Astrid2
New member
- Joined
- Jun 26, 2014
- Messages
- 6
- Reason
- Lost a loved one
- Country
- US
- State
- NJ
- City
- Hoboken
First of all, thank you to anyone who takes the time to read this. This is the first time I have ever actually reached out to anyone regarding my fears. I have always just led my family and friends to believe that I understand that I will not get ALS....
To start at the beginning... My mother, Astrid Aigotti, was diagnosed with ALS shortly after I was born. She was showing symptoms while she was pregnant with me and I am her only child. This was in 1981. Doctors told her that she had, at best, a year to live and my mother wouldn't allow that.
At the time, ALS in a woman so young was, and I believe still is, very rare. She was 31 years old and in good health apart from a finicky thyroid that turned into Graves Disease complete with goiter at the same time as her ALS began to show it ugly face. Her determination to have and raise a child, after 3 miscarriages and two ectopic pregnancies, was what kept her alive and strong. I am thankful for that every day.
My mother not only lived for almost 12 years with ALS but spent the first three years fighting for 24 our home health care for terminally ill patients so that she can be at home "to watch her daughter grow". She wrote letter after letter to President Reagan and Senator Dean Gallo with only the blinking of her eyes and her Godsend of a computer. She won that battle and, live on National news, she came home from the hospital in an ambulance to live with my father an I! She didn't stop there....she continued this battle for others with ALS that she had met through letters, pictures, and meetings. She won that battle as well and so the Astrid Aigotti Law was passed and loved ones could now go home, be with their families, and in turn
have more strength to fight their battle with ALS. She will forever be my hero.
By the time I was 4 she was completely bedridden and could only smile and blink. This is all I know of my mother. I have never heard her voice outside of utero. It is because of her illness that I knew her on a deeper level than most can imagine. I knew when she was happy, I knew when she was laughing, when she was sad, when she was crying, when she was angry, and when she needed something all just by looking at her! Even now, 21 years later, through the tears streaming down my face, I can see her face, red with laughter and her eyes filled with tears. This was my mother laughing. This was normal to me. I knew my mother on the deepest level possible.
Now don't be fooled, my mother was a strong, beautiful, and spunky young woman and it showed with every word that came out of her mouth (or...the computer, as it were). She would do just as any mother would....trust me. She would tell me when it was time to brush my teeth, ask me if I'd like to have pizza, tell me to clean my room, ask me to change the channel to the Mets game for her, ask me to put on her Elvis records and get red with laughter as I did my best Elvis impression singing into a hand brush and dancing around the room, and even SING happy birthday to me on my birthday! I could even speak to her on the phone when the nurse would put the phone up to her ear and I'd just wait for her to respond
I'd even put her o the phone with my best friend so she can say hello and that best friend (still my best bud today) remembers it clearly.
She was my mother, not a sick woman. And the connection we had was unmatched. By the time I was 8 I knew when she needed to be suctioned just by looking at her and I knew how to do it myself. I knew if she had an itch and I simply played the game of "is it here?" until I guessed right and she would look up to let me know. We didn't even need the computer half the time. Look up for "yes" and down for "no" went a long way with us if, in the rare case, facial expressions alone weren't enough.
ok....I apologize....I am getting carried away with my vivid and amazing memories that I can happily continue another time. So....If you are still reading this (thank you, if you are)
my reason for opening up on a forum for the first time is my recent fear that I will also be stricken with this horrific disease.
I am 33 now and I have had health anxiety for most of my life. It started a bit when I lost my mother when I was 11 and then got a bit worse when I lost my father to lung cancer at 16. I know that our minds can play tricks on us but unfortunately I am having very real symptoms. Small...but there non the less.
There has never been anyone in my mother or fathers family with ALS before my mother. And, of corse, the first question out my mothers mouth when diagnosed, was "Will my daughter get this?" As to which the answer (as told to me) was a clear cut "no".
Can anyone shed light on this for me? Does it matter that I was actually in utero when she had this disease?
Also, if anyone has any questions about my mother, I am more than happy to answer them. I do have news paper clippings and news reports of my mother when the law was passed. Ill post them another time
Thank you in advance, and be well,
Charlsie
To start at the beginning... My mother, Astrid Aigotti, was diagnosed with ALS shortly after I was born. She was showing symptoms while she was pregnant with me and I am her only child. This was in 1981. Doctors told her that she had, at best, a year to live and my mother wouldn't allow that.
At the time, ALS in a woman so young was, and I believe still is, very rare. She was 31 years old and in good health apart from a finicky thyroid that turned into Graves Disease complete with goiter at the same time as her ALS began to show it ugly face. Her determination to have and raise a child, after 3 miscarriages and two ectopic pregnancies, was what kept her alive and strong. I am thankful for that every day.
My mother not only lived for almost 12 years with ALS but spent the first three years fighting for 24 our home health care for terminally ill patients so that she can be at home "to watch her daughter grow". She wrote letter after letter to President Reagan and Senator Dean Gallo with only the blinking of her eyes and her Godsend of a computer. She won that battle and, live on National news, she came home from the hospital in an ambulance to live with my father an I! She didn't stop there....she continued this battle for others with ALS that she had met through letters, pictures, and meetings. She won that battle as well and so the Astrid Aigotti Law was passed and loved ones could now go home, be with their families, and in turn
have more strength to fight their battle with ALS. She will forever be my hero.
By the time I was 4 she was completely bedridden and could only smile and blink. This is all I know of my mother. I have never heard her voice outside of utero. It is because of her illness that I knew her on a deeper level than most can imagine. I knew when she was happy, I knew when she was laughing, when she was sad, when she was crying, when she was angry, and when she needed something all just by looking at her! Even now, 21 years later, through the tears streaming down my face, I can see her face, red with laughter and her eyes filled with tears. This was my mother laughing. This was normal to me. I knew my mother on the deepest level possible.
Now don't be fooled, my mother was a strong, beautiful, and spunky young woman and it showed with every word that came out of her mouth (or...the computer, as it were). She would do just as any mother would....trust me. She would tell me when it was time to brush my teeth, ask me if I'd like to have pizza, tell me to clean my room, ask me to change the channel to the Mets game for her, ask me to put on her Elvis records and get red with laughter as I did my best Elvis impression singing into a hand brush and dancing around the room, and even SING happy birthday to me on my birthday! I could even speak to her on the phone when the nurse would put the phone up to her ear and I'd just wait for her to respond
I'd even put her o the phone with my best friend so she can say hello and that best friend (still my best bud today) remembers it clearly.She was my mother, not a sick woman. And the connection we had was unmatched. By the time I was 8 I knew when she needed to be suctioned just by looking at her and I knew how to do it myself. I knew if she had an itch and I simply played the game of "is it here?" until I guessed right and she would look up to let me know. We didn't even need the computer half the time. Look up for "yes" and down for "no" went a long way with us if, in the rare case, facial expressions alone weren't enough.
ok....I apologize....I am getting carried away with my vivid and amazing memories that I can happily continue another time. So....If you are still reading this (thank you, if you are)
my reason for opening up on a forum for the first time is my recent fear that I will also be stricken with this horrific disease.
I am 33 now and I have had health anxiety for most of my life. It started a bit when I lost my mother when I was 11 and then got a bit worse when I lost my father to lung cancer at 16. I know that our minds can play tricks on us but unfortunately I am having very real symptoms. Small...but there non the less.
There has never been anyone in my mother or fathers family with ALS before my mother. And, of corse, the first question out my mothers mouth when diagnosed, was "Will my daughter get this?" As to which the answer (as told to me) was a clear cut "no".
Can anyone shed light on this for me? Does it matter that I was actually in utero when she had this disease?
Also, if anyone has any questions about my mother, I am more than happy to answer them. I do have news paper clippings and news reports of my mother when the law was passed. Ill post them another time
Thank you in advance, and be well,
Charlsie
