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Gardener

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Gardener last won the day on October 23 2016

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About Gardener

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    Female
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    Ohio

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  1. Dyskinesia

    Mark, To be clear, dyskinesia can occur in the on state and off state with excess levodopa and dyskinesia can occur with excess levodopa with or without Parkinson's disease. Do I have that right? Thanks. Gardener
  2. Dyskinesia

    Hi Mark, I've read that dyskinesia is tied to the individual dose and not the accumulated daily dose. In my case, I'm having what I believe is dyskinesia (wiggling feet when seated in a recliner chair) that occurs in early evening after my 4th dose of 1.5 25/100 Sinemet. The wiggling begins about 1 hour after the 4th dose and usually lasts less than an hour. It doesn't bother me enough to cut back on my medication although I have tried to do so and the rigidity pain is worse than the wiggling. I also would like to know if dyskinesia is a function of both excess medication and disease progression or if you could have dyskinesia with excess Sinemet but no PD. Thank you so much for taking time to answer our questions. Gardener
  3. Problems that repeat

    Hi Murray, Without knowing any specifics it's difficult to comment but a couple of things come to mind. You could be experiencing changes in behavior/personality because of disease progression. Also, if you are taking levodopa it also has some of the impulsive side effects that the agonists are known for (take a close look at the drug side effects). It could be that you are sensitive to that drug as well. I have gone through periods when I don't feel mentally together but they are usually when I have had days without a good sleep. Are you sleeping well? Hang in there! Gardener
  4. Frustrated about doctors who question my diagnosis

    Hi Janice, Wow, thirteen years after dx, medications, etc. and your told you probably don't have PD! This happened to me at the 5 year mark. I was dx by an MDS and followed-up every 4 months with either the MDS or the NP. Sinemet was started after year one and gradually increased to about 1000mg per day. I really didn't feel my symptoms were under good control until I reached that dosage. I've been managing well on medication and the recent addition of Trazadone for sleep has given me back some energy. A year ago, I was scheduled to see a new MDS as the one who dx me moved to another health center. She questioned my dx and ordered a Datscan. I left that appt. feeling very confused and worried that maybe I had some other form of Parkinson's disease. I called her office the following day and requested to be examined while off medication as I felt the DatScan was totally unnecessary and a waste of money. She refused to examine me off medication and insisted on a Datscan. I decided to leave that facility and followed the MDS who originally dx me. I guess if there is any doubt in your mind a Datscan might help. There was no doubt for me as I have done my own medication experiments to assess my progression. Good luck and let us know how this turns out. Gardener
  5. A little something to think about

    I think what this study shows is that movement is important for slowing progression and disability. Many people are not able to vigorously exercise (myself included). But, I do try to keep active all day long. Sitting causes me the most discomfort so I avoid it as much as possible. Vigorous activity burns dopamine (for me) so I find that I need to take more medication. Gardening, housework and walks, along with medication, seem to help me cope with symptoms at 6 years since diagnosis.
  6. Still fighting for a diagnosis!

    Hi Lee, You say the doctors think you should be further along with progression - how long have you been symptomatic? Gardener
  7. Eye Muscle Tremor

    Hi MM, Yes, I have right eyelid twitching when medication is worn off. I had this symptom prior to dx and Sinemet controls it most of the time. Gardener
  8. Need your opinion...on Retirement disability

    Hi Stu, Dave's advice is spot-on. It took over three years to get my medication optimized and it makes all the difference. Is it possible to request a less stressful position within the educational system? We don't know how much your other health issues are causing you problems at work so it might be that optimizing PD meds will not be enough. Good luck! Gardener
  9. Hi Dr. Okun, I've been experiencing frequent urination throughout the day and especially when I recline. It is not uncommon for me to get up 3-4 times within the first hour of going to bed. This has been going on for several years but has steadily getting worse. I read that Levodopa can cause water retention which could explain the frequent urge when lying down. I have also read that constipation can cause this but not sure how. Do you see this often? Many thanks, Gardener
  10. newly diagnosed outdoor active female

    Hello Hiker, I was 55 when dx and had always been healthy and very active but slowed considerably before diagnosis. I don't have tremor so my main symptoms were rigidity, slowness and pain. I started levodopa within my first year and it helped me become active again but not to the extent that I was before symptoms. Six years from dx I'm doing well but experiencing wearing off and when I try to exercise or do physical labor my medication wears off in 2-3 hours. Otherwise, I get about 4 hours per dose. When I'm well controlled on medication, I feel better than I did in the couple of years leading up to the diagnosis. I believe that my progression has been slow and for that I'm very grateful. I hope that you can continue to do all the things you have been doing but don't feel that it is a "failure" to start medication. It may help you to continue your present lifestyle for many more years. I've been lucky so far in that I don't have any side effects from levodopa except for very minor feet wiggling some evenings. Good luck and keep us posted. Gardener
  11. trazone

    Noah, I didn't have any side effects with the 50mg dose and no lingering sleepiness the next morning. The dose was too low however and didn't work after a couple of weeks so it was increased to 100mg. I am a little groggy upon waking but I'll gladly trade that for a good night's sleep. I hope you find a solution soon. Gardener
  12. trazone

    I posted earlier that I was having good results with sleep taking 50mg of Trazadone at night. Unfortunately, it didn't last so I have been increased to 100mg which has worked that past two nights. Hopefully I'll find a dose that works for awhile. Just wanted folks to know that it might take some experimentation. Gardener
  13. trazone

    Noah, For me, it started working on day 3. I have to be careful not to take it too early as it starts to make me drowsy after 30 minutes or so. Gardener
  14. trazone

    Noah, I started taking 50mg of Trazadone about 2 weeks ago. I'm now sleeping 7-8 hours a night. No side effects so far. I can't believe how much better I feel during the day. After months of 3-4 hours of sleep and sometimes less, I can't believe the difference. I hope it works for you! Gardener
  15. Ambien is usefull for insomnia

    You really need to discuss with your PD doctor. Often insomnia can be addressed by adding PD medication at night. I have been struggling with the same issue and recently started Trazadone 50mg at bedtime. It is working but it has only been about a week so I'm not ready to proclaim success yet. Ambien was also mentioned as a possible solution but my doctor wanted to try Trazadone first. Good luck! Gardener
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