Jump to content


  • Content Count

  • Joined

  • Last visited

  • Days Won


BillBRNC last won the day on November 13 2017

BillBRNC had the most liked content!

Community Reputation

37 Excellent

1 Follower

About BillBRNC

  • Rank
    Advanced Member

Profile Information

  • Gender
    Not Telling
  • Location
    North Carolina

Recent Profile Visitors

1,663 profile views
  1. BillBRNC

    Sinemet & Dyskinesia Question

    Dr. Okun, thanks for the information and ideas. I appreciate it. Fact is I am getting tired of chasing my tail on all the various symptoms I having now. Nothing seems to do much good anymore, other than the Sinemet seems to still help with the Parkinson pain. At least it seems like it does to me. I am setting up a new care team in the city where I live now in the CCRC. And they have top notch doctors in every field via a large medical center that also has a medical school of some note. My wife is pushing all this stuff now, as I am tired of all of this. I haven't seen my new neurologist yet, but he is a movement disorder guy. I am also being followed by a geriatric doctor associated with the memory assessment clinic where I was initially diagnosed. I also have a new cardiologist. All of these doctors are at the Wake Forest Baptist Hospital/Medical Center, which includes the medical school and the memory assessment clinic. Thanks again for all of your efforts for us Parkinson and LBD people. Bill.
  2. BillBRNC

    CBD Oil--Does This Work?

    Update: I had to stop taking this stuff. I was taking the non-THC version, but I also had significant hypotension from autonomic dysfunction and orthostatic hypotension. So I came to find out that CBD of either type depresses blood pressure in a lot of people, and I was one of them. I also had to stop taking a number of my heart meds for the same reason. All this dropping of meds and CBD really hasn't helped much on the low BP front, but any little bit helps because my BP frequently drops down to the 80/60 range and sometimes as low as the 70/52 range. And yes, I have all kinds of symptoms associated with low BP. Oh, the CBD did help me to a decent degree, so I was a little pissed that I had to stop taking it. Good luck to one and all.
  3. BillBRNC

    Phantom smells???

    Gardener, what you say is what I've heard and also read in journal articles. There are even people who want to change the names for all this from PD, PDD, LBD, and DLB to a new designation, Lewy Body Spectrum or Lewy Body Disease. It probably would make sense, but I doubt it will happen.
  4. BillBRNC

    Phantom smells???

    I don't have regular PD. I have Lewy Body Dementia that provides me with a full dosage of PD symptoms. Not to scare anyone, but smelling things that are not real is a very common symptom in LBD. Those in the know say that it represents a hallucination typical of LBD. I have been smelling things not there for a long time now. I also have persistent visual and auditory hallucinations. All my hallucinations are very pronounced. I also go to a private forum that only has people with diagnosed LBD, and right now there are 85 somewhat active members, but there is a lot of turnover. It would be fair to say that around 85% or more have hallucinations involving smelling something that isn't present. There are others that say that the source of the smells come from autonomic dysfunction, which almost all LBD people have to varying degrees. I have really bad autonomic dysfunction. This is something fairly important to report to you neurologist, as I assume everyone here knows that is a close connection between PD and LBD. Me, I am not sure what causes the hallucinations, but I can say with certainty that these hallucinations exist and are very real to the person having them.
  5. Dr. Okun, I have LBD with what seems like most of the PD-type symptoms. I was prescribed Sinemet a tad over 2 years ago.Over the past year, we (me and my neuro) messed around with increasing and decreasing the dosage in an effort to actually relieve my symptoms while at same time not making my low blood pressure problems worse. I now take 350 spaced out during the day and and night. Unfortunately, my BP problems have not been helped much at all. When I first started Sinemet, I had some improvement no question about it, but over time I have lost much of the improvement, and I can't increase the dosage. But I also have been having a steady increase in pain all over my joints and muscles, so the Sinemet hasn't been too good with my pain. Over past several months, maybe much longer but I don't recall things well anymore, I have developed a lot of new movement issues. Loss of coordination, spastic type movements with arms and hand and feet, I find that I am somewhat constantly doing little dancing steps with my feet while standing still somewhere/anywhere, weird finger movements, jerking movements, plus what seems to be a worsening of confusion and other behavioral things. I know there is a lot more, but things just drop out of my mind when I need to retrieve something. I did some looking around, and found out that long term use of Sinemet can cause Dyskinesia. I looked up the symptoms to see if my problems seem to fit Dyskinesia, and it is hard to say but my movements seem to be differrent from what the literature suggests, which brings me to my questions: (1) Is 2 years of usage too short to produce Dyskinesia; (2) if I were to stop Sinemet in order to see if the new issues get better or go away, would there be any problem is getting back of to dosage at a later time; ---- I can't remember the other questions I had right now. Oh, when I say that I have some spastic type movements of arms wrists hands fingers, I am referring to somewhat quick movements that just happen and then vanish within a few seconds. These motions also seem to be connected in some way to a surge of loss of coordination in my movements of walking or using hands to pick things up, and sometimes I just end up holding one hand over my other hand to squeeze it. Does this sound like Dyskinesia. I have seen videos of people with Dyskinesia, and what the videos depict is not what I am trying to describe, which is why I wonder what all this really is. I have reached a point where I cannot have my cake and eat it too. In theory, I would prefer to have some worsening of pain and Parkinsonisms if that resulted in me getting away from all the new symptoms I have develped recently. My head and feelings and body have gone to a new place that is much worse than the old place. So I wonder about testing by eliminating Sinemet to see if I cease to have all these new symptoms, and I ask you whether this makes any sense and would be safe. Thank you very much. Bill.
  6. BillBRNC

    Alternatives To Sinemet

    Dr. Okun, thank you for your thoughts on this. Bill.
  7. BillBRNC

    Dropping Things

    Gardener, thanks for reply. I don't really know what to call what my hands are doing right before I drop something. They aren't shaking, but my hands and sometimes my whole body seems to be on a hair trigger vibrating from the inside, and then all of a sudden I have what I guess could be called a startle type reaction in my hands, and sometime my whole body. I do not know what this is called or if it is Parkinson, as opposed to autonomic nervous system dysfunction from my Lewy Body Dementia. I have had to reduce Sinemet due to it aggravating my orthostatic hypotension. When I found a dosage that permitted my OH to rarely get worse than 80/60, I found that much of my Parkinson movement issues came back into play. I have appointment with MDS doctor in a month to find out if there are any alternative Parkinson meds that can do what my former dosage of Sinemet did without aggravating my low blood pressure problem. But I just think the dropping things is Parkinson, but I don't know. Thanks.
  8. BillBRNC

    Dropping Things

    I have the pill rolling thing with my hands, and I feel shaky and off balance a lot of the time. My question is whether dropping things I pick up is related to this disease. I assume it is, but it is not like my hands are shaking, because they only seem to have a very minimal shiver near the end of the day. Thanks.
  9. BillBRNC

    Alternatives To Sinemet

    Dr. Okun, I seem to keep coming back to you with more questions, and I am sorry to bother you. The question being considered by my neurologist and cardiologist is this: Sinemet provided very good relief from my Parkinson symptoms. But the Sinemet also made my cognitive issues from Lewy Body Dementia worse. We ultimately found that by taking CR rather than fast acting solved the acute aggravation of my non-Parkinson symptoms from Lewy Body Dementia. And that has worked well over time for me. Then along the way the autonomic dysfunction associated with LBD became very significant in that the orthostatic hypotension got rediculous, with very low BP reading upon standing up, sometimes in the 65/45 range. So my cardiologist approved the reduction and ultimate elimination of several heart failure medications I was taking that were intended to lower my blood pressure. One final cardiac medication, Coreg, had the dosage lowered to almost sub-therapeutic, and the Coreg is the biggie for lowing BP, but it is also the biggie for me staying our of heart failure. All the reductions of cardiac medications didn't solve the problem. So, the Sinemet was slowly reduced until I got my OH blood pressure drops to fall more into the 80/65 range that I could handle reasonably well. Unfortunately, the Sinemet got reduced so much that a significant part of my Parkinson symptoms returned. I can live OK with some of the symptoms, but the pain from muscles and joints is really rather significant. And pain medication at reasonable levels doesn't seem to provide any relief. So the question now is whether there is an alternative to Sinemet that can take care off my Parkinson issues as well as the Sinemet took care of them before we cut the dosage so low. In looking at the alternatives to Sinemet, we found that the alternatives specially listed orthostatic hypotension as a significant issue. I have reached the point of not really getting excited about making changes anymore in my medications, for all kinds of reasons. So, I don't want to go into a trial and error search for a alternative medication for Sinemet unless there is a very good chance that the new medication would not cause the same problems with OH and low blood pressure. Also, I noted the alternative medications also listed a number of cardiac function issues, and my heart failure is stable now but is unlikely to stay that way if a new medication were to introduce an additional cardiac issue other than OH. Dr. Okun, are there any good option with other Parkinson medications to manage my Parkinson problems without also making my OH worse? Oh, I think I probably questioned you about each of the steps we have taken before I took them per my local doctors, and you have been very helpful in all of those. Thanks very much. Bill.
  10. BillBRNC

    Startle Reflex

    I have this really really big time, but I also have Lewy Body Dementia. I have never viewed this as a result of taking Sinemet, since I had it before taking Sinement, but not as bad as now. I think it comes from the non-Parkinson stuff, or maybe from Exelon or depression med or whatever I can't think right now. If someone touches me when I don't expect it, I can react every agressively. Even when I know the touch is coming like from my wife coming over for to just touch my shoulder or something, I still jump. I have asked her not to touch me unless I say it is ok, but that is hard for anyone to remember. One time while checking into a hotel, I turned around to my wife and almost hit her in the face with a fist. Scared the tar out of me, her, and lady behind the desk and the people behind me in line. Very unpleasant scene all around. Needless to say I had never before hit my wife or even acted agressively towards her no matter what. I don't think I would ever hit her, but I do worry about slugging someone out in public, particularly if in a group of people. So much so that I simply don't get into group setting unless I am well outside the outer edge of the group. People think it is weird, but they just don't know. Good luck.
  11. BillBRNC

    sleep apnea and cognative decline in pd

    I have Lewy Body Dementia. And myoclonic jerking is something that folks with LBD often get. It consists mostly of involuntary jerking of arms and/leg and/or body core shortly after bedtime. It also can occur at any other time of the day, but it is most frequently seen while in bed. I am no doctor, so take advice from your doctor. The jerking is almost like putting your fingers in a wall socket and getting a good jolt. That what it feels like to me anyway. They come and go, so no a constant thing. I always assumed that Parkinson people got them too, but I don't know about that. I have fairly full blown Parkinson crap along with the Lewy crap. But Sinemet and PT has resolved a large part of my Parkinson stuff.
  12. BillBRNC

    Parkinson's vs. LBD Diagnosis

    I have Lewy Body Dementia. I got diagnosed based on cognitive symptoms, hallucinations, and history ,neuro-psych testing, and FDG Pet Scan. I did not have any Parkinson symptoms at the time. About 6 months later, I go hit will all the Parkinson stuff. PT and Sinemet helped me with a lot of my Parkinson troubles, but not all by any means. To your question, Yes, it is possible to have a normal FDG Pet and still have very early LBD. i would say if many of your symptoms are strictly Lewy Body Dementia symptoms, then I would be sure to have a complete work up at a major medical center's memeory assessment clinic to have your best probability of getting an accurate diagnosis. By way, a DAT scan is also used now to help diagnose LBD. I didn't have one and know very little about the DAT Scan. I do know that a positvie DAT scan in a LBD work-up is considered almost as strong as a positive FDG Pet SAcn. Bottom line, though, you should take your medical advice and opinions from your doctor and not from a message board. If you are seeing a Parkinson only type doctor, you might want to go even more to a memeory assessment clinic. Good luck, because you sure as hell don't want to have LBD. Parkinson's is bad enough to ruin a good day.
  13. BillBRNC

    Reduced Sinemet & Increased Problems

    Thanks Dr. Okun. On this past Friday, we cut down a tad on Sinemet by cutting one of the CR pills in half. I really haven't noticed anything yet. Also starting on Friday, I have cut coreg by 50% on way to 0. My cardio believes that it is more important to keep my blood pressure higher since I've had a goodly number of reading in the zone of 65/50, which as you know isn't good at all, but that is what we are dealing with right now. Most of the time, I think the BP is closer to low normal, but I keep having these plunge reading. Oddly, I don't really feel worse at 65/50 than I do at say 100/68 or so. Can't figure that out, but cardio is pondering it. He doesn't want to use the BP pills that are designed to push of blood pressure if there is any way to avoid it due to heart failure and other issues that worry him. He knows his stuff, so I trust him on all cardio issues, and many others too. Anyway, getting Sinemet down as low as possible is also what we want, but I don't see any way to go any lower. Once all this done, my personal belief is that nothing will have changed with regard to plunging BP issue. I now believe in my mind that nothing will help it because it is just something that can't be fixed with my autonomic dysfunction from Lewy Bodies Dementia. I hope I am wrong. But if I find myself in the same place a couple of weeks after we do all these changes, I will talk with cardio and neuro to see about adding back some of the reduced Sinemet, because a lot of my symptoms are coming back in not a good way. Thanks again for your help. Bill.
  14. Dr. Okun, I have been going back and forth with my doctors of various kinds to try to keep my blood pressure from tanking all the time. Part of process involves significantly reducing my Sinemet, actually cut in half prior dosage, and also reducing or eliminating most of my heart meds. I know I will have to put up with increased muscle pain, stiffness, joints hurting, and some newly returned issues with walking. If I concentrate, I can avoid tripping and falling, and I have done so thus far. My walking is OK, not bad, but nowhere near as good as on higher dose. The higher dose I dropped by 50% was also a dropped dose from my best dosage for sypmtoms. But we reduced that a couple years ago due to it making cognitive issues worse. Now, for my question: It looks like I can't increase Sinemet or take any similar meds, so my question is whether there is something else I can do for my newly returned problems. Oh, pain, weakness and limitation of motion are my problems I think. Just wondering if you have any words of wisdom on this point. Thanks very much. Bill. PS: Dr. Okun, I just saw a question I asked you a while back. Although a different initail question, I saw that via follow up questions and responses you actually answered the question I just asked above. I will talk with my neuro about some type of dosing that would produce smaller doses more times a day that total up to the amount we think is my limit due to blood pressure issues. By the way, the dosage I am on right now, forgetting the number of times a day to take it, is leaving me with an almost unacceptable level of pain and the things I mentioned above, but I think that totaly daily dosage is the best I can do, so I now hope to see if using more frequent smaller doses might improve the situation. So thanks for your prior response, which I had totally forgotten about shortly after I got off the computer. I will write this down and give it to my wife so she can make sure we do something about it with advice from my neuro. Thanks again. Bill. OK, another PS: Would the breaking the dosage up into smaller doses taken more frequently work with extended release or just fast release. I currently take extended release because the fast release pills were kicking my cognition in the wrong direction shortly after taking the med, but that doesn't seem to happen with the extended release. Now, I think I have covered all the things I intended to cover in the beginning. Thanks again.
  15. BillBRNC

    What Happens When Sinemet Stops Working

    Oh, my non-motor symptoms are much more of issue than the movement issues, but the Sinemet might be making some of my non-motor issues worse, but after much playing around with doses per my doctor, we are both coming to conclusion that my current dose of Sinemet probably can't be raised without significant conseuence to cognitive and BP issues. I sadly gettting to point where my options are become more limited, but the search continues. The Parkinson symptoms seem to be fluctuating in terms of getting worse then backing off some, then getting worse then backing off some, and so on. This is the same for my non-movment issues from LBD, which have always fluctuated, only now my fluctuation is between moderate to early severe, then back and forth. The base line just keeps getting worse with the progression. Not sure what to do, and I don't think my doctors know what to do either. The cardio and neuro and geriatric guys seem to be at a loss as to what else to do other than the neruo and geriatric guys want to increase doses of the dementia drugs and add another dementia drug. I have been holding back due to the significant bad effects I get from those medications, not to mention they seem to make my Orthostatic Hypo worse with even lower BP. I'm getting tired of all of this. I now look for reaching a reasonable level of decent with all this and then riding it out down the path. Thanks.