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Everything posted by BillBRNC

  1. 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.
  2. 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.
  3. Dr. Okun, I have been taking Sinemet for a couple years now I think. At the start, it reduced the movement issues (muscle pain, joint stiffness, trouble walking and falling, balance and muscle cramps) by a rough estimate of about 90% or a tad less or more. It was a magic for me. I had to reduce the dose early on because of issues with cognition and things like that from my Lewy Body Dementia, but the dose we settled on was still roughly as good as the higher dose. Time passes now. A few months ago, I had to reduce it some more due to trouble with low blood pressure from autonomic dysfunction from LBD. Oddly, this lower dose still worked very well. Combined with some prior progression of Parkinson symptoms and then the reduced dosage, I would guess that I was around 60% or about relative to what I had right before starting Sinemet a couple years ago. The medical view with my doctors is that I can't increase Sinemet because of problems with cognition and for low blood pressure. It seems to me that there now is a slow but noticeable progression that I can feel. It is not a daily thing I notice about progression. But after the passage of say a month , I can tell for almost certain that there has been a progression across the board. Given where I am now, if the progression continues for another few months, I am going to be getting into the zone of having really bothersome symptoms from the Parkinson stuff. My question is what can I do between now and then to help control all of this, or is it just my fate to continue to get worse now. I haven't raised this specific topic yet with my neurologist, but I plan to ask him on my next visit in a couple months. Thanks. Bi ll.
  4. 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.
  5. BillBRNC

    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.
  6. BillBRNC

    Help With A Symptom

    I got LBD that also produces a lot of Parkinson symptoms, for me almost all of them. Sinemet reduced these symptoms at least 90% at the maintenance dosage. A few months back, I had to reduce the dosage of Sinemet by 50% in order to help with a low BP problems I have from autonomic dysfunction from LBD. After maybe a week, I noticed that the Sinemet then only was reducing my original symptoms by about maybe 60% or so. In other words, I had stiffness, some cramping, some joint discomfort and the like, but mostly when the prior dose was starting to wear thin. Along about 2 to 3 weeks after reducing the dose, I started having trouble all the time with my right elbow. My doctor said probably bursitis, so I wore a compress sleeve on the arm arround the elbow for a few week. Over time, the elbow problem seems to have gotten worse, and the problem has expanded to include my right shoulder and my left shoulder and elbow, and to lesser extent as of today with my wrists. They all seem to have the same basic feeling, only different levels of intensity. I also have somewhat stiff neck and back of shoulders and mid back. My question is this: Does all this seem more like Parkinson stuff than bursitis or something else. It just occurred today to me that all this started a few weeks after I reduced the Sinemet, but it didn't become noticable and bothersome for a few more weeks, then expandedd over the last several weeks again. Before I run off half cocked on this with doctors, I just wondered if these symptoms ring a bell for any of you. Please let me know. Thanks.
  7. BillBRNC

    Help With A Symptom

    I was diagnosed after all the testing and such, along with a Pet Scan, about 2 years ago. But I was diagnosed with dementia a year prior, but the doctor didn't know what type, only that he didn't think it was Alzheimers. At that time, I had not started having Parkinson symptoms. I had the same symptoms at had at time of diagnosis for at least a year maybe 2 prior to getting diagnosed with dementia. So I think I've had sufficient symptoms and findings to diagnose LBD at least 4 years ago, but clearly 3 years ago.
  8. BillBRNC

    Important Sinemet Question

    I got the answer from another reliable source, but thanks for looking.
  9. BillBRNC

    Q About Arm Swing

    The only thing I was able to get is something I got from Dr. Okun. If I recall right, and I guess his response might still be around somewhere on his spot, he said that this was not an unknown occurrence. But it had not been studied much. I think he said one of his colleagues was interested in the subject. I also asked my treating neuro, who said that this was normal to have that sensation. Personally, I would favor whatever Dr. Okun says about a general issue that doesn't require examining me to answer, and I think this is such a question. I frankly just forgot about it and still notice it all the time.
  10. BillBRNC

    Q About Arm Swing

    After starting Sinemet, the cramps and stiffness improved a lot. My left arm swing also improved, but still quite limited. Recently, I've had a lot of right shoulder pain. Also, my right arm swing never improved and remains almost totally absent. Two questions. First, is there a probably connection between the lack of arm swing on the right and the shoulder pain on the right? Second, when I walk, I have the sense in my mind that my right arm is swinging almost like normal, but when I look, it is only swinging in a very tight range of about one inch. In other words, very little arm swing. Is this unusual to have the sense that your arm is swinging when in fact it is not swinging? This whole arm swing thing is confusing to me. What is the actual cause of the arm not swinging? I know it is Parkinson's, but I don't know why the arm doesn't swing. The shoulder pain and shoulder stiffness seems like it might be connected somehow to the limited arm swing, but I just don't know much about it. I also have Parkinson's dementia, so most things confuse me these days. Thanks.
  11. BillBRNC

    Help With A Symptom

    Oh, and my neuro told me that I should feel free to pop a 25/100 fast acting any time I feel the Parkinson stuff get worse, unless it is right close to my next normal dose. You see, my Parkinson problems don't seem to be nearly as painful and disabling as the folks who have true Parkinson's Disease, as opposed to my Parkinson stuff that is an add-on to my LBD. You guys seem to have a so much more physical problems than I do. Good luck. Bill.
  12. BillBRNC

    Help With A Symptom

    S, thanks. Right after I posted this, I remembered that I had some spare fast acting Sinemet. I think 25/100. So took one to see what happened. It seems to have reduce significantly the discomfort in my shoulders and left arm and wrists, but no impact on my right elbow. My short term memory has been gone for a long time now, and I also realized again that I really can't remember how everything felt right before I took the 25/100. But there is no doubt that those parts of my body don't feel as messed up as before, but I can't tell if my right elbow has improved any or not, I just know it still hurts. So maybe what you said is it. Some but not all is Parkinson, but the elbow might just be bursitis. I never had bursitis before that I can recall, and I am 68 years old. Well I ask the neuro the next time I see him. Thanks again. Bill.
  13. BillBRNC

    What Happens When Sinemet Stops Working

    Dr. Okun, thanks for both pieces of information. Thanks again. Bill.
  14. BillBRNC

    Orthostatic Hypotension

    Dr. Okun, I have significant autonomic defficiencies due to Dementia with Lewy Bodies. One of the most significant problems is orthostatic hypotension. I read that OH is also a problem with regular Parkinson's Disease mostly due to autonomic defficiencies. I also had very servere heart failure about 8 years ago, and my various cardiologists say that the medications that reduce orthostatic hypotension would be bad to possibly fatal for me. Now forget for moment that heart failure might be a better way to go than DLB, but I wonder if you know of any medications that reduce OH that are OK for people with a history of really bad heart failure. My current EF is around 35, but it has been stable at that level for maybe 4 years or more. At its worse, my EF was 10 while I was on heart transplant protocol. Obviously I didn't have a transplant, becuase my EF started going up just when the wanted me to start primacor or something like that to keep me going while awaiting transsplant. But before I started that medication, I told them I thought I might be improving, so a new echo showed my EF had in fact gone up to a little less than 20 since my last one. I don't know how they claim to be able to measure it that close, but the real point was that I had clearly improved. Aanyway, with that background, what can I do to minimize OH. I have already reduced my heart meds to as low as the cardilogist can accept, and that worked some for a few months, but my OH started getting worse again about a two months ago. Any suggestions? Thanks. Bill.
  15. BillBRNC

    Parkinson's Disease & Dementia

    Just seeking some good information, because I read something on a Lewy Body forum that I find hard to believe. A comment was made that there supposedly no dispute that Parkinson's Disease always leads to dementia if the person doesn't die from something else first. I just find this hard to believe, so I wanted to ask you folks what you know or have read. Thanks. Bill.
  16. BillBRNC

    Orthostatic Hypotension

    Dr. Okun, just to complete the loop, I have now reduced some heart meds and eliminated two heart meds per the cardiologist. Turns out he has more than a little experience with this exact issue. Anyway, within a week or so of the final step, my resting BP had moved up to the middle of the normal range, as opposed to being below the low end of the normal range. Now, when I measure BP using the OH test, I still drop about 25 points on the top number and around 13 points on the bottom number. Bottom line though is the severity of my OH symptoms has reduced to a more tolerable zone, so I think this effort has been worth it for me anyway. Thanks for your advice, because it set the stage for my getting this done with the cardologist. My neurologist actually doesn't even know about any of this yet, but I guess he might since the cardio guy was going to send him a report. Thanks again. Bill.
  17. BillBRNC

    Orthostatic Hypotension

    Dr. Okun, yes that would be really nice. We are working on it and I think success will be the result. I am in transition now from having health care providers in one town while I now live two hours away in CCRC, so I am moving health care to new city and to CCRC. But certain issues are in full speed ahead and can't wait until we get everything perfect. I think I might keep cardio in the place where my wife still considers her home base, even though she not there all the time, and in part due to her having been doctor there so things tend to move smoothly for us there in terms of health care. I moving LBD and general care to new city, but still keeping neuro in former town because of same reason. The problem is it is just hard for me to get there in terms of not going crazy over each trip there and back. The LBD is hard to live with, as is Parkinson. It a bit of mess right now, and we keep thinking about moving everything to where I am, but we have a lot of good history in place and good realationships. But we are working on everything. But yes you are totally right about getting communication going without us being part of the direct channel. Thank Again. Bill.
  18. BillBRNC

    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.
  19. BillBRNC

    Orthostatic Hypotension

    Dr. Okun, I saw my cardiologist earlier today. After reviewing the data from my pacemaker/ICD aand the results of my echo, he then went into the issue of the heart medication, orthostatic hypotension, and what adjustments or additions he could support. First he said that I should not take Namenda, period. He thinks that drug independently can cause OH, plus bring back old heart failure or bring on new heart failure. He also said the several drugs available to treat OH, but I can't recall the names, are not good for people with heart failure. He then suggested further reducing some of my heart med dosing. And he also said that in my situation he would not use the OH drugs until he had basically eliminated most if not all of my heart meds. He simply believes that in my situation taking the OH medications would do more harm than good, such that he would come close to eliminating the heard meds before trying the OH meds. How fast we go though his game plan is depednet on how I do as he reduces one med, then another, then end a med, then end another and so on through the heart meds, or something like what I just said. He also will look close at my pacemaker readouts to see if fluid start to build up, which would mean that whichever heart drug he had just reduced or eliminated in fact resulted in increase in fluid level I guess in my heart or whatever. I probably have messed this up too much in the typing and recall of what he said, but my wife got it all nailed down solid as she is doctor too, but retired now. Anyway, I just wanted to pass this along. Oh, he also again asked me how much I need the dosage of Sinemet I am taking now, which has already been reduced some, and I told he that further reduction simply would not be possible in terms of quality of life, so the Sinemet is off the table. I said if none of his other attempts with med reduction work, then I might consider doing away with the Exelon, but that would be judged by what my cognitive/behavioral/autonomic is up to at that time. Personlly I think the Exelon is here to stay same as Sinemet. I won't increase it like the neurologist has suggested, nor will I go for the Namenda as he also suggested. By way, I have always questioned the use of Alzheimer medications for Lewy Body or Alzheimers or anything else in the same zone, since the data is somewhat squishy to say the least while the marketing department and funding done by the drug companies have been in overdrive. But see, even with how I personally feel, I still have been taking Excelon at a good dosage throughout the process, and I will stay on it until there is nothing left for it to help. Thanks for your help, because you made it clear that the cardiologist needs to be at least listened to closely considered when it comes to the heart meds and OH due to Lewy. Bill.
  20. BillBRNC

    Orthostatic Hypotension

    Dr. Okun, thanks for your comments. I have appointment with my cardiologist on Monday. My wife has filled him in on what going on, and cardio want to do echo the same monring before my appointment. Lucky for me the cardio I have at my old home is a really good one, and he reads and stays very current and had many PD and LBD patients over the years for their heart issues. I will send my wife your answer for her to do with as she sees fit. I will also take it when I got on Monday. By the way, why would a person me wear compression stockings if I don't have any fluid buildup in my legs ankles or feet. Even at my worst of heart failure, I didn't have any fluid build up and I didn't wear compression stockings. Just wondering. Thanks again for your help, as in it really helps. Bill.
  21. BillBRNC

    Music and Parkinson's Disease

    When I took what is called "Big" for rehab from my initial slam of Parkinson problems, my PT told me when the rehab was completed that my wife and I should take a particular type of dance class. She said any kind of dance works to improve balance and gait and further reduce tripping and other things I can't recall now. I ended up doing something different but the same idea that she also approved of, but I have heard from a number of Parkinson people that the dancing helped them a lot, and they still do it for both fun and PT.
  22. BillBRNC

    PD Guy - Shot Thru The Heart

    I have Lewy Body Dementia and it among other things really ruins autonomic nervous system. One of many things regulated by autonomic system is erection and orgasm. I can achieve neither for at least two years now. Also, several of my LBD drugs also cause same problems, so I get hit twice on that score. My wife as very upset at first and she said some less than thoughtful things to me. But after a little while, and after my neurologist talked with her, she slowly calmed down. She even stopped trying to get me aroused, because it so totally pissed me off because it showed she didn't understand or at least apprciate that hoenstly not being able to have sex was the least of my problmes with this disease. Things have moved along and gotten almost normal, but she is still quite sad and also drinking a little too much, but what the hell. Good luck to you because it isn't fun to lose that part of your life together, but that is the way it is sometimes. Oh, and she has been in therapy now for about a year because of all of this. The temper and behavior stuff from LBD truly prevents me from going into therapy, as I might literally punch out or injury the therapist due to being pissed off or upset or aggitated or anxiety problems. I just can't handle any stress or anything really at the current stage of my disease. I in CCRC now anyway, so that is changing too.
  23. BillBRNC

    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.
  24. BillBRNC

    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.
  25. BillBRNC

    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.