pfd161
Member
- Joined
- Dec 31, 2018
- Messages
- 13
- Reason
- CALS
- Diagnosis
- 01/2019
- Country
- US
- State
- ME
- City
- Sanford
My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation.
The first few days were spent crying/ holding her. She now seems to be in the "Let's not talk about it" stage. I think this is her way of dealing with it...deep down she knows her diagnosis but if she doesn't talk about it it seems less real?
Her Doctor, Sabrina Paganoni, has an impressive resume, Both a Phd and an MD, Clinical researcher, has been involved in many ALS trials. We discussed nothing at the appointment, basically just confirming the diagnosis and getting her history, getting her started on Riluzole, and seeking approval for the IV medication. I'm guessing she could tell Sharon was overwhelmed and terrified, and that more info would just not be remembered. Probably a good way to go I guess..
I got her a rollator walker, mostly because she is terrified walking right now, her left ankle is still in a boot from a fall and ankle fracture. It's mostly healed and she is starting to walk on it some.
I guess I don't know what to do next? We have an appointment in a month at the clinic. She will see the NP this visit. Everyone has been fantastic at offering help...we will see who comes through for us.
The first few days were spent crying/ holding her. She now seems to be in the "Let's not talk about it" stage. I think this is her way of dealing with it...deep down she knows her diagnosis but if she doesn't talk about it it seems less real?
Her Doctor, Sabrina Paganoni, has an impressive resume, Both a Phd and an MD, Clinical researcher, has been involved in many ALS trials. We discussed nothing at the appointment, basically just confirming the diagnosis and getting her history, getting her started on Riluzole, and seeking approval for the IV medication. I'm guessing she could tell Sharon was overwhelmed and terrified, and that more info would just not be remembered. Probably a good way to go I guess..
I got her a rollator walker, mostly because she is terrified walking right now, her left ankle is still in a boot from a fall and ankle fracture. It's mostly healed and she is starting to walk on it some.
I guess I don't know what to do next? We have an appointment in a month at the clinic. She will see the NP this visit. Everyone has been fantastic at offering help...we will see who comes through for us.