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RickCopple

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RickCopple last won the day on September 25 2017

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About RickCopple

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    Writing (published author)

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  1. Thank you for your response, Dr. Okun. Interestingly, the frequency of my difficulty finding the right words has become better in the last few months. IOW, I seem to have much fewer instances of it happening. From your description that this is more due to surgery than the stimulation, it would make sense that it could improve as brain swelling goes down. At any rate, what you said about having a soft voice is also a problem. But not much more than pre-DBS. I figured that was a PD symptom not affected by DBS. Sometimes it feels like I'm trying to talk through cobwebs in my throat. lol. On the meds issue, I"ve been off of them since about five to six months ago when I had this turned on. The only other PD symptom that it doesn't seem to help is drooling. It isn't constant, but occasionally some escapes my mouth. I have been to a speech therapist and I do need to do more of the throat exercises she gave me to do that I'm sure would help. Anyway, thought you might appreciate the report, being this is about 5 months since I originally posted this.
  2. RickCopple

    Just Had DBS - Some Questions

    Thank you, Dr. Okun, for your reply. I'm now about almost 6 months out from my surgery. Things have improved a good big. I do have a lower setting for my DBS when I do play Pickle Ball and do Zumba, and a higher "normal" setting. Over the past 3 - 4 months, as the brain swelling has gone down, my balance and gait have significantly improved. When I do Zumba, that's when I notice it most. A little difficulty in controlling the movements of my feet. But over the past few months that has become better and better. I'm hoping by the time 9 months to a year is past, I will feel pretty normal most of the time. We'll see, but already I'm very glad as I feel pretty much normal most of the time instead of about 4 hours out of a day. So I'd suggest the above issues I was experiencing about a month after the surgery have been resolved.
  3. RickCopple

    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!
  4. Hi Doctors, As my title suggest, I've recently had bilateral STN DBS (frameless and fudiciless) surgery on 9/29, then battery placement on 10/4 and turned on 10/10. So right now about a month from getting it turned on. My Evaluation so far: tremors, works great on most all settings that have been programmed in so far. I'm off all medications, and doing really well. My surgeon was Dr. Patel in Austin, TX. My MSD who is doing the programming is Dr. Peckham in Round Rock, TX (just north of Austin). Other, even seemingly non-motor functions, have improved as well. My PD face and monotone voice is gone, people see more expression in my face and voice than before. Constipation is better. And I've even started up recently a window washing division of my wife's housekeeping company now that I have "steady hands". The negatives, so far, are predicable. Slight memory issues (like I have a bad case of brain ADHD or something). I have trouble focusing enough on things to completion, and organizing my thoughts well enough to not forget things, and I often have problems coming out with the right words from my mouth. I have always been a slow thinker, especially once PD hit, but now it is like I'm wired, and my brain can't keep up with itself. Plus, I have had balance issues. This has been complicated by a cataract n my left eye which was diagnosed about two weeks ago. This led to a prescription change in my left eye prior to cataract, which required a substantial lens adjustment in that eye. Once I put on my glasses, I've fallen around 5 or 6 times. Nothing major happened, bruised rear, skinned area on my hips, etc. After some research, I deduced that I needed to take care of that cataract so am going in for replacement of that lens in the next couple of weeks are so. Then I'll evaluate the balance issues from there. That said, I do know walking and gait issues are a DBS result. Before getting the new glasses, I felt that what I had was, my best but still inadequate description, antsiness. I do Zumba regularly as well as play pickle ball, and in both activities, especially Zumba, I found I had trouble controlling my movements well enough. At one program setting, I actually appeared to be "drunk" when I walked around. But even at better settings, lower settings, that don't make me walk that way, I can't do Zumba very well. I'm having to do it from a chair, and I've started teaching my Gold class again, entirely from a chair. For that it seems I need to have the settings low and take some levelopa just to do chair effectively. I've had three programming sessions this month, with the next one scheduled for 11/15, next Wednesday. The setting I'm on currently is the two middle spots on the Metatronix DBS leads on, but alternating. She said sometimes that helps with my "antsiness" issues or balance issues. Personally, I can't tell a difference between that and program C, which is the two middle spots on the leads on all the time. I have it turned up enough that it keeps my tremors at bay, but no higher. (Currently at 1.9 v on my left side, and 2.5 v on my right side--Of the body, not the brain.) I think it is the combination of the cataracts and the DBS that has led to my current series of falls. I am hopeful that once the cataract situation has been resolved, there will be no more falls. However, this has led me to believe that the real issue behind my initial description of "antsiness" was more my body's attempt to adjust for the slight balance issues created when doing more aggressive type moves as required in Zumba and Pickle Ball. The adjustments to normal walking are so minimal as to not be noticeable except when turned up high. That's where I'm at currently. I'm hopeful that with further programming we'll be able to reduce this down even more. So after that long introduction, I have some questions for you. 1. I read on another pinned thread about models of the Metatronix DBS being able to be programmed for current as opposed to voltage. You listed the names of devices that have that ability. However, all I have is a model #: 37601. Is that one of them? If so, under what situations would it be helpful, if any, to program according to current? I'm sure my MDS is aware of that option, if it is part of the device, and would have or planning on using it if she believed it could be of any help in my situation, but I'd like to know for myself if and when it might be considered. 2. I understand that with any one person, things can change and be different. I'm a bit conflicted though, about what to do about this balance issue. Do I find a setting I think will work for tremors and my body will adjust to the balance issues over time? Is that even possible? Or do I actively work to find the settings that will give me a balance between the least balance issues with the best PD symptom control? Or is another possibility a combination of levodopa with a lower DBS setting? I guess what I'm asking is will my body potentially, gradually adjust to this new setting over time? I know it also might not, but is it possible that it could? Thank you for your reply.
  5. I've just had DBS, I think If I remember correctly, STN dbs. I do know it is bilateral. And I can report, at least in my case, having a harder time coming up with the "right word" than I had prior to DBS. I am currently off all meds at this point, and as far as PD symptoms, it has worked great. So far. (about 1 month from having it turned on right now).
  6. RickCopple

    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.
  7. RickCopple

    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.
  8. RickCopple

    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.
  9. RickCopple

    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.
  10. 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
  11. 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.
  12. RickCopple

    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.
  13. RickCopple

    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!
  14. RickCopple

    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
  15. RickCopple

    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.
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