I wanted to squeeze in one more post I've been needing to do before I turn my attention mostly to my experiences with the DBS (deep brain stimulation) surgery coming up.
I'm typing this one out rather than a video blog in part because my wife is napping and will soon go to bed and I don't want to disturb her and also because if I type it out, I don't have to pronounce that big drug name and make a fool out of myself. <g> You have my permission to pronounce it in your head anyway you want.
The abbreviation for this substance is TUCDA. What is it? It is ursodeoxycholic acid that has been joined to taurine, a sulfur-containing amino acid in your body important in the metabolism of fats. Thus the prefix "tauro" to the word.
So then, what is ursodeoxycholic acid (UCDA)? Glad you asked. It is a type of bile acid naturally produced in our bodies that is prescribed by doctors to dissolve a certain type of gall stone. The liver in processing UCDA combines it with taurine. To pre-combine it saves the liver some work. Plus TUCDA is a supplement sold over the counter, usually touted as a way to keep your liver healthy for people working out (I assume because some of the "supplements" they take aren't so good for the liver). However, especially if you have good drug insurance, if you can get a doctor to prescribe UCDA for you as an "off label" use, it is much cheaper than buying TUCDA from your drug store, health food store, or online.
Why would I want to buy it? For those new to the blog, I direct your attention to the posts in January and February of 2015. You may not have the time to read them all now, so I'l summarize what you'll find. I had read a couple of people's experiences with this substance, and how it seemed to improve their symptoms as well as showed promise of possibly slowing down the disease progression based on cellular studies and one small clinical trial for a related disease (ALS) where it successfully extended the patient's life indicating a slowing of progression in that disease. At the time, however, it still lacked any clinical trials for Parkinson's showing a significant number of people would be symptomatically helped by it or that it would indeed slow down the progression.
With that, and studies showing the drug was safe for most people, I decided to verify for myself whether it would help me any. Low and behold, to my surprise, it did! I sincerely didn't think it would because I'd tried so many other things that claimed to help or "cure" PD only to get zero results from them, that I fully expected this to also fall into that camp. If you read through those posts, you'll see the significant improvements in symptoms that I was having at the time that I concluded was due to taking TUCDA.
Consequently, I continued to take them after the test was over, and I did so through 2015 and 2016. During that time period, my disease did progress (few expected it to actually stop the disease, just slow it down) but it was primarily due to getting off the drug Amantadine twice. Once at the end of 2015 in order to be part of a clinical trial on an extended release Amantadine, and then the end of the clinical trial in May of 2016. Both times I had to increase my dosage of levodopa to compensate for the worsening of symptoms: from 100 mg 3x/day to 200 mg 3x/day, and then to 200 mg 4x/day due to earlier off times.
By the end of 2016 or the beginning of this year, our finances became very tight. So much so that I simply didn't have the money to pay all the bills. Since my monthly supply of TUCDA ran me around $80/month, it came down to not having the money to buy it. So I stopped and hoped for the best.
In many ways, my symptoms that I had before taking TUCDA were worse than they are now. A big part of that is in February of 2015 I embarked on an intensive exercise program that I'm still very active in. I've noticed several symptomatic improvements from that as well, and there are clinical trials proving that cardiovascular exercise does slow the progression of Parkinson's Disease. Ironically, I'm probably in the best physical shape of my life right now. Improvements from exercise I've noticed include nearly total regaining control of my bladder, a clearer head--less times I've felt a grogginess in my thinking--, improvement in gait, improvement in balance (though dyskinesia does a number on that too), being able to open packages with my bare hands (I often needed scissors to do so) are examples.
Despite all that, sometime in the Spring, I believe, I was having significant off times again. I added another half-pill of levodopa to the dose, so uped it to 250 mg 4x/day. Then in June I had to add a half of the now 250 mg pill I was taking to deal with the symptoms so that I was taking 375 mg 4x/day. The disease did seem to be progressing faster this year since getting off TUCDA, and there was nothing like getting off Amantadine that I could point to for the cause.
As some reading this know, in August, I started getting Medicare. It is the main reason I can afford to get DBS surgery at this time. One of the other benefits I get with it is paying only a $5 co-pay for the three medications I've been taking. So what cost me just over $100/month was now costing me $15.00. Cool!
Well, I happened upon those post back in Jan and Feb of 2015 and I recalled how it helped then, how things had seemed to go downhill this year, and thanks to the reduction in how much I had to pay for my drugs, I could now afford to get back on TUCDA. So I looked and found one that was even cheaper than before, costing me under $60 for a month's supply. I think I paid $54.00. So I ordered some and started taking them again.
That was about two weeks ago. What's happened since then? One of the unexpected symptom improvements last time was my voice. I had begun to lose my low bass notes. Had trouble hitting them, and if I did, had trouble holding onto them solidly. What has happened since getting off TUCDA in Jan of this year? I was retired as a chanter because of trouble singing songs I knew well. And in July, I was seriously considering whether I should continue in the choir because I couldn't hit the low notes well or with any volume. I felt I was contributing very little and would be better to go sit with the rest of the people and leave the singing to the others.
These last two Sundays, almost immediately upon taking TUCDA, just as it happened last time, my low range has returned. I was able to sing solidly in choir, and my reading voice was loud as before. I need to keep taking this if for no other reason, because it helps me retain my vocal range and voice.
The first week of taking it, I noticed my dyskinesia increased. Those are uncontrolled movements due to overstimulation of the nervous system by the drugs I'm taking. For me it involves head bobbing due to muscles in my neck tightening uncontrollably, and my left leg wiggling because it wants to move! When that happens, it is a sign that you're getting too much levodopa. So I stopped taking the extra half-pill I'd added on last time and that dose seems to be working fairly well, whereas before I had a big off time. Now the end of my dose even with this lesser amount of levodopa, is better than it was before adding that half pill in. Which indicates that either the TUCDA is improving my symptoms once again, and/or is making the levodopa and other drugs more effective.
The only other possible explanation for those improvements is I did switch my diet from ketogenic to plant-based about the same time I started taking TUCDA again. It is possible that played into it. Not as likely since it will take a few weeks for my body to switch over and the full effect of the new diet to manifest itself in symptom improvements. And nothing other than TUCDA has ever affected my vocal decline like that, and that fast. Within the first week, I could tell that by the end of playing pickle ball, when before my symptoms made it near impossible to play, now they are minor enough I can still play with some gusto. I don't think a diet change would have made that improvement that fast.
So that's my report on that front. It will be interesting to see how much I can reduce my medications after the DBS. Even if I'm able to totally get off of them, I may still take TUCDA to keep progression as slow as possible.
This Tuesday, I have my MRI done. I'll be under general anesthesia for the first time in my life. I'm hoping for it to be nothing more than taking a 2-4 hour nap. It'll go quick for me. Not so much for my wife who will be sitting in the waiting room.
Be sure to follow this blog by email using the form below the comment section if you want to stay updated on not only how the MRI goes Tuesday afternoon, but the rest of my DBS adventure.
Thanks for reading!
Showing posts with label vegan. Show all posts
Showing posts with label vegan. Show all posts
Monday, September 11, 2017
Saturday, September 9, 2017
Parkinson's and the Plant-Based Diet
About two weeks ago, I was introduced to Dr. Greger by way of my doctor. He gave me a website to look at, and told me to do a search on Parkinson's and see what foods it suggest one should eat and not eat to benefit Parkinson's.
This action on his part was due to a comment I had made earlier in the visit. We had been discussing my toenail fungus. It is pretty much controlled, but I have to keep treating it and I've tried several treatments, some helped more than others. He suggested I try putting coconut oil on it. He said it has antibiotic and anti-fungal properties. (I have to say, it has done better so far than anything else.)
Upon hearing his suggestion, I blurted out that I have plenty of coconut oil because I use it in my bullet-proof coffee every morning. I had also told his assistant earlier that I was on a ketogenic diet. He immediately indicated that using coconut oil is one of the worst foods I could eat. He didn't expound on that and I didn't want to get into a debate, realizing that he was obviously in the camp that saturated fats of any kind were bad for you.
So when he gave me this website to look at, I was pretty sure it was going to tell me that coconut oil was evil and that the ketogenic diet was not a good diet for long-term health. I would not be disappointed.
While I felt I had researched this topic on saturated fats, especially as it relates to coconut oil, I was open to find out if there was information I didn't know. So once I came home, I started researching what Dr. Greger had to say on the subject. The bottom line is I certainly did run across new information on this topic that has forced me to reevaluate my conclusions. I had seen other people try to make the case that saturated fats were intrinsically bad, but they rarely dealt with the arguments for coconut oil being good for you put forth by their advocates other than to say that they're wrong, don't listen to them.
Instead, Dr. Greger took a different approach. He reads and studies all the hundreds of studies on nutrition put out in medical journals each year, and uses them to address all sorts of nutrition topics. As it relates to coconut oil, he demonstrated that the study or two advocates for coconut oil use are taken out of context (the Pacific island study where residents ate a lot of coconut and were healthy also ate a healthy plant-based diet which would help offset the negative effects of the saturated oil, as well as the fact they were eating coconuts, not drinking coconut oil, so the fiber in the coconuts also aided in processing the saturated fats), and in studies where populations did eat a lot of coconut but did not have a plant-based diet, there were high instances of heart disease and plague in the arteries. Also not often mentioned is that coconut oil is only around 10% MCT (medium-chain triglycerides) which is a main reason given for using it because it is said to convert immediately to energy your body can use. But there is still much of the troublesome short-chain triglycerides, much more than there are MCTs.
I have to admit, he was pretty convincing. I'm not totally convinced that coconut oil and saturated fats are bad in and of themselves. Mainly because of Dr. Greger's own admission that the diet of those islanders was good enough to offset the negative effects of coconut's high saturated fat content. He is drawing a conclusion here that appears logical based upon some assumptions. What if instead of a healthy diet offsetting the effects of saturated fats, it actually aids the body in processing and using those fats in a healthy manner?
I also don't think he's taking into account the fact that a ketogenic diet is using that fat to generate energy for the body. So even saturated fats serve the purpose of providing fuel for the body instead of having nothing else to do but play hide-n-seek in the arteries. When a body is not in ketosis (the state of burning fat for energy instead of carbs), that excess fat can be a big problem. It isn't needed for energy, so your body stores it in case it is needed, and a bunch of it floats around in your blood, causing problems like high cholesterol, forming plaque on artery walls, leading to hardening of the arteries and heart disease.
This appears to be what has happened with me. I've been on a ketogenic diet since February of this year. My intake of coconut oil really wasn't that big. Mainly amounted to around two tablespoons of it in my morning coffee. Occasionally I'd cook with it. I ate a lot more saturated fats by using heavy whipping cream and eating meat. I'm sure I also had a "healthy" serving of cholesterol each day, as I often ate anywhere from 3 to 8 eggs a day.
Despite all that saturated fat and evil cholesterol, my blood pressure readings before going on the ketogenic diet were on the high side. Not in red alert status, but it wasn't ideal. It had come down a good bit by the time I started the keto diet. However, based upon what Dr. Greger said, and no doubt what my doctor would think, all the fat I was eating to keep my weight up should have been clogging my arteries and causing a higher blood pressure readings. Here is the readings over a period of more than two years done by my neurologist.
12/29/2015 124/78
02/22/2016 148/81
11/14/2016 118/72
04/03/2017 108/61
08/24/2017 105/73
As you can see, at the end of 2015 and beginning of 2016 I had a couple of high readings. Possible the one in Feb. 2016 was a fluke or something. By Nov., however it was down to a respectable 118/72. Not ideal according to Dr. Greger, which would be closer to 110/60 (or pretty close to that, I don't recall for sure).
Yet the two readings my neurologist took after being on the ketogenic diet, both show blood pressure readings well within the doctor's ideal range. My blood pressure improved while on the ketogenic diet in the same way that he claims it would on a plant-based diet (or more commonly known as vegan, but I guess he's trying not to scare anyone from taking a serious look at it).
Of course, my experience doesn't prove anything. But I believe the reason it did improve as it would on a plant-based diet is because: one, I was avoiding processed foods for the most part and eating healthy foods, and the fat wasn't sitting around in my body, but was being burned almost as fast as I could shove it in my mouth. I had to eat around 3000 calories a day to keep my weight from falling below 145 lbs. So as Dr. Greger would say, there needs to be more studies done on that so we can know whether saturated fats are processed in a positive manner in the body that is in ketosis. Maybe he knows of one or two.
But obviously if you're not in ketosis, not eating healthy--eating lots of processed foods, sugar, eating out a lot--sucking in saturated fats like I was could be deadly.
That said, he made a convincing case for using a plant-based diet, all backed by scientific studies, to help with many conditions, including Parkinson's Disease. Western cultures that have a high meat content tend to have ultra-high rates of heart disease and attacks. In the USA, it is our number one killer. But in other cultures where they rarely eat meat but rely upon plants for the bulk of their food, the incident of heart disease and attacks are practically non-existent.
I got on the Ketogenic diet primarily because it was indicated in a small study that it could help with Parkinson's symptoms, and there was indication in some petri dish studies that it could slow the progression of Parkinson's. So I gave it a try. As I noted in my last post on Parkinson's and the Ketogenic diet, I had not experience any noticeable improvement in symptoms since being on it. And while it might slow the progression of the disease, how much and will it work on humans? We simply don't know yet. But I was sticking with it in the hopes it would and plus my wife was successfully losing weight on it so I had no real reason to go off it.
Dr. Greger did convince me that giving the plant-based diet a try to see if it would help with my symptoms was worthwhile. So for the past two weeks, I've gone off the ketogenic diet and am now on a plant-based diet. I'm hoping to determine before my DBS surgery takes place, which will change the baseline significantly, whether this diet can help or not. I'll try and report back to you before the surgery and use that time to provide a baseline of symptoms in order to evaluate how much the DBS surgery helps me.
If you want to check out his site, it is entertaining, informative, and most everything is backed by scientific studies. It's worth your time to visit and watch some of his over 1000 videos on various subjects. The URL is: http://www.nutritionfacts.org
I have more to talk about, but I need to get some sleep. I'm sure there are studies out there that show getting a good night's sleep is key to helping minimize symptoms too, and I'm not very good at getting a full night's sleep.
So, until next time, live your life to the fullest, cause it's the only one you've got!
PS: Forgive any typos. I've not had a chance to edit this yet. I'll be back to do that later.
This action on his part was due to a comment I had made earlier in the visit. We had been discussing my toenail fungus. It is pretty much controlled, but I have to keep treating it and I've tried several treatments, some helped more than others. He suggested I try putting coconut oil on it. He said it has antibiotic and anti-fungal properties. (I have to say, it has done better so far than anything else.)
Upon hearing his suggestion, I blurted out that I have plenty of coconut oil because I use it in my bullet-proof coffee every morning. I had also told his assistant earlier that I was on a ketogenic diet. He immediately indicated that using coconut oil is one of the worst foods I could eat. He didn't expound on that and I didn't want to get into a debate, realizing that he was obviously in the camp that saturated fats of any kind were bad for you.
So when he gave me this website to look at, I was pretty sure it was going to tell me that coconut oil was evil and that the ketogenic diet was not a good diet for long-term health. I would not be disappointed.
While I felt I had researched this topic on saturated fats, especially as it relates to coconut oil, I was open to find out if there was information I didn't know. So once I came home, I started researching what Dr. Greger had to say on the subject. The bottom line is I certainly did run across new information on this topic that has forced me to reevaluate my conclusions. I had seen other people try to make the case that saturated fats were intrinsically bad, but they rarely dealt with the arguments for coconut oil being good for you put forth by their advocates other than to say that they're wrong, don't listen to them.
Instead, Dr. Greger took a different approach. He reads and studies all the hundreds of studies on nutrition put out in medical journals each year, and uses them to address all sorts of nutrition topics. As it relates to coconut oil, he demonstrated that the study or two advocates for coconut oil use are taken out of context (the Pacific island study where residents ate a lot of coconut and were healthy also ate a healthy plant-based diet which would help offset the negative effects of the saturated oil, as well as the fact they were eating coconuts, not drinking coconut oil, so the fiber in the coconuts also aided in processing the saturated fats), and in studies where populations did eat a lot of coconut but did not have a plant-based diet, there were high instances of heart disease and plague in the arteries. Also not often mentioned is that coconut oil is only around 10% MCT (medium-chain triglycerides) which is a main reason given for using it because it is said to convert immediately to energy your body can use. But there is still much of the troublesome short-chain triglycerides, much more than there are MCTs.
I have to admit, he was pretty convincing. I'm not totally convinced that coconut oil and saturated fats are bad in and of themselves. Mainly because of Dr. Greger's own admission that the diet of those islanders was good enough to offset the negative effects of coconut's high saturated fat content. He is drawing a conclusion here that appears logical based upon some assumptions. What if instead of a healthy diet offsetting the effects of saturated fats, it actually aids the body in processing and using those fats in a healthy manner?
I also don't think he's taking into account the fact that a ketogenic diet is using that fat to generate energy for the body. So even saturated fats serve the purpose of providing fuel for the body instead of having nothing else to do but play hide-n-seek in the arteries. When a body is not in ketosis (the state of burning fat for energy instead of carbs), that excess fat can be a big problem. It isn't needed for energy, so your body stores it in case it is needed, and a bunch of it floats around in your blood, causing problems like high cholesterol, forming plaque on artery walls, leading to hardening of the arteries and heart disease.
This appears to be what has happened with me. I've been on a ketogenic diet since February of this year. My intake of coconut oil really wasn't that big. Mainly amounted to around two tablespoons of it in my morning coffee. Occasionally I'd cook with it. I ate a lot more saturated fats by using heavy whipping cream and eating meat. I'm sure I also had a "healthy" serving of cholesterol each day, as I often ate anywhere from 3 to 8 eggs a day.
Despite all that saturated fat and evil cholesterol, my blood pressure readings before going on the ketogenic diet were on the high side. Not in red alert status, but it wasn't ideal. It had come down a good bit by the time I started the keto diet. However, based upon what Dr. Greger said, and no doubt what my doctor would think, all the fat I was eating to keep my weight up should have been clogging my arteries and causing a higher blood pressure readings. Here is the readings over a period of more than two years done by my neurologist.
12/29/2015 124/78
02/22/2016 148/81
11/14/2016 118/72
04/03/2017 108/61
08/24/2017 105/73
As you can see, at the end of 2015 and beginning of 2016 I had a couple of high readings. Possible the one in Feb. 2016 was a fluke or something. By Nov., however it was down to a respectable 118/72. Not ideal according to Dr. Greger, which would be closer to 110/60 (or pretty close to that, I don't recall for sure).
Yet the two readings my neurologist took after being on the ketogenic diet, both show blood pressure readings well within the doctor's ideal range. My blood pressure improved while on the ketogenic diet in the same way that he claims it would on a plant-based diet (or more commonly known as vegan, but I guess he's trying not to scare anyone from taking a serious look at it).
Of course, my experience doesn't prove anything. But I believe the reason it did improve as it would on a plant-based diet is because: one, I was avoiding processed foods for the most part and eating healthy foods, and the fat wasn't sitting around in my body, but was being burned almost as fast as I could shove it in my mouth. I had to eat around 3000 calories a day to keep my weight from falling below 145 lbs. So as Dr. Greger would say, there needs to be more studies done on that so we can know whether saturated fats are processed in a positive manner in the body that is in ketosis. Maybe he knows of one or two.
But obviously if you're not in ketosis, not eating healthy--eating lots of processed foods, sugar, eating out a lot--sucking in saturated fats like I was could be deadly.
That said, he made a convincing case for using a plant-based diet, all backed by scientific studies, to help with many conditions, including Parkinson's Disease. Western cultures that have a high meat content tend to have ultra-high rates of heart disease and attacks. In the USA, it is our number one killer. But in other cultures where they rarely eat meat but rely upon plants for the bulk of their food, the incident of heart disease and attacks are practically non-existent.
I got on the Ketogenic diet primarily because it was indicated in a small study that it could help with Parkinson's symptoms, and there was indication in some petri dish studies that it could slow the progression of Parkinson's. So I gave it a try. As I noted in my last post on Parkinson's and the Ketogenic diet, I had not experience any noticeable improvement in symptoms since being on it. And while it might slow the progression of the disease, how much and will it work on humans? We simply don't know yet. But I was sticking with it in the hopes it would and plus my wife was successfully losing weight on it so I had no real reason to go off it.
Dr. Greger did convince me that giving the plant-based diet a try to see if it would help with my symptoms was worthwhile. So for the past two weeks, I've gone off the ketogenic diet and am now on a plant-based diet. I'm hoping to determine before my DBS surgery takes place, which will change the baseline significantly, whether this diet can help or not. I'll try and report back to you before the surgery and use that time to provide a baseline of symptoms in order to evaluate how much the DBS surgery helps me.
If you want to check out his site, it is entertaining, informative, and most everything is backed by scientific studies. It's worth your time to visit and watch some of his over 1000 videos on various subjects. The URL is: http://www.nutritionfacts.org
I have more to talk about, but I need to get some sleep. I'm sure there are studies out there that show getting a good night's sleep is key to helping minimize symptoms too, and I'm not very good at getting a full night's sleep.
So, until next time, live your life to the fullest, cause it's the only one you've got!
PS: Forgive any typos. I've not had a chance to edit this yet. I'll be back to do that later.
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