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BigRingGrinder

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BigRingGrinder last won the day on July 16 2015

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About BigRingGrinder

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    Advanced Member

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  • Gender
    Male
  • Location
    Southern California
  • Interests
    Running, biking, swimming, scuba diving, flying.

    Making noise with an electric guitar.

    Playing Poker--I've got a great poker face and an ever better bluff with tremors and fumbling fingers that others misread as a sign of excitement from a strong poker hand.

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  1. 18664290_1368249299908411_70467234674248

    1. BigRingGrinder

      BigRingGrinder

      Parkinson's gave me an inch, I took 38-miles.

  2. https://parkinsonsnewstoday.com/2017/06/26/10-tips-common-sense-approach-life-chronic-illness/ Thanks, Linda. Didn't know about this resource before.
  3. Bucket list BEGINS!

    Sounds like a great trip. I especially like your technique for working around Parkinson's with the conversion van and rest stops. Spit in Parkinson's eye and LIVE, explore, dream, discover. Even if it is only for a few hours at a time. Got to look into getting me one of those vans, now. A rolling bed and rest stop. Pure genius.
  4. Bucket list BEGINS!

    Oh, and have fun with that Bucket List, New Normal and husband.
  5. Hand tremor when nervous, anyone else?

    Nice observation, miracleseeker. I can see how that might occur. From what I understand, when the human body (mind) detects stress, the brain signals the adrenaline glands to release the hormones adrenaline and cortisol into the blood stream to enable the fight or flight response in the body. I didn't feel "stressed" or "anxious," but my MDS keeps talking about how Parkinson's can break those system so that it either can't adjust the amount of hormones to dump (and just dumps at maximum rate), or the system is broken so that it is always full-on--regardless of the threat or need. Okay, my MDS said that those systems were broken in me and constantly turned full on. My response was something like: "how is that possible? I didn't feel stressed," and beside, the "fight or flight response" couldn't be constantly "on" because I never feel the need to "fly" away from danger; rather, instead I always feel the constant readiness to stay and "fight" regardless of whether a threat exists. [Doctors have got no sense of humor.] Maybe the max adrenaline dump is also why I now have such an awesome bluff in poker. Regardless of my cards, I am so pumped with adrenaline at getting out, having fun, sitting down and playing with friends or strangers, with talking with friends and strangers, that my tremors are misinterpreted by the other players as a sign that I am excited; and that I am excited because I have a real strong hand. So there is at least one cool aspect to Parkinson's. Naturally, one downside is a recognition that compulsion is a constant companion of Parkinson's and the only way I know to control or regulate compulsion is to avoid situations where compulsion could cause damage if it took over my reasoning. Some of the many such situations I've observed where compulsion can cause me damage are those that involve spending money--like playing poker. A nastier side effect for me is the inevitable crash when the adrenaline and cortisol shut off. Takes my body many days to recover. Yup, the tremors can certainly be a barometer of happiness; and I am also slowly learning that they can be a caution sign for me to check for stressors and calm the mind and body.
  6. Bucket list BEGINS!

    I give up on computers. I dragged this picture from Facebook into the "Insert Other Media," "Insert From URL" button. Didn't work by copying and pasting the URL into the insert URL box, only by dragging and dropping the picture. Totally confusing.
  7. Bucket list BEGINS!

  8. Bucket list BEGINS!

    Posted a picture to a "Status Update" a couple of weeks ago by using the Insert Other Media button and a URL to a Facebook page. (I have no idea where the "Status Updates" go.) Got the Insert Other Media button it to work once tonight in this regular forum post, but accidentally deleted the picture and now can't do it again.
  9. Bucket list BEGINS!

    Thought I had a solution, but it won't hold.
  10. Hand tremor when nervous, anyone else?

    Yes. Parkinson's seems to thrive on stress; not just the bad forms that can leave me feeling stressed, but the good forms that can excite, too. Almost any amount of stress can increase my symptoms dramatically. Never gave much thought to stress before Parkinson's. It was a part of life to be managed, controlled, and directed. And though they never felt like stressful events before Parkinson's, talking and interacting with groups now seem to produce similar results. When I closely analyze those situations, I now see what look like tiny threads of stress that I never gave much concern to previously in such routine, everyday activities. Is it the multitasking involved with listening, thinking, finding the words, pumping those words to the vocal chords, and then getting the mouth to work? I don't know. Besides Carbidopa-Levodopa (which stress seems eventually able to break through), yoga has taught me a couple of methods to help stiffle the stress responses. Supplements like L-Theanine also help me remain calmer. There are probably more accurate medical terms and excuses. Just my observations.
  11. Morning Stiffness?

    Yes. I think part of the problem is that the dose I take before going to bed at night wears off while asleep leaving me in a massively "off" state when I awake, and until the first morning dose kicks in, . . . assuming I sleep until the morning alarm. Tell your MDS. There are a few things that can help.
  12. Anyone else have this issue?

    Wow, Murray, you found some good information. While reading the pages you found, I read that hiccups are included in this condition, too. Didn't know that before. Hadn't really thought about it before. In the last couple of years, I began experiencing attacks of real violent hiccups. Like nothing I've had before or seen in others. Almost like an abdominal spams that is so strong it almost doubles me over. They really hurt. Seems the swarm can last up to about 30-minutes. Muscles get fatigued as if they've done thousands of sit-ups. Of course, never researched the cause during the episodes because I can't really do much but hope my breathing continues, and once they're gone, I get distracted with something else and forget about them. Naturally, I also forget to report them to my MDS. Now I guess I'll have to tell him. Rats. I keep hoping that somehow peoples' stories and their symptoms on this forum will demonstrate that I don't have Parkinsons' but something totally simple to fix. Like maybe I actually have a doughnut deficiency and all this will clear up if I eat more doughnuts. Instead, all I read are stories exactly like mine. [Still not going to give up the fantasy of escaping, and will keep looking a key.]
  13. Anyone else have this issue?

    Take the same medications. Had somewhat similar experiences before C/L, but not since. I've heard some people call it dystonia, dystonia storm or Myoclonus dystonia. I don't know, just glad they're gone. They would really cause me bad muscle fatigue.
  14. New MDS and Med changes.

    AQHA270: Since Parkinson’s strike us all a bit different and we’re all at different stages of this dance, what works for one person might not work for another. Also, since I'm not a medical doctor, don't know medicine, the human body or Parkinson's, take what I say as worth a grain of salt and run it by your MDS before attempting anything. Currently, I’m take 25/250 mg C/L, 5x day, and though my MDS talks about finding this place of Xanadu called “optimum dose,” I’m thinking "optimum" probably doesn’t mean perfect. Started medications in December 2011 and along the way, I have picked up the following drugs and supplements that though they may have a different primary purpose, one side effect was that in some noticeable way they also helped extend the duration of the C/L on-time; helped bridge the gap between C/L doses; helped smoothen out fluctuations in C/L; helped reduced the distance of the fall during off-times; helped reduced the slope of the C/L off-time cliff; helped slow the off-time fall; or, helped reduced the cognitive graying out and other cognitive issues caused by Parkinson’s. None of these products are perfect, but every small bit helps me so immensely. [My descriptions above and below are not very medically proper and one-day I might take the time to research the proper words, in the meantime, these are the best words I’ve found to try and describe this in-describable beast.] 1) Amantadine (100 mg, 3x day). 2) Entacapone (200 mg with each dose of C/L). 3) L-Theanine (200 mg with each dose of C/L). 4) Istradefylline (40mg) 1x day (a trial medicine, not yet FDA approved for use by those of us in the U.S.). 5) Previously tried Azilect but gave it up because observed no benefit. 6) A New C/L Manufacturer or Probiotics? Back in March 2017, my pharmacy switched the manufacturer of the generic Sinemet (C/L) I use from Mayne Pharma to Sun Pharma. The pharmacy didn’t tell me and I didn’t notice it at first. About the same time a friend who was getting over a case of pneumonia, gave bought me a one-month supply of probiotics he was using. (OTC with eight of the standard strains.) He said that in the past when he’d had an illness, he found that taking these probiotics helped “re-charge” his body and he recover faster. I was (am) skeptical and didn’t understand how they could help because I didn’t think I had a stomach problem. Furthermore, I can’t really find much information about probiotics other than manufacture sales pitches that claim probiotics cure every unspecified problem imaginable (if that is possible); and, scientific journals concluding that while probiotics might be of benefit, currently little is known about the millions of types of probiotics and how they work, but the authors hold out hope that in 20-years, further research will pin-pointed which probiotic is beneficial, the bodily system on which it works, and a dosing/frequency formulation. About a week after the switch in the C/L manufacturer and starting the probiotics I noticed that my C/L was suddenly stronger, lasted longer and was more effective. It seemed Parkinson’s had released its grip a bit and I had been taking advantage of every inch. I was more active. It was like I was on some sort of super C/L. It didn’t wear off as quickly with activity, my mind was clearer. [I really should spend the time to write all the changes down, but I hate Parkinson’s and hate thinking about it.] It wasn’t a sudden change. It didn’t occur on any one-day that I could point to. I noticed it sort of in hind sight one day when it struck me that I’d been doing activities of a duration or intensity, that usually wore me out and from which it usually took a couple of doses of C/L before Parkinson’s was once again slightly more reigned-in. When I told my MDS in April, the a doctor who is working on a fellowship in movement disorders with my MDS, said that even though the FDA requires the drug manufacturers to use the same ingredients, the FDA does allows a variance in the quantities specified on the label of between something like five and 10 percent. So one manufacture of C/L can sell a pill labeled as a 25/250 that actually contains 10 percent less active ingredients; while another can sell the same claimed dose with 10 percent more. I had forgotten to take my old and new C/L bottles with me to the appointment as well as the paper on which I had written down the two company names, so we couldn’t determine at that time what is the case with these two manufacturers or whether the switch was the cause of the improvement. In either case, my MDS jokingly said he’d take credit for the improvement. Since that April appointment, I ran out of the probiotics. After a while I did notice (in hindsight again) that those nice benefits had quietly disappeared. I am still not sure what brought about the improvements and didn’t buy a new supply of probiotics for over one-month. A little over one-week ago I went out and bought another 30-day supply (I think this one has 10 strains) and have slowly noticed a return of those March improvements. Well, not only have I noticed, but my wife and daughter have said something has changed. P.S.: My MDS is glad I haven’t stopped fighting Parkinson’s but keeps trying to remind me that there is no cure for Parkinson’s. He then goes on to tell me to keep trying because all-in-all, western medicine still knows very little about Parkinson’s or even how the human body works. I normally wouldn't test two drugs/supplements at the same time because I can't distinguish the benefits (if any) one from the other. 7) Sleep. Yes, I know, “good-luck with that.” But when I do get a good night’s sleep, I do so much better then next day. Or is it that when I don’t get a good night’s sleep, I do so much worse? 10) I just realized, there is no way for me to talk just one tiny aspect of Parkinson’s, because Parkinson’s is so invasive to just about every system in the body. 9) Glad you found an MDS (and staff) you like. Parkinson’s has taught me that not all physicians are equal. 10) Anyway, hope this was somewhat helpful. Everyone here is going to have different experiences, stories and lists. (It’s a Parkinson’s thing.) Sorry for rambling on so long. (It’s a Parkinson’s thing.) Hope I didn’t get distracted and leave out too much information. (I usually do, and when I do, again, it’s a Parkinson’s thing.) Hope I read your question correctly and gave a response somewhat along the lines you were seeking. (I don’t always, and again, it’s a Parkinson’s thing.) 11) One last thought: I try not to dwell too much on anxiety (or other Parkinson’s induced problems). Seems that the smallest, most insignificant thing can bring on a massively unproportionate level of anxiety in me that I if I continue to think about will just grow to such an extent that it takes C/L days to clear. Rather, what I try to do is tell myself that the anxiety (or what ever) is a Parkinson’s thing. I make a mental note that it is occurring and then tell myself that it’s Parkinson’s. My hope is that this will give my brain permission to put the Parkinson’s thing aside and let me move on with life. (I name it; Put it aside; and, Forget about it.) It doesn’t really fix issues like muscle fatigue, pain, stiffness, tremors, dystonias, etc., but it helps my brain understand (or reminds it) what is happening, and that now it knows (remembers) the cause, it can move on. // Cheers.
  15. Vivid dreams?

    (1) Can't really say whether I've noticed a difference in vivid dreams (and RBD) with or without C/L. I do know they occurred before, just not sure when they started. Seems as if they've been around most of my life, just never thought much of them or bothered to analyze and classify my sleep and dream states pre-dx. Okay, now my mind has gotten more on track and I can point to at least one difference starting sometime around five-years before dx and medication--those dreams become more frequent, stronger and I've come to dislike (hate?) them more and more each time! That is the one change of which I am very aware. (2) Plus one to Beau's Mom's body pillow suggestion. I'm still trying to re-learn how to sleep, and body pillows have helped. (3) Enough of this bad talk and thinking bad thoughts. Really wanted to pop in, New Normal, and wish the two of you a grand time on your adventures. [Post-C/L, I have notice that I am now easily excited and happy for people when they get out and explore life.] Cheers!
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