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  2. It actually ended up being a 5 minute meeting--I talked, he looked at his watch while I talked, checked my gait while I was on Requip (2 hours after dose) and basically did a "ok, well I'll see you again in 2 months". That was it, no further questions. The looking at the watch and not listening to me really upset me. So, I took matters into my own hands and I'll be seeing a MDS at UAMS in Little Rock on Feb 23. I am usually the most agreeable person you'll ever meet, but my line is crossed when you sigh and look at your watch when I explain what's going on. That was enough for me.
  3. Today
  4. PIGD

    Dan, thanks for your response. I think I may be having problems absorbing the point of what you are saying. Can I take from what you have shared above that PIGD can become a part of my symptoms as I lose the relative advantage later on and (1) may/will also include the side effects mentioned above that come with PIGD or (2) will not/may not include those side effects?
  5. Apathy - any suggestions

    Well, this is an eye opening conversation for me. All of you are way more experienced with Parkinson's than me and all of you are taking more meds than me..but you all have problems with apathy. So, I guess meds are not the answer, right? this sucks. -S
  6. Hallusinations

    I developed hallucinations after just a few weeks on Azilect. I also became quite agitated, and had short term memory problems. Stopping that medication fixed that within a few days.
  7. PIGD

    Thank You Linda for your very kind words. I wasn't a healthcare professional in the normal sense of the word, however for the last 15 years of my professional life I was employed as the senior administrator of a few large continuing care campuses and taught graduate studies (part time) in Aging and Human Services. I noted that you developed PIGD symptoms in the last couple of years. I found this excerpt that may be of interest to you, especially the part about losing the "relative advantage" later on. "Another post-mortem study found that patients with tremor-dominant Parkinson's disease had a lower degree of disability (Hoehn and Yahr grade) than tremor-dominant patients at 5 and 8 years (Selikhova et al., 2009), using the subtyping scheme discussed earlier (Lewis et al., 2005). However, tremor-dominant and non-tremor patients with Parkinson's disease had similar disease duration at the time of death. This led to their conclusion that tremor alone does not predict a significantly longer survival: patients with tremor-dominant Parkinson's disease progress more slowly during the initial course of the disease, but lose this relative advantage later on (Selikhova et al., 2009). Finally, patients with tremor-dominant Parkinson's disease have better cognitive performance than non-tremor patients with Parkinson's disease (Vakil and Herishanu-Naaman, 1998; Lewis et al., 2005; Burn et al., 2006) and are less likely to develop dementia (Aarsland et al., 2003; Williams-Gray et al., 2007)." As for your question about your meningioma that abuts your cerebellum, I'm simply not qualified to answer. Sorry. My interest in the topic of PIGD stems from my desire to better understand what was happening with me personally, and to help others as best I can. Anyway, I hope this helps. All My Best! Dan
  8. Apathy - any suggestions

    +1 on Linda's comments. Just have to go get 'er done. I may add that if it is going to get done it will in the first two thirds of the day before fatigue sets in for me! I get up relatively early and by the third cup of coffee around 8am when the news on TV starts to repeat itself I know it is time to get in gear. I try and concentrate on that one or two main "to dos" and I keep a running list for the week and cross them off as they get done. Exercise, as a natural habit< is the biggest challenge for me and my sedentary type B personality. Executive function is taking some hits here and there in the planning stage. That all being said, there are still a few things I used to care about that just don't matter to me anymore! Thats no all bad when productive time is less. DB
  9. This & that!

    Thanks ! I'm going to order the first one.
  10. This & that!

    I read them both, I think I enjoyed the first book more. Order of reading these only matter because he builds on what has happened since and things he talked about in the first one. I think reading the first one my add that "Ahh" effect to the why he mentioned things he did in his second book. Hope this make as munch sense typed out as it did in my head when I wrote. Feeling tired and might be typing gibberish. Blessings
  11. Yesterday
  12. Hallusinations

    Thanks for your responses. All are very helpful. I am on 4mg of Neupro and the minor hallucinations may be tolerable, at least for a while. I take 10/100 Sinemet 5 times a day. It seams that all medication has some side effect. It seams tougher to type this than to deal with the side effects.
  13. artane

    Chuck, Depending on the dosage you were taking, it does not have any untoward effects on the body if it is stopped abruptly. You were only on it for a month, so I am guessing that the dosage was not that high. When a person has to slowly step down from a medication is when the dosage is high and/or they have been on the medication for a long period of time. I may not agree with how he did it, but I think he should have let you know that this is a trial run to see how you react. I hope this helps and please keep me posted.
  14. medication schedule

    Sheryl, Please keep me posted. Instead of the times I laid out for you, you could substitute the starting time as the time she wakes up. That would be the starting time for the Sinemet, then you would give the next Sinemet 6 hours from that time, and the last Sinemet 6 hours from the second dose of Sinemet. You would also follow the same timing with the Mirapex. Example: 1) wakes up at 6:00am. Sinemet 6:00am, Mirapex 7:00am, Sinemet 12:00pm, Mirapex 1:00pm, Sinemet 6:00pm, Mirapex 7:00pm. When people are early risers they may experience an off time prior to bed because the medication was started early. If this happens, it is fine to take a Sinemet prior to bedtime if an off period should come about. I hope this helps and please keep me posted.
  15. Hallusinations

    Hello MD George, Having just gone through this myself with Neupro, I think I can offer some thoughts. I was on 6 mg Neupro patches for about a year, along with Levodopa. My wife sat me down one day and said do you realize how paranoid you've become. At the same time I was experiencing delusions and hallucinations. When I saw two neurologists (Movement Disorder Specialists) they rather quickly determined I was experiencing a medication-induced psychosis. Apparently this is rather common for PD patients who are 60 or older and being treated with Neupro, or any of the agonists. They eliminated the Neupro and everything greatly improved, the hallucinations, delusions, etc. However, I have still had a few minor hallucinations like floaters in my vision. Unfortunately, my movement problems got worse. even with higher doses of Levodopa. Fast forward to the present. Shortly after the Neupro was reduced I became very anxious and depressed, clinically so... it was bad. It corresponded with some neuropsychological testing which confirmed the same. My neurologist quickly called me and placed me on a good antidepressant/anxiety med. She explained that Neupro has an antidepressant quality to it and when they eliminated it, it "unmasked the underlying depression and anxiety that had developed in conjunction with PD." For now, I think we have things in hand and hope to be feeling better soon. Anyway, I hope this helps. All My Best! .
  16. medication schedule

    Thank you so much for this reply. The schedule example will be tried tomorrow! Sheryl
  17. Diagnosed at 40 very scared

    Sierra Farris MDS clinic in Denver or UF Dr Okuns Group is also very good. They see many PD patients from across the country
  18. Diagnosed at 40 very scared

    Thanks everyone, I hope I see the light at the end of the tunnel soon! It is a big fight for me at the moment, I dread waking up each morning and am scared of being alone with my thoughts. I am usually a very positive person so these feelings are hard for me to understand. Physically the neck & shoulder pain, arm weak feeling and buzzing feeling all over is what gets me the most. I just keep telling myself it will get better and I can do this. I am looking at trying to see a specialist at either UCSF or Stanford. Anyone have any experience with either?
  19. Restore-gold

    Hiker, The only side effects that I am aware of is some stomach upset and heart burn. I hope this helps and please keep me posted.
  20. medication schedule

    Sheryl, The first thing you should do is call the doctor and see if he wants you to take both medications. It is not uncommon for a patient to take both medications. With this in mind I would not increase or decrease any of the medications until you speak with them. As far as dosing of the medications, if you are in fact supposed to be taking them both, would be as follows. Since the Sinemet is an immediate reacting and the Mirapex is a longer acting medication, it is best to take the Sinemet at a time when the Mirapex maybe wearing off. Below is an example of a schedule you should try is you are experiencing the "off" effects. 8:00am Sinemet 9:00am Mirapex 2:00pm Sinemet 3:00pm Mirapex 8:00pm Sinemet 9:00pm Mirapex Now this is the schedule for the "perfect" patient. It may have to adjusted for each patient, because as we know, no two patients are alike. I usually recommend that a journal be used to track "off" times, Dosing times of medications, food intake, excercise, and sleep times (including naps). You may start to see a trend when you track these over a period of time. It must also be noted that Sinemet should be taken on an empty stomach (30 minutes prior to a meal or 90 minutes after a meal). If the meal contains protein or is extremely fatty, the Sinemet should be taken 1 hours prior to that meal or 2 hours after that meal. I hope this helps and please keep me posted.
  21. deciding about drugs

    Hiker,I am glad to see that you have researched your options for possible medications. There a few different choices when it comes to medications used to help motor symptoms in Parkinson's Disease. Azilect is usually the drug of choice for relieving motor symptoms. When I council patients about Azilect side effects or complications I focus on the most common issues first, which would be some upset stomach, possible joint pain, and insomnia (which is most prevalent in the first few days of therapy). The serious, but RARE, side effect of serotonin syndrome when take with certain anti-depressants. I have discussed this with hundreds of doctors, neurologists, and movement disorder specialists and have been told that they have not seen this reaction in any of their patients. The other issue of concern is the interaction of Azilect and tyramine rich foods (aged cheeses, cured meats, tap beers, and certain wines). This warning has since been removed from the labeling process due to the fact that Azilect has such a great affinity for MAO-B and very little, if any, affinity for MAO-A (which is where the interaction takes place. Amantadine is another medication used to help with motor symptom problems. Amantadine is primarily used as an antiviral, but in further research it has been shown to help with motor symptoms in PD patients, though the actual mechanism is not fully understood. It is usually prescribed as a twice daily dosing but, a long acting amantadine called "Gocovri" has just been brought to market specifically for motor symptoms of PD. Some possible side effects may be lightheadedness and a lowering of blood pressure upon standing. As far as natural products are concerned, I will usually recommend that a person who has just been diagnosed with PD stay with prescription medications to start. This is mainly due to the fact that these products are not regulated by the FDA and have less stringent rules of their production and claims of how they work. I make sure as a Pharmacist I make sure that my patients know what are the main side effects to look for. When a patient sees the entire list of possible side effects, it can become overwhelming. I hope this helps and please keep me posted.
  22. Hallusinations

    All Pd meds that affects dopamine levels in the body can cause hallucinations, abnormal thinking including Sinemet, requip, Azilect when taken in excess. Requip, Azilect are more prone to hallucinations
  23. Bipolar and parkinsons

    Parkinson's and Bipolar Disorder? Interesting combination. I've always wanted to tell my Movement Disorder Specialist that the wild swings between "on" and "off" times (and even various "on" and "on" times) in Parkinson's made me feel as though my body was bipolar. So to me, sadly, Bipolar Disorder seems a perfect match for Parkinson's, especially since Parkinson's is not satisfied with just disrupting my bodily movements, but it also freely crosses over to corrupt cognitive and psychological functions. When Parkinson's turns "off" my body, it also turns "off" my brain functions. Stress and Parkinson's do not mix. Stress can flare my symptoms (movement, cognitive, physiological, or whatever else Parkinson's is jacking with at the moment) way out of proportion to the stressor. Doctors tell us to cut the stress from our lives, but those words are so much easier to say than do because stress can come from so many sources, some of which are good (vacations, lunch with friends). Yoga has given me some tools to help cope with stress and so has eliminating news (no news radio, television, papers, magazines, discussions). Also getting outside for a walk really helps me. Sun or rain, just getting outside and moving is such a relief. However, eliminating or minimizing stress doesn't really stop Parkinson's rampage. It just sort of limits the supply of one source of fuel. Not sure what medications or supplements you use, but L-Theanine supplements work wonders to boost and stabilize my cognitive functions. Best wishes.
  24. Hallusinations

    Welcome, MDGeorge. I experienced audio hallucinations from Amantadine; they went away as soon as I stopped the medication. I suggest a neuro-psych evaluation. It will determine whether the medications are causing the problem or if it's progression of your PD. For a professional opinion, post your question in the Ask the Doctor or Ask the Pharmacist part of the Forum. Dianne
  25. Hallusinations

    Hello, I am new to this forum. I was diagnosed with Parkinson's about 3 years ago. not so bad as many, but worse than some. I was curious as to any that have experienced hallucinations. is it just a side effect of medication (Nerupro patch and sinemet).
  26. Bipolar and parkinsons

    So sorry to hear this. It's bad enough to be bipolar but now to have something else must be devastating. Please take things slow and maintain your meds on time. You need to be on top of things even more so from now on.
  27. Otolorn Well common sense is always best.We have had 2 blizzards already.The first I wondered why no travel adversary so I caaled our media.Later that day usre enough our sheriff posted a advisory,I dont credit but you be surprised what is overlooked today.lol The second storm we got it all overnight about 2 ft.I myself didn't go out till roads were better.I do have a 4 wheel drive dodge truck with all the gadgets .These trucks are great but they don't stop any better than cars.people drive them fast by my house i pray they suddenly don't have to stop. As far as PD stopping driving ,it depends any things.I have found we have common deficits in this area.One is pulling out safely.Somehow we might have a problem at T intersections calculating traffic.I am aware and always look at least twice slowly before I pull out on the road.Another is at night we can get a little confused where we are.I have found paying special attention no "nightdreaming"lol has taken care.I do drive slower but I can say Im a safer driver than many.. The best advice is maybe get a outside evaluation privatly.I use to have some aweful jerks but they always calmed down while concentrating.Then after a med change they went away for awhile not there back but mildThise years of constant concetrating payed off and gave me a skill.I only wish my doctors could have been more professional in helping me .Even today they still cling to a physiological cause Hope your doctors are better. john
  28. My input on this subject is going to be rather blunt. If you are unsure about driving in the snow whether you have or do not have PD, do us a favor and stay home. It’s hard enough navigating my daily commute with the drivers who do not know the rules of the road. An unsure driver is a danger to everyone and should refrain from operating a motor vehicle. Dave
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