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John B

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  1. John B

    Effect of sudden stopping of Sinemet

    And how important is the rest of the UPDRS?
  2. John B

    Effect of sudden stopping of Sinemet

    Thank you for your response. Neuroleptic malignant syndrome sounds serious. This confirms my fears, but leaves me in question as to my actions in support of my wife. I think I will call the Neurologist office and at least confirm that they intend to record a UPDRS or other objective scale. I would hate for her to go through what I know will be a major ordeal and not get good data from it. I have no doubt that the second part (restore the Sinemet and record another scale) will NOT be done. This particular office is just too rushed. Maybe I should be shopping for a Neurologist who has time for her. Concerning the objective scale... I have looked at the UPDRS response sheet and it looks like it should take a good bit of time to do the evaluation. Not a problem for us of course, but I am just wondering how much time should the Doctor have allotted to this activity. Previous exams have been fairly quick (15 minutes), but I think he has allotted 30 minutes for the upcoming visit. Again, thank you for your input. It helps me to not feel quite so alone in this.
  3. My wife has been taking Sinemet 10/100 for 2 years prescribed by a Psychiatrist and it seems to help with her walking stability and also with anxiety. Recently the symptoms are recurring at 2.5 hours after taking Sinemet and the dosages are at 3 hour interval, causing her some discomfort. She is now on 4/day and the Psych was hesitant about increasing it without Neurologist consult. The Neurologist reaction was that this treatment is all wrong. He says she should never have had Sinemet as she was never proven to have PD. He wants to see her without Sinemet and wants her off the med for 3 days. I fear that this will have serious ramifications. Previous medication changes have landed her in the hospital. I would like to know what the effects might be of stopping this med suddenly for 3 days. Thank You.
  4. John B

    Which Medicare Insurance to Choose?

    Thanks for your response. I think you are talking movement disorder specialist... I looked at the list and she definitely would score more than zero on some of the items. At least 2 of the 10 neurologists she saw would present themselves as MDS. They and many of the neurologists gave her tests and interviews like this. All concluded she did not have PD. BUT that was 2.5 years ago for the last MDS and 2 years for the last neurologist. Things have changed a little since then. I know I need to get her to another MDS on a regular basis but am not up to the fight that will result. She is NOT a good "patient" and does not want to go to doctors or even take medicine. But she does keep the appointments already on the books and she does take her medicine and the Sinemet does help, I think. She surprised me this week and insisted she drive on a 5 mile trip to a fun event. She did fine. It had been 3.5 years since she last agreed to drive! I think it gave her a boost and I know it did for me.
  5. John B

    Which Medicare Insurance to Choose?

    Thanks for sharing your experience and for taking the time to write. It is helpful. John
  6. John B

    Which Medicare Insurance to Choose?

    Glad to know you got some good use out of Datscan. If I read this correctly, this was not the primary diagnosis method. Might I ask what was primary? You can say no if I am asking too much. Thanks for your input.
  7. John B

    Which Medicare Insurance to Choose?

    This comment sounds rather offhand to me. I don't really know what to make of it. Keep in mind that I am a newbie. I appreciate your input but could you be a little more direct? I would like to learn something from your knowledge.
  8. John B

    Which Medicare Insurance to Choose?

    Thanks for clarifying that Duopa is Medicare B. Yes, years in the future. Good to know. We actually tried to get a Datscan back before she became totally discouraged with search for a diagnosis. They wanted to do one at Kirkland Center in Birmingham and were trying to get it set up, but they are so compartmentalized/organized/disorganized as to be ineffective and non-responsive (good neurologists, I think, but bad organization). Shortly after that experience her neurologist at Vanderbilt told me that Datscan carried a high probability of false positive. He said basically that we likely would not know anything more if we were able to get the test. I am sorry we did not pursue it more at the time. Puzzle pieces are hard to come by on the "undiagnosed" bench. But her mental health was suffering from the build up/disappointment cycles and we had to just stop looking Ten neurologists should be enough! And here I have taken my own thread off topic! Thanks for your input on this. It helps and anything additional you or anyone else can think of is welcome! John
  9. John B

    Which Medicare Insurance to Choose?

    Thank you, Dianne, This is helpful and gives me much food for thought. In our case, the network part isn't a problem as this is a group MA plan and pays the same in or out of network. I understand that the commercial UHC MA plan is not accepted by one of our local hospitals, but the group MA plans are accepted (I have tested this). I will have to ask questions of my pharmacy about Duopa. That part would not be covered under a Plan F anyway but would be under the separate drug plan I would have to get with the supplement. The deny of coverage is something I had wondered about but was not sure how that would apply to PD patients. What are the expensive items they might be concerned about with PD? Thanks for your input. John
  10. John B

    Which Medicare Insurance to Choose?

    OK, I hear that sometimes, but I want specifics. If you or someone has had a problem, I want to hear. What specifically have you been denied?
  11. I am wondering if anyone has input on this issue. My wife has not been diagnosed (not for lack of trying) but has symptoms similar to Parkinson's and also some possible dementia. She will turn 65 in a couple of months and we have a one-time open enrollment and can choose any insurance plan to go with her medicare without questions. The way I see it, we could choose a comprehensive supplement such as plan F or a Medicare Advantage plan. She can have a MA plan from her former employer that looks pretty good. It is a plan I know because I am already on it. The MA network is not restrictive at all and out of pocket is $3500, about as low as I have seen. My only concern is over tests or procedures that might be required that they might not approve, whereas the plan F would approve anything allowed by Medicare. I think these would have to be pretty special procedures, beyond normal imaging and other things that have become routine. So what say you? Are there any procedures that may be common in PD or dementia that would possibly raise a flag with an insurance company? Any experiences good or bad with either type of plan?
  12. John B

    Side Effect Or Wearing Off?

    Thank you otolorin for your input and Mark for your additional content. It was my wondering if anxiety could be a side effect that led to my original post. I am still not totally convinced that her anxiety is solely from wearing off. Maybe it is a combination... I give her meds very carefully, and try to keep the Sinemet 10/100 3 hours apart and being mindful of meals and protein (not easy!). When things are working perfectly, I can see her going into slight anxiety (breathing becomes more rapid and shallower, posture going up and down with each breath) at about 2.75 hours after a dose. The next dose is given at 3 hours and the anxiety continues to worsen until about 1 hour into that dose. Then she gets better for the next 1.75 hours when it starts all over. This is the BEST it ever gets. The worst is when she goes fully into the "I'm dying" type of anxiety. Once there, she doesn't improve for several hours. Sleep or eating or reasoned thought are all impossible at these times. A little external upset from something remotely "real" will trigger this, and minor upsets are blown totally out of proportion. As we can't control all external factors, the bad anxiety happens at least every other day. Her motor symptoms are pretty well under control and she moves about with acceptable stability most of the time, even during the night. The anxiety is her worst symptom right now and it is definitely life-controlling. I encourage as much physical activity as she will tolerate and she sleeps a solid 12 hours each night plus 1 daytime nap of 1 to 3 hours. Any additional thoughts on this from anyone are greatly appreciated. John (I am still on moderation in this forum so this will take a while to appear. I didn't do anything bad, I promise!)
  13. John B

    Side Effect Or Wearing Off?

    The doctor decided to go with the same 10/100 immediate release, but 4 times per day instead of 3. So we can schedule them 3 hours apart when she is awake. It is too soon to tell, but she may be getting some improvement in time of quality life. She still gets slightly less than 2 hours of quality from each dose. I don't think he believed me about the suppression of her anxiety that happens when the doses are close enough together. I stand by my observations. Just reporting back in. Thanks for your encouragement!
  14. John B

    Side Effect Or Wearing Off?

    Am I correct in assuming the 10/100 CR and 10/100 immediate release (currently taken) contain the same total amount of medicine? So probably no slow transition needed? If he were to go with 25/100 immediate release, what would be a reasonable transition over time? Your comments are very helpful! Thank You!
  15. John B

    Side Effect Or Wearing Off?

    We have a couple of weeks before she goes to the doctor, and I want to make sure to be prepared by having a basic understanding of these drugs. If a larger dose of immediate release sinemet, say 25/100 were given, would the good effect last a longer time? What would be the downside? Is the CR version always preferable? Another forum member kindly informed me of comtan, which I understand to be an extender of the effects. Is that drug appropriate? Is it well tolerated? She is very sensitive to change in medication. Both times she went into the hospital, it was following a seemingly minor change in medication. So we want to go very slowly with any change. What would be a reasonable transition plan to go to the CR version? How about if the doctor were to go with 25/100 immediate release? I have found that her doctors don't really pay much attention to the transition. Or maybe she is just more sensitive to change than people they usually encounter. Your comments are very helpful. Thanks! John
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