Aswanson
Active member
- Joined
- Mar 1, 2016
- Messages
- 33
- Reason
- CALS
- Country
- US
- State
- NH
- City
- Wakefield
Hi...while I've visited the other boards and even posted, this is my first time posting to the CALS board. This past week my husband got his official diagnosis of progressive bulbar palsy.
About us- We live in NH. I'm a stay at home mom, 3 kids - 2 are from my prior marriage (21 & 17) and we have a 7 yr old daughter together who was born with congenital glaucoma and is visually impaired.
About 18 months ago hubby started producing excess saliva to the point it was just running out of his mouth, a few months after that it was causing him to choke at night...then there were other symptoms that popped up, but months apart so we never put any of them together until Dec when he started having this feeling in his throat, started choking on liquids/foods and then in Jan when his voice began to change (a mumbled word here and there at first, then a slurred word, then full blown- all within a couple weeks) When I took him into the hospital at the end of Jan they had found he had had a mini stroke a few weeks prior, so much time was spent trying to figure out the cause of that. Since Jan his voice has deteriorated- he can't pronounce many syllables, things are mumbly/strained/slurred and sometimes so bad I can't even understand what he said. He doesn't talk much these days as after about 15-20 mins his muscles are fatigued and his voice is hoarse. His face, tongue and throat muscles have gone drastically down hill as well. His tongue is atrophied and has fasciculations and he can't move it very much at all to manipulate his food. If he talks too much he has more trouble swallowing and has a higher choking risk.
As of his last appointment everything looked good below the neck, which is good. Coming up he is getting baselines for everything to monitor him as we move forward and nutrition consult as he keeps losing weight....this seems to be our biggest battle. (Jan-198lb ; current-176lb most within the past couple months)
He had been on FMLA pretty much since the end of Jan, but went back to work this past Thursday to see if he can work a little bit longer. I worry about his fatigue and him being able to get his nutrition in while at work since he's on the road all day long. If anyone has any ideas of soft, mushy, high protein/high fat, transportable foods- I would be grateful!
I thought when we went through our daughters diagnosis THAT was going to be our crisis.....who knew there was more to come in our future.
~Amy
About us- We live in NH. I'm a stay at home mom, 3 kids - 2 are from my prior marriage (21 & 17) and we have a 7 yr old daughter together who was born with congenital glaucoma and is visually impaired.
About 18 months ago hubby started producing excess saliva to the point it was just running out of his mouth, a few months after that it was causing him to choke at night...then there were other symptoms that popped up, but months apart so we never put any of them together until Dec when he started having this feeling in his throat, started choking on liquids/foods and then in Jan when his voice began to change (a mumbled word here and there at first, then a slurred word, then full blown- all within a couple weeks) When I took him into the hospital at the end of Jan they had found he had had a mini stroke a few weeks prior, so much time was spent trying to figure out the cause of that. Since Jan his voice has deteriorated- he can't pronounce many syllables, things are mumbly/strained/slurred and sometimes so bad I can't even understand what he said. He doesn't talk much these days as after about 15-20 mins his muscles are fatigued and his voice is hoarse. His face, tongue and throat muscles have gone drastically down hill as well. His tongue is atrophied and has fasciculations and he can't move it very much at all to manipulate his food. If he talks too much he has more trouble swallowing and has a higher choking risk.
As of his last appointment everything looked good below the neck, which is good. Coming up he is getting baselines for everything to monitor him as we move forward and nutrition consult as he keeps losing weight....this seems to be our biggest battle. (Jan-198lb ; current-176lb most within the past couple months)
He had been on FMLA pretty much since the end of Jan, but went back to work this past Thursday to see if he can work a little bit longer. I worry about his fatigue and him being able to get his nutrition in while at work since he's on the road all day long. If anyone has any ideas of soft, mushy, high protein/high fat, transportable foods- I would be grateful!
I thought when we went through our daughters diagnosis THAT was going to be our crisis.....who knew there was more to come in our future.
~Amy
