Vebinad
New member
- Joined
- Feb 26, 2023
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 00/0000
- Country
- CA
- State
- AB
- City
- Mayerthorpe
Just for background, I am a 30Y female.
My paternal grandfather died from ALS when my father was 12. Unfortunately I don’t know the age he passed. He had 4 children including my father, all of whom are in their 60’s now and fairly healthy. They have all gone on to have children.
This is where things get slightly confusing. Please bear with me as it’s a longer explanation but it all ties in. My father has been a drug addict for the last 20 years or so. He has a habit of habitually lying for sympathy. However, my mother (they are now separated) is much more virtuous and would never tell anything but the truth.
In 2006 my father had a health situation that we later found out was possibly a number of mini strokes. There is a chance his hidden drug use contributed to his health issues as well. Due to his father dieing of ALS, they sent him for genetic testing. According to my dad the test came back positive for 2 ALS genes. I would be inclined to believe he was lying for sympathy, except for the fact that his life insurance paid their mortgage out completely. Surely they would not have done so without the proper supporting evidence. I recently asked my mother about this story. She confirmed that yes, the insurance paid him out, and a few weeks later the Doctors “took back” the ALS diagnosis. She cannot remember why or any other details whatsoever, other than they offered me and my siblings to be tested. I don’t know if they offered to test us before or after they “took back” his ALS diagnosis. It’s all a very chaotic story and she regrets she cannot remember the details clearer.
My father is now 68 and no symptoms of ALS, nor does anyone else in the family I am aware of. So other than my grandfather dieing from it, and my father apparently having the gene, nobody has been affected. I’m torn between thinking it may be a recessive gene he has, onset hasn’t occurred yet, or a gene that hasn’t expressed itself. I’ve tried to research the chances of FALS with multiple members having a gene that has not expressed itself ie. if one member is more resilient, are the others?
My youngest son (3) is currently getting genetic testing for a completely different reason. In turn, mine and my husband’s will be done as well. I am scared to death of the thought that I will find out I have the gene through this testing, that this is perhaps familial ALS and the gene simply hasn’t expressed itself in my father. I have lived with some anxiety all of my life but I cannot sort out whether the risk of finding out I have the gene is worth finding out. My anxiety at simply the thought of having it has me incredibly on edge.
I apologize if this comes off insensitive to those who are currently dealing with ALS or a family member with ALS. In no way shape or form do I intend to sound insensitive to those bearing a much more difficult burden than the unknown. My love truly goes out to anyone fighting this battle right now.
My paternal grandfather died from ALS when my father was 12. Unfortunately I don’t know the age he passed. He had 4 children including my father, all of whom are in their 60’s now and fairly healthy. They have all gone on to have children.
This is where things get slightly confusing. Please bear with me as it’s a longer explanation but it all ties in. My father has been a drug addict for the last 20 years or so. He has a habit of habitually lying for sympathy. However, my mother (they are now separated) is much more virtuous and would never tell anything but the truth.
In 2006 my father had a health situation that we later found out was possibly a number of mini strokes. There is a chance his hidden drug use contributed to his health issues as well. Due to his father dieing of ALS, they sent him for genetic testing. According to my dad the test came back positive for 2 ALS genes. I would be inclined to believe he was lying for sympathy, except for the fact that his life insurance paid their mortgage out completely. Surely they would not have done so without the proper supporting evidence. I recently asked my mother about this story. She confirmed that yes, the insurance paid him out, and a few weeks later the Doctors “took back” the ALS diagnosis. She cannot remember why or any other details whatsoever, other than they offered me and my siblings to be tested. I don’t know if they offered to test us before or after they “took back” his ALS diagnosis. It’s all a very chaotic story and she regrets she cannot remember the details clearer.
My father is now 68 and no symptoms of ALS, nor does anyone else in the family I am aware of. So other than my grandfather dieing from it, and my father apparently having the gene, nobody has been affected. I’m torn between thinking it may be a recessive gene he has, onset hasn’t occurred yet, or a gene that hasn’t expressed itself. I’ve tried to research the chances of FALS with multiple members having a gene that has not expressed itself ie. if one member is more resilient, are the others?
My youngest son (3) is currently getting genetic testing for a completely different reason. In turn, mine and my husband’s will be done as well. I am scared to death of the thought that I will find out I have the gene through this testing, that this is perhaps familial ALS and the gene simply hasn’t expressed itself in my father. I have lived with some anxiety all of my life but I cannot sort out whether the risk of finding out I have the gene is worth finding out. My anxiety at simply the thought of having it has me incredibly on edge.
I apologize if this comes off insensitive to those who are currently dealing with ALS or a family member with ALS. In no way shape or form do I intend to sound insensitive to those bearing a much more difficult burden than the unknown. My love truly goes out to anyone fighting this battle right now.