cubcake
Distinguished member
- Joined
- Jul 18, 2011
- Messages
- 271
- Reason
- Lost a loved one
- Diagnosis
- 10/2011
- Country
- US
- State
- Ca
- City
- San Ramon
Hi there. I've been lurking on this site for a few weeks, and finally have the courage to write. I don't know if I'm just having a really bad day, or ......I don't know.
I truly believe my husand has Bulbar Onset ALS. His speech started to slur a little over a year ago. At this point, I think I'm the only one who can make out a few words every now and again. Now, he sleeps 14 hours a day, has twitching arms, a crazy gag reflex, chokes on food and drink and has pretty extreme emotional lability. He still works full time, because he doesn't want to be alone. I work within feet of him. Everyone at work loves him so much, I'm sure they would let me wheel him in on a hand cart, if that's what he wanted.
We've been to the Neurologist (Kaiser), who didn't find anything, so she sent us to UCSF for studies being conducted for FTD. They are observatory in nature only, so they just run tests and compare them to other patients. We are more a tool for than they are for us. They also don't acknowledge symptoms that don't seem to fit the picture they want. We have no appointments with anyone for the next 6 to 9 months.
In the mean time, I'm just watching him go down hill, and he's in total denial. He thinks, whatever he has, will get 'better.'
I'm at a loss and I don't know where to turn.
I truly believe my husand has Bulbar Onset ALS. His speech started to slur a little over a year ago. At this point, I think I'm the only one who can make out a few words every now and again. Now, he sleeps 14 hours a day, has twitching arms, a crazy gag reflex, chokes on food and drink and has pretty extreme emotional lability. He still works full time, because he doesn't want to be alone. I work within feet of him. Everyone at work loves him so much, I'm sure they would let me wheel him in on a hand cart, if that's what he wanted.
We've been to the Neurologist (Kaiser), who didn't find anything, so she sent us to UCSF for studies being conducted for FTD. They are observatory in nature only, so they just run tests and compare them to other patients. We are more a tool for than they are for us. They also don't acknowledge symptoms that don't seem to fit the picture they want. We have no appointments with anyone for the next 6 to 9 months.
In the mean time, I'm just watching him go down hill, and he's in total denial. He thinks, whatever he has, will get 'better.'
I'm at a loss and I don't know where to turn.