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RickCopple last won the day on September 25 2017

RickCopple had the most liked content!

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About RickCopple

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  1. URSODIOL - A Potential New Drug for PD

    Hi one and all. Sorry for delaying getting back to you after my DBS surgery, but as you can imagine, things have been a little hectic of late, dealing with the aftermath of everything. First, the good news. The DBS surgery was a success! Leads were placed well, and I'm currently on absolutely no medications, yet my tremors are controlled.What isn't so well controlled now, is my balance. The higher it seems my DBS is turned up, the more unstable I get. The lower settings are better on that end, but put me borderline on tremors. Bad enough that no matter how low I turn it down, I don't seem to have the ability to do Zumba and am unstable at playing Pickle Ball. Of course, it has only been a month now since my DBS has been turned on. You can see the difference between the before and after Me's at the following links: This is me right before my DBS was turned on. You don't even need to watch the whole thing to see the difference. http://rickspdjourney.blogspot.com/2017/10/my-dbs-journey-day-15-preparing-for.html and one week later, http://rickspdjourney.blogspot.com/2017/10/my-pd-journey-week-2-of-dbs-programming.html Difference between night and day! The only negatives about the experience has been the normal culprits: memory and balance/gait. The memory issues are more of a nuisance than anything critical. Just forgetfulness of small details. ADHD like symptoms, which I've never had to deal with before. The gait and balance issues are a bigger deal. At a minimum, they might prevent me from doing Zumba fully. Right now I've restarted my Zumba class doing all chair Zumba. This was complicated with a recent prescription change in my left eye due to a cataract. Since putting on my new glasses, I've fallen around 6 times. Nothing major happened. But I don't want to wait until it does either. So I've scheduled a cataract surgery, as well as I'm doing as much without my glasses as possible (mainly need them for driving). Of course, they say give this around 3 to 6 months before deciding whether something will have to be lived with or not. So I'm hopeful with further programming and time, this too shall pass in a couple more months or so. Keeping fingers crossed, any way. But, even if this is something I'll have to live with, this will have been worth it. To be off the medication rollar coaster I was on with off times and dyskinesias, having only one or two hours per dose that I felt "normal", compared to being "normal" all the time, 24/7! I'd give up Pickle Ball and Zumba for that! Still, I hope for the best. Sorry to hear about your ordeal, Fred. I hope it all works out for you, one way or another. I have suspended taking the TUCDA for the time being, mainly to give DBS a chance to normalize before I throw in something else into the mix. But I'll be back on it soon. Then I'll be able to report how, if any, it aids DBS symptoms, if it does. I don't know if it will or not, mainly because I think the main way it supports current DBS symptoms may be due to its effect on liver function, making it more effective at processing oral medications like levodopa. Since DBS doesn't go through the "liver" (obviously), it will be interesting to see if it has any noticeable effect on those symptoms. Later!
  2. URSODIOL - A Potential New Drug for PD

    Either I'm not communicating well enough or you're going to see what you want to see. I don't follow your logic on the Amantadine. It did improve my symptoms some, especially my dystonia in my left arm. That's the main reason I continued to take it, as it did very little to help my dyskinesia other than to spread it out over the whole dosage period. If the worsening of symptoms after getting off Amantadine was due to a slowing of progression and it suddenly sped up (note, there is no credible evidence or claims that Amantadine slows progression) once off of it, you'd expect a corresponding increase in benefits on the front end, like I experienced with TUCDA. Rather what we have here is some targeted benefit increases upon taking it, but upon discontinuing it a huge decrease in benefits, even in areas like tremors that it seemed to have minimal impact on. Either one could say that Amantadine masked the progression, which I've not heard any claims it does that, so one would expect if that were the case to see progression happening over the course of taking it and not all at once when you get off of it; or Amantadine caused that worsening of symptoms as is documented that it can do, obviously in spite of my rigorous exercise program and any potential anti-progression of TUCDA. On the DBS issue, be aware that long before I started taking TUCDA, I've had dyskinesia problems. TUCDA has nothing to do with dyskinesia other than potentially enabling someone to lower there Sinamet dose, as I did earlier this month upon resuming TUCDA. In my second year, my symptoms had progressed a good bit, and my neurologist at the time told me to double what I was taking, which was 100 mg levidopa 3x/day. I was immediately hit with dyskinesias. Unfortunately for me, I have a very small sweet spot. The best I've been able to do is hit it for an hour or two during a dose while on my way to dyskinesa or tremors as it goes up and down. I'm getting DBS primarily to address this problem because nothing else has worked. I can't reduce my levidopa enough to get rid of dyskinesia without getting bad tremors, or raise it up enough to get rid of the tremors without getting some significant dyskinesias. That's been true no matter what level of progression I've been on. That's why I need brain surgery and it has little to do with my progression. Bottom line, I've related my experience with the drug. I've interpreted the results as best I can, knowing what I know. It has yet to be proven that (T)UCDA does actually slow progression in PD. At current, that is the hope based upon cellular studies and one small clinical trial for ALS. The jury is still out on that one, but it appears there is a clinical trial underway that may resolve that question in the near future. I suggest we wait for those results before making any dogmatic statements. I'm afraid I don't have time today or tomorrow for any more extended discussion on this. I'm going in for a CT scan today and tomorrow is the surgery to place the leads into my brain. Needless to say, I'll be busy and not thinking too much about this discussion. I may have more time this coming week since my activity level will be greatly reduced on the exercise front. Until then, I bid you all farewell.
  3. URSODIOL - A Potential New Drug for PD

    Hi Dave, I believe you can find some on this forum if you do a search. I've mostly read about it in warnings that one must taper down gradually from it. Here's one sample of what I found in that regard: http://www.druglib.com/druginfo/amantadine/warnings_precautions/ Both times my symptoms increased while on TUCDA was when I discontinued Amantadine.
  4. URSODIOL - A Potential New Drug for PD

    Hi Patriot, My progression while on TUCDA during the end of 2015 and 2016 were a direct result of getting off Amantadine. It is well known that people who get off of it, if not done right, can have their symptoms increase. The first time I didn't tyrate, and the second time was from a high dose while on the clinical trial as I detailed. Other than those two instances, I didn't progress. The other progressions I had occurred while I was off TUCDA, during most of this year. If anything, it lends support that TUCDA was slowing my progression down. But there is no way to know for sure. But my experience is more support that it does slow progression than that it doesn't. And, no one has claimed that it will stop progression altogether. We'll have to wait for clinical trials to know the truth on that. Aside from that, when I'm on it, my symptoms are better. When I'm off it, they get worse, as I've detailed elsewhere. But my neurologist and I have been talking about getting DBS for a long time because even early on, I have a very small "sweet spot" between symptoms and dyskinesia, so that I have either one or the other, with only about an hour to an hour and a half of "normal" time for each dose. That is the main reason for the DBS, so I can get off this medication roller coaster and feel "normal" most of the time, and I can get part of my life back and have several more good years before this disease forces my wife into caretaker mode.
  5. URSODIOL - A Potential New Drug for PD

    HI Fred! Yeah, I know, long time, no hear. Time for a long, overdue update of my own. But first, found the above article you posted back in June of interest since I've recently started a "plant-based" diet. While the "good"/"bad" food list given includes fish and poultry, the bulk of it is plant-based, which eliminates all meat and dairy from one's diet. I think I know what Dr. Gregor would say to that (a proponant of plant-based diets to treat diseases), that the fish and chicken are there because most of the people eating it were also eating a lot of plants, offsetting any negative reactions of the other. Also, most would say to avoid oil in general. Anyway, plenty of rabbit trails to go there and I don't have time right now to do so. Just wanted to indicate that I've been doing a plant-based diet for almost a month now. More on that in a bit. What I wanted to relate to you and any reading this thread, is my recent experience. As anyone who has read through these pages would know, I started taking TUCDA back in Feb. 2015. As I documented at the time, I noticed within three to five days of taking it, dramatic improvements in several areas such as tremors, cogwheel motions, surprisingly: voice, gait, etc. I took it faithfully, at a 1000 mg/day does, one 250 mg pill 4x/day up through the end of 2016. During that time, my PD did progress, but it was in direct response to discontinuing Amantadine. The first time to get off it in preparation for doing a clinical trial on Amantadine ER (which I believe was recently approved by the FDA) at the end of 2015. At the time I was taking 3 100/25 mg Sinamet pills a day. I had to double it after that. I'm pretty sure I was taking the highest dose of Amantadine on the study because my side-effects were so much stronger than they were on my prescribed dose. So much so, I was about to call it quits on the study as it was affecting my vision. But the study beat me to it, ending it due to lack of participation (they had another long-term concurrent study going on that is obviously what the approval was based on). So when I ended that medication in April 2016, despite tirating off it, I ended up needing to go to taking my 2 pills 4x/day. So I was getting 200 mg of levidopa 4x/day at that point. At the beginning of this year, our finances took a big hit. We were struggling to pay the mortgage and groceries. Needless to say, it became near impossible to have the money to continue my TUCDA habit. So I ended up getting off them. I can't say what all negative effect that had. For one, by that point, I'd been on a pretty intense workout schedule. Even became a licensed Zumba instructor in January. So a certain % of my lack of progression save the two instances mentioned above is due to my efficient cardio condition. My resting heart rate is in the upper 40s, thanks to Zumba and Body Step. Consequently, whatever increase in symptoms that happened then were somewhat mitigated by my much better physical condition than I had in Feb. 2015 when I first started taking TUCDA. Also, I sort of didn't want to know, so I didn't pay a lot of attention to it. Despite that, in looking back, there were signs my progression sped up, and symptoms got worse. My voice wasn't as solid, and in March, I was retired as a chanter. In July and August, I had begun to wonder whether I was any use singing in the choir because I couldn't get any low notes to be solid or have any volume. I was about to retire myself from the choir. Additionally, my symptoms worsened enough that by May or June I had to start taking 250 mg of Sinamet 4x/day. In Aug. I had increased that up to 375 mg as my off time was becoming very "off" and difficult. That's when it dawned on me, toward the end of Aug. Aug 1st my Medicare from the disability finally kicked in. Prescriptions I was paying around $ 100/month for suddenly dropped to costing me $15. I realized I could justify getting TUCDA again. So I ordered some and have been taking 1000mg/day during the month of Sept. Bottom line, an immediate improvement in voice consistency and volume and hitting the lower notes, just as happened in 2015. The big symptom change I notices is that my off times became much better. However, my dyskinesia increased, indicating I was taking too much levidopa. So I cut back to taking 1 250 mg pill 4x/day, and it didn't worsen my symptoms. Been on that dose most of the month. The dyskinesia is still there, but not as bad. One note that may play into this, and it dovetails with the article you posted. Beginning of this year I started a ketogenic diet, which in a small clinical trial had shown improvement in people with PD. I think there was 12 or 15 people in that study. I decided to give it a spin. I was on that diet until the beginning of this month. Due to my doctor pointing me to Dr. Gregor's website, nutritonfacts.org, I became convinced that the ketogenic diet was not the way to go, that numerous studies show cultures high in eating meat have ultra high rates of heart disease (in the US, it has been the #1 cause of death for many years with cancer right behind it), whereas in cultures that only eat meat on rare occasions but mostly eat plants, they have virtually no heart disease. All based on scientific studies. So right about the time I started taking the TUCDA again, I also switched my diet from ketogenic to plant-based. I think the benefits from changing the diet would not have been as sudden, but would only now be showing up, or maybe a week ago. Most all the positive symptom decreases happened within the one week span. But, it is also clear that I showed definite signs that my disease progressed at a faster pace since Jan than before I stopped taking TUCDA, despite my better condition physically. The only question mark is how much of a role did the ketogenic diet play in that progression since it encouraged eating meat. Dr. Gregor blames growth hormones, which he says infects all meat, even organic meats because it has been so widely used, and the increase in saturated fats. However, I don't think the ketogenic diet would be as negatively affected by saturated fats. Simply because your body is burning them for fuel. They don't get stored or left free to float around in your bloodstream like teens in a gang looking to cause mischief. I was eating around 3000 calories a day, 70% of it coming from fat, much of it saturated (a cup of heavy cream, several Tbs. butter, along with the meat, and 3-6 eggs each day) left me staying around 147-150 lbs. without dropping any further. My EKG at the end of Aug. showed a healthy heart and my blood pressure has improved, falling in the 108-118 / 60-70 range. But if you're burning carbs, which most meat eaters are, those fats don't have anything else to do but either hibernate in giant fat cities or roam the vessels looking for trouble. So what part of the progression was due to the diet and what was due to the absence of TUCDA I can't know. What I do know is for those few months, my symptoms did progress more rapidly. And upon resumption of TUCDA, improved once again, too fast to be attributed to the diet change. Now for the other piece of this puzzle. Since last year, my MDS and I have been talking of getting DBS done once my Medicare kicked in. Well, it is happening this week. Wed. at 2:15 pm CDT to be precise. It is my hope that with this surgery, I can get off my meds (at least reduce them enough I no longer have dyskinesia). But in any event, I plan on continuing the TUCDA in the hopes that between DBS and TUCDA I can have a few more years of feeling "normal" most of the time. As well the exercise. If anyone is interested in my DBS experience, I'll be doing a daily post on my blog recording my experiences through to the first programming on 10/10. Blog: https://rickspdjourney.blogspot.com Subscribe via email: https://feedburner.google.com/fb/a/mailverify?uri=blogspot/VqTkN&loc=en_US That's my update! Thanks.
  6. Great poem. I'm a writer as well, mostly fantasy and space opera fiction, but I have enough poems I'm planning on putting out a book of them, which will include a few PD ones as well. I usually write at least one each year in Parkinson's Awareness Month. Let's see if I can dig up the link for this year's poem: http://rickspdjourney.blogspot.com/2017/04/dream-births.html
  7. Symptoms started on my non-dominate side, left side, mostly in my left arm and hand. First dystonia, then tremors by the end of 2012. Diagnosed in 2013 during my first office visit to a neurologist, at which time the tremors were more noticeable. Sometime in 2014, toward the end of the year I think, my right arm began to be affected with tremors, but not dystonia. Now, my right hand tremors worse than my left, but to date has never contracted dystonia. That has stayed only in my left arm. When symptoms start up on the previously unaffected side, that is known as stage 2 of PD. So far, I've not progressed to stage 3, which is when balance issues become a bigger factor, freezing can happen, falls are more likely, and any bradykinesia becomes more pronounced. I'm hoping my exercise regimen for the last 2.5 years and the DBS I'm getting this week will delay stage 3 for many more years. Of course, the earlier you get it, the slower it progresses at first, generally speaking, if there can be any "generally" statements with this disease! Seems everyone experiences it differntly, even if we have many of the same symptoms.
  8. DBS - Frameless & Rodless

    Hi folks, Been a while since I've dropped in to the forum. But I wanted to let everyone here know that next Wednesday (9/27/17), I'll be in surgery to place the leads for DBS. Following Wed., 10/4/17, I'll have the battery installed. First programming session is on Tuesday, 10/10/17. He is doing a frameless DBS which means I won't be attached to a halo. Rather, a lead feeder will be screwed onto my skull over each hole to insert the leads. Dr. Patel in Austin, TX is one of 6 neurosurgeons in the USA qualified to teach this procedure to other surgeons. He's done a lot of these, obviously. I know I'm in good hands. But, and this is the interesting part, standard frameless DBS still required 5 rods to be attached to the crown of the head so the computer model of the brain would have reference points to track any movements of the head. At the end of August when I had my initial consultation with Dr. Patel, he indicated later that week they were getting in a new machine that no longer required the rods to track movement. I guess it does it by some other method. If he was satisfied with the accuracy of the machine by the time of my surgery, he would be using it and I would not require even the five rods to be installled the day before. Well, last week I received the call that he's going to be using the new machine. So now the only thing being attached to my head is the lead feeder. How cool is that? Anyway, I'll be starting a daily blog journal on my PD blog beginning Monday (9/25) and planned on running it through 10/10 when I get my first programming. We'll see how far it goes from there. But thought it would be informative to detail my experiences with the procedure, as well as give family and friends a place they can get updates on how I'm doing with it. Anyone here is welcome to follow my blog if they are so interested. Go to https://rickspdjourney.blogspot.com (no ads or selling going on there) and on the right toward the top, or for mobile phones at the bottom of any post right after the comments, you'll see a field to enter your email to follow the blog. Once registered, you'll get any blog post I make there in your email. You can unsubscribe at any time. Sorry I've been gone for so long. So much to do and only so many hours in the day I'm afraid. But I figured many, including old friends, might be interested in my new adventure. I'll try not to be so much of a stranger.
  9. Look, Ma. I'm dancing!

    Been out of sight lately, mainly due to all going on in my life. Too much to do, so little time, etc., etc., etc. You know the drill. But thought I'd hop on to update this thread I started a little over 1.5 years ago. What am I up to now, and how has it helped me? Before I talk about Zumba, which yes, I'm still doing, I should mention the other exercises I'm currently doing. Generally each week, I do: 1 Body Step class, 1 Body Pump class, 1 Pilates class, then aside from the 4 classes of Zumba, I also do one Aqua Zumba class and around 10 hours of Pickle Ball (if you don't know what that is, check out this video to see it in action). In relation to Zumba, I'm going strong as ever. However, beginning in January, I'm entering a new phase of my relationship with Zumba. What is that? Sort of a story, so rather than regurgitating it all here, I'll point you to my blog post as an update on my new venture. But I'm still in stage 2 of PD progression, and exercise in strengthening my muscles has improved some symptoms like bladder control (significantly), and my gait, and reduced bradykinesia, as well as stronger and bigger movements. Add that to the fact cardio exercise is clinically proven to slow the progression, anyone wanting to fight this disease rather than give up to it should do what they're able, no matter how small or big it is. While I have progressed, I believe primarily due to getting off Amantadine twice (each time I required more dopamine meds than before getting on it), I can say progression did slow down. Seemed the train was going at a pretty good clip before starting my exercise almost two years ago. Since then, not so much. Just wanted to update this thread on how its gone since then. Stay positive!
  10. PD Awareness Month: Why Me?

    I've written a poem for PAM the last two years. So naturally I gone off and done it again. It made my wife cry, so I must have done something right! I hope. Anyway, if you've got a hankerin' to read it, follow the link: Why Me? http://rickspdjourney.blogspot.com/2016/04/why-me.html
  11. URSODIOL - A Potential New Drug for PD

    Looks like Fred's link to the study indicates the article's g/d was grams per dose. Based on that, I could double it to reach the mild category.
  12. URSODIOL - A Potential New Drug for PD

    According to this article on the study about safety of use: http://www.medscape.com/viewarticle/818634 I'm assuming "g/d" means grams per day. If so, that would be 2-3 of my 500 mg pills per day. If "g/d" means per dose instead, you'd double and triple that amount. The article does mention some other possible side-effects than gout, including kidney stones and hypertension. No one in their group experience gout or hypertension, but there was instances of kidney stones and uric acid crystallization. Only one of those required surgery to fix. The rest were reversible. But the study concludes: I'm currently taking 1 g/day, 500 mg in the morning and 500 at night. I'm six months into taking it with no noticeable side-effects thus far. But sounds like it is wise to monitor the Ph levels in your urine, just in case. I've never had a kidney stone, and based on what people have said, I don't want to ever have one. So I think putting the dose on the low side is wise until the studies confirm the safest and most effective dosage.
  13. URSODIOL - A Potential New Drug for PD

    As you know, and several here do as well, but for the benefit of new folk, I've been taking TUCDA since late February of this year. The symptomatic benefits I detailed on my blog ( http://rickspdjourney.blogspot.com/ - look for post at the beginning of this year) and in summary here on this thread, as well as my test to exclude any possible concurrent benefits from starting Azilect in November of 2014 since there was potential overlap. Though I was glad for the reduction of several PD symptoms, the most valuable benefit would be the potential slowing down in the rate of progression, as has been tested in lab trials and one human clinical trial for ALS (which has similar root causes: the dying of nuerons). Still waiting for a human trial on PD, but I hear that may not be far off. Now that they have biomarkers that can more accurately measure the pace of progression, eventually we should be able to get a definitive answer on whether TUCDA does help slow the progression and by how much. Since that time, I've not noticed any substantial progression of my PD symptoms. Not like previous years where I noticed definitive progression in a year's time. I did notice some progression in the first half of the year, but nothing major. Just a slight increase in tremors, especially on my right side which started showing up last year as the symptoms began to move over to my right side. I have noticed, this year, another symptom improvement, but I am unsure when it started, so it is hard to pin it down whether TUCDA is the source of this improvement. My bladder control has improved significantly. I've also done and added several other treatments which could be the source of the apparent slowing of progression and improvement in bladder control since the conclusion of the TUCDA results. In March I started an exercise program at my local Y. Studies have shown that cardio exercise does slow progression, so that is certainly part of the mix as to why I've not noticed any significant progression this year. About three months ago, I upped what I was doing to a more intense level. Currently I do about an hour each of the following classes per week: Zumba 4x/week, Pilates 2x/week, Hydro Fit 1x/week, Body Step 1x/week, and Body Pump 1x/week. Today and Sunday are my two normal days off. Some weeks I miss one here or there. Last week, due to our Thanksgiving trip to see our daughter and grandkids 10 hours away, I only got in one class of Zumba and Pilates. Got back to it all this week, however. In June, in conjunction with starting my Amatadine prescription, I started taking CDP Choline. (BTW, Jon, plain Choline won't get past the blood brain barrier, it has to be CDP Choline.) I don't know that it does anything to slow progression, but it does stimulate the production of several neurotransmitters in the brain, one of which is dopamine. So it may have helped with symptoms to a degree, which would mask any real progression. That, along with Amantadine may have allowed me to reduce my Sinemet dosage in half for a period of time, But in the last month, the tremors were getting too much to deal with, so I've gone back up to my normal dose of Sinemet. I think the Amantadine helps the dyskinesia to be less, but not absent. So it is unclear how much the CDP Choline has helped, but obviously not enough to replace Sinemet or even allow for its reduction very much. Of course, the need to go back up to a full dose of Sinemet may due to progression as well, or I've heard the symptomatic benefits of Amantadine are short lived, so that could be the issue too. Or a combination thereof. Another factor was in late June, I started taking the supplement Inosine. It is one of the substances being tested in Phase II clinical human trials. I believe the one MJFF is helping to fund. Currently it is sold as a body-building supplement and it is pretty cheap. (Which debunks the idea that cheap substances already on the market can't get funding for trials, but likely means when and if it does get FDA approval, the supplements will become regulated and the winning drug company would raise the price to recoop their research costs.) But it is one of the promising substances being tested to slow the progression of PD and has had some positive results thus far. So I figured it couldn't hurt to take the recommended dose for athletes until and if it gets FDA approval. Only if you do take it, there is a risk of gout developing, so good to let your doctor know about it and to at least know what symptoms to look for with gout. But since Inosine has shown significant promise of slowing PD, that could also be a factor in my seeming lack of symptom progression this year. Another potential, though it seems slight at this point, reason is Azilect. I started taking it in Nov. of last year. One human trial showed that it slowed progression by about 3-5% if I recall correctly. However, the study's methodology was questionable enough that the FDA didn't approve Teva to make the claim that it did slow progression. That said, doctors like mine will prescribe it primarily upon the chance that it does actually help slow progression. And it does have some minor symptomatic benefits for many people as well, especially early on in the disease. That said, it is possible that for me, it affected my rate of progression this year to some degree. Another potential reason is simply that it is common for progression to level off for a period of time after 2 or 3 years of symptoms showing up. The earlier you get it, the more prolonged that period will be. This is my fourth year of PD since symptoms reared their ugly head. So I'm due for it. So it is possible that TUCDA played a part in my apparent slowing of progression, but the waters are too muddied with different variables to say which, if any, of these are responsible, or what mix of them did the trick. Which is of course why we need human clinical trials on TUCDA to show its effectiveness in dealing with progression. Even if TUCDA was the only thing I'd taken this year, I couldn't have made a definitive statement saying it did slow it down because the reduction may have been natural. The only way I could know is if I split in two, and one of me took it and the other didn't and then see what, if any, differences there were. But I'm not keen on that, as I've heard splitting in two is fatal, and that sort of defeats the point of all this. So including the new ones I've listed above, here is my current treatment substance-wise per day. Prescription Meds: Levadopa/Carbidopa 25/100 mg 3x Azilect 1 mg (I've been off it for three days now waiting for patient assistance to approve another year.) Amantadine 200 mg Supplements: TUCDA 750 mg CDP Choline 500 mg Inosine 1000 mg Probiotics 3 billion CFU Fish Oil 2000 mg True Cinnamon 1200 mg Coral Calcium 2000 mg (keep bones strong as I age and falling starts to become an issue eventually) ~~ Antioxidants ~~ Grape Seed Extract 400 mg Vitamin C 2332 mg Longvida Cucurrium 800 mg ~~ The following are for cognitive health primarily. Vit D3 is primary, the others make it more effective. ~~ Zinc Citrate 50 mg Vitamin D3 6000 IU Vitamin K2 90 mcg Magnesium Citrate 450 mg (this also helps with constipation and a healthy nervous system) ~~ The following are taken in one pill (2x/day) labeled as a "Glutathione Precursor Complex". ~~ Acetyl L-Carnitine 200 mg Milk Thistle 100 mg L-Glutamine 200 mg N-Acetyl-Cysteine 200 mg Trimethylglycine 100 mg Alpha-Lipoic Acid 75 mg L-Gluthathione Tripeptide 75 mg That's my current treatment, along with the exercise, that seems to be helping me overall.
  14. URSODIOL - A Potential New Drug for PD

    Christi said: I understand they are different diseases in regards to those aspects. However, they have a common baseline problem: http://www.alsa.org/about-als/what-is-als.html The preclinical data suggests that UCDA works, if it does, by preventing or slowing of cell death in the brain and nervous system. Dying neurons are common to both diseases. So if TUCDA did slow the progression of ALS, it was because it was able to keep cells from dying as quickly in the brain and nervous system. Because PD also results from dying brain cells, just in a different area of the brain, there is the potential for a cross over application. The ALS study also shows that TUCDA did have an effect in slowing human cell death as it has shown to do in the preclinical data. So it is evidence that its cell protective ability may be able to do the same thing in PD's dying cells in human brains as it did for fruit flies. I think that ups the % chance that the preclinical data will apply to human PD patients because it appears to have applied in ALS's case. I understand the caution. It has yet to be proven. I know a clinical trial may show it does little to nothing for PD. But I think there is cause for hope it will, based on what we know. Time will tell, for sure. I understand the two are completely different in how they attack the issue. They are two totally different drugs. I'm not comparing that aspect between them. I'm comparing their results in slowing the progression of the disease. All of the hundreds of studies on Azilect that were successful only dealt with symptomatic benefits in PD. There is no study, however, conclusively proving that Azilect slows the progression of PD. That is why the FDA doesn't allow Teva to make that claim in their literature. Compare that result to UCDA's results in this department. Keep in mind, all the preclinical trials on UCDA focus not on symptomatic improvement, but in its ability to prevent or slow cell death. Clinically, it is not being suggested it will improve symptoms beyond what can be expected by the slowing of cell death, which would be little to none. It would have to show it actually revived dying neurons to do that. The symptomatic benefits are purely anecdotal at this point. TUCDA has one study which shows it may slow the progression of dying neurons in ALS, in that the small sample did show a slowing of progression in those taking TUCDA. It still needs to be proven on a larger trial, and naturally is still to be shown that it will do the same for PD patients. But in the slowing of neurodegenerative diseases: TUCDA - 1, Azilect - 0. Yet doctors, like mine, will prescribe Azilect not primarily for symptomatic benefits, but upon the chance that it might slow progression. That's all I'm saying. On the neuroprotective front, Azilect has not proved itself, but yes, it has shown itself to be symptomatically beneficial to many through many clinical trails. That doesn't negate my point. Thanks for the clarification. When someone is responding to my post and words, they are talking to me unless otherwise stated. So you would have had to said you're not responding to me to not be responding to me. Otherwise it defaults to responding to me. But we all make those mistakes from time to time, so no big deal. We're good. But to be fair, the only person I've seen in this thread stating it was a cure for PD was Jon when he first came on. He backed off that statement early on, recognizing that was an over-reach of what the data shows. Incidentally, though not at all scientific medical data, I found it interesting what traditional Chinese medicine has said about PD. They claimed it was due to a problem with the liver. So they'd give their patients drugs and practices that they believed aided the liver to relieve PD symptoms. I don't know how well that worked, but I found it interesting the coincidence that UDCA is a drug for liver health. The supplement TUCDA is marketed as "supporting liver health." I don't know if anyone has looked into a link between the liver and the brain, but it would be funny if clinical trials eventually showed there was symptomatic benefits to UDCA due not to slowing the progression, but because it made the liver work better. Just a side thought. Not that it proves anything. I just found it an interesting link to this thread.
  15. URSODIOL - A Potential New Drug for PD

    Christie said: RickCopple, on 20 Oct 2015 - 06:02 AM, said: That's exactly what I said. That UDCA is promoted in this thread like a snake oil. Doesn't that bother you? Why are you supporting those who do it? ----------------------------- I was stating that from your perspective. I've already explained what I'm supporting and not supporting and why. Do you want me to regurgitate it all again? Patriot said: My initial response to that is I didn't believe it fell into that category. That's what I was talking about. Then you said: To which I disagreed that the promotion of something makes UDCA a snake oil. It is whether the substance can or potentially can do the things for which it is promoted to do. That's what the FDA does, makes sure promotions of drugs reflect reality to protect the consumer. Then you asked me why I had a problem with calling UDCA snake oil. I responded to that. If you want to suggest that the promotion on this thread sounds to you like the promotion of snake oil, be my guest. Everyone has a right to their own opinion. But on the objective level, I disagree with Patriot saying it is snake oil and I disagree with you that the promotion, not the effectiveness of a drug, makes it snake oil. Only to the degree that the promotion proves untrue. Agreed, which is all I've said, that it shows promise based on current evidence. Enough apparently to support fast tracking it for clinical trials. True snake oil wouldn't even pass laboratory testing for effectiveness. UDCA has, so not snake oil. There is scientific bases for its claims. What is left is to prove in clinical trials that it can do the same thing in humans who have PD as it did for fruit flies with PD. I know it may not pan out, but as you said, there is certainly reason for hoping it will. The same cannot be said of real "snake oil" drugs. I never said it improved survival. That should have been obvious because I was clear on that point. It reported to slow progression, which would extend the time before death happened. PD doesn't have an absolute survival deadline like ALS, especially if one subscribes to the "You won't die from PD, but you'll die with it" meme. But for the vast majority of PD patients, it will be years after symptoms shows up before any death, directly or indirectly, due to the disease if something else doesn't get them first. What we are talking about is whether UCDA can slow progression to extend the quality of life and delay the later stages of PD progression. Being both PD and ALS are based upon dying neuron cells, there is hope that the results shown with ALS will have a crossover effect for PD, which is supported by preclinical data. So you agree with the point I was making, that the study shows "patients who took TUCDA had slower deterioration." That's all I said, and is evidence that it can potentially do the same with PD. Yet you speak as if I'm claiming it is evidence of a cure or something. That is a straw man. Yes there is a comparison, the one I stated. Both have claims to slow the rate of PD progression. Both have yet to be clinically proven in PD beyond a reasonable doubt. The one study for Azilect is in question scientifically as to its conclusions. TUCDA has shown some effectiveness in one clinical trial to slow progression of a related disease, ALS, but not yet PD. To my knowledge, that study, while small, is not in question to its conclusions. So UDCA actually has some accepted clinical support for actually slowing the progression of a neurodegenerative disease whereas Azilect does not. Again, you're responding to straw men. I never said it compares to Azilect in clinical proof in regards to symptomatic benefits, only in disease progression. I haven't made the claim that UCDA has had any clinical trials completed in PD patients. I've acknowledged the exact opposite. So why do you keep responding to claims I haven't made instead of addressing the ones I have made?