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BillBRNC

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Everything posted by BillBRNC

  1. Dropping Things

    The Parkinson side of my Lewy Body Dementia has been in good control with Sinemet, so I have not had much to worry about for a good while, other than feeling sick due to the Sinemet. And my neuro is adjusting Sinemet to help with that. But, I now seem to have a not isolated situation where I drop things for no reason, usually when I am putting something in the refridgerator. Not a big deal all and all, but a pain to clean up if I have to do it with frequency. Is my dropping stuff without knowing why part of the Parkinson thing or the Sinemet? Any ideas? Thanks.
  2. Follow Up Sinemet Question

    Dr. Okun, I feel bad to keeping asking so many questions, but here goes again. As mentioned before, I have DLB. I take Sinemet for significant Parkinson symptoms. I also have very significant cognitive and behavior stuff from the Lewy Body stuff. I had adjusted Sinemet with neuro here and the new dosage schedule seems to have worked in terms of significantly reducing nausea and confusion/cognitive aggravation of the underlying cognitive/Behavioral stuff that seems to happen soon after taking Sinemet. The new dosage lowers the L side of the pill and maintains enough of the C side.. Good news for me I think. But, my overall underlying cognitive/behavior stuff from the Lewy Body seems to have moved a solid step in the wrong direction for me, worse. My question is whether you think that lowering the dosage of Sinemet could possibly cause an increase in my cognitive behvioral stuff from Lewy Body. I read that Sinemet is no way treats cognitive and behaviorla side of Lewy Body, so starting, stoping or reducing Sinemet should not increase these underlying problems I think. Unless messing with the mixture of meds I'm taking can somehow do it. I also take Exelon and SSRI, plus assortment of heart failure meds which I have reduced already in order to stop some blood pressure plunges and that seems to have worked. Well, with all this background, do you think the increase in my Lewy issues is just normal progression of the Lewy thing, or could it be coming from messing with Sinemet in context with all my other meds. I know this must be impossible for you to answer, so I'm just asking about medical plausable that changing Sinemet could somehow mess up for the worse my cognitive/behanvior stuff. Thank you, and I hope you have good New Year. And thank you for volunterring so much of your time to answer people like me who you never met. Bill.
  3. Follow Up Sinemet Question

    Dr, Okun, thank you for response. I kind of figured you would answer as you did, so that actually helps to hear it from you rather than assume something else. I will be talking with my neuro here about it, but I won't be rushing him for an early appointment right now. This is just so tiring. Thanks again. Bill.
  4. Long Term Rehab for Parkinsons?

    The Big Program I went to was an individual thing, one on one. Doctor can prescribe it, covered by Medicare. The therapist will craft the program to accomodate whatever level the patient at. Whatever a person starts with, they almost certainly will end program with a lot more working right, plus instructions on what to do. Great program, it really helped me get back to walking normal and not always falling. Good luck.
  5. Follow Up Sinemet Question

    Dr. Okun, thanks you for replying. The symptoms I have due to Lewy Body,, other than Parkinson. Very quick to anger, mostly at wife for no real reason. But angry at other times to. Get really confused about what to do, where to go, am I supposed to do something, what day, what happenind...just confused about everything really. Feeling like my head is fogged in or adrift in sea. Anxiety over almost anything. Feel like being surrounded and closed in on, or being pushed to somewhere I don't think I want to go. Of course, I see things not there, and I hear things not there, blurred vision. I don't think the autonomic stuff is being made worse by Sinemet, so I won't go down those things. Ex\maple, I woke up this morning and felt like something was really wrong, felt like I knew what it was at some point during night, but could not recall it now. I kept asking wife what it was. I felt like something important was missing, and it giving me big anxiety and I guess fear. It is truly hard to describe what is going on in my head when things get worse. It is like pressure inside my head trying to get out or trying to figure out what to do next. It is extremely uncomfortable and dislocating for me. I would say the things are diffetrent behaviors on my part feeling, mostly anger at anything or anybody that is stirring up my space with talk, noise, or unbalance, or messing with good karma. I don't know really. I am not referring Sinemet possibly aggraating behaviors or feelings other than the types of things describe. Not memeory. I don't think talking, but whenever I get the least stirred up I have trouble getting words out or even knowing what words to say, and I have same problems when not stirred up, but it seems like they are lesser with the stirring up. Noises make me jump out of my skin. Being touched even by people I love and knowing they are getting ready to touch me causes me to jump. I told wife yesterday it is like sticking fingers in electic wall socket. It is that intense and quick and then gone. But each time a loud noise or voice happens, the jolt happens. Each time someone touches me, it happens. And I feeling like it is going to happen anytime I am in groups or out in places or even just with wife. I am sure there are many more things I could say, but I just can't think right now beyond just a little bit. Writing this is making me feel like something really bad is getting ready to hit me. Anyway, these feeling are with me virtually all the time. But I now wonder if reducing Sinement to avoid nausea has somehow caused across the board aggravation of these always existing feeling and behavoirs. Like I said, I have feeling that my question is unfair to you because you have not treated me or talked to me over time, so you are left with just my ramblings right now. It is terrible that I have all these feelings...I can't recall what I wanted to say here. The hallucinations aren't being made worse. They remain just the same, as in frequent both for seeing things not there and a whole lot of hearing things not there. Doc, I am just well and truly messed up in head, over and above memory stuff. I don't care about my memory. It is the behavioral/brain stiff that really botheres me, whcih is why I work to keep Sinemet from making those things worse. By going from fast acting to CR I have ironed out the intense uptick in problems that happend shortly after taking the pill, particularly in the morning. This is not what I refer to now, because the CR has eliminated the very qucik aggravation a nd acceleration of my problems in the morninng. What my question pertains to is kine of an overall general all day sort of thing, which is what I live with all the time. I can't even think of a single aspect of my feelings, behavior, actions and such that haven't been ttuly trashed by this dang Lewy Body disease. I hope what I am trying to say helps you. But I say again, please don't feel like you need to look for needles in hay stacks for me. I really just wanted to know if Sinemet had the capacity to actually make these things worse, even these increased issues happened when I lowered Sinemet. I know that Sinemet can make things worse, but not when I reduce the dose. SEe there is difference between the morning uptick with the higher dosage that I wanted to get rid of by lowering dose and going to CR, and the across the board all day thing I am trying to describe that is sort of like taking everything going on and moving it up a couple of notches. I give up. Don't know what else to say right now. But thank you much. Bill.
  6. Dr. Okun, I have hit you with many question before, and I appreciate your responses. I have DLB, with full range of Parkinson stuff with the dementia stuff. I now in CCRC. Going for quality of life. My neurologist who has been following me for about 2 years has made these suggestions in response to my request to see if a different dosage or combination of Sinemet might work better for me. The current use is extended release at breakfast and dinner, nothing at lunch, and a fast acting at bedtime. I look for ways to reduce sick feeling in stomach mostly, but also maybe reduce some of the confusion in my head. Oh, some of my Parkinson stuff has started slowly coming back, such as some increase in balance issues, some return of cramping, and some return of painful joints and similar stuff. Any way, my neuro has suggested taking extended release at breakfast, dinner and bedtime, and a fast acting at lunch. Doing this will allow him to slightly lower my daily dose of the bothersome stuff. His hope is to lesson my reactions lessen my reaction. What think you. Thaanks. bill
  7. Dropping Things

    Gardener, thanks for the reply. Yes, I need to concentrate more on what I do and make sure I am certain to be in control of my hands and fingers. I also have developed some tremors in my hands and fingers, on and off. I guess it might be associated with off times for the Sinemet, but not sure. All the Parkinson stuff seems to be very, very slowly coming back around the edges, but very mild compared to what I had before. So I really don't concern myself with it too much, as my dementia stuff is getting out of control, which is why I now in CCRC. What a year. Unfortunately, the new year will only get worse for me, but I keep my head up and go with flow as best I can. I get comfort from all the folks here who have Parkinson stuff way way worse than I've had it. I know a couple of Lewy Body guys my age over the internet who can't take Sinemet or other Parkinson drugs due to worse confusion and craziness. They are in real pain all the time. I have problems with Sinemet, but I keep lowering dose to a level where the pain and movement stuff is tolerable and also the cognitive and behavioral stuff is tolerable. At least that is the plan so says my doctor. Merry Christmas and New Year to you and family. Bill.
  8. Me Again. Q about Sinemet Adjustment

    Dr.. Okun, again thank you very much for your wisdom. I still can't believe you give so much of your time to folks like me over the internet, but I thank you very much. Bill.
  9. Parkinson's patient abusing opioids?

    Hard issue to deal with. You have gotten much good advice. I can say this, I would get well and truly pissed off if my son went behind my back to mess with my medications. I would know he meant well, but I still would be pissed. If my wife went behind my back, no problem as I have given her POA and also told her that she is the final judge on these sorts of things so long as I have been consulted in advance. But then to have Dementia with Lewy Bodies, so I have major conginitive junk in addition to Parkinson junk. Good luck.
  10. Call your senator about the awful tax bill

    What fun reading. I was in top zone during working years. Because I saved and invest, I now have more than I need, but then my wife will need when I am gone, and my son and his family need some because he is college professor who earns about what a regular public school teacher makes in blue states. He earns more than most red state teachers, but big deal. Anyway, I am finished with fighting culture wars, race wars, economic wars, diversity wars, ideology wars, and all that crap. As for tax bill in congress right now, I could care less for me and my family, as I have mostly done all that I can do. As for future, I have little hope really, as neither Dems or Repubs are worth dry spit if you ask me. Folks, we are on our own here with these diseases I know for sure. Family helps, but that about it. My view is make the best of a bad situation, because what else can we do. I finished for today. Bill.
  11. Dementia Lewy Bodies

    I really have problems these days with stuff that is around edges of my DLB, and most of which fall within the fairly routine reactions to various of my DLB medications. I take a Parkinson med that is virtually essential to physical functioning, and it absolutely makes all of these problems, including cognitive stuff, worse. Depending on the dose, it can be much worse. For me, I am taking the lowest dose of this medication possible and still get some good effect from it, so stopping the sinemet really isn't possible for me. But with the dementia end of the medications, that is a different story. The doctor where I am now want to increase my Exelon and add Namenda to my medication mix. I backed off the higher dose of Exelon because of adverse problems due for certain to the Exelon, so I think increasing the dose is a non starter for me. I'm on the lowest dose of Exelon. The Namenda apparently somewhat clinically proven to help Dementia with Lewy Bodies, so I need to at least think about it. Here is what I thinking right now. I am thinking about dropping all of my dementia medications, not starting any new ones, and keeping the Parkinson medication. I also would keep the SSRIs. I wonder if cutting out all of the dementia meds would help me with all these ancillary issues. These issues just mess up quality of life. These issues could be coming from the DLB or from the dementia meds, or both or none. I just want to feel better while I make my way forward from today. The fact is that the medical evidence is far from certain that the dementia meds actually help at all, or if so for how long, while it is certain that they cause problems. I want quality of life, not quantity of life. I also would rather have quality now as opposed to hoping that my cognition might get worse more slowly by taking the meds. The doctor here works from the assumption that the most important thing is to keep us demented people as cognitively with it for as long as possible, and I understand that. But I still think getting rid of these bad feeling is more important to the here and now. My original neuro doctor in another town where I used to live until coming here, he thinks my current dose of Exelon is fine and it for me, plus he doesn't care much at all for Namenda. I will see him for the last time early next month. I'll be seeing the doctor here, who is an internal medicine guy with the subspecial geriactric stuff and training. He is good and has lots of dementia and Parkinson patients in this CCRC, so I assume he knows more than the average bear. Dr. Okun, I realize that you are specialist in Parkinson stuff, but I assume you also know a lot about DLB, so I thought I would ask you about what you think of my idea to drop the Exelon and not start the Namenda. I really don't care if I get softer in the head a few months or even a year earlier if I can at least try to drop the dementia meds and see what happens. What do you think. Please, please provide any insights you folks might have. Thanks. Bill. PS, I add that one of my big problems now is the autonomic stuff associated with DLB. I have I think almost every known autonomic problem. Big problem with blood pressure getting to low, as in below 90/60, and you know all the problems that cause cause, and cause them is what they are doing to me. My cardiologist for my heart failure (from 7 years ago, but somewhat improved and stable for the past few years) has agreed and has in fact eliminated two or three of the anti hypertensive meds that are in the cocktail I've been taking, and that seems to have helped, along with reducing the coreg. They are closely monitoring the biventricular pace thing to see if my heart failure is coming back. He knows I want him to turn the thing off after I get into memory care, hopefully not anytime soon, becuase I would rather die quickly from heart problems than slowly from DLB. So I have done all the medication adjustments I can with the heart meds, at least for now, and I have significantly improved the low BP symptoms, so that is what got me thinking about other adjustment I might be able to make. Look, I know I am dead meat from the DLB, so quaility of life is what I seek, and quantity is much less important to me. I don't want to die mind you, but we are talking about all bad options in one way or other, and I'm trying to take some options that at least make living right now a little better. Thanks. I'll stop now.
  12. Handwriting changes

    Linda, I not sure it correct to say that Sinemet causes cognitive problems. I think they say that Sinemet can make worse cognitive and related issues if you already have dementia of some sort. I truly don't know, other than a couple of neuros told me that Sinemet might aggravate my dementia and dementia related stuff, and thus reduced my dose to the lowest level that could still provide me some relief. And we found a dose level that helped the parkinson stuff and only mildly made the dementia stuff worse. Now I read a lot on line about it and there seems to be somewhat universal belief among neuros and geriatric types that this is true. Does it cause it in the first place, I have not read that anywhere that I can remember. It certainly does not help cognitive or dementia problems at all to my knowing. Thanks. Bill.
  13. Handwriting changes

    Superdecooper, I have Dementia with Lewy Bodies, which is a combo of parkinson and dementia, not nice stuff. So I not expert on parkinson, but I have learned much over the past year. For me, I had almost all the things you mention, and when my neuro put me on Sinemet, the symptoms improved across the board. Because Sinemet makes cognitive stuff worse, I had to cut back on dose, but Sinemet is still a savior for me. The help came within a day of starting, as in right away. I can't see why one of your doctors don't just give you a trial run to see if it helps. If it does, then you have parkinson or worse still DLB. Others hopefully will tell you if this is a good idea or not, because I don't know, but it seems so to me. By the way, I doubt an orthopod knows much about Parkinson's, other than to immediately refer you to a neuro. Good luck to you. Using a hand recorder is the only thing I can think of to help the taking of notes, and you are already in the know on that. I would hate to use one myself, but I am 67 and I came up using hand scribbled printing that only I could read. I not a reporter or jounralist like you, but a lawyer who had to take quick notes so I could cross examine witnesses in a trial. I can't think of how I would have been good at my job if I could not have taken notes. I used to have a good memory, but not that good, and certainly no good at all now. Good luck. Bill.
  14. Getting to thankfulness

    And really, really, really thankful for Doc, my wonderful service dog who brings light into my life every minute of every hour. Sorry, Doc, for leaving you off the list yesterday. Bill.
  15. Getting to thankfulness

    I have Dementia with Lewy Bodies, which is parkinson stuff and dementia stuff, and I am 67 now in my apartment at a CCRC on my way to memory care, later than sooner I hope. Thankful for disease? Hell no. Thankfully for still being able to breathe and know I'm here, hell yes. I thankful wife and my son and his family. Thankful that I was able to put things in order financially for everyone. Thankful that I have good care. Thankful for being able to see others here like me who also can still see some of the good things we still have to be thankful for. Bill.
  16. Dementia Lewy Bodies

    Thank you again. By way, is there any real downside to stopping the dementia meds to see what happens, and then restarting if I experience bothersome decline? Thanks again.Bill.
  17. Fingers Going Going, But Not Gone Yet

    Yes, it is somewhat rare. The necks back in the day for the most part didn't survive the passage of time as good as the pots did, so new necks with truss rods help to reinvent the banjo. My neck is exact duplicate, only better becuase of truss rod and just all around better build. The pot produces a really wonderful tone. Because of new neck, this isn't really a collector banjo, but I wanted to play and not just look at it. This is a player's banjo, not a collector's banjo, which limits its money value, but I didn't buy it to sell it, not now not ever. I will have fun while I can. Thanks for comments.
  18. I play open back banjo. It is a 1920 Gibson 5 string. The neck is new, custom made by a guy in Quebec. I get a lot of enjoyment out of playing it. I used to play in bars and private jams a lot, but not anymore. I play for myself and wife. I got Dementia with Lewy Bodies, and that includes dementia and parkinson stuff. I just realized over the past week or so that my fingers are starting to do whatever they want when I'm trying to play. I thought it was temporary, but I think it is here to stay. I can't up my dose of Sinemet because the higher dose makes my cognitive/dementia stuff much worse, and it is already fairly bad as it is. Music is wonderful. To make music is even more wonderful and soothing too. I hate my fingers are going down the drain, but that's the way it is, so no need to fret about it. I can still play, but not good as before, and the sound and tone are nowhere near as pleasant. But I can play for myself and wife. I sing when I play, but I now can't remember words all the time, so the songs are not exactly followable if that's a word. We can't take things for granted. I like about this Board is that everyone seems to have such a good attitude about life and even their limitations. I in a CCRC now with my service dog, Doc. It is a nice place for me, and they can take care of me as I complete my journey. Bill.
  19. Dementia Lewy Bodies

    Dr. Okun, thank you for replying. I will tell my doctor hear at the CCRC about you. I think he means well, so I think he would be happy to get some help, also becuase he can use the knowledge with his other demented patients. I'm only 67, so very young for this place, and his patients are mostly in their 80s or early 90s. I don't know that he has ever had much experience with folks my age, so I think he might be willing to call you. We shall see. You made a very nice offer to help, and I deeply appreciate it. I hope you know you are doing god's work. Bill.
  20. How a person lives their life after getting a really bad diagnosis is likely to be much of how they are remembered when they are gone. I got Dementia with Lewy Bodies, so I got dementia and all the parkinson stuff. I haven't killed myself because I don't care to die and I do want to enjoy whatever my situation is the best I can, and I want my family and friends who stick around to see that there is life after getting getting hit with a hardship. Sounds corny, but that is why I haven't killed myself yet. The parkinson stuff is a real kick in the butt, but the progressive dementia stuff is quite ruinous, but between the two things there is still some light to see the day. Cheers.
  21. CBD Oil--Does This Work?

    Does CBD Oil work for anyone's Parkinson symptoms, be they physical or anxiety? If so, is there a place to look on line for information about what it contains and what it works for? I haven't ever tried it, or even seen it, but I've heard that it is good for these symptoms in Dementia with Lewy Bodies. Thanks.
  22. Service Dogs Are Life Changing

    This smells like an advertisement. The service dog programs that I'm aware of have no need to advertise for clients, as their waiting lists are quite long and new folks getting on the list all the time. This creates "opportunities" for many folks interested in making a little money. I don't point any of my fingers at this particular program, as I know nothing about it. I'm just saying the buyer beware, because there are far more fraudulent service dog programs than there are real service dog programs.
  23. fixing and fumbling

    I like to play banjo, but I can no longer put new strings on my banjo. I just can't do the job anymore for numerous reasons. Fingers don't do what I want, eyes don't see like I want, and I forget what I'm doing if I get up to go do anything else with the intention of coming back (that's the cognitive side of my DLB). I now go to a music store and suffer the looks and questions about why can't I do it myself. Well, I would if I could, but I can't. I also have a lot of trouble playing the banjo, even though I used to be fairly decent at it. I have good times and bad with my playing, and I never really know which it will be until I get going. I think music is one of the things that make my life more enjoyable these days, particularly since my dementia has been going down a hill for a while now. I've had to move into a CCRC where I'm in independent living apartment, but I soon to move to assisted care, then memory care. I'm hoping the banjo and music will follow me on the journey.
  24. CBD Oil--Does This Work?

    Well, it has been a tad over a month that I've been taking non-THC stuff. During the first week, I noticed an almost immediate benefit in numerous problem areas for me. Don't know if I was really responding or just convincing myself that I was getting a benefit. Regardless, I kept on taking it. Over the course of the past month, I've lost some of the super benefit that I thought I was getting during the first week, but the fact remains that a noticeable level of improvement has persisted. My doctor wife is even a believer, more than I am truth be known. With the passage of a month, I find that I can no longer remember what things were like before I starting taking it, so I guess my wife would be a better judge of effectiveness. I have Dementia with Lewy Bodies, so I am looking for more than help with my Parkinson symptoms. I really need help with the anxiety, agitation, anger issues, autonomic nerve deficiencies, and many other non-movement type things. I think/hope that the CBD oil is helping, at least I desperately need help and the many current meds I'm taking for the DLB are doing a whole lot of good, other than the Sinemet seems to work quite well. I'have had to reduce the Sinemet dosage due to it further messing up my cognitive problems, but the dosage I'm on still does enough to take care of most of the muscle, joint, walking, balance, jerking and such. Unfortunately, I also get jerking and balance from the DLB problems, so it is hard overall to really know much of anything. I have ordered a new supply of the CBD oil. I simply can't take the THC version due to my cognitive issues. Good luck to us all.
  25. Trying Sinemet

    I've been taking Sinemet for about 8 months. I can't recall what I got up to, but I had to lower it back because it was making my cognitive and behavioral problems worse. I have Dementia with Lewy bodies, so I can't afford to have what little I have left reduced sooner than otherwise. The dose I'm on now is sufficient to reduce the Parkinson stuff by about 50%, maybe a little more. The larger dose got rid of about 80%. I can live with this. Just a couple days ago, I ordered my first 30 ml bottle of MMJ, the kind without THC.I don't need my brain fogged up more than it already is, so no THC for me. I take MMJ to reduce anxiety, agitation, general buzzing throughout my body, other similar behavior stuff, and insomnia. I sure as hell hope it works as I have read in many places now. I wasn't going to get it, but it seems fairly clear that it has benefit to a high percentage of people of take it for things like Parkinson's and various dementias. I'm not entirely sure it is legal in my state, but I ordered from a business in my state. They make it themselves, grow it, advertise on the Web, and the people there give presentations about it. It is in plain view in a mid-size town, so the police apparently don't care. Even if it was clearly illegal, I think I would find a way to get some. On the Dementia Forum I read some, many of the folks there can't get by without it. My wife is a doctor, and she is supportive of the idea, mostly because she is on the receiving end of my agitation, anxiety, anger, jumpiness, and such. Good luck to all of us.
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