Jump to content


  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything posted by BigRingGrinder

  1. BigRingGrinder

    Early onset PD

    Sjrcle: Yes, most of us here probably have way too much "insight" into what is going on with you and your son's predicament. I too heard the "you have a lot of the symptoms" and "but you're too young" speeches. The pre-diagnosis medical run-around is really frustrating, but on some levels it is also a bit necessary. If it will help, during my journey I visited one neurologist who tried to encourage me to be patient with the system. She told me that she herself had Lupus, and even though Lupus is a disease within her area of practice, it still took her and her colleagues over three-years to diagnosis her problems and start the proper treatment. Unlike a broken leg, neurological diseases don't come with a nice label already attached and easily read. Rather, from what I've observed, neurological disease are just a whole lot of problems (that doctors call symptoms), that could fit any one of seemingly hundreds of diseases, and the doctors have to slowly sort through each to find the proper treatment that will provide relief. I agree with Linda, LAD and Dave that when trying to rule-out a diagnosis of Parkinson's, finding a quality Movement Disorder Specialist (MDS) is critical. When trying to treat Parkinson's, finding a quality MDS is critical. Even though Parkinson's is a neurological disease, it is a neurological disease that is only taught to neurologist who pursue advanced studies specifically in movement disorders. Cheers.
  2. BigRingGrinder

    Working with Parkinson's?

    Everett: I don't know what go / no-go criteria the insurance companies use to decide whether to issue a policy to a person who is able to work, but figure that until a person becomes unable to work it can't hurt to ask. Best to actually ask the various insurance companies. And even if one should say "no," another might say "yes."
  3. BigRingGrinder

    Working with Parkinson's?

    Everett: From what I understand, a diagnosis of Parkinson's is generally not by itself a disabling diagnosis, so if you don't feel disabled, keep working as long as you can, and most of all, keep exercising! Keep moving. How realistic is it that Parkinson's symptoms won't suddenly escalate before you are ready to stop working? Not sure if anyone could say, so I would consider investigating purchasing a Private Long-Term Disability Insurance policy. It generally provides for partial salary continuation until one turns 65-years of age in the event of a disabling injury or illness. While many employers provides such an insurance policy as a job benefit, employer purchased policies generally are not as good as a policy bought privately by the individual employee. It's complicated and has to do with federal regulations of 401K retirement accounts that apply to employer purchased policies but not to employee purchased policies. A reputable insurance agent should be able to explain the pros and cons. If your symptoms do slowly increase over the years, there may be herbal supplements that could benefit you and delay the onset for the need of medications or further medical interventions. Talk with your MDS, maybe there are some supplements that if started now could even delay further symptoms or complications. Other than that, remember to always get a good night's sleep. Cheers.
  4. BigRingGrinder

    Magnesium supplement for rigidity

  5. BigRingGrinder

    Do any of you here sleep - I get little or none

    Hi, Karl: I started experimenting with 100mg (the smallest dose / pill I could find), one time per day. At the time, a friend had suggested L-Theanine to help with muscle fatigue / massive exercise intolerance, and to help build back lost muscle. Not sure how much it helped with the muscles, but what I first noticed was a disappearance of brain fog. A calm mind. A greater ability to deal with stress. I could think. I could concentrate. I could read a book, or a chapter. I could relax. My mind was clear. And I was overjoyed with those unintended benefits! Next I noticed the effects did not last all day, so I tried taking L-Theanine twice a day. That worked, but then I noticed a gap in the middle of the day, so I tried taking L-Theanine three times per day. I went through periods of disbelief a number of times where I would stop taking the L-Theanine only to have the garbage return and then go away like magic when I started taking L-Theanine again. I think it was in 2016 or 2017 while participating in a drug study that I began to notice a correlation to the timing of my C/L medications and the brain fog, so experimented with taking L-Theanine at the same time as my C/L (5x day). That helped immensely and the effects remained all day and night. At some point I found that 200mg had a greater impact than 100mg. Side effects noticed with L-Theanine? A re-emergence of motivation. L-Theanine isn't a cure all supplement, but it is sure nice to be able to walk around and look out a clear window, rather than one fogged over. To read a book. To concentrate. To walk up to a street intersection and remember to stop and look for traffic before stepping into traffic. Maximum dosage: I think I read once that 1,200mg was the recommended maximum while others reported no maximum. I would need to research that further. A doctor of Chinese medicine might be a good place to start to find that information. My dose remains 200mg, 5x day, taken at the same time as C/L. Hope this answered some of your questions. It's an on-going experiment. I do not know how it is supposed to work, I just know it works. I do not know the best timing or dose, I just notice what works with me. Cheers.
  6. BigRingGrinder

    Nightly bladder problems

    Because there could be a number of different medical issues causing your problems, I'll break down what I take for two of mine: (1) For Parkinson's effect on the bladder that caused me frequent and extremely urgent needs to urinate large volumes, and leakage, I have a prescription for Myretriq from a urologist who has a sub-specialty in Parkinson's/Movement Disorders; (2) for symptoms of benign prostatic hyperplasia, I have a prescription for Cialis 5mg for Daily Use (generic: Tadalafil that I buy from a reputable pharmacy in Canada because insurance won't cover it and prices in the U.S. are too extremely high). Talk with your MDS and urologist about which might be best for your symptoms.
  7. BigRingGrinder

    Feeling worse with Rasageline

    Jul: Yes, as with Gardener, my major medication is Sinement (Carbidopa-Levodopa). It's not perfect, but it's a start. Next came 1,000 mg of Standardized Tumeric (giving around 110 mg of Curcumin, the active ingredient) 2x day. I used to take it 3x day but after starting Probiotics last year, I experimented to see how little I could get by with and 2x a day was just about the point where my toes would not curl 10-minutes into a walk. I have tried taking it on an as-needed-basis, but it turned out I needed it pretty much all the time, so I now take it on regular basis both as a precaution and because I seem to need it all the time. So, I guess the third item would be Probiotics as they tend to boost the effectiveness of my medications. A soft cervical spine collar/brace also helps keep my head centered when the neck wants to twist. Stretching exercise (yoga and Big LSVT Big Physical Therapy) help keep the muscles pliable enough so I can use them occasionally, and that actually seems to also help ease the pain of the constant contractions enough so that the Sinemet can work and I can go to sleep. However, pre-diagnosis, exercise had stopped working for me and I had actually reached a point where I couldn't perform even minor exercises. In fact, it seemed that even minor exercising would just increase the dystonia, especially in the abdominal muscles that would just lock-up. Not a fun experience to lose the muscles needed for breathing. Looking back, exercising probably stopped working for me because I had descended too deep into the under-world of dystonia and gotten to the point where I needed the medicines (or at least the diagnosis to point me to the right medications). But in my defense, the doctors at the time (not Movement Disorder Specialists) said I was too healthy and young to have anything wrong and that "it" would go away soon. They never said what "it" was that would go away soon and that I was too young and healthy to have, and I was too far out of it to think to ask. With Sinemet I am once again able to exercise a little, and the little exercises have tremendous benefits. Oh, and I guess the last item would be Ibuprofen for the aches and pains. Before diagnosis / starting Sinemet, Ibuprofen had stopped working (or at least was too small a chisel to make much of a dent in the giant mountain of dystonia pain), but after I began Sinemet, I noticed that Ibuprofen was working again and would help reduce the pain of the muscle contractions. Pre-diagnosis drugs that proved as useless as a physician who are not Movement Disorder Specialist: muscle relaxants and morphine. Hope that helps. If anyone has any other tips, I'm always looking.
  8. BigRingGrinder

    Feeling worse with Rasageline

    Before I started treating with my Movement Disorder Specialist, my general neurologist gave me a prescription for Azilect saying something to the effect that it is a fairly common medication to treat Parkinson's. When I first visited my MDS, he asked whether the Azilect helped and I said, "no. I noticed no effect." Nor did I notice any side-effects. My MDS said that is common of what he sees in his practice, that Azilect really didn't help, so he said I could stop. Later I read on a discount pharmacy's website that the cost of Azilect without medical insurance was around $1,300 per month. I was probably paying $15 with insurance, which says to me that someone probably had a huge incentive to push the drug. As for the new symptoms you described, tell your MDS about them and ask about Dystonia. There are a few of us on here with those miserable additions to Parkinson's and what you describe sounds hauntingly familiar, including that 10-minute barrier. If your MDS confirms dystonia, there are a couple of medications and nutritional supplements that I've found to help keep the dystonias somewhat-at-bay, but nothing that totally eliminates them.
  9. BigRingGrinder

    Digestive track issues.

    Yes, once. Bad night, because after the unique faucet opening symptom you described, the stomach cramps began and I figured I needed to go lie down. However, as I walked back bed, I passed out and fell. Broke my nose, scratched up my forehead, face, chin, shoulders, arms, back of my hands and knees on the carpet. Ambulance ride to the hospital. Later surgery for the nose. I don't recall the medical term for it, but you pretty much described what I experienced and the symptoms the emergency room doctor described were apart of that condition. ER doctor said it to do with a drop in blood pressure if I remember right, though I never felt light-headed or faint. When the paramedics arrived about six-minutes later, my BP was around 48/38, or some crazy low number, and my pulse was equally low. As I recall, it was still that low even when I later arrived at the hospital. MDS said in me, it was due to Parkinson's.
  10. BigRingGrinder

    Do any of you here sleep - I get little or none

    It's a bit convoluted but here goes: Not sure what type of insomnia you have. Difficulty falling asleep or sleep maintenance problems (you fall asleep but wake up at 3:00 a.m.). I started with the inability to sleep. Was getting about 30-minutes of sleep every three or four days. Felt wonderful in the morning regardless that I did not sleep. My MDS did not think that was a good situation. He's big into sleep as a Parkinson's aid. Parkinson's medications (Carbidopa-Levodopa; Entacapone) really helped me get over the first hump--calming the body enough so that it could sleep. Supplements like L-Theanine that calm the mind (and help my body and brain counteract the side-effects of the C/L); Melatonin; sleep supplements with herbs such as Valerian, Hops and Passion Flower seem to help me more with the initial falling asleep issues but once I began falling asleep, I noticed the sleep maintenance problems. Waking every morning at 3:00 a.m. Tried Benadryl (anti-histamine with diphenhydramine) and while it probably worked the best to that point (on both types of insomnia), the bad side-effects like an inability to really wake up in the morning (felt groggy all day) made me put it away. Mybetriq: Because Parkinson's had invaded my urological system, my MDS referred me out to a urologist whose second or third subspecialty is Parkinson's. The drug seemed to work for about 10-hours before slowing leaving my system, even though the manufacture and FDA claim it works for 24-hours. Used it at night-time to try and eliminate the need to wake up at 3:00 and use the head. Another slight improvement, but not perfect and then it left me exposed most of the waking part of the day. We upped the dose to two-tablets per day (taken at the same time) and it really well. Our next step was to be Botox injections every six months but I'm still hesitating. Later I started probiotics (more about that later) and I'm back down to one tablet per day that helps not only during the waking hours but while asleep. The most help I received for sleep maintenance problems was from people with diabetes and pre-diabetes. Got on this side-note from something my MDS said in mid-2017 about a study finding that while PwP may not have diabetes or pre-diabetes, their bodies were responding to diabetic medications. So I wondered what problems people with pre-diabetes and diabetes were having, and what medications were they using that could possibly help a PwP. About this time I read that some people with pre-diabetes and diabetes would wake up at night and eat a midnight snack, after which they would fall asleep. Apparently high blood sugar or low blood sugar, I can't recall, would spike in them and wake them up at night. Not knowing why they were awake, they apparently felt the urge to eat and the food would then reduce the spike and they would fall asleep again. So I tried a midnight snack at 3:00 a.m. and it worked. My MDS is not thrilled that eating a midnight snack worked, but is happy that I will now only get sleep maintenance problems once or twice per month. (I am not pre-diabetic nor do I have diabetes.) As a midnight snack I first ate a granola bar, then one-half a granola bar, and now generally get by with two whole wheat crackers if needed. Doesn't work all of the time, but for me it has probably around 95 percent of the time. And I'm not sure if my body is re-learning how to stay asleep, but I now only have to use the snack method at most once per week. Many times if I wake at 3:00 I can get back to sleep with yoga style breathing. More recently I also noticed that sometimes it isn't even necessarily the eating of food, but the swallowing of saliva that was needed. So, I will forcibly swallow saliva about 20 times and that seems enough to put me back to sleep. I have no idea why. It's hard to make those swallows at night, especially since Parkinson's seems to want to make my mouth drool saliva through the lips, rather than send it down the back of my throat where it used to flow. Probiotics: major improvements noted with all medications and supplements (for example: marked decrease in the time it takes to get C/L into the system, operating, and it's intensity and duration), constipation and a host of other issues. This boost in medication strength seems to have helped with my sleep--or is it that the probiotics help with sleep? I don't know how they work or much about probiotics, other than they have been an immense help to me. Ultimately, not one item has totally helped me, but rather each has been a baby step forward. Now I'm addicted to sleep and really feel the impact from a good vs. bad night sleep. Okay, probably went way overboard with this explanation, and probably missed the question completely. If so, I'm sorry. I blame it on Parkinson's (and the probiotics, and the sleep that free my mind and fingers enough to write). Cheers.
  11. BigRingGrinder

    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.
  12. BigRingGrinder

    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.
  13. BigRingGrinder

    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.
  14. BigRingGrinder

    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."
  15. https://parkinsonsnewstoday.com/2017/06/26/10-tips-common-sense-approach-life-chronic-illness/ Thanks, Linda. Didn't know about this resource before.
  16. BigRingGrinder

    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.
  17. BigRingGrinder

    Bucket list BEGINS!

    Oh, and have fun with that Bucket List, New Normal and husband.
  18. BigRingGrinder

    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.
  19. BigRingGrinder

    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.
  20. BigRingGrinder

    Bucket list BEGINS!

  21. BigRingGrinder

    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.
  22. BigRingGrinder

    Bucket list BEGINS!

    Thought I had a solution, but it won't hold.
  23. BigRingGrinder

    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.
  24. BigRingGrinder

    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.
  25. BigRingGrinder

    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.]