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Tamara

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  1. Hi! It is not doctors advice. Doctors ignore mucuna and fava beans, they reccomend only drugs))) I decided myself and found this dosage. Very small. I have never tried fava beans. You can also try coffein and curcumin in curcubrain. It really helps.
  2. Hi! I use macuna Ldopa by NOW 15% . I am taking it from october 2016 NOW macuna l-dopa capsules 15% 4-5 capsules during a day + mirapexin 0,7/3 times a day + PKMERZ amantadin 1mg/3times and feel good dz 2012 by datscan , first simptoms -2008 , no tremor femail 50 years old 6 months ago stop azilect because of feelling baD have a nice day! Tamara
  3. Dear Lenamegun thank you very much. It is very useful. There are no information on this subject.
  4. Dear friends! One young women with rare SEGAWA disease ask you an advise and to share your experience. Here is her story , i received it today, this is urgent because it is already 3 weeks and nobody can give her advise. Any opinion or experience highly appreciate thank you all! "I have been taking Nakom ( carbidopa/levadopa) drug for almost 14 years, if I do not take it strong hyperkinesis starts, involuntary movements, stiffness on my legs, I can not walk. My diagnosis is dopa dependent dystonia or Segawa disease, but I passed the gene analysis to search for mutations, it's negative. Although the symptoms are very similar. What then the doctors say that it can be secondary (acquired) dystonia as a result of the infection I had. I have a hemophilic infection, that was diagnosed to late . Now I'm pregnant, the period of 3 weeks and I also drink nakom, without it I can not live. Dear friends. I'm very worry. What will happen to the child? He will give birth with pathologies? Here in my town - in Kazan doctors can not answer this question, as there were no such cases. About me : 24 years old, I take nakom 1/8 part, 250 mg/25mg three times a day, he helps me 100% to control simptoms and to feel myself healthy, but now , during pregnancy, sometimes the same dose does not help. THE MAIN QUESTION IS will be MY BABY A healthy CHILD? IS IT POSSIBLE TO INCREASE THE DRUg doses DURING THE TIME OF Pregnancy , AS TO ME THE 1/8 PIECE OF THE TABLET BECOMES to small for me now. WHAT DOES DOCTORS SAY ABOUT THE INFLUENCE OF THE Levadopa/carbidopa to DEVELOPMENT OF THE EMBRYO? Thank you very much for any reply. It is very importent for me and my family! It is my first baby!
  5. Please help with your advise to a young women. Here is her letter "I have been taking Nakom ( carbidopa/levadopa) drug for almost 14 years, if I do not take it strong hyperkinesis starts, involuntary movements, stiffness on my legs, I can not walk. My diagnosis is dopa dependent dystonia or Segawa disease, but I passed the gene analysis to search for mutations, it's negative. Although the symptoms are very similar. What then the doctors say that it can be secondary (acquired) dystonia as a result of the infection I had. I have a hemophilic infection, that was diagnosed to late . Now I'm pregnant, the period of 3 weeks and I also drink nakom, without it I can not live. Dear friends. I'm very worry. What will happen to the child? He will give birth with pathologies? Here in my town - in Kazan doctors can not answer this question, as there were no such cases. About me : 24 years old, I take nakom 1/8 part, 250 mg/25mg three times a day, he helps me 100% to control simptoms and to feel myself healthy, but now , during pregnancy, sometimes the same dose does not help. THE MAIN QUESTION IS will be MY BABY A healthy CHILD? IS IT POSSIBLE TO INCREASE THE DRUg doses DURING THE TIME OF Pregnancy , AS TO ME THE 1/8 PIECE OF THE TABLET BECOMES to small for me now. WHAT DOES DOCTORS SAY ABOUT THE INFLUENCE OF THE Levadopa/carbidopa to DEVELOPMENT OF THE EMBRYO? Thank you very much for any reply. It is very importent for me and my family! It is my first baby!
  6. Good day dear doctor. Please give an advice to my friend a young women who want to be mother. Here is her letter "I have been taking Nakom ( carbidopa/levadopa) drug for almost 14 years, if I do not take it strong hyperkinesis starts, involuntary movements, stiffness on my legs, I can not walk. My diagnosis is dopa dependent dystonia or Segawa disease, but I passed the gene analysis to search for mutations, it's negative. Although the symptoms are very similar. What then the doctors say that it can be secondary (acquired) dystonia as a result of the infection I had. I have a hemophilic infection, that was diagnosed to late . Now I'm pregnant, the period of 3 weeks and I also drink nakom, without it I can not live. Dear friends. I'm very worry. What will happen to the child? He will give birth with pathologies? Here in my town - in Kazan doctors can not answer this question, as there were no such cases. About me : 24 years old, I take nakom 1/8 part, 250 mg/25mg three times a day, he helps me 100% to control simptoms and to feel myself healthy, but now , during pregnancy, sometimes the same dose does not help. THE MAIN QUESTION IS will be MY BABY A healthy CHILD? IS IT POSSIBLE TO INCREASE THE DRUg doses DURING THE TIME OF Pregnancy , AS TO ME THE 1/8 PIECE OF THE TABLET BECOMES to small for me now. WHAT DOES DOCTORS SAY ABOUT THE INFLUENCE OF THE Levadopa/carbidopa to DEVELOPMENT OF THE EMBRYO? Thank you very much for any reply. It is very importent for me and my family! It is my first baby! thank you in advance for any piece of advice.
  7. Hi, Otomorin! Here some more information Northern California Cranio-facial Diagnostic Center is the premiere center for Parkinsons treatment in San Francisco Bay Area for TMJ type services. Dr. Jennings at Northern California Cranio-facial Center was the first to publish on the link between jaw misalignment and Parkinsons (see Parkinsons TMJ treatment ). We have extensive experience with Parkinsons patients and their wide assortment of symptoms. In most Parkinsons cases, there is an excess amount of space between the upper jaw and lower jaw at rest (patient is agape). This is also evident with speech: there being an excess of space between upper and lower jaw during speech. This gives the voice a hollow/ nasal sound and in some cases a lispy quality. The excess space causes the jaw posturing muscles to have to over contract to put the teeth together, causing the trigeminal nerve to become hyper tonic. It is theorized that this leads to elevated substance P and subsequently glial activation, a primary pathology of Parkinsons. It is also known that jaw alignment sensors are a major influence on the part of the brain that causes tremors. Parkinsons treatment in San Francisco Bay Area Treatment that is most often needed for the excess space between the teeth is a tall splint. This is worn full time for diagnostic purposes to see if it resolves tremors, balance, cognitive function, and other symptoms. In a large number of cases, placing tongue blades between the teeth will substantially reduce tremors immediately. And here is a simple test -if you answer Yes for some of tnis questions - you have TMJ. With my russian translation. Do you have frequent headaches? У вас часто болит голова? Does your neck, back of your head or shoulders hurt frequently? У вас часто болит шея спина плечи? Do you hear popping, clicking or cracking sounds when you chew? У вас бывают щелканье и стуки в челюстном суставе при жевании Do you hear a grating sound in your jaw joint? Слышите ли вы какие либо звуки в челюстном суставе Do you have stuffiness, pressure or pain in your ears? У вас бывает давление боль или напряжение в ушах Do you have crooked, missing, “bucked” or crowded teeth?были ли у вас случаи разрушения, рассыпания зубов Do you have an overbite? У вас неправильный прикус Do you hear a ringing or buzzing sound in either or both of your ears? У вас бывает шум в ушах одном или двух Do you experience dizziness (vertigo) frequently? У вас были случаи головокружения нарушения балланса или вертиго Do your jaws feel tight or difficult to open? Бывает ли вам трудно или больно открыть рот Do your jaws ache after eating? У вас болит челюсть после еды Do you wake up in the morning with sore facial muscles? Бывает ли по утрам боль напряжение лицевых мышц Are you aware of clinching or grinding teeth while you are asleep, frustrated or under stress? Вы скрипите зубами во сне или под стрессом стискиваете зубы Do you suffer from depression or decreased energy level as a result of any of the above symptoms? У вас есть депресссия или спад энергии из за любого из указанных симптомов Are your teeth sensitive, loose broken or worn?у вас чувствительные зубы есть разрушенные или отсутствующие зубы Have you been hit in the jaw or had a whiplash injury?у вас была челюстная травма или протезирование Is it hard to use your front teeth to bite or tear food? Вам сложно кусать передними зубами Have you been told that you might have TMD? Вам когда либо говорили что у вас дисфункция нижнечелюстного сустава
  8. Hi , I studied this theme. Here what I found 4 years agocarlajane Drevy, I am very familiar with the TMJ appliance; I have mined in as I type. First, let me say this appliance is not correcting symptoms of PD, but the symptoms of TMJ. There is increasing evidence that people diagnosed with PD have the likelihood of having TMJ and that proper treatment of this disorder by a qualified dentist can help alleviate the symptoms of the disease. This is NOT a cure for PD. Watching some of those videos I had the same “too good to be true” thoughts; and I’m a registered dental hygienist! I have just submitted an article to a dental magazine about my experience with my appliance; below is just a section, hopefully to explain what takes place. My own experience; I was diagnosed with PD 2006; my PD is on my right side, hand, arm, shoulder and neck. In 2011 had to give up my career as a clinical hygienist; however still very involved with hygiene. I learned about the appliance through the Parkinson’s Resource Organization. parkinsonsresource.org/dent... on their webpage go to the Wellness Village, (wait for the drop down) and Wellness Specialists check out the dentists. Next, I would advise you to read the newsletters. My appliance was inserted April 19th this year. My hand tremor is better, along with pain, plus I’m sleeping better. Since the early 1980’s I have suffered from vertigo, dizziness and ear pain. In February this year I was referred to an ENT for otitis media. The countless days with pain behind my eyes, not to mention the headaches; my neck and shoulder pain I just presumed was due to PD, since I started PD with a frozen shoulder. Hope this helps, if you have more questions I’ll answer what I know. Here’s a section of my article. TMJ is considered the most complex joint in the body because it moves in multiple directions. The mandible is connected to the skull by the TMJ with discs between them. It is a ginglymo-arthrodial joint. A ginglymus joint is a hinge-joint and an arthrodia joint is a gliding joint. The TMJ is the only joint that both hinges and glides. These discs are made of fibrocartilage and play an important role in maintaining good health. These discs not only keep the jawbone from coming into contact with the skull; they keep the jawbone from impinging on the large number of nerves and blood vessels running behind the joint and in front of the ear. When the jaw is misaligned or if the space behind the condyle is lost through anterior displacement of the disk, the condyle will move backwards and pinch the nerve tissue causing inflammation or insult. This affects all aspects of the sensory, proprioceptive, and motor reflexes, subsequently creating a broad array of medical disorders. The Trigeminal Nerve V being a complex and powerful nerve and when insulted its systems are directly altered. A branch of the trigeminal system, the auriculotemporal nerve, passes through the jaw joint behind the small joint disc, this nerve is unusual because it has both motor and sensory capabilities. When the trigeminal nerve is affected, it can cause symptoms such as dizziness and vertigo, ear pain, sensory and motor skills and imbalance. Reply Like (0) 4 years agoshashaGood luck!! before you go; I advise you to go to Dr. Leonard Feld website; read under publications and support artiicles & research articles; print these out and take with you. I believe I would also take the names of the dentists from Parkinson's Resource Organization (my dentist is listed here) Dr. William H. Funk. Since I can no longer be a clinical hygienist, ( a job that I loved) my goal is to take my hygiene knowledge & assist people like me with PD on any procedure or dental product; anything that can make our life’s a little easier. Please let us know about your appointment. And some more CRANIO-MANDIBULAR DYSFUNCTION (TMJ) CAUSATION OF PARKINSON’S JUNE 30, 2014 BY EDITOR LEAVE A COMMENT CRANIO-MANDIBULAR DYSFUNCTION (TMJ) CAUSATION THEORY OF PARKINSON’S: AN APPLICATION OF OCCAM’S RAZOR Dwight Jennings, DDS, MICCMO Occam’s razor is a principle of parsimony and succinctness used in problem-solving. It states that among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better. Diagnostic parsimony advocates that when diagnosing a given injury, ailment, illness, or disease a doctor should strive to look for the fewest possible causes that will account for all the symptoms. Hypothesis: Cranio-mandibular dysfunction is the cause of most cases of Parkinson’s disease. Over half the population has a significant cranio-mandibular dysfunction. It is known that the upper and lower jaw have been receding on humans for the past 20,000 years. This receding jaw is now to such a point that airway obstruction is quite prevalent (snoring, sleep apnea). There are many videos on YouTube showing dramatic improvement in cases diagnosed as Parkinson’s through bite therapy. Emma Thornton, in her 2008 doctoral thesis, showed that she could reverse experimental Parkinson’s with a substance P antagonist (substance P, the neurotransmitter for pain signals to the brain, becomes elevated with cranio-mandibular dysfunction). Hence, I believe that cranio-mandibular dysfunction is a primary suspect as to the cause of Parkinson’s. Knowing the correct causation of Parkinson’s is important from a treatment perspective. Over one million people in the United States suffer from Parkinson’s disease. Though remarkable advances have been made in uncovering the pathogenesis, the etiology is speculative. Parkinson’s disease is associated with a very wide assortment of symptoms. Besides the primary motor symptoms (bradykinesia, resting tremor, rigidity, poor posture), Parkinson’s is known to have many non-motor symptoms: decreased brain blood flow, disturbance in substance P levels, sleep problems, reduced sense of smell, rhinorrhea, allergies, sinus problems, retinal alterations, cognitive impairment, accelerated bone loss, blink reflex defects, and increased prevalence of autonomic nervous system disturbances. Cranio-mandibular dysfunction causes a disturbance in trigeminal nerve tone, which can have very broad effects as this nerve interfaces with the brain in many ways. The many symptoms of Parkinson’s can be accounted for by various trigeminal nerve interactions: Motor symptoms: Recent publications have implicated dental orthopedic dysfunction as the cause of many types of movement disorders (Parkinson’s, Tourette’s, dystonia, torticollis, and scoliosis). Extensive research on bite destruction in animals shows that lowering bite causes scoliosis and increased rigidity. Stimulation of the reticular formation (which has massive trigeminal proprioceptive input) is known to cause Parkinsonian tremors, rigidity, and movement inhibition. Substance P is known to be a major modulator of movement. Decreased brain blood flow: Trigeminal nerve modulates brain blood flow through what is known as trigeminal vascular system. One study showed that for people missing their molars, clenching caused on average 40% reduction in brain blood flow. It is through influence of the trigeminal nerve on brain blood flow that causes a boxer to pass out when hit in the jaw. Disturbance in substance P levels: The trigeminal nerve has on average one hundred times more dense “c fibers”- a primary source of substance P. Hence, anything that activates the trigeminal nerve (e.g. cranio-mandibular disturbance) causes increased levels of substance P. Elevated substance P levels has been shown to be detrimental to neuronal survival. Microglial activation by substance P has been implicated as a pivotal factor in the development of Parkinson’s disease. Sleep problems: The trigeminal nerve has a major influence on the reticular activating system, which keeps the brain awake. Disturbances in trigeminal nerve are known to have a major influence on sleep. Reduced sense of smell: Humans actually have two noses. The chemoreceptors in the nose are part of the trigeminal nerve. Multiple dentists have reported normalized sense of smell in treating Parkinson’s patients with jaw repositioning appliances. Rhinorrhea, allergies, sinus problems: Autonomic nerves to the sinuses travel with the trigeminal sensory nerves in the sinus, and become impacted when the trigeminal nerve tone is disturbed. Multiple studies have shown that sinus conditions are dramatically elevated in TMJ patients. Substance P is known to cause allergies when injected into animals. Retinal alterations: The trigeminal nerve provides sensory for the eye. Research has shown that stimulation of the trigeminal nerve causes alteration in how the tissues in the eye grow. Accelerated bone loss: Substance P is known to control bone metabolism. Blink reflex defects: 70% of Parkinson’s patients have a blink reflex defect. The trigeminal nerve is sensory for the blink reflex. Disturbances in trigeminal tone will cause alterations in blink reflex. Cognitive impairment: Trigeminal nerve can influence the brain in multiple ways; through regional blood flow and alteration of substance P levels. Substance P in known to be a major neuromodulator. Increased prevalence of autonomic nervous system disturbances:Extensive research on bite destruction in animals has shown that autonomic nervous system disturbance is a constant finding when the bite is altered. Based on Occam’s razor, the fact that cranio-mandibular dysfunction can account for most all Parkinson’s symptoms and that treatment has reversed Parkinson’s in some cases, implicates cranio-mandibular dysfunction as a primary suspect in seeking the cause of Parkinson’s disease. The implications of this finding would suggest that dental orthopedic alignment be assessed. If found wanting, jaw repositioning therapy should be initiated. Jaw repositioning therapy is a non-invasive treatment done with removable dental appliances; typically in two phases. The first phase is to diagnostically reposition the jaw (i.e. find a therapeutic position that is beneficial). The second phase is to do what is necessary to create a permanent solution to sustain the therapeutic position (typically orthodontics, crowns, or overlay partial). For more information about CMD/TMJ and Dr. Dwight Jennings, visit the Wellness Village at http://www.parkinsonsresource.org/spotlight/2617/
  9. Hi! How are you now and do you still using macuna pouder as a treatment and share please your experience...

    I am taking from october 2016 NOW macuna l-dopa capsules 15% 4-5 capsules during a day + mirapexin 0,7/3 times a day + PKMERZ amantadin 1mg/3times and feel good

    dz 2012 first simptom 2008 no tremor femail 50 years old

    6 months ago stop azilect because of feelling bad

    thank you for your experience 

    have a nice day! Tamara

    1. Show previous comments  1 more
    2. Tamara

      Tamara

      Thank you so much!,how do you think it is reasonable  to increase dosage of mucuna step by step?  My dosage is small but i feel it. 

    3. Tamara

      Tamara

      And where do you buy mucuna powder?  Thank you

    4. hercules957

      hercules957

      My Mucuna is made for health practitioners, I buy it through my Naturopathe Dr.  it is not available on the open market.

      Self medicating is not easy. There is always a risk of going through the required dose and become over medicated. I would not increase by much and take 5 to 7 days to see the effects.

  10. Adamas Announces U.S. FDA Acceptance of ADS-5102 New Drug Application for the Treatment of Levodopa-induced Dyskinesia in Patients. Full story Http://ir.adamaspharma.com/releasedetail.cfm?releaseid=1006890
  11. Hi! Has anybody tried TMS? How do you feel it? just find this article Abstract OBJECTIVE: Several studies have reported repetitive transcranial magnetic stimulation (rTMS) therapy as an effective treatment for the control of motor symptoms in Parkinson disease. The objective of the study is to quantify the overall efficacy of this treatment. TYPES: Systematic review and meta-analysis. LITERATURE SURVEY: We reviewed the literature on clinical rTMS trials in Parkinson disease since the technique was introduced in 1980. We used the following databases: MEDLINE, Web of Science, Cochrane, and CINAHL PATIENTS AND SETTING: Patients with Parkinson disease who were participating in prospective clinical trials that included an active arm and a control arm and change in motor scores on Unified Parkinson's Disease Rating Scale as the primary outcome. We pooled data from 21 studies that met these criteria. We then analyzed separately the effects of low- and high-frequency rTMS on clinical motor improvements. SYNTHESIS: The overall pooled mean difference between treatment and control groups in the Unified Parkinson's Disease Rating Scale motor score was significant (4.0 points, 95% confidence interval, 1.5, 6.7; P = .005). rTMS therapy was effective when low-frequency stimulation (≤ 1 Hz) was used with a pooled mean difference of 3.3 points (95% confidence interval 1.6, 5.0; P = .005). There was a trend for significance when high-frequency stimulation (≥ 5 Hz) studies were evaluated with a pooled mean difference of 3.9 points (95% confidence interval, -0.7, 8.5; P = .08). rTMS therapy demonstrated benefits at short-term follow-up (immediately after a treatment protocol) with a pooled mean difference of 3.4 points (95% confidence interval, 0.3, 6.6; P = .03) as well as at long-term follow-up (average follow-up 6 weeks) with mean difference of 4.1 points (95% confidence interval, -0.15, 8.4; P = .05). There were insufficient data to statistically analyze the effects of rTMS when we specifically examined bradykinesia, gait, and levodopa-induced dyskinesia using quantitative methods. CONCLUSION: rTMS therapy in patients with Parkinson disease results in mild-to-moderate motor improvements and has the potential to be used as an adjunct therapy for the treatment of Parkinson disease. Future large, sample studies should be designed to isolate the specific clinical features of Parkinson disease that respond well to rTMS therapy. Copyright © 2016 American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.
  12. Dear Luke! I Will be happy if it helps you
  13. Yes i have the same question! Oral opicapone (Ongentys(®)), a potent, third-generation, long-acting, peripheral catechol-O-methyltransferase (COMT) inhibitor, is approved as adjunctive treatment to levodopa (L-Dopa)/dopa-decarboxylase inhibitor (DDCI) therapy in adults with Parkinson's disease (PD) and end-of-dose motor fluctuations who cannot be stabilized on those combinations. In 14- to 15-week, double-blind, multinational trials and in 1-year, open-label extension studies in this patient population, opicapone was an effective and generally well tolerated adjunctive therapy to L-Dopa plus a DDCI and other PD therapy. During the double-blind phase, adjunctive opicapone 50 mg once daily provided significantly greater improvements in motor fluctuations than placebo, with these improvements noninferior to those with entacapone. These beneficial improvements in motor fluctuations with opicapone were maintained in patients who continued adjunctive opicapone during the extension studies, with patients who switched from placebo or entacapone to opicapone experiencing significant improvements in motor fluctuations during this year. No new unexpected safety concerns were identified after ≈1.4 years' treatment with opicapone, with no serious cases of hepatotoxicity reported in clinical trials. With its convenient once-daily regimen, oral opicapone is an emerging COMT inhibitor option for use as adjunctive therapy to L-Dopa/DDCI therapy in adults with PD and end-of dose motor fluctuations who cannot be stabilized on those combinations.
  14. Scientific discovery may change treatment of Parkinson Date: March 22, 2017 Source: Turun yliopisto (University of Turku) Summary: When monitoring Parkinson's disease, SPECT imaging of the brain is used for acquiring information on the dopamine activity. A new study shows that the dopamine activity observed in SPECT imaging does not reflect the number of dopamine neurons in the substantia nigra, as previously assumed. full article https://www.sciencedaily.com/releases/2017/03/170322094512.htm Mapping the future of precision medicine in Parkinson's disease Date: March 22, 2017 Source: University of Cincinnati Academic Health Center Summary: A new transformative approach to defining, studying and treating Parkinson's disease has been revealed by investigators. Rather than approaching Parkinson's disease as a single entity, the international cadre of researchers advocates targeting therapies to distinct 'nodes or clusters' of patients based on specific symptoms or molecular features of their disease. full https://www.sciencedaily.com/releases/2017/03/170322143129.htm