Juliack7
New member
- Joined
- Jun 13, 2021
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 06/2021
- Country
- US
Hi,
I’m a 35 year old woman who just lost her wonderful 77 year old mother to ALS. She began showing symptoms a year before her death. Once she became sick, it has come out that some other family members on her father’s side had ALS. I was told her father (my grandfather) died of 83 after a short decline with dementia (he did not formally have ALS but I’m suspicious) and I was told my great grandfather also died of dementia (I’m not sure of his exact age but it was 70s or 80s). Although I was suspicious there could be a genetic link it was not until yesterday when a second cousin of my mom mentioned his mom had ALS that I became convinced it is familial.
Now my mother is dead and there are no other living relatives with the disease so there is no option to test an affected person . Even if she had a known gene I’m not sure knowing my status is knowledge I could live with. I have 2 young children and am currently pregnant. I know when my children reach adulthood it is information i will have to share for family planning purposes but it breaks my heart to burden them with that news. I lived the first 35 years of my life in ignorance and would do anything to go back to that state. I’m a physician and a “worrier”. There are moments I can really put it out of my head, and some I can not.
I’m not sure what I’m looking for by posting but I guess I just wanted to share my story and my concerns. They weigh very heavily on me.
I’m a 35 year old woman who just lost her wonderful 77 year old mother to ALS. She began showing symptoms a year before her death. Once she became sick, it has come out that some other family members on her father’s side had ALS. I was told her father (my grandfather) died of 83 after a short decline with dementia (he did not formally have ALS but I’m suspicious) and I was told my great grandfather also died of dementia (I’m not sure of his exact age but it was 70s or 80s). Although I was suspicious there could be a genetic link it was not until yesterday when a second cousin of my mom mentioned his mom had ALS that I became convinced it is familial.
Now my mother is dead and there are no other living relatives with the disease so there is no option to test an affected person . Even if she had a known gene I’m not sure knowing my status is knowledge I could live with. I have 2 young children and am currently pregnant. I know when my children reach adulthood it is information i will have to share for family planning purposes but it breaks my heart to burden them with that news. I lived the first 35 years of my life in ignorance and would do anything to go back to that state. I’m a physician and a “worrier”. There are moments I can really put it out of my head, and some I can not.
I’m not sure what I’m looking for by posting but I guess I just wanted to share my story and my concerns. They weigh very heavily on me.