BigSista
New member
- Joined
- Sep 3, 2010
- Messages
- 9
- Reason
- Loved one DX
- Country
- US
- State
- Oregon
- City
- Portland
I'm new to this site and this forum and I'm happy to have a place to go and ask questions. I know very little about this disease, but I am learning and willing to learn more. My sister was diagnosed a few months ago. Her left leg is largely affected and she wears a brace. Her arms and right leg are not yet affected, however, she does have fasciculation occurring in her other leg and sometimes her arms (I think). Maybe her ALS is slow in progression....who's to know?
Right now we're waiting (sometimes I wonder for what) but we decided to wait for another limb to be affected before we move in together. Is that crazy? We have no idea how quickly the disease is progressing. I feel like I'm at a standstill and should be doing something. At other times I feel that I need to just stand still, be supportive, and the right time will present itself and we will move forward from there.
I was hoping to have a family of caregivers....the truth is the family isn't really willing to give up too much of their lives and honestly, they're young kids in their 20's and I remember what that was like and how important my life was to me during those years. In my dreams I imagined something along the lines of "it takes a village" but it might just take a couple of sisters and brother to get this thing done and that will be our village.
My sister with ALS and I are in Oregon...another sister in San Francisco and a brother in Japan, both of whom have been tremendous supports.
Any feedback, advice or whatever-whatever is welcome and appreciated.
Right now we're waiting (sometimes I wonder for what) but we decided to wait for another limb to be affected before we move in together. Is that crazy? We have no idea how quickly the disease is progressing. I feel like I'm at a standstill and should be doing something. At other times I feel that I need to just stand still, be supportive, and the right time will present itself and we will move forward from there.
I was hoping to have a family of caregivers....the truth is the family isn't really willing to give up too much of their lives and honestly, they're young kids in their 20's and I remember what that was like and how important my life was to me during those years. In my dreams I imagined something along the lines of "it takes a village" but it might just take a couple of sisters and brother to get this thing done and that will be our village.
My sister with ALS and I are in Oregon...another sister in San Francisco and a brother in Japan, both of whom have been tremendous supports.
Any feedback, advice or whatever-whatever is welcome and appreciated.