"End Stage MS"
Posted: Thu Aug 05, 2010 5:53 pm
Hello all, My mom has something called "end stage MS" and she currently stays at a long term care facility since summer of 09.
I guess to sum up my mom's story short, she's had symptoms of MS since having me in 1984, and she wasn't officially diagnosed until 1992. She had a progressive form of MS because she as she weakened(need a walker then a wheelchair) within a 6 month period she just kept getting worse until she didn't have any moments where she could walk again.
As the years passed, her eyes worsened and she was diagnosed "legally blind" so she couldn't drive.
I can't state every single medication she was on because I didn't know them all when I was a kid. I can say though that every 3 months she would go to get these "infusions" which were some kind of medication they would run through an IV to her for about 3 hours. She stopped using that after a few years and I don't know why for sure, my dad would probably know.
She would take a steroid long term called Predisone(sp) I guess it was supposed to help with her spasms and she never wanted to go off them for some reason even though she still had the spasms. I think she thought they were helping her and who knows, maybe they did help her in the beginning.
She took Paxil for anti-depressant.
The weirdest part of her disease was probably the last 7 years she lived with us, she started having uncontrollable bits of laughter and crying and it used to freak me out. I would always ask her what's wrong or, and she would get upset at me for for asking her.
I learned to deal with those moments she had, but then she started "hearing voices" and talking to herself and I knew something wasn't right. I always told my dad when she goes to see the Neurologist to ask him about these issues she's having. She would always deny that she talked to herself saying that she had the ability to communicate with ghosts or invisible people. She also developed paranoia and she told me numerous times each day that the neighbors were after her and that she needs to move out of the house. She would have the doors locked, windows locked every single day, and it was very difficult for me to care for her at this point. I didn't what else to do or who to turn to. My dad was always saying she's fine and there's nothing wrong with her.
So this last year, she was pretty much bedridden(she had overcame a serious skin ulcer that developed from her sitting in her wheelchair and having limited mobility) and she started getting really weak within a month span she lost her ability to use her voice and lost her ability to swallow on her own.
The result has been that she currently at a long term care facility, on a feeding tube, she seems to be awake and breathing normally but she's not able to really move her limbs anymore or her arms .
The story is very depressing, but I don't know where else to post this and see if I get any sort of answers or comments. I dont really know where to go from here, she's on hospice care right now and that's been fine I guess. I just want to know if anybody else knows any people that have had this very severe form of MS or know anybody with these type of MS and if you do, what does the family do to cope with this?
I really don't understand how she got so bad since 1992. The neurologists don't seem to have any answers for me or my dad, the doctors don't even understand it. It was so difficult to just find her a long term care facility because nobody wanted to take her in. The hospital rejected her as soon as she's out of ICU and it's very upsetting for the family to go through.
I really don't know anybody who has gone through this except for I know a lot of MS patients I meet, they are walking and talking and look like they don't have it. It really makes me angry because I always ask myself how come my mom can't be like them?
Again I'm sorry for the long rant but I just wanted to put it all out there and see if people had any information they could share for me or knew anything about End Stage MS so I didn't feel like my mom was the only one who was suffering from this.
Any response is appreciated and thanks for reading
I guess to sum up my mom's story short, she's had symptoms of MS since having me in 1984, and she wasn't officially diagnosed until 1992. She had a progressive form of MS because she as she weakened(need a walker then a wheelchair) within a 6 month period she just kept getting worse until she didn't have any moments where she could walk again.
As the years passed, her eyes worsened and she was diagnosed "legally blind" so she couldn't drive.
I can't state every single medication she was on because I didn't know them all when I was a kid. I can say though that every 3 months she would go to get these "infusions" which were some kind of medication they would run through an IV to her for about 3 hours. She stopped using that after a few years and I don't know why for sure, my dad would probably know.
She would take a steroid long term called Predisone(sp) I guess it was supposed to help with her spasms and she never wanted to go off them for some reason even though she still had the spasms. I think she thought they were helping her and who knows, maybe they did help her in the beginning.
She took Paxil for anti-depressant.
The weirdest part of her disease was probably the last 7 years she lived with us, she started having uncontrollable bits of laughter and crying and it used to freak me out. I would always ask her what's wrong or, and she would get upset at me for for asking her.
I learned to deal with those moments she had, but then she started "hearing voices" and talking to herself and I knew something wasn't right. I always told my dad when she goes to see the Neurologist to ask him about these issues she's having. She would always deny that she talked to herself saying that she had the ability to communicate with ghosts or invisible people. She also developed paranoia and she told me numerous times each day that the neighbors were after her and that she needs to move out of the house. She would have the doors locked, windows locked every single day, and it was very difficult for me to care for her at this point. I didn't what else to do or who to turn to. My dad was always saying she's fine and there's nothing wrong with her.
So this last year, she was pretty much bedridden(she had overcame a serious skin ulcer that developed from her sitting in her wheelchair and having limited mobility) and she started getting really weak within a month span she lost her ability to use her voice and lost her ability to swallow on her own.
The result has been that she currently at a long term care facility, on a feeding tube, she seems to be awake and breathing normally but she's not able to really move her limbs anymore or her arms .
The story is very depressing, but I don't know where else to post this and see if I get any sort of answers or comments. I dont really know where to go from here, she's on hospice care right now and that's been fine I guess. I just want to know if anybody else knows any people that have had this very severe form of MS or know anybody with these type of MS and if you do, what does the family do to cope with this?
I really don't understand how she got so bad since 1992. The neurologists don't seem to have any answers for me or my dad, the doctors don't even understand it. It was so difficult to just find her a long term care facility because nobody wanted to take her in. The hospital rejected her as soon as she's out of ICU and it's very upsetting for the family to go through.
I really don't know anybody who has gone through this except for I know a lot of MS patients I meet, they are walking and talking and look like they don't have it. It really makes me angry because I always ask myself how come my mom can't be like them?
Again I'm sorry for the long rant but I just wanted to put it all out there and see if people had any information they could share for me or knew anything about End Stage MS so I didn't feel like my mom was the only one who was suffering from this.
Any response is appreciated and thanks for reading