melalthia
Active member
- Joined
- Feb 10, 2010
- Messages
- 56
- Reason
- Loved one DX
- Country
- US
- State
- California
- City
- Boulder Creek
Hi there...
It's been months and months since i visited the forums. *waving to those who may remember me*
Just an update for those of you who don't remember. My mom was diagnosed with a MND in Feb 2010. She was starting to slur then and our doc who is the head of neurology at UCSF recognized it as bulbar palsy but we weren't sure which one. My mom freaked and stopped all testing but unfortunately it didn't stop progression. She refuses all interventions including peg tube or bi pap. To this day, even with her progression and everything she's been through, she refuses any kind of intervention beyond saliva medicine.
In the beginning, it was slow. She moved in to our grandmother unit on the property May 2010. She lost her speech that summer. Her swallowing and coughing progressed where even with blended food she can barely get anything down.
The family pooled our resources and we took her to France in september for 3 weeks. It had been her dream to visit Europe and to do it in style so I dipped into our 401k to do it. Hard trip, but worth it.
She dwindled down in weight and by xmas 2010 and we figured she was losing about 8 pounds a month. Through it all, it's been hard to get real information on her progress because she refuses to talk to us about it. She refused to learn how to use communication devices.. insisting instead to write on a pad of paper. We were sure were going to lose her by January. But she managed to rally and has been "stable" at 100 pounds for months now. Through it all, she refused any help (not wanting to be a burden to us) asked us to respect her privacy and has been managing on her own.
But we have hit the point of no return. She's starting to lose her hands. She can barely lift a 5 pound plate onto the counter top. THe other day she went to my daughter's soccer practice. She was sitting on the ground, and my husband had to lift her almost all the way on her feet before she could actually stand up. We have contacted our local hospice folks and also our ALS manager for advice. Our hospice manager is awesome and completely sensitive to the fact my mom isn't ready to think about hospice yet.. so she's basically just arranging "house keepers" for her. It will take 4 weeks for in home services to kick in. In the meantime, it's nice to know we aren't alone anymore. Also my mom's (who is already on medicare) just qualified for full Medi-Cal and between both of those.. we are covered for whatever happens next. Good thing too.. I'm working two jobs to keep her and my husband with two small kids afloat.
It's been quite a ride so far, and it's going to get worse soon. I'm trying to hold it together. We're pretty scared. But today my husband asked for help from my family when i could not.. so I don't feel so responsible for everybody. I feel strangely calm.
Anyhoo.. hi again.
It's been months and months since i visited the forums. *waving to those who may remember me*
Just an update for those of you who don't remember. My mom was diagnosed with a MND in Feb 2010. She was starting to slur then and our doc who is the head of neurology at UCSF recognized it as bulbar palsy but we weren't sure which one. My mom freaked and stopped all testing but unfortunately it didn't stop progression. She refuses all interventions including peg tube or bi pap. To this day, even with her progression and everything she's been through, she refuses any kind of intervention beyond saliva medicine.
In the beginning, it was slow. She moved in to our grandmother unit on the property May 2010. She lost her speech that summer. Her swallowing and coughing progressed where even with blended food she can barely get anything down.
The family pooled our resources and we took her to France in september for 3 weeks. It had been her dream to visit Europe and to do it in style so I dipped into our 401k to do it. Hard trip, but worth it.
She dwindled down in weight and by xmas 2010 and we figured she was losing about 8 pounds a month. Through it all, it's been hard to get real information on her progress because she refuses to talk to us about it. She refused to learn how to use communication devices.. insisting instead to write on a pad of paper. We were sure were going to lose her by January. But she managed to rally and has been "stable" at 100 pounds for months now. Through it all, she refused any help (not wanting to be a burden to us) asked us to respect her privacy and has been managing on her own.
But we have hit the point of no return. She's starting to lose her hands. She can barely lift a 5 pound plate onto the counter top. THe other day she went to my daughter's soccer practice. She was sitting on the ground, and my husband had to lift her almost all the way on her feet before she could actually stand up. We have contacted our local hospice folks and also our ALS manager for advice. Our hospice manager is awesome and completely sensitive to the fact my mom isn't ready to think about hospice yet.. so she's basically just arranging "house keepers" for her. It will take 4 weeks for in home services to kick in. In the meantime, it's nice to know we aren't alone anymore. Also my mom's (who is already on medicare) just qualified for full Medi-Cal and between both of those.. we are covered for whatever happens next. Good thing too.. I'm working two jobs to keep her and my husband with two small kids afloat.
It's been quite a ride so far, and it's going to get worse soon. I'm trying to hold it together. We're pretty scared. But today my husband asked for help from my family when i could not.. so I don't feel so responsible for everybody. I feel strangely calm.
Anyhoo.. hi again.
