Miss
Very helpful member
- Joined
- Apr 11, 2010
- Messages
- 1,782
- Reason
- Lost a loved one
- Diagnosis
- 04/2010
- Country
- US
- State
- In the Land of Cotton
- City
- Way Down South
Tomorrow (actually today - it's late) is our first ALS clinic appointment. I'm not sure what to expect. I feel like I have done so much research, but still have no idea what will happen next with this disease. As I have said before, my husband is declining rapidly. I am so afraid something is going to happen, especially in regards to eating and breathing, and we will not be prepared for it. Are they going to tell me when we need to meet with a pulmonologist and a gastroenterologist? We are still waiting for the VA to approve us, so I'm not sure what services will be available through them. Right now, we have private insurance as my husband is still on short term disability. SSDI has not been approved yet, but we won't move to long term disability until October. I do wish there was some sort of manual that gave the caregiver a basic idea of what is going to happen! I feel so lost!