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BigRingGrinder

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BigRingGrinder last won the day on July 16 2015

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About BigRingGrinder

  • Rank
    Advanced Member

Profile Information

  • 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.

Recent Profile Visitors

491 profile views
  1. Bipolar and parkinsons

    Parkinson's and Bipolar Disorder? Interesting combination. I've always wanted to tell my Movement Disorder Specialist that the wild swings between "on" and "off" times (and even various "on" and "on" times) in Parkinson's made me feel as though my body was bipolar. So to me, sadly, Bipolar Disorder seems a perfect match for Parkinson's, especially since Parkinson's is not satisfied with just disrupting my bodily movements, but it also freely crosses over to corrupt cognitive and psychological functions. When Parkinson's turns "off" my body, it also turns "off" my brain functions. Stress and Parkinson's do not mix. Stress can flare my symptoms (movement, cognitive, physiological, or whatever else Parkinson's is jacking with at the moment) way out of proportion to the stressor. Doctors tell us to cut the stress from our lives, but those words are so much easier to say than do because stress can come from so many sources, some of which are good (vacations, lunch with friends). Yoga has given me some tools to help cope with stress and so has eliminating news (no news radio, television, papers, magazines, discussions). Also getting outside for a walk really helps me. Sun or rain, just getting outside and moving is such a relief. However, eliminating or minimizing stress doesn't really stop Parkinson's rampage. It just sort of limits the supply of one source of fuel. Not sure what medications or supplements you use, but L-Theanine supplements work wonders to boost and stabilize my cognitive functions. Best wishes.
  2. protein and absorption

    Noah: I take one probiotic supplement tablet with 10 acidophilus strains and 25 billion active organisms, each day. There’s little information about probiotics other than from the supplement manufacturers themselves, so read up on them first and ask your healthcare professionals about which is best for you. Here are some links I found with useful information on what to look for in a supplement: https://www.drdavidwilliams.com/how-to-choose-the-best-probiotic-supplement/ http://consumeradvisorguide.org/probiotics-supplement-review/index4.html https://www.webmd.com/digestive-disorders/tc/probiotics-topic-overview http://consumershealthreport.com/probiotic-supplements/bestprobiotics/ No, my MDS has no problems with me taking probiotics or other supplements that help. In fact, he's one of the first to recognize the limitations and inherent ignorance of "western medicine" in healthcare, and takes a sort of whole-world-healthcare approach. I took Azilect for a while. Prescribed by a general neurologist before I saw my MDS. When I met with my MDS he asked whether the Azilect helped. I said, "I can't tell if does anything." My MDS said, "that pretty common among all of my Parkinson's patients. You can stop taking it." I stopped and never noticed a change. As for orange juice, I don't take C/L with it all of the time, just in emergencies. Instead, because I need to drink lots of water each day, I drink one or two cups of water with my pills. Helps me ensure that I get my minimum required 12-to-14 cups of water each day.
  3. protein and absorption

    Almost forgot the prescription drugs: (4) Entacapone helps extend the life of my C/L doses. The C/L still wears off after about three-hours, but it's more like a slow turning rheostat knob dimming a light bulb rather than getting pushed off of a cliff. It allows me to tolerate a 3.5-hour gap between doses. The extended life makes finding a meal time that is one-hour before and one-hour after a dose of C/L easier for me. Most of the time, the extension from Entacapone is also enough to get me through the night without having to sneak a middle of the night C/L pill. (5) Amantadine also helps extend the C/L a bit, though it wasn't prescribed for that feature.
  4. protein and absorption

    From what you wrote, it appears you are taking C/L every two hours throughout the day. That is hard on meals. Not sure if my alternatives will work for you but here are a few that quickly come to mind that have helped me: (1) Probiotic supplements. They seem to allow my body to digest and absorb more of my C/L throughout the day. It's as if the C/L starts quicker, comes on stronger and lasts longer throughout the day (and night) without the bad side effects of actually taking larger doses. Takes my body a few days to notice the change after I start the probiotic routine. This was not the reason I started experimenting with probiotics, just a "side effect" I notice and can't really explain. My MDS can't fully explain it either other than to say it is possibly the result of the as-of-yet unexplored connections between the digestive system and the brain; or the probiotics are somehow helping with the digestive problems that seem inherent in Parkinson's. Either way, he wants the credit for helping me. (2) Read once where the FDA suggested that people only need 6 ounces of protein each day--probably less for people with Parkinson's whose bodies don't tolerate protein well, so like Stump suggested, (a) either load up on protein earlier in the day when there is a sufficient gap between medication cycles; or (b) eat smaller, more frequent amounts of protein throughout the day. (Five small fast meals instead of three large meals.) (3) Delay taking your 7:00 p.m. dose of C/L until 7:30 p.m. so you can eat between 6:00 and 6:30 p.m.; also, drink orange juice when you do take that post-meal dose. Even though some pharmacist came up with the name "Immediate Release," it always seems to take between 45 and 90-minutes for my doses to ramp up. Not my definition of "Immediate." Drinking orange juice with C/L seems to help me when I need "Immediate" relief by getting the pill dissolved, digested and into my system faster. With orange juice, I can usually feel my body coming back "on" in about 15-minutes. By combining orange juice with C/L, I can delay a dose by an hour, and yet get the same benefits faster than had I taken it earlier. Yes, the body still continues the "off" slide, but it would anyway during those magical 45 to 90-minutes, so I figure "no great loss."
  5. 18664290_1368249299908411_70467234674248

    1. BigRingGrinder

      BigRingGrinder

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

  6. https://parkinsonsnewstoday.com/2017/06/26/10-tips-common-sense-approach-life-chronic-illness/ Thanks, Linda. Didn't know about this resource before.
  7. 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.
  8. Bucket list BEGINS!

    Oh, and have fun with that Bucket List, New Normal and husband.
  9. 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.
  10. 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.
  11. Bucket list BEGINS!

  12. 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.
  13. Bucket list BEGINS!

    Thought I had a solution, but it won't hold.
  14. 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.
  15. 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.
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