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Deb2shoes last won the day on November 20 2014

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  1. Stopping Azilect

    I was on Azilect for 5 years. It was the first med I took. I was diagnosed in April of 2010 and started taking Azilect in November of 2010. In the first month or two I had terrible headaches that went away with aspirn type med, also caused me to have nausea and at first very, very tired, those symptoms went away after about two months. It caused me to have lower blood pressure (even lower than the PD caused) with symptoms of OH which got a little bit better when I started taking levadopa in Sept. 2011. Although in 2012 when I started working in NY and went up and down in the subway stations and train tracks it was really bad. When dr. added the neuro patch I put on quite a bit of weight and I now do not suffer from OH but my blood pressure still runs low. Azilect didn't help me with tremor but did help me with dystonia, anxiety, blurred vision, aspirating, most stuff the muscles normally do without my knowing about them doing it and had stopped doing because of the PD. Although after about 6 months I needed something more I held out for another 5 months whe in September I started taking sinement. I always knew I had missed not taking my Azilect when I would get a bad headache. Allthough this post is about azilect someone asked does anyone ever continue taking meds long enough to make it through the side effects. I did with Azilect and also the Neupro patch. The Neupro patch is a whole story in itself. The side effects for me were really bad but I hung in there!!! Back to Azilect - so I've been on it for 5 years and this past spring March or so I started gettin what Stump described as bugs on refrig, etc. I read that hallucinations start with black flashes coming from the corners of my eyes. I had those too. But definitely first saw black "movement" on the floor which I thought were bugs or worse, but upon checking nothing was there. In early May of this year items such as a suitcase or pillow on couch became little people going around and around in circles with flashes of color and spakles. A box in the corner became the I SWEAR in my eyes a box in the corner became the Gratefull Dead bears dancing around in a circle in bright colors and spakles. The hallucinations always were based on an object that was already there and usually happened when awaking in the morning, from a nap, or during the night. It is hard not to get caught up into these things because they are so interesting to watch. Then in early June upon waking up in the morning I looked out the window and there was a man sitting on my neighbor's roof (whom I took to be a roofer) and I actually saw other people coming up on he roof. My husband said there was no one on my neighbors roof nor was she getting a new roof. When I went back to look - there were wires to the house and the chimmney was where my hallucinary people were. Strange right? Well the roofer was there and othere things started happening and the hallucinations became to be threatening. My half open door was a man on stilts. When I told my dr. he had me come off of the Neuro patch first - but I still hallucinated, then I came off of the Azilect and it took a while but after about a week the hallucinations became only shadows and now thank God have disappeared. So I do not know if it is the Azilect, or a combination of the Azilect and Neupro patch. They say Levadopa causes hallucinations after awhile. Although PD itself can cause hallucinations which is not a good thing. So I want to go back and take the Neupro patch again because of dystonia and bradykinsea but my dr. says no. He is sending me to a PT dr. and he wants to see if I get relief through exercise. So I've put up with a lot is side effects from meds but the hallucinations I couldn't handle!!!!!! I am grateful every day since they stopped!!!
  2. New here, Questions about grandmother with Parkinson

    Dear Robin, Thank you for posting about your grandmother's condition. I am 66 and was diagnosed with PD 5-1/2 years ago. I am hopefully on the other side of working through hallucinations. I was on sinement, nuero patch and azilect. My neuro asked me to come off the neuro patch and the Azilect which I did. I was gradually reduced through titration. I feel the culprit was Azilect but that is just my opinion. The hallucinations are now gone. I am now only on sinement and bradykinesia (slowness) and dystonia (rigidity) have returned and are very bothersome to me. I want to go back on the neuro patch but my dr. wants me to try the BIG PT first to see if that helps. I have done BIG before and still do it along with walking only 1-2 times a week. I have been the caregiver for my mother who passed away this past month and had really stopped taking care of myself. Exercise has always helped me before so I will try the PT first before more meds. In the past Tai Chi was very helpful with the pain from dystonia. I think that the involuntary movement you refer to is dysinksesia caused by long-term use of the levadopa. Also caused by too much levadopa in the system at the same time. I had a mild case of dysinkesia because of a COMT inhibitor medicine added to prolong the effect of levadopa. I was taken off that med and the dysinkesia stopped. Please let me know how your grandmother fairs and I will do the same. I have just started my walking and BIG exercies again to everyday and have an appointment with a very well recommeded PT dr on Friday. Although I had only a mild case of dysinkesia - hallucinations are much worse to handle. With me they started out very innocently and overtime became menacining. I have also read that hallucinations can also be caused by the PD disease itself. Will let you know. Thanks again for posting.
  3. Doctor's? are they worth it?

    I had a general neuro who diagnosed me when I was referred by my endocrinologist then I called the teaching hospital in my state and asked for a movement specialist and was assigned to one of the neurologists there but later found out she was not a Movement Specialist just a neuro but read that her research was in Sinement. She was ok although when I told her I was having dyskinesia she didn't believe me. I had only been taking sinement for 3 years at that point. I continued to complain about the dyskinesia and finally she saw it happen in her office and she believed me. That pretty much upset me - that she didn't believe me - she knows I read up on this stuff all the time. Then I finally read that the Comtan that she prescribe when taking sinement can contribute to dyskinsea. Ok put 2 and 2 together. I stopped taking the Comtan (weaned) on my own and the dyskinsea stopped. But the final straw was her secretary would not return calls, would not have her call in prescriptions, etc. It took 3 phone calls to finally get a prescription she had said she would write when I was in her office.. So I asked my PCP to see me for the PD and he said he couldn't because he was not up to date with the new meds and he could not and so he recommended a new Movement Specialist in his group and he is ok. I've always had to see my neuros every 3 months. I like my PCP and wish I could just see him. I hate seeing his NP because I'm old fashion and want to see the doctor. My PCP would probably pass me on to his NP and I wouldn't like that.
  4. No new update on generic Azilect...here's why

    Teva petitioned and the US Patent office granted an extension to Teva's patent, originally to expire on 2/7/12, to 2/7/17. I read there was an unsuccessful lawsuit by a company to fight the extension. I have been taking it for 5 years and was thinking bout not retiring until 2017 in order to be able to afford Azilect. I had heard it was so expensive in regard to the medicare "donut hole." I was assured by the person helping pick my drug insurance that will not be the case for me. I am glad I retired now though because my symptoms (especially what I call my PD "illness") are much less without the commute and the stress from my work load. I just retired in June and haven't yet ordered Azilect on my new prescription plan. I will see if that person was correct.
  5. Sudden inability to talk

    Before I was diagnosed with PD and after diagnosis, but prior to my taking levodopa, I had episodes of speech distortion exactly as you described your mother's condition. I would be speaking to someone and my words ran together, were garbled, were incoherent plus took my breath away. Although, when I stopped speaking in shock, unlike your mother, my next sentence would come out fine. Which was always a response to my listener's question, "What?" These episodes only happened a few times in about 6 months and since starting the Levodopa has not happened again. All through my 5 years of PD, I have had difficulty with my speech - mostly stuttering, slow formation of words by my lips and lack of air to get full sentences out. I am 66, I now take 25/100 5x a day and am starting agin to be bothered by not enough air to finish the last word of a sentence and I have my drooling and spitting. When first diagnosed, I complained to my neuro about speech problems and especially choking. I was not tested until after I had started taking levodopa and the meds had pretty much relieved my symptoms at that point in time of my testing so there was not a problem. Now, even on the meds, I loose the breath to get out the last words of the sentence although the intelligible speaking has not started up again. I guess I am due for another swallowing and speech evaluation. I've tried doing the voice exercises on my own and the noise gets on my nerves and also the tongue exercises for aspiration because my 82 year old mother has to do them and they really wear out the old tongue and both are boring. What we have to go through to keep our parts working Ugh!!! But I know I have to do something before it gets worse.
  6. It happened 2xs: I got up off of the couch and my foot and leg were frozen to the floor and I couldn't move it because it was stuck to the floor. I had to fall forward towards landing back on the couch to get my foot off the floor. I made an appointment with my endocrinologist to complain to her about side effects of the new osteoporosis medicine she had prescribed for me and she saw my hand shaking (which had been happening for about 5 months by then) and she said it definitely would not do that to you and said I needed to make an appointment with a neurologist and I did.
  7. Wondering about Meds?

    I think Azilect is a good med to start. 5 years ago when I was first diagnosed, I had a lot of pain from rigidity, my fingers were melded together. The first 3 fingers were in love but the middle finger didn't like a 3some and went over and melded with the index finger all on my left initial PD side. It felt like I had a red hot iron bar that started at the tip of my index finger up to my elbow. Tai Chi helped a lot it was unbelievable but it only lasted a couple of days, I did yoga, walked 14 miles a week; zumba, weight machines from the week I was diagnosed and the pain still got worse. My words ran together and slurred when I spoke. It was very embarrasing - still I didn't want to take the meds. At work I am on the computer all day and when I became stressed by anything at work, I couldn't type and my vision became very blurred. I was a walking "in shape" mess. My neuro finally told me if I wasn't going to take any kind of meds even for depression (I cried at the drop of a hat) I had to go to therapy. It was my therapist that convinced me to tell my job and to start taking medicine. My neuro wanted me to start with the sinement but I said I would take the Azilect. I still take it. It is a good 1 tab a day pill and it relieved all of my symptoms at the time except for the tremor - but my tremor wasn't really strong and I could hide it. When I started taking Azilect it made my stomach upset for a couple of weeks but I hung in there because it relieved me of the pain of rigidity and my fingers acted like they were supposed to act. About a year later I had to start adding the sinement. So that is why I think Azilect is a good pill to start with. But of course asked the doc here or your own MDS.
  8. meds maybe?

    I started having vivid dreams before I was diagnosed. The bad vivid dreams are really, really bad, and the good vivid dreams are very, very good My husband has woke me up from a vivid dream wanting to know who I was kissing. He said I was having an awful lot of fun kissing someone But I wasn't dreaming I was kissing someone, I told him, I was dreaming I was eating something. The doctor has always been concerned about my vivid dreams and acting out - on occasion I have rolled onto the carpet but we have a skinny box spring (or whatever it is) and it isn't that far to the floor. But I also let out terrifying screams and my husband says he is worried one day the neighbors will call the cops. The other night I woke up screaming my husbands name over and over and screaming "there is something wrong with my head." But the thing is I keep him awake and when I am dreaming all night long, I wake up so tired because I've been busy dreaming all night long and I have to go to work. Then I have the tiredness which brings out the bradykinesia and rigidity. My doctor has prescribed the clonazepam 5mg but if I take it 2 days in a row I feel down which I do not like. I usually take 1/2 a pill and that is ok. When I started taking the Neupro patch that really helped me with the sleep problems but I think the honeymoon might be over with that because lately if I'm not vivid dreaming I am up at 3:00 am every morning. When the clocks change I change right along with the clocks - 3:00 am no matter if it is spring time or fall time.
  9. Azilect Alternatives

    I think Azilect is going generic in 2017 although I think drug companies are now going to court fighting the Drug Price Competition and Patent Term Restoration Act of 1984 and Azilect was involved in a case like that and won so now its patent is extended to 2017 - but we will see what happens then. I am worried because I am going to retire and will have to worry about all this drug expenses because I will no longer have my health insurance through my job. I found this site which is interesting http://www.fda.gov/Drugs/ResourcesForYou/Consumers/QuestionsAnswers/ucm100100.htm What gets me is that a lot of drug companies get money from private donations and the government to fund their testing and research and they still get to keep their patents.
  10. Fox Trial Finder Information

    Thank you Michael. Now when my leakage won't stop after my spinal tap I'll yell at the docs., "Get me a Blood Patch, that'll stop it." Can't wait to see the look on their faces!!!
  11. Fear is much worse than PD

    I'm with Michael - Doris Day has it right, whatever will be will be, the future is not our to see. I just got off of the phone with my son this afternoon and I said to myself - Dear Lord don't let it be him I have to depend on, please. And he is a nurse and is very helpful to me but when he is tired he is a bear, just like my husband. I think we I was involved in a conversation on these boards not too many days ago.
  12. Constipation -- tips needed

    Miralax works good for me and the nutritionist told me to try Kiefer and that worked so well that I was not even using the Miralax. After a while though it came back so I started in on the Miralax. But if I use the Miralax on a daily basis it gets too loose. Never a dull moment with PD. Its been 5 years since my last colonoscopy so I just had one and drank 1 bottle at about 12 noon the day before the procedure, another at 4:pm, and at 10:00 pm with nothing happening, I drank 2 bottles (so total of 4 bottles plus double the pills he told me to take) before it started and I still wasn't ready by the procedure at 7:00 am the next morning. New meaning to the words "Oh, what a night." The gastro told me I had to come into his office and bring latest blood work and I am also taking him the article the nutritionist told me to give him which I will post here. Here's what the nutritionist posted last year: You might also consider use of probiotics – yogurt or kefir (if milk protein is a concern with regard to levodopa, you can obtain water kefir, or make it with coconut milk) can help greatly to keep the colon healthy and balanced, and regulate bowel movements. However, let me also ask whether your gastroenterologist has ruled out small intestinal bowel overgrowth (SIBO). Your bloating, cramping, gas, and constipation could be signs of SIBO, a condition in which dangerous bacteria are able to grow in the small intestine. A healthy intestine does not contain unfriendly bacteria, because its normal movement prevents bacteria from attaching to the walls of the intestine. Of concern, a study found that SIBO was far more common among subjects with PD than control subjects. This may be because PD can affect the autonomic nervous system, which guides movement of the gastrointestinal tract. SIBO causes a condition called “malabsorption syndrome (MAS)". The attached bacteria compete with the human host for nutrients. The bacteria may inflame and damage the walls of the small intestine, so that nutrients cannot cross the walls and enter the bloodstream. They also produce gas and abdominal distention. The damage may cause carbohydrate and protein malabsorption as well as malabsorption of vitamin B12 and fat-soluble vitamins A, D, and E. Common signs of SIBO include constipation, bloating, cramping, and flatulence. Your doctor can test for SIBO using a test called the “hydrogen breath test.” If SIBO has not been ruled out, I would definitely ask that this be done. Print out the following and take it to your doctor: Mov Disord. 2011 Apr;26(5):889-92. doi: 10.1002/mds.23566. Epub 2011 Feb 1. Prevalence of small intestinal bacterial overgrowth in Parkinson's disease. Gabrielli M, Bonazzi P, Scarpellini E, Bendia E, Lauritano EC, Fasano A, Ceravolo MG, Capecci M, Rita Bentivoglio A, Provinciali L, Tonali PA, Gasbarrini A. Internal Medicine Department, Catholic University of Sacred Heart, Rome, Italy. mauriziogabrielli@gmail.com. BACKGROUND: Parkinson's disease (PD) is associated with gastrointestinal motility abnormalities that could favor the occurrence of small intestinal bacterial overgrowth. The aim of the study was to assess the prevalence of small intestinal bacterial overgrowth in PD patients. METHODS: Consecutive PD patients were enrolled. The controls were subjects without PD. All patients and controls underwent the glucose breath test to assess small intestinal bacterial overgrowth. RESULTS: Forty-eight PD patients and 36 controls were enrolled. The prevalence of small intestinal bacterial overgrowth was significantly higher in PD patients than in controls (54.17% vs 8.33%; P < .0001; OR, 2.24; 95% CI, 3.50-48.24). Multivariate analysis showed Hoehn and Yahr stage (OR, 3.07; 95% CI, 1.14-8.27) and Unified PD Rating score (OR, 1.12; 95% CI, 1.02-1.23) were significantly associated with small intestinal bacterial overgrowth in PD patients. CONCLUSIONS: Small intestinal bacterial overgrowth is highly prevalent in PD. Gastrointestinal motility abnormalities might explain this association. PMID: 21520278 [PubMed - in process] Good luck to me and others that suffer!!
  13. Sit coms that make you laugh?

    I Love Lucy - Ethel Beverly Hillbillies - All of the Hillbillies but I guess Granny Mr. Ed - Mr. Ed Mary Tyler Moore - All of them - but I guess Rhoda was fav. Three's Company - Chrissy All in the Family - Michael Taxi - Louie DePalma Cheers - Carla Seinfeld - Newman Sex in the City - Samantha My Name is Earl - Joy In the Middle - Sue Most of these are watched between 1-3:00 am KIK
  14. Fox Trial Finder Information

    lol I just looked it up on Wiki and it sounds good "an American 1984 rock music mockumentary" with Rob Reiner. It is mostly adlib with Reiner Christopher Guest, Michael McKean andHarry Shearer and they speak with fake British accents. Funny! I know nothing anymore all my knowledge I get from the puter. Oh, I have to say too that the people who complained (from what I read on the net) that they suffered from leakage from a spinal tap it went away after awhile.
  15. That is good to know that dyskinseia might cause pain from or for controlling it. So if I get pain I will know it is still dyskinseia or it could be dystonia and I don't have something new (a new "D" word I don't know about) happening to my body. You sound like me, Unprincess. I do do not like to set alarms because of a thing inside of me that makes me think that if I don't set an alarm I won't have to take it. Besides I get tired of people asking me, "Why is your phone always going off?" I just read on another site a lady said that she read that if a PDer isn't diligent about timekeeping with the sinemet it can cause it to stop working altogether. I thought, oh, no, I'm doomed. I say it is just all too much!!! But I too give my neuro a fit by stopping and not taking my meds because the prescription runs out. LOL It must be "meant to be" if the prescription runs out, right? Well, she suggested mail away!!! Right now I am supposed to be taking Amantadine and not the Neuro patch but I had so many Neuro patches from my mail away pharmacy that I paid $75 for a 3 month supply that they sent ahead or I had stopped taking it and forgot to tell them that I am still good for the patch for 6 more months. Matter of fact I have so many pills that I think I'm going to cancel my drs. appointment for another 6 months and take the meds I have right now. And the last time I was at my neuro she wanted to give me Stalvo instead of the Camtan and Sinemet and I told her I got to take all the sinenet my pharmacy sent me first so I won't lose my money and I just realized this week that I had to call the pharmacy and have them cancel the sinement and Camtan prescriptions that are still being sent to me that I was supposed to stop in June. I feel like my meds that I am taking are ok now so it will be ok. Once I am done with the meds I got, I'll go back to her and take what she wants to give me. If I am not complaining about something new when I go she finds something new for me to complaint about. Oh, it is just all too much along with all the other family problems happening!!! I'm glad though that I am here to talk about it.