After one week from, that place where the Devil shines, with my new DBS settings going crazy on me, I'm finally at a normal place since yesterday, returning to semi-normal, or about as close as I believe I ever could.
ON A CONTINUAL, CONSISTENT, BASIS! 24/7. ALL THE TIME!!
Sorry for yelling, but I'm so happy to be here!
On with today's video, so you can see for yourself!
Just a quick, late night update. Still recovering. Felt better today. Would have been a much better day save for several hours of the day spent on the toilet. Measures taken. Looking forward to a better day tomorrow.
We've had more than one person say, "If there is anything we can do . . . "
Well, there is a thing or two you can do.
One simple one is soon, as soon as hopefully this coming Monday, I hope to be ready to go to the gym. I don't know that I'll be able to participate in any of my normal classes and Pickle Ball yet, but I do want to get in my walking time and visit with you all. That said, I don't know if I'll be permitted or able to drive at that point. I may and I may not. So if someone is able to pick me up and deliver me there, and bring me back around noon or so, I would be appreciative.
And of course there is one other thing you can do. We do have insurance, but co-pays and such will be in the hundreds. I know my co-pay for the hospital for both last week and this week will be around $490. Previous to last week, I've accumulated $69.72 that I have not already paid for in one form or fashion. That totals around $700.00 that I'm aware of currently. I have yet to get the bill for the surgeon for last week or this week, yet, much less whoever else has their hands in the pot. As I get new info, I'll post it here.
We are not going to easily be able to pay this, and Lenita has lost some money in her business by having her employees do all the work on the days she's had to drive me to visits and be there for surgeries. So any help any of you could give us toward that end will be most appreciated.
How to contribute? Two ways.
1. Hand us a check made out to "Rick Copple" and I'll deposit it into a special account I've set up for that purpose.
or . . .
2. If you aren't near enough to do that or just want to do it more conveniently, you can click on http://cash.me/$RLCopple and you can donate to me directly. Note: this will incur no service fees, completely free on both ends other than what your debit or credit card might charge you. But on my end, no fees are taken out, I get all the money you send.
Okay, I lied a bit. But just a bit. There is a third way you can donate, but you'll be buying something from us in the process, and it might take us a little longer to get the money.
One such opportunity is to go to Lenita's Norwex store and make an order from there. Great cleaning towels that will knock your socks off, cleaning products, and other personal items. To do that, visit https://lenitacopple.norwex.biz/
A quick text post to let you all know that today I've spent some time recuperating like a good, little patient.
We woke up, had breakfast, had a service (read the 6th hour since it was just past noon at that point along with the scripture reading for today, then discussed how we have mercy as God has mercy on us, especially on the internet), then had lunch. We then went to the park to get in my walking exercise like the physical therapist told us to. We walked one mile from one park to another on the trail. Sat for a while, then walked back. So a total of two miles together.
Then we enjoyed some down time at home, resting while we checked on Facebook and the like. I watched the new videos on ZIN Now that had just came out.
Decided I'm going to start working my Zumba Gold songs back into my daily routine since they are low impact, starting tomorrow (Monday). I'm doing fine.
One concern is infections with this procedure. The last few years I've been pretty hard to get infected with anything. No colds or fevers of any kind. So far, so good. The site looks like it is healing well.
The only other thing is inflammation around where the leads were placed. That can take a few days to go down to normal. It is part of the reason I'm a little slow right now. As that heals, I'll speed up some (though I've never been all that fast to begin with). But I'm thinking the Zumba will help with that too due to its neuroplacisity.
That's about it for now. Until next time. Yeeee Ha!
Surgery has been delayed for 2 hours. I'll be getting out pretty late so it will probably be pass the time the email will to go out. I'll let you know what happens as soon as we know something, thanks.
My first day's blog is here on this DBS journey of mine. The video is below.
I apologize for the sound quality. My headphones had run out of power so I had to use the computer's built in mic, which isn't real great. But turn your volumes up to maximum and I think most of the time I'm understandable. Sorry for those times I'm not.
I wanted to post a quick blog entry. One, to welcome the new people who signed up to the blog for my journey in DBS coming up next 3 weeks. Two, to test out writing a blog post on my phone since I may be doing that in the hospital Wednesday night.
So welcome to the new subscribers to the blog. Should be interesting to see what happens in the next three weeks with my DBS. I hope you find the post informative and helpful for your own life. I know my life is going to change in the next week or two.
So hang on, keep your arms and legs in the cart as we take off starting tomorrow night, my first post. It'll be a video post and you'll get to see what I look like bald. Stay tuned.
In this video, about 35 minutes long, I detail where I'm at both in the medications I'm taking and the symptoms I currently have which I expect to show improvement when my DBS surgery takes place, gets turned on, and programmed. Below the video, I've included the notes of my discussion if you'd rather read about the topic (though I'm not reading it word for word, as will be obvious). If you have any questions, feel free to leave them in the comment section. Thank you.
Next Wednesday is my surgery for Deep Brain Stimulation (DBS) that I’ve been talking about recently. Right now, it seems so surreal that this is about to happen. But happening it is! Hopefully I’ll come out of this a new man, for the better. Otherwise there’s not much point in doing it, is there?
As I’ve mentioned before, I’m planning on doing a daily entry on this blog about my experiences with the surgery and my recovery. Most, if not all, will be video blogs, so you can see the results. I’m planning to start those this coming Monday night, 9/25, and go until at least to 10/10 when I have my first programming session with my neurologist. I’ll go longer if I feel there is more yet to discover about the process. Likewise, on some of those days when I have nothing new to report, I may opt to put up a quick text-based post to that effect so that you’ll know I didn’t forget.
The only day I might find it hard to get a post up is on the day of the surgery. I’ll be in ICU that evening. I have no idea what kind of shape I’ll be in, but if at all possible, I will at least do a text-based post letting everyone know how it went as soon as I’m able to grab and use my phone. If possible, I’ll do a live Facebook feed from my room and get that on the blog once done.
Consequently, in order to establish a baseline from which to compare, I wanted to take some time to list out currently what medications I’m on and what symptoms I’ve experiencing recently that I hope this procedure will alleviate. Then we’ll have an idea how much I’ve been able to reduce my medications and how much my symptoms have improved (or not) over the course of these next 3 weeks.
So, onto the details!
Levodopa/Carbodopa, 250/25 mg, 4x/day (Main source of additional dopamine)
Pramipexole (Mirapax), 0,5 mg, 3x/day (A dopamine agonist, prompts dopamine production in the brain)
Was taking Selegiline, 5 mg, 2x/day (a MAO-B inhibitor, which allows the dopamine to stick around longer before being taken out with the trash), but discontinued it as it can react with general anesthesia. Plus, I had to be off medication on the day of the surgery, and that one takes around 2 weeks to get out of one’s system. I may not have fully experienced the increase in symptoms yet that stopping this medicine is likely to create. It shouldn’t be drastic, but it does help them.
I’m only going to mention those symptoms that DBS is expected to have an impact. Where it won’t have an impact is in non-motor symptoms, like constipation, voice volume, drooling, lack of smelling ability, sinus drainage, etc., etc., etc.
In general, one of the issues that DBS is expected to resolve is what I would call the symptomatic roller coaster. I generally take the main medicine (levodopa/carbodopa) 4x/day, about 4 hours apart: normally at 8am, 12 noon, 4pm, and 8pm. Once I go to sleep, I don’t need the medication as tremors and arm stiffness take a nap with me. In fact, dopamine can build up some while sleeping, which is why many have their best part of the day in the morning.
During each dose, right now, the cycle goes something like this. 1st hour, waiting for the medication to kick in. For me at this stage, that takes around an hour. Until then, I’m usually dealing with increased symptoms. During hours 2 and 3, I feel my most “normal”. That’s a relative term. It doesn’t mean there are no symptoms, only that they are having minimal impact on me. By the time the third hour is drawing to a close, dyskinesia usually kicks in. This is a side-effect of the medication which causes involuntary movements by causing repetitive contractions of certain muscle groups. In my case it is a wearing off dyskinesia (occurs when the medication begins to lose its effectiveness) as opposed to peak dyskinesia (when the medication is at its strongest). I used to get the latter, but for around a year and a half, it has been the former.
During the 4th hour, the dyskinesia declines and my symptoms increase. It used to be somewhat drastic before I resumed taking the TUCDA, but since then my symptoms during this period are not as strong, but I can still tell a definite shift into more easily tremoring and stiffness in my left arm.
So what are those symptoms?
This was the first symptom I had for PD back in 2012. My muscles clench/tighten uncontrollably in my left arm/hand. When it gets bad, it is painful. When it is moderate, I notice its effects mostly on how smoothly I can move my fingers doing things like typing and a drum roll on a surface. Right now, my medications control that pretty well. Even in my more off-times (first and fourth hours), I’m able to type, just not very fast. My right arm, thankfully, hasn’t been afflicted with this symptom, so far. It is only in my left arm. Back in November of 2014, I went 5 days with no medications. By the 5th day, my left arm was useless, I couldn’t move my fingers much at all, and the pain was starting to get bad. That’s when I ended that little experiment. Now I doubt it would take more than two days to get that bad. I may find out with this surgery, as I’m expected to take my last dose of meds on Tuesday morning, and won’t be able to resume them until after the surgery, sometime late afternoon on Wednesday; so I’ll be off meds for around 1.5 – 1.75 days.
This is the symptom most people associate with Parkinson’s, though there are people with Parkinson’s who don’t have any tremors. For me, a slight tremor was noticeable late 2012, progressed to a bigger problem during 2013, and started showing up in my right arm during 2014. Since then, my right arm has more of a problem with tremors than my left arm. If I’m carrying something like a cup of tea, I’ll usually carry it in my left hand because my right hand can no longer be trusted to keep it from spilling.
During off periods, the tremors vary from minor to big. What usually happens to bring them out bigger is when I attempt to hold a position or something in the air. This occurs, for example, when I’m holding food to eat like a burger, or attempting to move a spoonful of something from one container to another such as mixing a recipe. It becomes very difficult for me to hold a position such as one might do in a yoga class or Tai Chi. I need to mostly be moving to keep the tremors at bay.
I think that is what amazes some people when they watch me play Pickle Ball. My hand and racket can be shaking while I’m waiting for the ball to head my way, but it doesn’t seem to affect my ability to swing or hit an accurate shot. It becomes more of a problem for me, however, when I’m not taking enough medication and my off times are much worse, resulting in slower reactions, smaller movements, less aggressiveness. That’s when I have to very intentionally force myself to swing big and move fast, but I’m fighting my body at that point to do it.
But this is why Parkinson’s tremors are known as resting tremors. That is, when your arms and hands are involved in actively doing something, the tremors (unless they’ve grown to the point they overpower you) are minimal to non-existent. It’s when your arms are still or attempting to hold a position, that the tremors most fully happen. It is the opposite of people with essential tremors. Resting, their hand is still. Try to write, and the tremors kick in.
But even when my medication is fully active and helping me to feel normal, if I tried to hold a Tai Chi position, it wouldn’t be long before I’d be shaking like a leaf in the wind. So one way I’ll know if DBS is helping is whether or not I will be able to hold a position without shaking.
Overall, my gait isn’t too bad for someone five years into this disease. Part of that is that I started a little earlier than most. People, as a rule, who start showing signs of Parkinson’s early in life, like in their 30s & 40s, or earlier, progress much slower. For many of them, they don’t even get to my stage of PD for several years. Someone who started in their 60s or 70s, however, will tend to progress much faster. So I’m kind of in the middle of that scale. Most PD patients start in their 60s or later.
But I certainly think by now my gait would be more of an issue than it is if it wasn’t for all the exercise I do. Especially Zumba, which helps me to do big movements in an intensive manner. Before I started exercising, my walking was very plodding and I had a bit of a limp. Now I usually look pretty normal when I walk unless my medication are in a significant off-time. As a matter of fact, though I can’t prove it, I expect if I hadn’t been exercising these last 2.5 years, I’d probably be in stage 3 by now, when I would experience freezing and at a much greater chance of falling.
That said, there is room for improvement. If DBS can reduce or eliminate my off times or their intensity, I won’t be walking like Frankenstein at certain times of the day.
Like gait, my balance has been affected, but it is not as bad as it would be, thanks to exercise. But I can tell it isn’t as good as it was before PD. When I dry off from a shower, I’ve always stood on one leg while I dried off the other down to the foot. Since getting PD, that has become progressively harder. But I consider it both a measure on how my balance is doing as well as practice in training my muscles to keep my balance. So if I’m more able to stand on one leg while drying off the other after this surgery, I will know it’s helping that symptom.
When my medication is in an off state, I tend to stoop forward. My head wants to bend down. It can take a lot of effort to raise my head up when that happens. The time I notice this most often is when brushing my teeth at night. Usually by the time I do that, the last dose of the day has already worn off. It can be a struggle to keep my head pointed forward enough so that the toothpaste and saliva stay in my mouth. If I can reduce my medications enough thanks to DBS, I shouldn’t have that problem.
This isn’t a symptom of PD, as I described earlier, but a side-effect of the medications I’m taking to deal with the PD symptoms. But it is my expectation and hope that I’ll either be able to totally get off my medications or at least greatly reduce the amount I take, which would result in not getting enough of it to cause dyskinesia. That alone would be a great blessing. It will be like staying in the sweet spot all day instead of 6-8 hours out of each day. Get me off this roller coaster!
Those are the main symptoms I’m expecting DBS to “fix” at least for the next few years. It doesn’t slow the train down any, but will hopefully deal with the symptoms more effectively than my medication are currently able to do, so that I can have a few more years of productive life.
Received a call from my neurosurgeon today that he is switching to the new machine for the Deep Brain Stimulation leads insertion surgery on 9/27.
You may recall from previous posts that the neurosurgeon had told me that the hospital was getting in a relatively new DBS machine that would not require the fiducial rods that they would normally put in on a "standard" frameless DBS procedure.
The usual way DBS is done is through screwing in rods around the parameter of the skull (these are actually screwed into the skull using holes they drill into the bone). These rods are then attached to a stationary frame so that the patient cannot move their head. This creates a singular reference point for the computer to help guide the lead into the brain and ensure it gets to the right spot.
The frameless DBS, which is relatively new, has five rods screwed into the top part of the skull bone. These fiducial rods provide the reference points for the computer to accurately track the brain despite any movements of the patient's head. Then a wire lead feeder is screwed onto the skull over the hole the surgeon will create to gain access to the brain. The surgeon can use the motorized feed attached to the head to feed the lead into the brain, which moves with the patient's head. This procedure does away with needing to immobilize the patient's head, so is more comfortable, and requires fewer rods being implanted into the skull. My neurosurgeon is one of six certified to teach this method to other surgeons, and is the type of DBS surgery I was scheduled to have in less than two weeks.
This new machine the surgeon has available--he received it the week of our initial consultation toward the end of August--he told me at the time, he might use it on me if he was satisfied with its accuracy. Apparently he is satisfied with it, because his office called me today to tell me they were going to do the surgery with this new, fancy piece of equipment.
I don't fully understand how it operates, but it does away with needing the fiduciary rods screwed into the skull. I believe it has something to do with imaging the head like an MRI does, to track the head's movements and relay that to the computer so it has a steady image of the brain for the surgeon's guide in placing the leads.
How do I feel about it?
Well, on one hand, it means there are five less holes in my skull: only the two entry points (both at the top of the head about an inch or two from the center as I understand it) for the lead wires, and the three screws to secure the lead-feeder to my head for each entry hole. So now it will be down to 2 entry holes and six screws penetrating my skull bone, and my head will still be able to move around during the procedure. So fewer things screwed into my head is a good thing.
There is also sort of an excitement of being one of the first, if not the first, to have this new technology used on me, at least by this doctor. I got the impression from him that there are only two or three other places in the world using this technology. So it is a kind of privilege to be able to use the most up-to-date technology. I'm also hoping he'll tell me that he's found it even more accurate in hitting their targets than the previous methods. That would be a definite plus.
That said, I have two main concerns. This one isn't big, more psychological than anything. As I stated in my title, I'm sort of a guinea pig for him. That means he may not be totally comfortable in using the machine, or there may be unforeseen issues arise related to it that he wouldn't have with a procedure he's intimately familiar with from having done it hundreds of times on a wide variety of patients. I'm sure he would not use it on me if he was at all unsure of the results. He seemed particularly proud of his success record and I know he doesn't want to mess that up. So I don't think this is a big issue or concern, but I feel it does raise the risk level up a bit, as a result. It's the nature of guinea pig status, I guess.
The other concern is whether insurance will still cover this. I believe it is an approved procedure, and it is not radically different from the process of the other procedure, just different in how it gets done. I'm sure they've filed for pre-approval and all. I just have this nightmare scenario after it is done getting a $20,000 bill that insurance wouldn't cover. So it makes me a little nervous.
Other than that, this is good news, I believe. I feel real confident about the skill of my neurosurgeon and my neurologist. I believe I'm in good hands. I'll be glad to get through this, and really happy if it provides the benefits everyone says it does.
I will still be going in on 9/26 to get a CT scan done, but it is all in the afternoon so I won't have to go in as early as originally planned.
Yesterday, I went to the hospital to get an extensive MRI done in preparation for my DBS surgery on the 27th. Although it was outpatient, they did the whole nine yards down to carting me on a bed through the halls.
In this video, I relate my experiences of the event. I'm afraid, though, that the video itself isn't very good. The audio is clear, however. I'm still trying to figure this YouTube live stream thing out.
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.
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.
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.
I decided it would be much quicker to type this out, as my fingers seem to be doing fine at the moment and it will be quicker, I hope. Plus, good to have this info in print rather said in a video blog.
Plans are going full steam ahead on getting Deep Brain Stimulation surgery done. Received and email from my neurosurgeon today detailing out the dates, times, places and instructions for each piece of the steps to get this done. Here's a summary of my DBS schedule.
On 9/12, Tuesday, I go in for an MRI at St. David's Medical Center on 32nd street in Austin, TX. If I recall correctly, this is a 3-4 hour procedure. Because they need my head to stay still all that time so they can get an accurate map of my brain, I will be taking a forced nap via general anesthesia. This will be the first time in my life to be put to sleep with anesthesia, believe it or not. So we'll find out whether I can handle it well. At least I won't be bored laying in a loud tube for 3+ hours trying to stay perfectly still.
On 9/26, Tuesday, I go in to have the Fuducial placements screwed into my skull. It's an outpatient event at North Austin Medical Center. The Fuducials will provide reference points to the computer, no matter which way I move my head, that in conjunction with the MRI info from next week, will enable the surgeon to accurately track where the leads are in my brain. As I explained in my previous vblog, this step might not happen if the surgeon is happy with the accuracy of his new million dollar toy that combines an MRI while placing the leads, so it won't need these rods.
On 9/27, Wednesday, I go back to the same place to have the leads placed in my brain. I'll be admitted to the hospital and stay overnight, then released the next day assuming all has gone well.
Then on 10/4, Wednesday, I'll go in for outpatient surgery to install the battery, connect it to the leads, and turn me on!
I believe it is on 10/10 I have my appointment with my neurologist (MDS) to fine-tune the programming to get the most benefit with the least side-effects. That fine-tuning process can take months. But hopefully at that point, I will have been able to greatly reduce my med dosages or get off of them completely.
My plan is to use this blog as "information central" if you want to follow my progress and get up-to-date information as to how it all plays out. In fact, I'm planning on doing a daily post on here, mostly via vblog, from 9/25 through my recovery, at least until a day or two after my programming visit on 10/10. These will be short ones, just to relate to interested parties what I'm experiencing both in improvements and any other relevant information I think might be of interest.
So, if you're interested, be sure to subscribe to this blog by RSS feed or email (at the end of this page), so you'll get each entry I make.
I recently went live on YouTube (for the first time) to update everyone about new information concerning my DBS (deep brain stimulation) surgery. I discussed what DBS is, and the process I'll experience having it done.
Below are the three embedded videos. There are three of them, because the feed was interrupted. I didn't notice the that had happened, so when I picked back up again, a whole middle section was missing. I did the third video to fill in what was missing.
Hopefully I'll be able to avoid multiple files in future vblogs.
Meanwhile, here is a summary of the results when I visited my neurosurgeon, neurologist, and as of today, my local doctor who needs to clear my heart as healthy enough for surgery.
Meeting with the neurosurgeon last Monday, I decided I wanted to do this, and the following dates are set:
The week of September 11--final date has yet to be determined--I'll be going in to have an extensive MRI done in order to identify the target spot(s) in my brain that will be most effective for me.
Tuesday, September 26, they will install the fiduciary rods onto my skull. If I remember correctly, there are five of them. They act as reference points between the computer and my moving head so the lead that will be inserted can be accurately tracked. This step may not need to be done if--as I discuss in the video--he is able to verify the accuracy of the new machine to his satisfaction before this date. Otherwise, I'll get about five rods screwed onto my skull. I'll return home, I believe, though I"m unsure how I'm supposed to sleep with rods sticking out of my head like a mutated Martian. I'm sure I'll figure it out.
Wednesday, September 27, they will install the leads into the brain. This will be the big one. You can't say, "At least it's not brain surgery," because that's exactly what this is. I understand it will take around 3 to 4 hours.
Wednesday, October 4, they will put in the battery and connect it to the leads and turn it on.
Tuesday, Oct. 10, I'll visit my neurologist to begin the process of programming the electrical pulses in order to obtain the most benefit with the fewest side-effects. There is likely going to be a six month process of fine-tuning it. But we're hoping by this date, my current medications will be either greatly reduced or, ideally, totally get off my medications.
This week, I saw my general practitioner for my heart to be cleared as healthy for surgery. I believe there was nothing in the EKG that would be an issue. I just had my blood drawn today, so still waiting to see how those lab tests turn out. But I'm not expecting any problems.
Here are the videos I did last week describing in more detail about what I'll be going through. Thanks for reading.
Realizing I'd forgot to talk last time about a different diet that I've been doing since mid-January, the Ketogenic Diet, I did this follow up to my last video. I discuss what the diet is and does, how it is expected to help slow down the progression of Parkinson's, and how I've done on it since January.
A common symptom of Parkinson's is depression. There are two types of depression resulting from PD.
One, brain chemicals get out of balance due to PD's effects on brain functions. Frequently, this is one of the, if not the first, symptoms a PD patient will experience. It can also appear down the line as the disease progresses. Doctors will often prescribe anti-depressants if this is the case, or use other means to normalize the functioning of the brain. This isn't a depression due to circumstances, but is something the patient can't easily control. It certainly compounds any negative circumstances to make them seem even worse.
Two, the destruction of a planned future and grieving that loss. One of the stages in the grieving process is depression. Needless to say, plans for the retirement years are trashed. I envisioned myself cranking out 2-3 books a year well into my 80s, and my wife and I had a dream to travel the country with a travel trailer in tow, staying wherever for however long we wished. All that is unlikely to happen now. At least as how I planned it. As that truth dawns upon a Parkinson's patient, and instead of the happy retirement years one is faced with increasing pain, disability, dependency upon others, and a loss of independence at an earlier age than expected.
Coming to grips with that reality often results in loss of hope. A fellow Parkinson's sufferer recently commented, "How do you make any plans for the rest of your life?" You know you can't win this fight, so the conclusion often is to give up now. Sit in front of a TV and wait for the inevitable doom to descend upon you. The prognosis is grim, and so are you. It is an easy outlook to sink into and never finish the grieving process to arrive at acceptance so you can move forward, because you think there is no forward to move toward.
However, that mindset is a trap. As tempting as it may be to make depression a way of life, here are the reasons why you shouldn't.
1. Realize PD may require some big adjustments to the remaining years of life, but there should be no real difference as to how one approaches that life than one did pre-PD.
At first this may sound silly, if not offensive to someone struggling with debilitating PD symptoms. If so, you didn't read the above statement carefully. I didn't say there is no difference in how one's life will be lived out, but in how one approaches the living of one's remaining years.
You see, the raw truth is all of us are going to die. We will all depart this existence one way or another. The only differences are when and how that will happen. Prior to PD, we may not have thought about it much, but any of us could be gone tomorrow. Some reading this blog only have hours or days to live because there is a drunk driver on the road with your name on him.
Yet, we all tend to plan for the ideal: living into old age and all the things we're going to do during that time. But we rarely giving passing thought to the fact that we could die today, tomorrow, or next month. So when PD forces us (or any chronic, progressive disease, especially those without a cure) to face that the ideal view of your retirement years will never pan out as you had thought, instead of continuing the same approach as pre-PD, we give up. Instead of finding out what we can do, we focus on what we can not or will not be able to do. So we stop doing long before we need to.
There is a frequent prayer that many monks use before going to sleep: in essence that God be with them if they should die in their sleep. Even as kids, many of us prayed the prayer, "Now I lay me down to sleep . . . and if I should die before I awake, I pray the Lord my soul to take."
If we approached PD-life as we did our life before PD, we might lose some goals, might modify others, but also find new dreams that we would have never found. We'd find out what we can and want to do instead of giving up on life.
You may not be there yet. We all go through some depression and loss of hope and it is a natural part of the grieving process. But the problem is getting stuck there. The problem is surrendering to an unfulfilling life, what is left of it. The problem is never arriving at acceptance, adjusting your future plans to fit the new circumstances, and moving forward.
To do that, at some point we need to exit living in victim mode, and approach life by looking to the future, reduced though it may be.
2. You can create new dreams to fill the void left by PD.
Yes, PD is a dream destroyer. However, it is also a dream creator.
My own example will suffice to illustrate. If you've followed my blog, you may know this, but I'll summarize. Prior to PD, I was going to be one of those authors writing 2 or more books a year. I'd spend my retirement years doing something I enjoyed and it would provide some retirement income to boot.
Then a different major life-crisis hit and that dream was put on a shelf temporarily. Before I could pull it back off that shelf, PD hit. My typing speed was cut in half. Worse, I found it difficult to be motivated to write. On top of that, I could no longer spend the amount of time writing that I did when I was going strong because I'd neglected some important issues and people to do that, and I could no longer go that route.
Of course none of that means I won't continue to write. (Hey, I'm doing that now!) It just means I'm not going to put out near the volume I intended and my "writing career" will end earlier than it would have otherwise. So I have to adjust. I need to prioritize what to write because I won't be able to do it all. (I'm still working on the fourth book in a series for about five years when before it took me a month to write one.)
But the interesting thing is, I now have new dreams I'm excited about, thanks to PD. Once I looked for what I could do to slow down this PD train, I discovered that to date only cardio exercise has proven to do so in clinical trials. And the best type of cardio exercise for PD is dance. That led me to start participating in Zumba classes in Feb. 2015. This past January, 2017, I ended up becoming a licensed instructor in Zumba and Zumba Gold because I had a desire to help others in my situation as I've been helped.
For my whole life, I didn't care for dancing. I avoided it. I'd resist efforts to be pulled into it. Even just three years ago, if you'd told me I'd be a Zumba instructor in three years, I would have thought you were crazy. Without PD, I would have never had the motivation to join that first Zumba class. I'd still be sitting at my desk, weighing a lot more, much more physically unfit, and not enjoying the benefits of dancing, both physically and mentally.
So yes, once one gets past depression and starts actively deciding what they can and want to do with the rest of their life, there are new dreams that even something like PD will lead you to. But you'll never find them by living in victim mode.
3. There is something you can do to slow down the inevitable.
As mentioned above, cardio exercise has been clinically proven to slow PD's progression. Not stop it, but slow it down. I can say the past two years of exercising, while I've noticed some progression (thus needing to adjust my medications), it has not been at the pace of the first three years. The end result is it means I'll be able to squeeze some more productive time out of this life.
It is interesting to me (and I used to be there, so I know) that we'll search for the magic pill to fix this disease. We'll try this or that supplement, or treatment that promises to slow, reverse, and/or cure PD. We'll spend a lot of time seeking that easy fix. Look back on this blog and you'll see all my notes on what supplements I've taken, what I've tried. And I still take most of them.
While I have my reasons for taking them, and maybe I'll do a post on that subject soon, and I believe they're helping, I know they won't slow or stop PD in its tracks. Meanwhile, the only thing that has been proven in clinical trials to slow PD progression is frequently dismissed.
Because of my exercise routine--Zumba 4x a week; Aqua Zumba, Body Step, and Body Pump once a week; and about 11 hours of Pickle Ball a week; plus I now teach a Zumba class--my resting heart rate is in the upper 40s and I've regained a lot of muscle lost to PD during those first 3 years, enabling better bladder control and fewer small movements.
What is the best exercise for you? The one you'll enjoy doing and look forward to. For me it was Zumba. For you it may be something else.
4. Our focus should turn from "poor O' me" to being concerned for family and friends who may become caregivers in the future. Ask, "What can I do to make it easier on them?"
For me, a primary motivation for doing Zumba to slow this disease down is my wife. Someday, she'll be my caregiver, should we both live that long. If I sit on a couch watching TV or piddling on my computer all day, it means she'll have to take on that burden much sooner. Likewise, without exercise, I'm much more likely to develop dementia, which would make it that much harder for her.
I'm doing this for her primarily. I know at some point I'll lose this battle with PD and she'll have to do a lot of things for me. The longer I can delay that day is a win in my column because it means the more quality time she'll have with me; the less she'll have to struggle with the hardships of being a caretaker.
5. Getting Parkinson's doesn't mean life is over. It only means you know one way life will end should you avoid all the other conditions and events that could kill you.
The real question once you've worked through the grieving over lost dreams and depression is "What new dreams and goals can I still work for and achieve before PD makes it physically impossible to accomplish them?" Answer that question, and you'll discover PD doesn't destroy having dreams and goals for the rest of your life, it means trading in some dreams for new ones and making the most of the time you do have left.
We're all going to die of something and it could happen at any time. That doesn't stop us from planning on living life now and into the future. That shouldn't change even if the plans change.
Go on, live your life. Don't let Parkinson's win by giving up.
I'm way overdue on updating blog followers how me and Parkinson's are getting along lately. I apologize for the delay. My focus over the last few months on getting licensed in Zumba Gold® and getting a class going in addition to the rest of life hasn't given me much time for this blog.
But I thought I'd try something new on the video blog front. I've been making videos and uploading them to YouTube. With advent of live streaming, I thought it would be cool to do my video blog that way so people would have opportunity to ask questions and interact in real time.
I investigated YouTube's live streaming, but it is more complicated than Facebook's. You have to download a third-party app to encode it and send it to YouTube, etc., etc., etc. They are working on building it into the YouTube app, but isn't out yet. With Facebook, you simply click a link and in seconds you're on the air.
The big downsides to using FB for this is, one, it will change the location of my PD videos, which are all on YT. Two, I'm unsure how well the FB video will embed in this blog. But, after wasting the morning hours trying to find and set up YouTube's livestream, I gave up and opted to give FB livestream a try. So we'll see how this works. Maybe once YT simplifies their livestream, I'll give that a go and evaluate.
At any rate, check out my first live-streaming video blog post. Don't know how this will work, but it may require you to log in to FB. If you're one of those few people without an FB account and you can't see it because of that, let me know in the comments and I'll see if I can find a solution for you.
It is that time of year again: Parkinson's Awareness Month (April). As I've done for the past few years, I've written a poem for the occasion. However, this one is a bit different in that it doesn't address Parkinson's Disease directly, but could apply to any number of tragic happenings and conditions that threaten our future and dreams, leaving many hopeless and feeling helpless.
Yet based on my own experience dealing with such events and diagnosis these past six years, I think there is a different perspective to absorb. With that thought in mind, I present my 2017 Parkinson's Awareness Month poem for your digestion.
by R. L. Copple
I checked the map,
I picked my goal,
I planed my path,
I was ready to roll.
The road was wide
providing the room
to fulfill the desires
sucking me into gloom.
The way was easy
so I struggled less
and enjoyed addictive
pleasures, I confess.
Then tragic detours
force-dumped my rare
bucket-list of hopes
into a grave of despair.
Leaving my only route
a narrow, climbing path:
rocky, exhausting, austere—
drenched in grief’s wrath.
Among peaks and valleys—
hardened by sun, droughts,
freezing ice and snow—
I clawed through my doubts.
Yet somewhere within,
I found the inner drive
to put one foot forward
rather than let it slide.
I’m not going to lie,
the trip was a pain,
the struggle: surreal—
it drove me insane.
But when I crested a peak,
panting from thirst,
more dreams were born
as they did at the first.
Dreams more precious
despite all the loss;
they became more valuable
due to the high cost.
Now I know that my
destiny is given wings
when my dreams die
and are no longer kings.
I allowed divine passion
to gestate fresh life,
birthing new dreams—
carved by His knife.