tawill
Member
- Joined
- Oct 19, 2014
- Messages
- 20
- Reason
- PALS
- Diagnosis
- 10/2014
- Country
- Uni
- State
- IL
- City
- Vienna
Thank you to all for your comments. The clinic visit was truly a rollercoaster ride. I agree that we are so lucky to have such multidisciplinary clinics to frequent, and help us with our needs. I was not really ready to hear some of the things they had to tell me. Other things made me happy and were reassuring. Due to my recumbent MIP, they want me to go on BiPap. My seated and standing values were all ok. I am having a hard time digesting this. They told me it would help preserve my diaphragm, and hopefully not progress as fast. Since my onset has been Bulbar, most of my problems are of course in my speech, swallowing, chewing etc as I mentioned in earlier post. I think since I have no limb symptoms, I was expecting them to tell me I really didn't need to be there yet. I know this was an unrealistic expectation, but I am an eternal optimist most of the time. I am not normally a crybaby either, but anytime I watch any of the videos and continue to educate myself, I just boo hoo until I can't hardly breathe. It is not inappropriate timing, but it feels so close to the deep grief I have felt when I lost each of my sons in auto accidents. Have you felt this gut wrenching also? It has been a month since my DX, and I'm just not reacting like I would think. I guess I haven't accepted it yet. My questions besides the serious grief feeling are: Anyone on Riluzole? Comments about it? How about Thick IT. They recomended some kind of thickening agent too. Thanks in advance