Islander1019
New member
- Joined
- Jun 26, 2018
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 05/2018
- Country
- US
- State
- CA
- City
- San Jose
Hello Everyone, we’re having a really rough day today so I decided it’s time for me to reach out. My husband got his first diagnosis 5/21/18 and a second opinion confirmed it 6/14.
He started noticing weakness in his arms on one side just after Thanksgiving. It then progressed to the other side. We got married at the end of March. By the time my insurance kicked in (he’s retired) in mid April we were becoming really concerned. He had an MRI of the brain and the spinal cord and an EMG with the first neurologist who told us he was 99% sure it was ALS. The second doc did a bunch of rule out blood tests and more extensive EMG testing all of which confirmed the initial diagnosis.
We are both devastated (and who isn’t right?)
The thing is, I’m an extrovert and he’s an introvert. I have a huge support network. He has a very supportive family, but they’re on the east coast. He just moved here 2 years ago. He doesn’t want anyone to know. Not our best friends, not our pastor, not even my dad! I have not been able to comply with those wishes because I need support.
He is really angry with me about this. I am trying not to respond with anger. I know it’s not about me. But I need support too. I would really appreciate hearing how I can best support him now while we get our arms wrapped around this.
Oh, and I forgot to mention, he told me today he isn’t ready to talk to anyone about this. The only person who has talked to him about it is my dad, who loves him very much.
The problem is, he won’t talk to me about it either and doesn’t want to read, go to therapy, or even really talk to the doctors. I am reading tesearching and planning for the future, but I need to be able to talk to the people I know care about us. I am just feeling so sad today.
He started noticing weakness in his arms on one side just after Thanksgiving. It then progressed to the other side. We got married at the end of March. By the time my insurance kicked in (he’s retired) in mid April we were becoming really concerned. He had an MRI of the brain and the spinal cord and an EMG with the first neurologist who told us he was 99% sure it was ALS. The second doc did a bunch of rule out blood tests and more extensive EMG testing all of which confirmed the initial diagnosis.
We are both devastated (and who isn’t right?)
The thing is, I’m an extrovert and he’s an introvert. I have a huge support network. He has a very supportive family, but they’re on the east coast. He just moved here 2 years ago. He doesn’t want anyone to know. Not our best friends, not our pastor, not even my dad! I have not been able to comply with those wishes because I need support.
He is really angry with me about this. I am trying not to respond with anger. I know it’s not about me. But I need support too. I would really appreciate hearing how I can best support him now while we get our arms wrapped around this.
Oh, and I forgot to mention, he told me today he isn’t ready to talk to anyone about this. The only person who has talked to him about it is my dad, who loves him very much.
The problem is, he won’t talk to me about it either and doesn’t want to read, go to therapy, or even really talk to the doctors. I am reading tesearching and planning for the future, but I need to be able to talk to the people I know care about us. I am just feeling so sad today.
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