour, even after they told him they weren't married (he had been drinking wine though).
What I'm hoping for is for some helpful folks here to spell out their understanding of exactly how FTD manifests itself in ALS. For example, if someone has FTD and ALS, are they likely to be dramatically different in their personality and to lose significant cognitive function? Is there a pattern where the cognitive stuff tend to precede the muscle problems or vica versa or is there no such pattern? Etc.
I'm sorry not to have more specific questions yet, and I hope someone will let me know if I ought to approach the forum a different way--with less long posts for example, or more specific topics etc. This is the first time I've ever been on a forum.
Thanks, Oen
I'm here for the first time today, and found this site while looking for more information about ALS and dementia. I have already found much useful stuff here and what seems a warm and thoughtful group of humans. Thank you in advance for that.
My dad is 77 and was diagnosed with ALS last year. At this point he has fessiculations (sp?) throughout his body. His muscles are very atrophied, especially his left hand, where the thumb is almost useless at this point, and he can't do up buttons and stuff, and he's stiff all over. His balance is pretty bad. He fell in the shower this morning, and two nights ago he fell on the sidewalk (at night) and hit his face pretty good and got a helpful ride home. His speech is also quite changed, often slurry, and there are other symptoms which indicate that yes, he has ALS. His dad and half brother both died of ALS, and his half-brother was first diagnosed with Pick's dementia but then later it was changed to ALS with FTD, so his mental changes came first before the neuro stuff, which was not the case with my grandfather who was lucid right up till the end. One thing which my dad has had for a couple of years now is that whenever anything excites him he gets uncontrollable laughter or tears or both. This I identify as the emotional lability part of ALS.
We are having some confusion over whether he has FTD or not. He has always been forgetful/A.D.D. and for many years has repeated the same stories and sent the same presents year after year. That is just Dad. He is an incredible smart guy, and can quite easily recite Yeat's "Second Coming" or Robert Frost's "Tuft of Flowers from memory, and he is an endless fountain of information about human and natural history and science (as long as he doesn't drink wine). We have often wondered if he has Asperger's syndrome, because of ritualized ways of interacting with others, and because of over-sticking to certain subject areas, despite knowing about so many. His behavior in social situations at this point verges on innappropriate though, where he doesn't seem to see himself at all and more or less forces his topics on the group, like rigidly holding forth and when the spotlight is off him he just gets quiet. He isn't mean about it, but it can easily make people uncomfortable. The other night at a dinner for his 55 year Harvard reunion he asked the same couple 4 times when they got married within an hour, even after they told him they weren't married (he had been drinking wine though).
What I'm hoping for is for some helpful folks here to spell out their understanding of exactly how FTD manifests itself in ALS. For example, if someone has FTD and ALS, are they likely to be dramatically different in their personality and to lose significant cognitive function? Is there a pattern where the cognitive stuff tend to precede the muscle problems or vica versa or is there no such pattern? Etc.
I'm sorry not to have more specific questions yet, and I hope someone will let me know if I ought to approach the forum a different way--with less long posts for example, or more specific topics etc. This is the first time I've ever been on a forum.
Thanks, Oen
