Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

John B

  • Content count

  • Joined

  • Last visited

Community Reputation

1 Neutral

About John B

  • Rank
  1. 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.
  2. Which Medicare Insurance to Choose?

    Thanks for sharing your experience and for taking the time to write. It is helpful. John
  3. 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.
  4. 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.
  5. 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
  6. 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
  7. 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?
  8. 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?
  9. 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!)
  10. 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!
  11. 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!
  12. 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
  13. Side Effect Or Wearing Off?

    Thank you, Mark, for your comments and for your focus on her quality of life. Your comments help with my understanding and with preparing for her next doctor visit. She is a good "test taker" so the doctor sees very little evidence of the symptoms. I have to tell about the symptoms or they don't get considered. I have some follow-up questions, please. If the dosing of C/L 10/100 were changed to every 3 hours, how would you physically avoid times of full stomach? The practicality of this baffles me. Or maybe I should be asking how important is the empty stomach dosing? Or maybe the question should be how long after dosing to wait before eating and how long after eating to wait before dosing? Related to this, how would a controlled release product avoid this, since it is releasing at several times over its 8 hour span? She has occasionally had some of the large involuntary arm movements you mentioned (at times of anxiety). Not every time, though, maybe 10% of the time, when some other stress is in action. Early on, in 2015 before any meds and before any significant walking problems, she had smaller involuntary movements of hands and legs. Her primary care doctor thought it indicated PD, but the neurologists (10 of them) said no PD. One who commented in more detail said these were not PD tremors, but were the wrong frequency. I later associated these smaller movements with anxiety also. She is pretty much OK walking at 9 am after 12 hours sleep and 16 hours without a dose of C/L. Would this be consistent with PD or not? Does something happen during sleep to generate the brain chemicals she needs? Thank you again for your learned comments! John
  14. I'm new to this forum and am in awe of the amount of good information exchanged here. My wife has had problems since 2014 with movement and anxiety. I try to help her as much as I can and hope to gain some knowledge. I will give a little background and then ask my questions. I apologize if this gets too long. The basics of it includes 2 hospital stays for inability to walk and severe anxiety, inpatient and outpatient physical rehab, every test anyone could think of, 10 neurologists including local hospital plus Vanderbilt and UAB. All tests negative and NO diagnosis. Prior to 2015, she had not taken ANY prescription medication in her entire life and had enjoyed good health. She was an avid exerciser. She is currently 100 pounds which is her normal weight. It turns out she is very sensitive to medication and small amounts seem to affect her more than most people. She is 64 years old. About 18 months ago after she returned from an 18 day hospital stay (in a wheelchair with no rehab!), one doctor decided to try generic Sinemet 10/100 three times per day. It was unclear at that time if the med made any difference at all, but she did gradually regain her ability to walk without falling too often and she continued this med at the same 3/day. Other current meds are mirtazapene 45mg at bedtime and clonazepam 0.25 mg 2/day. She was not eating well and had lost weight from refusing to eat her evening meal. At my insistence, she had gradually increased in physical strength and worked up to walking outdoors as much as 3 miles at a time with fairly good gait and no complaints. Indoor gait was not nearly as good but was stable. About 4 months ago, she reported difficulty moving in bed. Eventually this developed into inability to either rise from bed or get into bed. Eventually that led to needing much assistance walking at all. She has good balance at all times, but has an irresistible tendency to walk with bent legs, on toes, with short steps, which leads to a stutter-step, freeze and fall forward. This is a return of symptoms from 18 months ago. I did some online reading to see if she was getting the best from the carbidopa/levidopa, thinking maybe the underlying condition had progressed and possibly the med was actually working but was not enough. I started giving the C/L on empty stomach and changed her bedtime dose to 5pm. This turned out to be a very good thing as she now was willing and enthusiastic to eat her evening meal! in 3 months she has regained the weight she lost in the prior year. Symptoms have slightly improved as well since the schedule change probably due to a general attitude improvement. She is better in the mornings after her 12 hour sleep. Prior dosing times were 9am, 2pm, and 9pm. Current dosing times are 9am, 2pm, and 5pm. A pattern of response to this drug has become clear (90% of the time or more). I can't believe I didn't notice it before as it has been there for 18 months. Current response to each C/L dose is: During the first hour, no change good or bad. During the period from 1-hour-after until 3-hours-after, she does very well and sometimes says she feels great. Generally she walks upright during this time with good length of steps and needs no assistance. At 3-hours-after she starts to get anxious, and by 4-hours-after, the anxiety can reach very severe proportions (as in total debilitation and panic attack). So it seems that it was not lack of appetite keeping her from eating, but instead was anxiety! So my question is this. Given the response pattern noted, is this anxiety a symptom of wearing-off or is anxiety a side effect of the C/L that waits 3 hours to emerge? You have my thanks for sticking with my writing this far!