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BillBRNC last won the day on November 13 2017

BillBRNC had the most liked content!

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About BillBRNC

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  1. 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.
  2. Important Sinemet Question

    I got the answer from another reliable source, but thanks for looking.
  3. 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.
  4. 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.
  5. 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.
  6. 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. What Happens When Sinemet Stops Working

    Dr. Okun, thanks for both pieces of information. Thanks again. Bill.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.