Christina86
New member
- Joined
- Sep 28, 2013
- Messages
- 9
- Reason
- Loved one DX
- Country
- HU
- State
- pest
- City
- uri
Dear All,
maybe I am not writing in the right topic... maybe this should go in the DIHALS topic.
This is my hopeless scream on the internet, for strangers.
I should be the caregiver of my mother, but I am not...
This is the story of our family (with some off-topic, not ALS-related threads)
I will be 27 yrs next month, married, and a mother of two (3 yrs old girl and 1 yr boy).
My husband is legally blind, with very little residual vision, by rare, uncurable eye disease called cone dystrophy. This is inheritable, its pattern in his family is X-linked recessive inheritance. He is a semi-pro para-athlete, competed at London Paralympics last year. I have been managing his sport career for 4 years. Both of us are an only child, my father died of excessive drinking while I was pregnant with our first child, my husband's father died long ago. My mother-in-law is disabled by an accident.
When we decided to have kids, we were aware of that it would be difficult, but my mother was happy to help us.
I was pregnant with our second child, when my mother started to complain of extreme fatigue, then her walking significantly slowed down (within weeks), became shuffly and unbalanced. Then she just tripped and fell. After one year of going to the doctors, she was diagnosed with rapidly progressive ALS (age 59). At the same time our little girl was sent for development therapies, with delayed speech development and signs of ADHD and mild autistic symptoms. I already had a long history of anxiety, depression, panic, suicidal thoughts, but at this point, I went mad, lost all of sanity.
Our world has broken.
I spent nights and nights on the internet, looking for some hope for my mother, alternative therapies, experimental drugs, anything.
Then, 5-6 weeks after my mother's diagnosis, once I woke up in the night with twitching in my neck. I had a severe panic attack then. From the next day, twitching set on all over my body, but especially below the waist: feet, calves, thighs, buttocks, and also: hands, arms, shoulders, face, lips, back, every.
I panicked I got it. Then I got a feeling of weakness on my left side, both hand and leg. Shakes, tremors, sense of vibrations, buzzing, something crawling in my muscles in my calves. At this point, I lost connections to my family. I became unable to take care of my children, play with them, take care of my husband, make love to him, speak to him, anything. I lost connections to all of our friends.
I developed a routine of strenght self-testing, which I am doing for hours, cannot stop. This includes jumping, both feet and on one foot, standing on one foot, squatting, squatting on one foot, pushups, walking on toes, walking on heels, walking in a squatting position, jumping in squatting positions, gripping one arm with the other hand, stand on hands, holding pushup position on fingers etc.
I went to a neuro, but she refused to examine me, said it was nothing but most severe anxiety, and that she did not need an EMG to say I did not have ALS. She was also quilified as a psychiatrist, so prescribed me Xanax and Parexetine. I do not take these beacuse I am still nursing the my son.
By this time, my mother's condition quickly declined. I became such a wreck, that it endangered the very basis of our family life, and threatened me with loosing our kids to child protection authorities.
We hired a qualified nurse for my mother, as I am a total wreck and unable to care for her.
I keep on thinking 24/7 that I also have ALS, I die by age 30 and who will raise my kids.
I got a new appt for the best neuro in our country, for 18th Dec. I really hope it is really just psychic problems with me, and can be cured. Please let it be not familial ALS - anyway, my mother's parents did not have ALS, lived long, 81 yrs and 83 yrs. But I do not have any more informations.
Sorry for this long, miserable stuff. Any positive comment would be really appreciated.
maybe I am not writing in the right topic... maybe this should go in the DIHALS topic.
This is my hopeless scream on the internet, for strangers.
I should be the caregiver of my mother, but I am not...
This is the story of our family (with some off-topic, not ALS-related threads)
I will be 27 yrs next month, married, and a mother of two (3 yrs old girl and 1 yr boy).
My husband is legally blind, with very little residual vision, by rare, uncurable eye disease called cone dystrophy. This is inheritable, its pattern in his family is X-linked recessive inheritance. He is a semi-pro para-athlete, competed at London Paralympics last year. I have been managing his sport career for 4 years. Both of us are an only child, my father died of excessive drinking while I was pregnant with our first child, my husband's father died long ago. My mother-in-law is disabled by an accident.
When we decided to have kids, we were aware of that it would be difficult, but my mother was happy to help us.
I was pregnant with our second child, when my mother started to complain of extreme fatigue, then her walking significantly slowed down (within weeks), became shuffly and unbalanced. Then she just tripped and fell. After one year of going to the doctors, she was diagnosed with rapidly progressive ALS (age 59). At the same time our little girl was sent for development therapies, with delayed speech development and signs of ADHD and mild autistic symptoms. I already had a long history of anxiety, depression, panic, suicidal thoughts, but at this point, I went mad, lost all of sanity.
Our world has broken.
I spent nights and nights on the internet, looking for some hope for my mother, alternative therapies, experimental drugs, anything.
Then, 5-6 weeks after my mother's diagnosis, once I woke up in the night with twitching in my neck. I had a severe panic attack then. From the next day, twitching set on all over my body, but especially below the waist: feet, calves, thighs, buttocks, and also: hands, arms, shoulders, face, lips, back, every.
I panicked I got it. Then I got a feeling of weakness on my left side, both hand and leg. Shakes, tremors, sense of vibrations, buzzing, something crawling in my muscles in my calves. At this point, I lost connections to my family. I became unable to take care of my children, play with them, take care of my husband, make love to him, speak to him, anything. I lost connections to all of our friends.
I developed a routine of strenght self-testing, which I am doing for hours, cannot stop. This includes jumping, both feet and on one foot, standing on one foot, squatting, squatting on one foot, pushups, walking on toes, walking on heels, walking in a squatting position, jumping in squatting positions, gripping one arm with the other hand, stand on hands, holding pushup position on fingers etc.
I went to a neuro, but she refused to examine me, said it was nothing but most severe anxiety, and that she did not need an EMG to say I did not have ALS. She was also quilified as a psychiatrist, so prescribed me Xanax and Parexetine. I do not take these beacuse I am still nursing the my son.
By this time, my mother's condition quickly declined. I became such a wreck, that it endangered the very basis of our family life, and threatened me with loosing our kids to child protection authorities.
We hired a qualified nurse for my mother, as I am a total wreck and unable to care for her.
I keep on thinking 24/7 that I also have ALS, I die by age 30 and who will raise my kids.
I got a new appt for the best neuro in our country, for 18th Dec. I really hope it is really just psychic problems with me, and can be cured. Please let it be not familial ALS - anyway, my mother's parents did not have ALS, lived long, 81 yrs and 83 yrs. But I do not have any more informations.
Sorry for this long, miserable stuff. Any positive comment would be really appreciated.
