Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi, I have been lurking on the list for a little over a month and I thought it was time to tell my story. My Mother suddenly declined about 3 months ago. For about a year before this, I had noticed that she had some memory problems and she stopped driving. Also, I had noticed that she had some vision problems, but she has mild cataracts and I thought they were the cause, since she had just had an eye exam. About 3 months ago, she went from functional to non-functional almost overnight. She woke up with bladder pain (no UTI) and frequency. Even after we got that under control she continued to decline. We saw a neurologist who put her on Aricept. This didn't seem to help and only seemed to make her more agitated. She started having hallucinations and her vision problems got worse. My Father and I were trying to take care of my Mother. She stopped sleeping much, so we would alternate " sleeping " with her. In the middle of the night,she would get up and want to walk. She wasn't very steady and she would walk into things, so you had to follow her. We finally got someone to come in a night to stay with her and someone during the afternoon to give my Father a break. Mother got so agitated that she was hurting herself by banging her head on the floor and wrining her hands. I ended up with a few bruises myself. My Father and I were exhausted even with the extra help and it was costing more than the nursing home. We finally put her in a nursing home that is near by. They took her off of Aricept and some of her other non-essential medications. They also increased her Seroquel. Mother is now calmer. She doesn't like being in the nursing home and wants to come home and I would love to have her home. Sometimes it is so hard to leave her, but I know that my Father and I can't handle her. My Mother is under weight even though she eats a lot. Is this a common problem with LBD? in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi , I'm sorry to hear about your mother, I know how difficult it is to watch a parent decline so rapidly, it reallys seems unfair at times. My father is very underweight and we make sure he is eating well, I have asked this same question of others. I imagine it may have something to do with the LBD, his problem did not begin until other symptoms of LBD were present. Good Luck! Introduction Hi, I have been lurking on the list for a little over a month and I thought it was time to tell my story. My Mother suddenly declined about 3 months ago. For about a year before this, I had noticed that she had some memory problems and she stopped driving. Also, I had noticed that she had some vision problems, but she has mild cataracts and I thought they were the cause, since she had just had an eye exam. About 3 months ago, she went from functional to non-functional almost overnight. She woke up with bladder pain (no UTI) and frequency. Even after we got that under control she continued to decline. We saw a neurologist who put her on Aricept. This didn't seem to help and only seemed to make her more agitated. She started having hallucinations and her vision problems got worse. My Father and I were trying to take care of my Mother. She stopped sleeping much, so we would alternate " sleeping " with her. In the middle of the night,she would get up and want to walk. She wasn't very steady and she would walk into things, so you had to follow her. We finally got someone to come in a night to stay with her and someone during the afternoon to give my Father a break. Mother got so agitated that she was hurting herself by banging her head on the floor and wrining her hands. I ended up with a few bruises myself. My Father and I were exhausted even with the extra help and it was costing more than the nursing home. We finally put her in a nursing home that is near by. They took her off of Aricept and some of her other non-essential medications. They also increased her Seroquel. Mother is now calmer. She doesn't like being in the nursing home and wants to come home and I would love to have her home. Sometimes it is so hard to leave her, but I know that my Father and I can't handle her. My Mother is under weight even though she eats a lot. Is this a common problem with LBD? in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 ; Welcome to the board that I'm certain you've seen helps lots of people understanding this almost incomprehensible disease and how it affects our LOs. I may have missed it in your post but did your mom get " officially " diagnosed with LBD? Your story rings very familiar to me. My own dad declined very suddenly following a removal of a brain tumor that has since grown back. In his case, the anesthesia exacerbated his problem. In your mom's case, it appears as if nature itself is to blame for the sudden onslaught. Insofar as the weight is concerned, my dad has lost tonnes of weight. Before surgery (August 2003) my dad was almost 180 pds and very muscular. Today he's well under 160 and his muscles have lost their tone. My dad does eat albeit not as much as he used to - certainly nothing would suggest such a dramatic weight loss without even trying. I hope you feel you can post as often as you like . People here have truly helped me with this. I know having your mom in a nh isn't ideal but it sounds as if you were dealing with something far beyond your " lay " experience. Hopefully, in a nh, she can be tended to by people who are skilled at dealing with her physical problems and, by the same token, you and your dad can rest a bit. I'm so glad you found us . Abby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 Hi, Jayne, my name is Gail, 38 yrs old. I've had Still's all my life, too. Have had periods of remission, but have never totally been free from it. Maybe when they said yours wasn't active, it just meant you were in remission? Sometimes, I think us patients know more than the doctors do. Mine will even admit to that. Here's a list of my meds: Prednisone, Methotrexate, Welbutrin, Ritalin (for fatigue & daytime sleepiness), potassium, calcium, & numerous other drugs to counteract side effects of these. I have gone as long as 3 yrs in remission and actually got confident that I wouldn't have to deal with it anymore when it came slamming back. This flare has lasted almost 3 years. Right before, my husband and I thought it might actually be safe for us to have a baby. We talked to the OB & Rheumatologist, everyone okay'd it. Then, about a week & a half before I was scheduled to get my IUD removed, it was back. Welcome to our group and here's hoping that you will be better soon! Gail JAYNE MCCLOY wrote: hi everyone im jayne and im 40yrs old. ive had stills disease since age 2 but wasnt diagnosed until about age 14. had my first hip replacement at age 18 and have had seven more since then, the latest in march this year. very let down by the medical profession over the years, saw an rd for the first time when i was 25 didnt know they existed and have seen her once since then, this october. had my shoulders injected for the first time in october but right shoulder bad again. ive never had good pain relief, started mtx for first time in october and taking rheumalgan and paracetamol, my pains are actually getting worse and at times unbearable. im divorced with 2 children age 11 and 9 and at times its really hard going. i do try to keep on top of things and love meeting with friends and having a good laugh but after all these years of having stills, i still know very little about the disease and would love some answers if possible and why im starting to have so much pain when i was told a few years ago that my arthritis wasnt active any more....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 Hi Jayne, My name is & I'm 45 dianosed in March of this year after being sick off & on for 2 years. I'm sorry your here because of Stills but welcome to the group. You will find alot of information here as well as some wonderful new friends. There are alot of us who haven't had the best experience with the medical profession! Seems there are a lot of them that don't believe us, if that is the case or your not getting the help you feel you need & deserve I'd suggest looking differant doctors! You will get a lot of support here as well lots of very helpful information. Take Care, Chris JAYNE MCCLOY wrote: hi everyone im jayne and im 40yrs old. ive had stills disease since age 2 but wasnt diagnosed until about age 14. had my first hip replacement at age 18 and have had seven more since then, the latest in march this year. very let down by the medical profession over the years, saw an rd for the first time when i was 25 didnt know they existed and have seen her once since then, this october. had my shoulders injected for the first time in october but right shoulder bad again. ive never had good pain relief, started mtx for first time in october and taking rheumalgan and paracetamol, my pains are actually getting worse and at times unbearable. im divorced with 2 children age 11 and 9 and at times its really hard going. i do try to keep on top of things and love meeting with friends and having a good laugh but after all these years of having stills, i still know very little about the disease and would love some answers if possible and why im starting to have so much pain when i was told a few years ago that my arthritis wasnt active any more....... Quote Link to comment Share on other sites More sharing options...
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