Hello. I posted here sometime last year and unfortunately I'm back again. I'm copying my original post here so I don't have to retyoe it to give the background. The change since last year is that now we have another family member who has been diagnosed at age 63 with ALS. She is my grandmothers sisters daughter. We are not close with that side of the family so I do not know details but it's a very recent diagnosis.
My questions: does this seem familial to you enough for me to be concerned? It does seem to me but I know very little about this disease. It does seem unlikely given the odds overall of getting it that this is a coincidence. My father is now 65 and showing what could be slight signs of dementia but it's mainly forgetfulness, etc that could easily be explained by age, poor diet etc. I could just be noticing these things because I'm looking for them but my mom has expressed concern once before. My grandmother was diagnosed with Alzheimer's in her late 60s and passed away at 78 but no tests were run to determine that it was that vs another kind of dementia.
If this is familial, how do you get tested for these genes? My neurologist says there's no link between dementia and ALS which doesn't seem right based on what I've read so he wouldn't recommend me for genetic counseling. I'm concerned because my sister and I are having children at his stage. I would hate to pass this on.
Thanks for your time.
Lauren
ORIGINAL POST BELOW
Hello. First let me say, thanks for letting me ask these questions here. I don't want to dwell too much on this or Google anything else but a conversation I had with my father this week has made me very nervous. We were discussing health and family history and he mentioned that his aunt on his mothers side (my great aunt) passed away at 54 from ALS. As far as I know, this is the only person in my family that has had ALS. However, my grandmother is one of three and she passed away at 78 from Alzheimers complications. Her remaining sister also passed away from Alzheimers related complications at 74. I've read that familial ALS is also associated with FTD and that it is often misdiagnosed as Alzheimers. The high incidence of dementia and ALS (3 out of 3) concerned me.
I'm trying to focus on the positives. My great aunt with ALS did not have children so no way to know if anything was passed on. My grandmother had five kids. One passed away from Sarcoidosis at 64 after battling it for many years. He suffered from severe dementia the last six months of the disease but the disease was everywhere at that point. My father and his remaining siblings are all still alive and healthy (ages 59 - 70). My father is 64 and no troubling behavior that doesn't seem to just be age related. My grandmothers other sister had three children. All are healthy and in their late 40s / early 50s. I have lots of cousins ranging from young to 40s and no other sign of ALS or dementia.
I apologize for the long post and not even sure what I'm asking. Does this seem worrying for a genetic cause of ALS / dementia or more likely an isolated case and typical advancing age Alzheimers?
Thank you so much for your time.
My questions: does this seem familial to you enough for me to be concerned? It does seem to me but I know very little about this disease. It does seem unlikely given the odds overall of getting it that this is a coincidence. My father is now 65 and showing what could be slight signs of dementia but it's mainly forgetfulness, etc that could easily be explained by age, poor diet etc. I could just be noticing these things because I'm looking for them but my mom has expressed concern once before. My grandmother was diagnosed with Alzheimer's in her late 60s and passed away at 78 but no tests were run to determine that it was that vs another kind of dementia.
If this is familial, how do you get tested for these genes? My neurologist says there's no link between dementia and ALS which doesn't seem right based on what I've read so he wouldn't recommend me for genetic counseling. I'm concerned because my sister and I are having children at his stage. I would hate to pass this on.
Thanks for your time.
Lauren
ORIGINAL POST BELOW
Hello. First let me say, thanks for letting me ask these questions here. I don't want to dwell too much on this or Google anything else but a conversation I had with my father this week has made me very nervous. We were discussing health and family history and he mentioned that his aunt on his mothers side (my great aunt) passed away at 54 from ALS. As far as I know, this is the only person in my family that has had ALS. However, my grandmother is one of three and she passed away at 78 from Alzheimers complications. Her remaining sister also passed away from Alzheimers related complications at 74. I've read that familial ALS is also associated with FTD and that it is often misdiagnosed as Alzheimers. The high incidence of dementia and ALS (3 out of 3) concerned me.
I'm trying to focus on the positives. My great aunt with ALS did not have children so no way to know if anything was passed on. My grandmother had five kids. One passed away from Sarcoidosis at 64 after battling it for many years. He suffered from severe dementia the last six months of the disease but the disease was everywhere at that point. My father and his remaining siblings are all still alive and healthy (ages 59 - 70). My father is 64 and no troubling behavior that doesn't seem to just be age related. My grandmothers other sister had three children. All are healthy and in their late 40s / early 50s. I have lots of cousins ranging from young to 40s and no other sign of ALS or dementia.
I apologize for the long post and not even sure what I'm asking. Does this seem worrying for a genetic cause of ALS / dementia or more likely an isolated case and typical advancing age Alzheimers?
Thank you so much for your time.
) and I can't keep track of who isn't speaking to each other at any given time. So it's hard to get details. I asked my mom about my grandmothers dementia and she just knows that she was "saying funny things" and forgot who we all were. It got to the point where she wasn't speaking much and would just barely cry or chuckle when we'd go see her. I don't remember seeing any of the behavioral signs of FTD but I was in high school and then college when she passed away so I didn't see her that much. Given that she lived to be 78 and had some signs of Alzheimer's, is it possible that hers is a coincidence? Is there a correlation between FALS families and a higher rate of neurodegenerative diseases not caused by the gene mutation? I guess I'm just grasping at straws at this point and hoping hers is unrelated...
