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Everything posted by BillBRNC

  1. 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.
  2. 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.
  3. CBD Oil--Does This Work?

    Thanks. I have now read through some of the earlier discussions. Yesterday, I went ahead and ordered a 30ml bottle of the non-THC oil. Where I live, the THC kind is illegal. I can't really tell if the non-THC is legal or not. Everyone says it is legal, but I am not personally sure about that. Regardless, I'm going to give the non-THC a try. Due to my DLB, it would be a terrible for me to use the THC type, at least in my opinion. I just hope the non-THC version offers some help.
  4. Another Arm Swing Question

    Dr. Okun, I have a question about arm swing. I have DLB, and the Parkinson stuff hit full force about 6 months ago. Sinemet and rehab got me back walking right without falling, plus better balance. After a while, I noticed that my left arm swing was not normal, but getting close to normal. My right arm swing was mostly zero, although my right arm would move a little within about an inch range. Before Sinemet, neither arm would swing at all, and my neuro described my arms as almost fixed. Anyway, time passed and the left arm has remained the same level of improvement, and the right arm has not improved much at all. Here's my question: While my right arm swing has barely changed (it might now swing within a 1.5" range sometimes), I have the sensation when I'm walking that my right arm is swinging away like my left arm, but when I look at my right arm it is barely moving. It feels like it is moving, but it isn't really doing much of anything. To the extent it moves at all, the movement seems to come from the elbow to the hand, but not the shoulder to the elbow. What does this mean, if anything? Particularly the sensation I have that might right arm is swinging. It is really strange. Now, I don't really consider any of this to be much of an overall problem in the bigger picture, but I'm more just curious. Thanks. Bill.
  5. Another Arm Swing Question

    Dr. Okun, thanks for your reply. It's good to know that there isn't something else wrong with me in that others apparently have noticed the same thing. When I asked my local neuro, he didn't really say anything specific in response to my asking. I got the impression he might not have heard this from any other patients, but since he doesn't usually ramble on about much of anything, I thought I would ask you. Thanks again. Bill.
  6. Music and Parkinson's Disease

    I play the banjo, not as well as I used to, but well enough. And sing, I do too. Mostly old time mountain music, but also a lot of more modern stuff through the 1960's. The thing about playing the banjo is that most people can even tell when I mess up something, so that's nice. It is also easier to play a banjo than a guitar, as it is tuned to an open G. I used to play the guitar, but I sold mine and have played the banjo for a good number of years now. As I progress through my DLB and Parkinson stuff, I hope I can continue playing up to close to the end. I like it. It soothes the soul. I love to play in minor keys, don't know why. I used to play in bars and local jams, but I had to stop due to missing too much stuff, and those guys do notice, and I couldn't remember words to songs anymore, and I don't like to use paper things to read from. Same for iPad's and such. I just plug along now, but folks still seem to enjoy listening. And if they don't, I don't care because I enjoy playing and singing by myself as much as anything. For those who play, keep on playing. For those who don't, take up an easy instrument that you like, then start playing with other people as quickly as you can, as that is the best way to learn and advance. All you really need to know to start is three chords on whatever instrument you are playing, or the individual notes for the same three chords. Just take off. Happy picking.
  7. 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.
  8. Neck & Shoulder Issues

    I take Sinemet CR around 7:00 a.m. and again at around 6:00 p.m. Can't recall dosage right now, but it has been adjusted around to a middle level dosage. I also take a Sinemet fast acting at bedtime. This routine seems to have worked well. For the past few weeks, I've had quite a lot of neck and shoulder pain and stiffness, more than anything pre-Sinemet. Anyway, my question is whether this type of issue is common for those with Parkinson's? I don't think I did anything to bring this on, but I can't know for sure as I have some memory issues that cloud my life. Thanks.
  9. Neck & Shoulder Issues

    Thanks, Kevin.
  10. Neck & Shoulder Issues

    Thanks to all. These problems have been around a little too long to be due to some unknown injury, at least I think so, but I still wonder if it is Parkinson-related because I've had a lot of other mobility/balance issues in the past, but mostly helped by Sinemet and the Big program and exercise and passage of time. It is hard to say whether the problems are worse towards the end of Sinemet's dosage, because they seem to exist most of the time. These problems aren't killing me by any means, but they do hurt more than just a little and also limit the motion of my neck and right shoulder. Oh, my arm swing has been gone in my right arm for a long time, not brought back by Sinemet. Maybe that is a clue. Thanks again.
  11. Neck & Shoulder Issues

    Thanks for the reply. Yes, exercise and stretching solves many problems, and I will start today. I exercise quite a bit already, so I don't need to increase that, but I do need to stretch more. I guess my real question is whether it is unusual for the neck and shoulder thing I describe to not develop until so long after I started Sinemet. Just wondering if it is Parkinson's or whether I somehow injured myself without knowing it.
  12. Dr. Okum, I have Dementia with Lewy Bodies. Maybe six or more months ago, my neurologist put me on one pill of Sinemet 4 times per day, with the last dose being at bedtime. The Sinemet worked really good at reducing and almost eliminating all the pain and discomfort from muscles and joints. But the same medication seems to have made my cognitive problems and general feeling of wellness worse. The pain is gone, but I just don't feel good most all the time. My question is whether there is any hard in at least trying a shot at cutting my total dosage in half to see what happens? If the some of the pain returns, but I also generally feel better in the head, then I might choose to accept the pain as the cost of having a clearer head. If the pain is really significant, then I'll move the dosage back up to the current level. Is this ok? What do you think? I don't see my neurologist for another 2 months. But I fairly well know what he will say, because he thinks it is up to me to decide about the trade-offs associated with Sinemet. Since I don't remember how I felt in the head before starting Sinemet, I would like to find out to see about the trade-offs. My wife the family doctor thinks this would be ok, but she would want to call the neurologist first, which is ok with me, but I just wanted to know what you think about this. Thanks. Bill.
  13. Question About Cutting Back Sinemet

    Dr. Okun, thank you much for the suggestions regarding the CR version. Who knows, that just might be all that I need to do. I will discuss immediately with my local neurologists. I actually have never mention this to him specifically, and was going to tell him on my next visit, but that is a couple months off. My wife (family doctor) can call him and see if this might be a good idea to try for a couple months prior to my next visit with him. Thanks again. Oh, I apologize for spelling your name wrong in my original message. I just noticed the error. Bill.
  14. Ambien is usefull for insomnia

    I had terrible insomnia for really a couple of years, but maybe 4 or 5 months ago I started taking Trazadone. I've been taking it nightly, and it works very well almost all of the time. Some of the time my mind is buzzing too much for the Trazadone to work well, but it is the best if you ask me. Many decades ago I took Ambien when I had trouble sleeping, and I didn't like it at all. Hope this helps.
  15. Sinemet Duration

    I'm sure this has been discussed till the cows come home, but I keep reading that Sinemet loses it's effectiveness after 5 years, thus requiring other things to be added to boost it. I've also read a lot that 5 years or so of using Sinemet will cause bad things to happen to the patient. What is the truth on these point? Thanks Bill.
  16. Help With Question

    I have Dementia with Lewy Bodies, so I have a full set of Parkinsonian symptoms. I've recently noticed the onset of a problem, and I'm wondering if it is something true Parkinson folks have to deal with. My arms and hands do not have tremors as I understand the word tremor to mean. But I do have problems in controlling the movement of my fingers, hands, wrists and arms. It is like my brain won't make them function as I want them to function. This comes up in many situations like opening or closing doors, turning on light switches, typing, tying shoes, eating, and one and on. I can still do all those things, but it takes longer and it is very uncomfortably strange when I do them. Do these symptoms ring a bell for anyone. I just want to know. Thanks.
  17. Help With Question

    Peace, well said. Not only do I now allow stuff to fade into the background, I seem to go out of my way to avoid evening hearing things in the first place. Things that seemed to matter so much to me for many years just don't seem important to me anymore, at least I don't want them to be important to me anymore. Sounds selfish I guess, but it takes all I can gather up to just stay engaged with life sometimes. Lewy Body Dementia or sometimes called Parkinson's Dementia is really difficult to deal with oftentimes. Just saying. Bill.
  18. Often when I stand up from a chair or get out of bed or bend over to pick something off the floor I get dizzy, flush and off balance. It seems to increase for a few seconds, then it takes more time to clear up. I come close to falling, but have not yet fallen, but I have had to grab things to stay on my feet. I understand that this is likely due to the Parkinson stuff, but I am wondering whether this is something that progresses in severity over time or whether the level it is at now tends to stay more or less constant far into the future. Any help would be appreciated. Thanks. Bill.
  19. Dizzy & Off Balance When Standing Up

    Otolorin, thanks for the reply. I have this when I am on medication, as I'm on it all the time. That said, I do think it becomes more noticeable when I get up at night at a time when the last dose has probably mostly gone. I think it is the Parkinson end of things, as opposed the medication, but I thought I would ask to see what others who have it think about it. Thanks. Bill.
  20. Moved from MA to VA - new doc questioning dx of PD.

    Maybe you could get your old MDS to call the current MDS you like the most to explain the diagnosis and why it was reached. Probably hard to get a doctor to do this, or may have the old doctor write a thorough letter. Just thinking of a way to avoid a third opinion, as this could go on forever. I think many specialists simply don't care to accept a diagnosis reached by another doctor, particularly one they don't know. Good luck.
  21. Social Security Disability - Trump's Budget

    Stump, I agree with everything you said, but I worry that simply reducing the amount of money in the budget will lead to many qualified people getting denied in some districts while unqualified people continue to be given benefits in other districts. Not all SSD districts operate by the rules, others do. You can guess for yourself which ones do and don't, but it isn't overly hard to figure out. The bureaucracies that administer these programs are often totally out of control, and that needs to be fixed right away in all government programs. Just my two cents.
  22. Social Security Disability - Trump's Budget

    I was on SSD for about 8 years before hitting my full retirement age, and it really helped. Did I truly need it, no. Did it really help, yes. I can see making sure that the law is followed in making the initial disability decision, but arbitrary cutting the budget for SSD makes no sense, since that would mean that some people who qualify and need it will end up being denied. My view is that they should give SSD the money needed to fund the program, then require them to have good judges and such to insure that non-disabled people don't get disability. If there ends up being money left over in the budget, then just add it the next year's appropriation. If you go for a number of years with surplus, then maybe consider reducing the budget, but not to the point that SSD fails of its essential purpose. Yes, it sure looks like Trump's budget intends to cut not only meat, but bone, and I don't like that one dang bit.
  23. Yeah, I know this looks like a dumb title. My first question is about taking Sinemet too close to the time of eating, before or after. I've read that protein interferes with the absorbing of the Sinemet. Ok, does this mean that only some of the Sinemet takes longer to do it job, or does it mean that of portion of the Sinemet is lost and does nothing? Next question deals with Constipation. I've had constipation for about a year or more, progressing in severity over that time. My neuro says that the constipation is likely due to the Parkinson component of my Lewy Body Dementia. He has me taking Miralax for it, something to do with muscles in the gut not working right. So, I'm just wondering if this is a common problem for PD? If so, what do folks take other than Miralax? That's it for now, but I thank you for putting up with these questions.
  24. 3 Questions--Sinemet, Protein, Constipation

    Dave, thanks for the suggestion, a thank you also to PD.
  25. Sinemet making me feel sick?

    I eat two Saltines right before taking my doses of Sinemet, even if I'm eating right after taking it. It blows my stomach away if I don't.