AKNate
Distinguished member
- Joined
- Oct 25, 2016
- Messages
- 181
- Reason
- Loved one DX
- Diagnosis
- 10/2016
- Country
- AUS
- State
- NSW
- City
- Sydney
Hi All,
I'm having a really down day and need some help... and probably hugs.. i don't know.
Here's a bit about us: My husband had his first symptoms 5 years ago in his calf muscles. Since then it pretty much stayed where it started, calf muscles. His toes are slightly affected, his knees a little bit but that's kinda it. He can still walk, stairs are hard but he can do it with a rail. His ankle strength tests were consistent across all the years.
Almost a year ago we got the diagnosis via genetic testing that he is SOD1... there is no way of escaping a genetic test. It's real. The doctors said he should progress at the speed he was previously progressing.
Straight after diagnosis he noticed his thumb was acting up. A few months later his pointer fingers became weak and now his pinky.
He has been on medicine since the diagnosis and even started Edaravone. I'm just so angry that this stupid disease is progressing in a manner we didn't expect. I didn't think his next progression would be in his hands, i didn't think his next progression, given we are using medicine now, would even be for a few years. I'm wrong. And i am SO sad. I don't know what to do with my head space.
I don't know how i can live without my husband. I know i can be strong for him during all of this but it is going to BREAK me inside.
People are telling me to go speak to a councilor... I don't want to. How can they help me? Will they offer a cure? Will they offer me hope? Will they give me happiness? I know all the tricks to get through today - live in the now, focus on what we have now, don't future grieve etc etc etc... I don't need another lesson in that. What we all need is a cure.
Thanks for reading my rant...
I'm having a really down day and need some help... and probably hugs.. i don't know.
Here's a bit about us: My husband had his first symptoms 5 years ago in his calf muscles. Since then it pretty much stayed where it started, calf muscles. His toes are slightly affected, his knees a little bit but that's kinda it. He can still walk, stairs are hard but he can do it with a rail. His ankle strength tests were consistent across all the years.
Almost a year ago we got the diagnosis via genetic testing that he is SOD1... there is no way of escaping a genetic test. It's real. The doctors said he should progress at the speed he was previously progressing.
Straight after diagnosis he noticed his thumb was acting up. A few months later his pointer fingers became weak and now his pinky.
He has been on medicine since the diagnosis and even started Edaravone. I'm just so angry that this stupid disease is progressing in a manner we didn't expect. I didn't think his next progression would be in his hands, i didn't think his next progression, given we are using medicine now, would even be for a few years. I'm wrong. And i am SO sad. I don't know what to do with my head space.
I don't know how i can live without my husband. I know i can be strong for him during all of this but it is going to BREAK me inside.
People are telling me to go speak to a councilor... I don't want to. How can they help me? Will they offer a cure? Will they offer me hope? Will they give me happiness? I know all the tricks to get through today - live in the now, focus on what we have now, don't future grieve etc etc etc... I don't need another lesson in that. What we all need is a cure.
Thanks for reading my rant...