Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Gwen, thank you for this. I've started having tremors in my right thumb (never had this before - I know, I may be for nothing here but I was curious to see how the tremors began in others. Courage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Patti, thank you for this. I'm starting to get a bit concerned here as I am having tremor in my right thumb and first finger. Should I be concerned here? Courage Re: Hand tremors >Hello Courage, > I thank you for this discussion. My tremors have always been >somewhat as a mystery to me. I never know one hour to the next what >they will be like. > >It was the starting of a tremor in my right hand that was consistent >with the Pillrolling rest tremor that was what finally the Dr. >decided It was PD of some sort. It was negligible at first and even >gone a good deal of the time. It started in my thumb and first finger. >Later I noticed my small finger seemed to jerk and shake even worse >than the thumb and finger. At times I would have a general shaking in >both hands. Now it is much worse, but still variable. It is always >there it seems and gets to a point where it involves not only my >hands, but my arms as well. No longer can I stop it by sitting on my >hands as my arm then shakes. I have developed habits to mask my >symptoms, but they are not working as good as they did. lol >My diagnosis of PD came in 1996. I had the other symptoms, but due to >my age and with the tremor being absent he would not give me that >diagnosis. Anyway back to the Tremor I now have tremor not only in my >hands and arms, but in all extremities and always varying in >severity. Jerky movements are also unpredictable, but not frequent. > >I hope this helps you. I don't think eveyone is the same on this >either and everyone seems to be different. I apprciate your >asking...Hugs...Patti > > > >> Hello All and Patti especially, >> >> Can some of you share you stories about your LO's hand tremors - >when did you notice them and how did they start - total hand tremor >or a finger or two at a time? >> Courage >> >> Please follow this link to learn more about Lewy Body Dementia >> http://www.lewybodydementia.org >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Thanks Patti, you've given me a lot to think about here. At this moment my left ankle is in an ace bandage - huge pain. I've had joint pain for over a year now (legs, arms, shoulders) yet the doctors can't decide what it is that is causing the pain. I usually take codiene for the pain but it doesn't always work. I've noticed the tremor while at rest and while using my hand. Now I don't mean to be morbid or dramatic here but I'm pretty certain that I will probably get LBD or maybe AD or PD. The reason I mention this is because a while back we were discussing how interesting it will be to see who in this group will end up with the disease. I decided then that I wasn't going to spend the rest of my life worrying about it as there is nothing I can do at this point in time to make it stop. I'm keeping track of my symptoms/illnesses - depression and tremors - an any others that crop up so that I can get dx quickly. At some point in the future I will get a check up but wouldn't know what to ask the doctor to check for or what tests to ask for. Any suggestions? Courage Re: Hand tremors >Hi Courage, >Do you have anything else going on, like stiffness or slowness of >movement, short steps, problems with falls or balance? Can you put >one foot in front of the other or stand on one foot? Could you pass a >drunk test if stopped by a policeman? Do you have any pain anywhere? >What other symptoms might you have for PD or LBD. I think anytime a >person is concerned about something like this it needs to be checked >out by a qualifying neurologist. One who is well educated in the area >and preferably a movement specialist as well. If nothing else it will >ease your mind. Is your Tremor constant or does it come and go? Is it >at rest or is it on using your hand or fingers? I wouldn't toatally >dismiss it, but watch for other things and increase. My tremor has >increased and spread very slowly.....Hopes this helps and I hope all >is benign.....Hugs...Patti > > > >> >> Hello All and Patti especially, >> >> >> >> Can some of you share you stories about your LO's hand tremors - >> >when did you notice them and how did they start - total hand tremor >> >or a finger or two at a time? >> >> Courage >> >> >> >> Please follow this link to learn more about Lewy Body Dementia >> >> http://www.lewybodydementia.org >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 courage, dads tremors started on his right side, started out first that he complained about it at least, was his right hand, it was worse when he tried to grip something, like getting a pan out of the oven, his right hand would shake and then he would lose his grip totally. when we moved here in jan 2003, his whole right arm up to shoulder would shake uncontrollably, didnt last too long, tho it seemed a life time to him about 3 -5 minutes usually, sort of like waves coming into shore, really bad shakes then down to slight shakes, varying in degrees for about 5 minutes. over the next year, he had it in both arms, but rarely at same time, his right side seems to be the worse effected tho. that was until this past may when the tremors started in his right eyebrow and went up over his head down his entire left side and the waves of tremors wouldnt stop, so that is when i put him in the hosp. withe xelon tho te tremors seem to be a little more controlled, and he hasnt complained about it as much. but i know he still has them he thinks he hides them by holding his arm when i go by his room. but the waves are not as severe, that i do know for sure. ihpe this helps, s. a smile a day keeps the meanies away!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Courage, Dad has developed a tremor predominately in his right hand. It started with the thumb and forefinger in his right hand about 2 years ago. In about the last six months his right hand really shakes. The fingers that were first affected are now going in a pilling motion. When dad was in nh his bed had a half side and he would reach over to hold onto the side and the tremor would start and shake the side. The neuro has just started dad on sinemet and it has quieted the tremor slightly but it has only been 3 weeks on a low dose of sinemet and may quiet it more. We'll will have to wait and see. Gwen Hand tremors Hello All and Patti especially, Can some of you share you stories about your LO's hand tremors - when did you notice them and how did they start - total hand tremor or a finger or two at a time? Courage Please follow this link to learn more about Lewy Body Dementia http://www.lewybodydementia.org<http://www.lewybodydementia.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 My mom has hand tremors - total hand rather than just a finger or two - primarily in her left hand (she is right-handed) and not all the time. I probably started noticing this about two years ago. I just assumed, of course, that it was PD since my grandmother had bad hand tremors and while I don't know if she was ever diagnosed, I always assumed she (grandmother) had Parkinson's. Last winter, our doctor prescribed Amantadine for my mom but it was not at all helpful and then - when my mom was in the hospital in the beginning of July - she was tested and - lo and behold - she does not have Parkinson's Disease! Since I do not have POA, I doubt I could ever convince the two POAs to have my mom diagnosed again to see if she has LBD. I AM hoping that we can all agree on the merits of a brain autopsy after my mom dies. I don't even care that much about knowing the exact diagnosis (especially after my mom is dead) but brain autopsies are a valuable researchy tool and I, for one, want to do anything I can to help with research that might find a cure for these diseases. On another note - Sandie - bravo to you for allowing your father to control his life - and his death! And - Patti - bravo to YOU for your courage and for wanting to learn as much as you can about what is facing you! carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Hi My Mom's hand tremors started about 6 yrs ago. She would be carrying something and all of a sudden her hand would jerk and whatever it was would go flying. We thought she had a pinched nerve. But it progressively go worse. Now though it seems to only really shake when she is upset, same with her chin and her leg. Its her right hand and right leg that tremor most. Hope this helps. Jacqui Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Dear Courage The dreaded tremors!!! How many times did I hear the 'experts' tell me that tremors were NOT an LBD symptom???!!! I got so darn angry! 'Not typical' for LBD they kept saying and yet my dad was tormented by these blasted tremors throughout. His didn't start in his hands or arms .... it was much more subtle than that! It was my mom who first started noticing the tiniest of tremors when my dad was asleep. As he lay in bed his head would rhythmically rock very gently from side to side. It kept her awake. Then she noticed the same rocking tremor as he sat asleep in the chair or watched TV. He was not aware of it himself - at first. She had to move out into a separate bedroom - his tremor and restless leg movements and thrashing night sweats forced her out. Eventually we all 'saw' it because it got more pronounced and was in his neck too. Tiny tick movements - all in perfect rhythm. This is why my mom feared the onset of Parkinson's. This all started being 'visible' from about 5 years before he died. Then as the disease progressed the tremor was my dad's greatest humiliation and torment. It now affected his whole left arm and hand. Sometimes it was just 2 or 3 fingers ... sometimes just the hand. On really bad days he thrashed his side, you could hear him pounding himself all through the house. It was sheer hell. It got even worse if he was trying to eat with a knife and fork, or shave, or write. I was repeatedly told that tremors were rare in LBD patients - and couldn't be as bad as I described! 'They' told me it was dad's stress!!! But eventually they saw for themselves how severe they became and put my dad on Dopamine to try to calm them - BUT he just flipped on that and got insanely aggressive! In the end we had to live with them. NOTHING helped - he died with a huge bruise on his foreheadwhere he had tremored so bad he had repeatedly bashed his head against his cot sides. My experience has convinced me that the 'experts' are wrong about LBD and tremors. I think that tremors are far more prevalent than first understood to be. These tremoring episodes came in waves - some days he was more 'still' than others. You could never predict if we were in for a bad day or a calmer day. That's my opinion anyway! In a nutshell; yes, tremors DO happen. They can start small and might get very bad. But who knows .... some NEVER have tremors at all! It's bastard LBD - you can never predict for sure. Sally x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 About 4 or 5 years ago Liam old the kids that he was afraid he was getting Parkinson's disease and, you know, I never thought of that when we got the diagnosis 3 years ago of LBD. Simmel Re: Hand tremors Dear Courage The dreaded tremors!!! How many times did I hear the 'experts' tell me that tremors were NOT an LBD symptom???!!! I got so darn angry! 'Not typical' for LBD they kept saying and yet my dad was tormented by these blasted tremors throughout. His didn't start in his hands or arms .... it was much more subtle than that! It was my mom who first started noticing the tiniest of tremors when my dad was asleep. As he lay in bed his head would rhythmically rock very gently from side to side. It kept her awake. Then she noticed the same rocking tremor as he sat asleep in the chair or watched TV. He was not aware of it himself - at first. She had to move out into a separate bedroom - his tremor and restless leg movements and thrashing night sweats forced her out. Eventually we all 'saw' it because it got more pronounced and was in his neck too. Tiny tick movements - all in perfect rhythm. This is why my mom feared the onset of Parkinson's. This all started being 'visible' from about 5 years before he died. Then as the disease progressed the tremor was my dad's greatest humiliation and torment. It now affected his whole left arm and hand. Sometimes it was just 2 or 3 fingers ... sometimes just the hand. On really bad days he thrashed his side, you could hear him pounding himself all through the house. It was sheer hell. It got even worse if he was trying to eat with a knife and fork, or shave, or write. I was repeatedly told that tremors were rare in LBD patients - and couldn't be as bad as I described! 'They' told me it was dad's stress!!! But eventually they saw for themselves how severe they became and put my dad on Dopamine to try to calm them - BUT he just flipped on that and got insanely aggressive! In the end we had to live with them. NOTHING helped - he died with a huge bruise on his foreheadwhere he had tremored so bad he had repeatedly bashed his head against his cot sides. My experience has convinced me that the 'experts' are wrong about LBD and tremors. I think that tremors are far more prevalent than first understood to be. These tremoring episodes came in waves - some days he was more 'still' than others. You could never predict if we were in for a bad day or a calmer day. That's my opinion anyway! In a nutshell; yes, tremors DO happen. They can start small and might get very bad. But who knows .... some NEVER have tremors at all! It's bastard LBD - you can never predict for sure. Sally x Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hello Courage, I thank you for this discussion. My tremors have always been somewhat as a mystery to me. I never know one hour to the next what they will be like. It was the starting of a tremor in my right hand that was consistent with the Pillrolling rest tremor that was what finally the Dr. decided It was PD of some sort. It was negligible at first and even gone a good deal of the time. It started in my thumb and first finger. Later I noticed my small finger seemed to jerk and shake even worse than the thumb and finger. At times I would have a general shaking in both hands. Now it is much worse, but still variable. It is always there it seems and gets to a point where it involves not only my hands, but my arms as well. No longer can I stop it by sitting on my hands as my arm then shakes. I have developed habits to mask my symptoms, but they are not working as good as they did. lol My diagnosis of PD came in 1996. I had the other symptoms, but due to my age and with the tremor being absent he would not give me that diagnosis. Anyway back to the Tremor I now have tremor not only in my hands and arms, but in all extremities and always varying in severity. Jerky movements are also unpredictable, but not frequent. I hope this helps you. I don't think eveyone is the same on this either and everyone seems to be different. I apprciate your asking...Hugs...Patti > Hello All and Patti especially, > > Can some of you share you stories about your LO's hand tremors - when did you notice them and how did they start - total hand tremor or a finger or two at a time? > Courage > > Please follow this link to learn more about Lewy Body Dementia > http://www.lewybodydementia.org > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Thank you Carol. I am still wondering though what this test is for PD that I am reading about. Mine was with Sinemet and I did respond to it well at first. It just was the fact that even increasing it my response diid not last. Eventually it turned against me and became a problem. Is there another test that I am not aware of. I know there are some in the testing stages now, but was not awre of any other than those. My tremors are still greates in my right hand where they started....I appreciate the knowlege you all share...Hugs...Patti > My mom has hand tremors - total hand rather than just a finger or two - > primarily in her left hand (she is right-handed) and not all the time. I > probably started noticing this about two years ago. I just assumed, of > course, that it was PD since my grandmother had bad hand tremors and while I > don't know if she was ever diagnosed, I always assumed she (grandmother) had > Parkinson's. > > Last winter, our doctor prescribed Amantadine for my mom but it was not at > all helpful and then - when my mom was in the hospital in the beginning of > July - she was tested and - lo and behold - she does not have Parkinson's > Disease! Since I do not have POA, I doubt I could ever convince the two > POAs to have my mom diagnosed again to see if she has LBD. I AM hoping that > we can all agree on the merits of a brain autopsy after my mom dies. I > don't even care that much about knowing the exact diagnosis (especially > after my mom is dead) but brain autopsies are a valuable researchy tool and > I, for one, want to do anything I can to help with research that might find > a cure for these diseases. > > On another note - Sandie - bravo to you for allowing your father to control > his life - and his death! > > And - Patti - bravo to YOU for your courage and for wanting to learn as much > as you can about what is facing you! > > carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 We noticed our mom's right hand shaking about 4 years ago. It didn't happen very often, only when she was agitated or nervous. Now that I look back on it, I'm sure that's when her LBD symptoms started. About 3 months ago she started having tremors all the time in her hand, her chin, and her legs. The nh gave her something for the tremors and she had a bad reaction to it so they stopped. But while she was on the med, I noticed her tremors decreased, but her hallucinations came back! Now that she's been off the tremor medicine for a few days, the tremors are back as bad as ever. Kathy S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Sally noted: It's bastard LBD - you can never predict for sure. ************************ That's the case with ANY dementia - no two cases are alike - when you have seen one case of dementia, you've seen one case of dementia!!! My mom never has any tremors when she is asleep - only when she is holding something in her hand - like a glass, a fork etc. carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Patti wondered: I am still wondering though what this test is for PD that I am reading about. **************** You know, I really have no idea!!! I will have to ask what the test was. . .. carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Courage, lets hope that it is not the beginning of something. Maybe it is just the stress of all that you have been going through. Think positive! Hugs and feel better, Gwen Re: Hand tremors Gwen, thank you for this. I've started having tremors in my right thumb (never had this before - I know, I may be for nothing here but I was curious to see how the tremors began in others. Courage Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi Courage, Do you have anything else going on, like stiffness or slowness of movement, short steps, problems with falls or balance? Can you put one foot in front of the other or stand on one foot? Could you pass a drunk test if stopped by a policeman? Do you have any pain anywhere? What other symptoms might you have for PD or LBD. I think anytime a person is concerned about something like this it needs to be checked out by a qualifying neurologist. One who is well educated in the area and preferably a movement specialist as well. If nothing else it will ease your mind. Is your Tremor constant or does it come and go? Is it at rest or is it on using your hand or fingers? I wouldn't toatally dismiss it, but watch for other things and increase. My tremor has increased and spread very slowly.....Hopes this helps and I hope all is benign.....Hugs...Patti > >> Hello All and Patti especially, > >> > >> Can some of you share you stories about your LO's hand tremors - > >when did you notice them and how did they start - total hand tremor > >or a finger or two at a time? > >> Courage > >> > >> Please follow this link to learn more about Lewy Body Dementia > >> http://www.lewybodydementia.org > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
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