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Found 13 results

  1. I was formally diagnosed in 2011. Shortly after this occurred, because I have a 40 year background in natural medicine, I started to try various natural protocols that had been shown to be effective for some people with Parkinson's. One of the first approaches I tried was Mucuna. Within a month, I dropped this approach because it seemed to be doing nothing for me. Little did I know that it would not be many years before I found out that virtually all the Mucuna supplements in the states contained usually no more than 15-18% L-Dopa. This information made it easier to understand why I had experienced no success with it. In 2016, I was contacted by a friend with Parkinson's who lives in Europe and had been taking Mucuna extract that was 98 - 99% L-Dopa. Roughly 3.5 years ago, I became so dysfunctional due to the symptoms of Parkinson's that I became almost bedridden for 2.5 years and 100% dependent on my wife for all daily activities. I took Mucuna extract at the 2.5 year point of being stuck in bed and in less than a week, I was out of bed and 98% independent. I will say that again... In less than a week, I was out of bed and 98% independent. I started with 250 milligrams 4 x/day. Now, 1 year later, I take between 800 -1,000 milligrams 5x/day and have been using that dosage for approximately 6 months. Here's my concern... There is much information online that states that long term use of Mucuna is safe. However, it is clear that the substance used in all of that exploration was the whole herb. I have not been able to find any information regarding long term use of Mucuna EXTRACT. ANY HELP WITH THIS EXPLORATION WOULD BE DEEPLY APPRECIATED! This month I am starting a kind of an "alchemical" experiment. I have placed one pound of Mucuna whole herb from Banyan Botanicals into a gallon jar and have filled it with the highest quality Vodka I could find here. I am not able to get grain alcohol where I live. I have placed the jar in a dark cupboard and am shaking it vigorously each day. After roughly three weeks, I will add my Mucuna whole herb "tonic" to the Mucuna extract each time I take it.
  2. Hello, I am desperately seeking suggestions on how to combat nausea from my prescribed Carbidopa/ Levodopa. Recently, I have experienced degeneration in my left arm. Without medication, I have tremors, numbness, tingling, and pain and it is difficult for me to perform day to day tasks. Prescribed Medications and Dosages: Carbidopa/Levodopa 25/100: 2 pills 3 times per day Pramipexole Dihydro .25 mg: 1 pill 3 times per day Background When my symptoms were less severe, I was taking 1/2 Carbidopa/Levidopa pill 3 times per day (total of 1.5 pills per day) As my symptoms worsened, my doctor said to increase dosage of Carbidopa/Levidopa pills to 2 pills 3 times per day. The increased dosage made me terribly ill- my nausea was so severe that I was completely unable to function. I have been taking 1 Carbidopa/Levidopa pill 3 times a day (vs. the recommended 6 pills per day). I have experienced mild nausea with fatigue. However, I still have tremors in my left arm with this lower dosage and as the medication begins to wear off, it is difficult for me to perform many common daily tasks. Questions Should medication be taken before, during, or after meals? Any recommended or prohibited foods with the medication? Can the medication be taken in smaller dosages throughout the day? For example,take 1 Carbidopa/Levodopa pill 6 times per day Should the medication be taken at the exact same time each day? I only tried taking the 6 Carbidopa/Levodopa pills for a few days and then reduced the dosage due to nausea. Is it worth trying to take 6 again? How quickly do you recommend increasing the dosage from my current dosage of 3 pills daily? Any alternative medications? Thanks in advance for your time, understanding, and guidance.
  3. Hi everyone, My mother has Parkinson's disease, and has been taking levodopa medication for around 15 years now. Recently, she discovered she has a gastro inflammation that must be taken care of. However, the pills fighting the inflamation distrub her L-dopa medication, resulting in many more off periods than usual. She had tried numerous pills (including Omeprazole, Famotidine, Nexium (Esomeprazole) and Dexilant (Dexlansoprazole)), and while some were better than others, all hurt the affect of her L-dopa medication. We have discussed this with doctors and searched the web independently, but found no mention of this problem. I assume many people had this combination of drugs, though, because acidic reflux (a possible cause of the inflammation) is common in Parkinson's. Had someone here perhaps had this experience, or taken these pills with no such problem? Does someone perhaps know of an MD that specializes in gastro-related issues in Parkinson's, or can refer us to another good source of information? Thanks very much in advance, and good health to everyone, Amir
  4. Fifty-nine year old male with a fairly recent "probable" diagnosis of PD by an MDS after having a right hand/arm tremor (my only symptom) for almost ten months. Tried Propranolol (20mg, 1x daily), then Trihexyphendidyl (2mg, 1x daily), then Amantadine (100mg, 3x daily) with none affecting my tremor. In a previous post of mine on this forum where I asked you about Amantadine's effectiveness, you kindly responded the above meds were not optimum for treating tremor. You said Sinemet or a dopamine agonist would be better. Early this week in my follow-up visit, my MDS did prescribe Carbidopa/Levodopa (25-100mg, 3x daily) and stopped the Amantadine. How long is typical before I might notice a difference in my tremor? 1 week? 2 weeks? 1 month? I've read on this forum where some patients experience an almost immediate effect, but it looks like the length of time before it starts affecting tremors varies quite a bit, too. I'm just trying to set a reasonable expectation in my mind for the time frame before, hopefully, I see an improvement in my tremor. I have a follow-up MDS appointment in six weeks. Thank you for your time and commitment to helping people in this forum.
  5. Hello all. My name is James and I am new around here. My father, James Sr., has fairly advanced PD. He has freezing episodes throughout the day and occasional dyskinesia, albeit only slightly at this point. I am looking for advice on finding a registered dietitian with knowledge and experience in the relationship between protein and Sinemet. I’ve just ordered two of your books, Kathrynne, (Cook Well, Stay Well & Eat Well, Stay Well), and I know they will be a great help. However, my father struggles with reading more than a few pages at a time and processing the information (I know the audio CD with one of them will help). Having a dietitian sit down with him and building a relationship would be great. I have called a few local dietitians (my father is in Southern NJ, i.e. Medford) and, frankly, I am a little surprised how little all three knew about the interaction between protein and Sinemet despite listing expertise in gerontology. They all could help with a low protein diet, of course, but it would be great to have a dietitian who had knowledge specifically, in protein, levodopa and absorption. I am wondering the typical route taken in order to build a relationship with a dietitian, also, and I don't know if it is appropriate to ask this here, but I am looking for recommendations for Registered Dieticians in the Southern New Jersey area that have experience with the interaction between protein and levodopa. I know the books will be a great start, but building a personal relationship with someone would be great. Again, if this is not a great place to ask this question, I apologize and just let me know. Thanks! Best, James Johnson Jr.
  6. Hi Everyone, I am new to this forum, though have been referencing it for years. My dad has Parkinsons, is in about his 12th year or so of the disease, maybe longer. I am so sorry to everyone out there who is so frustrated and disabled by this disease. It is so hard. My family is trying to figure out his dosing schedule. Any input would be tremendously helpful and appreciated. I know a lot of it is trial and error. I have always wondered if his other pills make the Parkinson's medicine less effective. Additionally, he wakes CONTINUALLY in the night shaking violently. This has become a terrible problem as he wakes up every hour. My dad has an Essential Tremor in addition to Parkinson's. He has had this since his early teens, he is now 70. His current pill schedule: -Carbidopa 25 mg-levodopa 100 mg tablet. Currently, my mom is trying: 1 pill at 7am 1 pill at 10:30am 1 1/2 pills at 1:30pm 2 pills at 4:30pm 2 pills at 7:30pm 1 pill at 10:00pm 1 extended release at 11pm right before bed -For his Essential Tremor he takes Primidone 50mg a day and Propranolol 320mg a day extended release. -For a mild A-fib, he takes Warfarin 5mg (1 1/2 on M,W,F. 1 on S, S, T, Thurs.) -The rest of these pills I'm assuming are blood pressure from what I can figure out triamterene 37.5 mg-hydrochlorothiazide 25 mg tablet, 1 tablet daily K-Tab 10 mEq tablet, extended release, 1 tablet daily Losartan 100 mg tablet, 1 tablet daily Amlodipine 5 mg tablet, 1 tablet daily Vitamin D2 5,000, 1 tablet daily My dad does do a recumbent for 5-10 minutes a day and knows to try not to eat protein with his pills. I would sincerely appreciate any advice, suggestions or tips on this schedule. Thank you so very much, Amy
  7. Hola comunidad, Para seguir con el tema de levodopa, sabemos que después de cierto tiempo, el efecto de la levodopa comienza a durar menos tiempo. Al inicio podría durar de 5-6 horas, posteriormente 4 hrs, y posiblemente a algunos de ustedes el efecto benéfico les dure entre 2-3 hrs o incluso solo 1 hora. Esto ocurre con todos los pacientes después de años de tomar levodopa. Le llamamos "deterioro de fin de dosis". Como podemos atacar esto o hacer que la levodopa dura más tiempo??? Aquí algunas recomendaciones que deberán consultar con su médico para ver cual es la mejor para ustedes: 1. Agregar un agonista dopaminérgico (pramipexol, rotigotina, ropirinol) 2. Agregar un inhibidor de la COMT (entacapona) 3. Agregar un inhibidor de la MAO-B (selegilina or rasagilina) 4. Aumentar la dosis de levodopa 5. Aumentar la frecuencia de las tomas de levodopa 6. Considerar algún tratamiento quirúrgico como la Estimulación Cerebral Profunda o la Infusión Duodenal de Levodopa (Duodopa) Recuerden poner atención al deterioro de fin de dosis y comunicárselo a su médico con el fin de encontrar la mejor estrategia para cada uno de ustedes. Saludos!!!! DMR @drdanielmtz
  8. Hola comunidad, espero tengan una excelente semana! Para seguir con los tips para mejorar la calidad de vida, aquí una recomendación de como aumentar la absorción de la levodopa. Para aquellos pacientes quienes inicialmente sentían el beneficio de la levodopa entre 15-20 minutos después de tomarla, pero ahora sienten el beneficio 30 minutos o hasta 1 hora después de tomarla, es decir, tarda más el medicamento en hacer efecto, aquí dos recomendaciones: 1. Tomar la levodopa entre 30-45 minutos antes de los alimentos 2. Tomar la levodopa con alguna bebida gaseosa, carbonatada, o jugo de naranja Dichas recomendaciones mejorarán la absorción y por ende su efecto será más rápido, como al inicio. Espero esto les sirva. Cualquier duda comenten aquí abajo!!! Saludos! DMR @drdanielmtz
  9. Hola, Una recomendación básica para mejorar la calidad del efecto de levodopa, es tomar el medicamento a tiempo todas las tomas. Es importantísimo no retrasar las tomas, ya que el objetivo es mantener los niveles de dopamina estables durante todo el día. Tratar de seguir el horario que su médico le indicó es clave. Esto mejorará y mantendrá los efectos clínicos durante el día. Pase un buen fin de semana. Porfavor comenten o pregunten cualquier cosa. Aqui estamos para responder sus dudas. Saludos, DMR @drdanielmtz
  10. Despertares

    Hola comunidad hispana, Para pasar un buen fin de semana, les recomiendo la película Despertares con Robert De Niro y Robin Williams (QEPD). Es una película que abarca el tema del Parkinson y los inicios del uso de levodopa. Es importante conocer sobre su padecimiento para saber como atacarlo. Seguiré publicando temas recientes importantes sobre el Parkinson y espero poder responder todas sus dudas o comentarios. Saludos, DMR
  11. Hello, I am researching challenges with pharmaceutical packaging, specifically, medications provided to patients with Parkinson's disease. We may all struggle with medications in child resistant packaging. As we get older, packaging can sometimes present a more frustrating challenge. For patients with Parkinson's, easy access to your medication should be the standard, but we know that is not always true. I do not have access to focus groups or human factor engineering studies on packaging, so I hope you can assist by sharing some of your experiences. Your feedback will be reviewed and I will promise that it will be heard. My questions to the community: What is your biggest packaging challenge or dose access challenge with your current medication(s)? (What drug?) How would you improve the packaging or access to each dose? I send all my support and well wishes to the community. Thank you in advance for your valuable feedback. Jonathan
  12. My wife was diagnosed three months ago (58 years old) at which time she started taking Sinemet. Since taking the Sinemet her appetite has steadily gone down. She really has no interest in food and eats very little. She exists mostly on chocolate shakes and instant breakfast mixes, little solid food. She does have anxiety and is taking meds for that as well. We're in the process of trying to find out if the problems is her medications or the anxiety. If it is the Sinemet, will her appetite eventually return? thanks
  13. Meals and Levodopa effect

    I have a problem I've never heard from others. I take extreme care of the intervals between L-dopa intakes(usually a on effect of 2 hours) and its proximity to meals(minimal of 30 minutes before them). But incredibly the effect of L-dopa drops to a complete off state as soon as I finish a meal(+/-15 minutes). Even when the meal has zero protein my state wears off imediatelly. I have tried different situations such as starting the meal just after the dopa takes effect - but the effect goes down in a few minutes. I also added by doc recomendation entacapone both with the previous and post meals intakes. But it did noit work also. Is it particular to me?? Suggestions?
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