East of Austin
New member
- Joined
- Apr 21, 2024
- Messages
- 4
- Reason
- Lost a loved one
- Diagnosis
- 08/2023
- Country
- US
- State
- TX
- City
- Smithville
My husband became extremely ill in February of 2020 and by March he was convinced it was COVID. Long covid and ALS seem to be a thing and a university in another country is studying it. By December he was having pain and issues with his hands feeling like they were covered in fur and neuropathy pain in hands and feet. He was given gabapentin with no answers.
By March of 2021 his speech and swallowing was being affected with no answers. He continued to work but with frustration. He kept silent mostly about what he was going through like having a hard time driving and typing and communicating. In 2022 he started having to use an inhaler and November 22 at the age of 52 he was having a hard time holding his head up. They said it was arthritis.
By march of 2023 the hospital stays began and never ended and each hospital every time referred to the last hospital visits notes and said it was COPD. In August a neurologist finally saw him at a hospital and that was the first time someone mentioned ALS. No official diagnosis because it was continuous hospital stays.
By October I was told they had to do a tracheostomy or he would die so I chose trache. I have him at home full time no home health or anything and he just lost his ability to stand in the past month. He’s having a hard time breathing in ventilator and we are near the point that he won’t be able to text what he needs. He failed his last swallow test so back to tube feedings.
I have so many questions and don’t know what to expect next and if anyone knows how long it takes for social security approval. He was denied the first time and it’s been 10 months since the first time we applied. He was also denied long term disability because I couldn’t get any dr to fill out simple form. His short term disability ended in December. What can I do to speed up that process with social security if anything?
A nonprofit Hospice is coming this week to do assessment. I have so many questions and no answers. I also need a probate family law attorney for my husband who can help with his mothers will up in Dallas County desperately. If anyone has any helpful information. I can’t get one to call me back.
By March of 2021 his speech and swallowing was being affected with no answers. He continued to work but with frustration. He kept silent mostly about what he was going through like having a hard time driving and typing and communicating. In 2022 he started having to use an inhaler and November 22 at the age of 52 he was having a hard time holding his head up. They said it was arthritis.
By march of 2023 the hospital stays began and never ended and each hospital every time referred to the last hospital visits notes and said it was COPD. In August a neurologist finally saw him at a hospital and that was the first time someone mentioned ALS. No official diagnosis because it was continuous hospital stays.
By October I was told they had to do a tracheostomy or he would die so I chose trache. I have him at home full time no home health or anything and he just lost his ability to stand in the past month. He’s having a hard time breathing in ventilator and we are near the point that he won’t be able to text what he needs. He failed his last swallow test so back to tube feedings.
I have so many questions and don’t know what to expect next and if anyone knows how long it takes for social security approval. He was denied the first time and it’s been 10 months since the first time we applied. He was also denied long term disability because I couldn’t get any dr to fill out simple form. His short term disability ended in December. What can I do to speed up that process with social security if anything?
A nonprofit Hospice is coming this week to do assessment. I have so many questions and no answers. I also need a probate family law attorney for my husband who can help with his mothers will up in Dallas County desperately. If anyone has any helpful information. I can’t get one to call me back.
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