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stump

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Everything posted by stump

  1. This article states that the man in question had PD, and due to that was at greater risk of that infection. I'm unaware of anything about PD per se that makes us more vulnerable to infectious disease. I'm also unaware of any of the more common PD meds compromising the immune system. Am I missing something, or is that article full of bull with respect to PD? Of course, I sure hope that man recovers quickly and without permanent damage to his limbs. http://www.foxnews.com/health/2018/07/10/nj-dad-may-lose-all-4-limbs-after-contracting-bacterial-infection-while-crabbing.amp.html
  2. stump

    PD and immune system response

    Do you know what the blood test usually costs? With my high deductible, even if it is "covered", I'm likely to be out of pocket for a test like that. And I'm not exactly flush with cash.
  3. stump

    PD and immune system response

    Interesting. I am usually the least likely between my wife and kids and I to get sick. Though given DaveN's response I wonder if I should ask to get tested for IgX levels.
  4. stump

    Dropping Things

    Until I started on the meds I dropped things quite a bit. With meds that is significantly reduced, though not eliminated. I think it is directly related to the bradykinesia. You feel something starting to slip and the fingers just won't react fast enough to the command to grip tighter so the object just falls from the hand.
  5. So, one of my bucket list items is catching and landing a 100+lbs halibut from my kayak. Last several years I've been frustrated by such things as new babies and grad school keeping me from having the time during Washington State's absurdly short halibut season to get out and fish for them. We typically get around 3-4 days a year to chase halibut. I was all set to head out to Neah Bay right up until yesterday when the forecast (which hasn't changed since then) was calling for 5-8ft surf and 7-8ft swells. Being in a kayak, for where I intended to fish, it's a beach launch through the surf zone to get out to the fishing grounds. Even if I was willing to brave 7-8ft swells (and that's beyond my comfort zone) that surf height would almost guarantee I'd get flipped on the way back in. I've never gotten hurt doing that (yet at least), but I have broken equipment. So that's a no-go. Grrr. Just have to hope those conditions keep enough power boats in port to leave enough catch quota remaining for them open it up again next week. Meantime, since I can't go to the coast I'm going to go to my church's annual men's retreat. It will be a great chance to spend quality time with my best friend and many other good men from the church. Bonus that it's on the south end of Whidbey Island, and there's a couple bays just 15 minutes from the retreat location that are supposed to be good for halibut fishing. So, I'm bringing the kayak and fishing gear, and early in the morning on Saturday (halibut is open Thursday and Saturday this week) I'll head out there for a couple/three hours and see if I can luck into one. If not I may try again Saturday evening if time permits. I'll also try fishing for ling cod on Friday after work on my way to the retreat, and possibly on Sunday after the retreat wraps up. Might as well have a go. Never know if I'll get to fish halibut next week until Tuesday or Wednesday anyway. Other trips planned for the summer include a bunch of crabbing from the kayaks with my family, and once the salmon are in I'll try to get out a few times a week before or after work for a couple hours each time. Plus there's the Oregon Rockfish Classic (kayak fishing tournament) I've gone to the last several years that will be July 15 this year. Later in the summer I'll head up to scout a new area for deer hunting, and since there's a decent chance for a bear I'll bring my rifle and bear tag along. That spot will involve 14 miles of paddling my kayak plus a 1.5 mile portage in the middle of the paddle, and a 3 mile hike with 4000ft of elevation gain (each way). Hopefully I'll get to take each of the 2 older kids camping and trout fishing at some point this summer too. Then there is deer hunting in mid-October, and elk hunting in early November. I'll try to update this thread throughout the summer with pictures and stories. Hope I can be of some inspiration to other PWP's out there, and if not, I hope you all at least enjoy the reports.
  6. stump

    Summer adventure season starting

    India trip has been moved up to the last week of September. Should be 4 days working in Pune, plus a day trip to Bangalore for other work related meetings. Hoping my DW can come out for a week after the work part is done. If so we will likely go to New Delhi and Agra (Taj Mahal), plus one of the tea regions. Either before or after the India portion looks like I'll also stop over to spend a few days at the European division which has offices in the Netherlands and Belgium. Applied for my passport yesterday. Been over 8 years since it expired, so high time to replace it. I've tossed my hat in the ring for a job at our India location. Low odds I'd get it, but it would be the step up I have trying to get for a long time. It would be a 3 year stint if I get it. I'd get enough trips back here that I can probably just keep my current MDS for most things. But even if not, that's problem #32. Problem #1 is getting the position to start with.
  7. stump

    Welcome to the club

    It's what I need. It's supposed to be equivalent to 1.5 tabs of regular Sinemet per dose. What are on is like half a tab of regular Sinemet. So more like you're on a very low dose than me being on a high dose. Some people need more than others for good symptom control. I know, because I did an experiment, that less than 3 capsules at 4x a day just doesn't give adequate control. If you do get adequate control, for now, with 1 at 3x a day, stick with it. Over time you'll begin to need more. And yes, my Azilect experience was pretty bad.
  8. stump

    Welcome to the club

    By the time you notice the motor symptoms of PD you've already lost 60-70% of the dopamine producing neurons. So it's entirely possible, and probable, that your PD actually started 10-15 years ago and it just took until now for you to realize it. For years before my diagnosis something just felt, ... off. I couldn't ever put my finger on it, and I never really said much as I didn't want anyone, including my wife, starting to think I was a hypocondriac. Literally the day after I started on Sinemet that went away. Would have been the same day but I started on an evening dose, so I was asleep not long after taking it.
  9. stump

    Welcome to the club

    Yep. That's one downside. Meds are pretty short acting. It may take a while to dial it in for maximum benefit. You may find you need a higher dose, or more doses per day, or both. I started on 1.5 tabs of instant release Sinemet 3x per day. Backed off the mid-day dose to 1 tablet to combat sleepiness. When that sleepiness came back I switched to Rytary 95. Tried to get by on 2 capsules 3x per day instead of the recommended equivalent (for my age/weight/gender) dose of 3 at 3x per day. That didn't work out so well, so I went to 3-2-3 capsules per dose but found I really did need 3 per dose, even at midday. Then as things progressed my MDS upped it to 3 capsules 4x per day. So far that schedule seems to be working fine.
  10. stump

    Welcome to the club

    ^^^ This. Take a look at my Summer Adventure thread. PD sucks, but it is manageable if you commit to still going out and doing awesome things. I won't stop fishing, hunting, kayaking (sometimes all 3 simultaneously), traveling, playing with my kids, accomplishing new things at work, and so on, until I literally physicaly can't anymore.
  11. stump

    Welcome to the club

    Have to admit I tried to figure out if my MDS had somehow slipped a placebo in place of the real meds. And the effect was almost instantaneous for me too, which made me think it was in my mind. I sooooo wanted to believe I didn't really have PD. But, it was for real. Sorry man. But I can say that life really does go on, and with the meds it's way better than without.
  12. stump

    Nightly bladder problems

    No words of wisdom. But I did help my MDS with a research project looking for the causes of overactive bladders. I was a control subject (so diagnosed with PD, but no bladder issues), which is actually one of the hardest categories to get enough subjects. So, I've done what I can to help with your problems.
  13. stump

    dyskinesia free l-dopa

    I might suggest at least trying 25/100. See how you do. If you can reduce the dose from, day 2 tabs to 1.5 or something that might do more to reduce dyskinesia than you think. Or not. But if you don't try you won't know for sure.
  14. Sense of smell issues are common but hardly universal. Other than that, basically what DaveN said. Also, PD is not a rose garden, but it's not a death sentence either. Relax if you can, and try not to worry about it. Especially in younger patients it tends to move slow. You've likely got years before it becomes a huge deal in your life, and in the meantime is readily managed with exercise, and if necessary meds. And that assumes you do have PD, which given everything else you have going on is probably not particularly likely.
  15. UPDRS total score: 20 (out of 199 possible points) Mentation, Behaviour & Mood: 3 (out of 16 possible points) ADL: 5 (out of 52 possible points) Motor examination: 10 (out of 108 possible points) Complications: 2 (out of 23 possible points) Meds definitely help a lot. Some scores would be worse even on Sinimet IR rather than Rytary.
  16. stump

    10 good years???

    Depending on the individual such proclamations like "you have X amount of good time left" can become a self fulfilling prophecy. The person starts to expect a certain rate of progression and lo and behold they get it. Kind of a reverse placebo effect. I much prefer a doctor tell me the truth, and if that is a particular limited time with good quality of life, then tell me that. But with PD, especially at the beginning it's much better to just say that it could be a few years or decades or never before PD robs enough quality of life to call the good years over. Everyone is different in terms of symptoms, how they progress, how much a given symptom affects their perception of severity, reactions to meds, and so on. Maybe after your MDS has been observing you for 5+ years they'll be able to make a decent prediction for the future.
  17. stump

    Seeking hiking/backpacking partner (TN)

    Wish I was local, and also no longer working. Sounds like a grand idea.
  18. stump

    Missing Meals?

    My biggest issue with food is just general grumpiness when I miss a meal. I am fairly sensitive to protein around medication time. So if meal time gets delayed I have to choose between food and meds. If I choose food then of course my symptoms get worse. So usually, if I think it won't be too high a risk of homicide, I choose meds and then wait the hour until food is an option. Haven't noticed the quality of what I eat making much of a difference to my PD. Other aspects of life, yes. And yes, stress definitely makes a big difference. But it depends heavily on the type of stress as to how my symptoms react. Some will provoke an anxiety attack, other stressors will set off my tremors, and still others will get my foot cramping/dystonia or other things.
  19. stump

    Summer adventure season starting

    Great to hear LAD. I'm getting started on the real planning for the India trip. Looks like mid-October will be it. Well, unless a great job opportunity comes up and I leave my current employer. Looks, sadly, like we won't be able to afford to have DW come out there too. I'll probably take a few days to tourist around but not the full week I'd have taken if she was able to join me. I'll at least hit one tea region, and likely will go to Agra to see the Taj Mahal. Peace - I did get the meat chickens in late March. Was going to process them in mid-June but they grew faster than I thought, but as fast as advertised. So I've moved up their trip to freezer camp to Memorial Day. I had to cull one a few weeks ago due to an apparent injury. Best tasting chicken I've ever had. Looking forward to seeing how good they taste but at twice the size. thanks
  20. stump

    Watch your teeth!

    Nope. He quit bringing the subject up about the time I posted that. My guess is that the wear had stabilized so he saw no need. But, next time I see him I'll try to remember to ask about that.
  21. stump

    Pain in hip

    Second this recommendation. Could be a "sports hernia" which isn't a hernia but an injury to the inguinal ligament. Or any of a lot of other possible issues.
  22. While I appreciate Patriot's sentiment, I think there is a factor of this disease that causes anxiety and depression independent of our emotional reaction to the diagnosis and the effects of the disease on our daily life. I never in my life had any issue with anxiety before PD came along. Things that I could do before that, while stressful and physically tiring, didn't result in any anxiety now do. So associating issues with anxiety and depression only with our outlook on having PD is probably not accurate for at least some of us. I know that is the case for me at least. Not sure if that applies to the OP, but sounds like it might be a partial explanation.
  23. Wish I had some words of wisdom for you. But my experience has not included depression (that I know of). And anxiety mostly has been discreet episodes with identifiable triggers. I will say that anxiety has been far less of a problem if I keep up on my levodopa doses. Comparing the before/after when my MDS upped my meds from 3 to 4 times a day my anxiety level dropped noticably with the extra meds. This last week I could feel anxiety creeping up but that was more my clue to not engage in the activity (tree falling - hence my handle) that is my main trigger for a little while.
  24. stump

    Coffee, tea or alcohol?

    PD is theorized to start in the gut. But nobody knows for certain. And regular alcohol consumption will only "ruin" your gut if you are consuming fairly vast quantities. While vast quantities of alcohol should be avoided, regardless of PD status, light to moderate consumption is of no issue based on any data I've ever seen.
  25. stump

    Just Deny Everything

    You are not obligated to tell them anything about your health status, and generally it's illegal for them to ask. Choosing to disclose a PD diagnosis is a tricky decision. It is very situationally dependant. For some, especially those working for small employers, or the government (whether local, state, or federal) it can be advantageous to disclose. Often there are quotas (whether admitted to or not) in government work for having a certain percentage of people with disabilities on the payroll. And many small employers are more like a family than a corporation so they will bend over backwards to help you cope. But some, like me, work for a large corporation, and as good as they are (for most things) I don't trust HR, or senior management, and farther than I can throw them. So I keep my mouth shut about PD at work. Granted, meds keep me well controlled for now. If that wasn't the case I might feel compelled to disclose rather than risk being accused of being drunk or on illegal drugs. But, exceptions to the above abound, so take careful stock of your particular situation before you make a decision either way on disclosure.
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