Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by stump

  1. Interesting article on Dystonia and Opioids

    Every opioid I've had to try eventually gave me a rash. I also never found them to be remotely recreational. Between those I'm highly unlikely to ever have any addiction problems. But I'm also a bit of a wuss when it comes to pain. Since I can't take NSAIDS for a week post surgery due to requiring blood thinners for that time frame I really just need to avoid the need for surgery. For those that need them, and don't abuse them, the restrictions on opioids are a real shame.
  2. Summer adventure season starting

    I'm going to raise a batch of meat chickens partly because of that book. They're supposed to arrive Thursday next week as 2 day old chicks. Trip to freezer camp set for mid-June.
  3. 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.
  4. levodopa long release

    Cool! More options for extended/controlled/long release meds is always a good thing.
  5. Young onset PD testing

    Agree with the above responses. I'll add that not responding to levodopa doesn't rule out PD. Some significant percentage (20% IIRC) of tremor dominant PD patients never do.
  6. Questions for next Neuro visit

    A few things, though asking Dr Okun is also a great idea. The eyelid thing is unlikely to be PD related, or at least that's what my MDS said about my eyelid fluttering. Postural rather than resting tremors needs maybe a bit more of an explanation but sounds like it is not typical for PD. The heart pounding and shaking after exertion sounds more like a cardio fitness issue (the shaking in this case could be what's called enhanced physiologic tremor - something everyone is subject to with over-exertion). As to how to ask questions, I'd start by presenting everything without regard to how important you think a given issue might be and without any worries that they might mean PD or any other neurological condition. Phrase any specific questions in ways that show you want the correct answer, not just any answer. E.g. "Why is this symptom more consistent with condition X than Y?" Hope that helps.
  7. Back on sinemet

    Yes, with Sinemet you need to avoid protein for 1 hour after taking the pills, or 1.5 hours before taking them. The protein will interfere with absorption in the small portion of the small intestine where the meds can be absorbed. I found something quite small like a cookie, cracker, or anything very low protein kept nausea in check.
  8. Loss of Smell?

    Nope. Though I'm thinking my sense of smell issues might be independent of PD. My dad has a similarly poor sense of smell but hasn't developed any PD symptoms. My oldest daughter (13) also has a poor sense of smell. Might just be a family thing unconnected to PD.
  9. Bright side I guess

    I'm letting DW sleep. It's almost 3AM. Just finished cleaning up after my almost 5 year old daughter threw up for the 5th time tonight since going to bed. I guess that's one bright side to PD effects like insomnia and a poor sense of smell. Poor kid. Just hope she feels better tomorrow.
  10. Bright side I guess

    Well, Tuesday by the time I got home from work 3 people were sick. The youngest was on the mend but DW, and 2 of the other kids were sick. By bed time the last of the 4 kids started puking. Wednesday morning I did my weekly telecon with India from home. Boss called later and recommended I stay home. Just as well as by mid-morning I was sick too. Took today off too. Thankfully everyone is either back to normal, or rapidly approaching normal. That was one heck of a virus. At least it was a fast burning bug and not of those slow, lingering ones.
  11. Trying Sinemet

    Can't help on the agonists as I've actively avoided them. I'm too worried about some of their side effects, particularly sleep attacks.
  12. Trying Sinemet

    To begin with, you should have started out on half a pill 3x per day. Then over the course of 3-4 weeks worked up to a higher dose every 4-5 days or so until you got relief or reached some predetermined max (likely something around 12 pills total per day). With good communication with your doc in case there were bad side effects. It's quite possible you just never got to a sufficient dose, for you, to be therapeutic. Though, as mentioned, it's also possible you are one of the unlucky group that doesn't ever respond to Sinemet. If I were you I'd look at giving it another go, but with a slower, and longer ramp up. For some people it can take up to 2 weeks just to see any effect anyway.
  13. Trying Sinemet

    Can't speak for PatriotM, but in my case (I'm also tremor dominant) the effect was nearly instantaneous. However, I've read that there is some percentage (I want to say around 20%, but that might be way off) of tremor dominant PD patients that never respond to Sinemet. That said, some folks only see relief after titrating to a fairly high dose. What doses have you tried, and how long did you take to work up to them?
  14. Neil Diamond joins our little party

    ^^^ Yeah, that.
  15. dyskinesia free l-dopa

    It would appear that the spamming posts, at least in this thread, have been removed. Thank you, moderators!
  16. IMHO, preventing members of a group potentially more vulnerable than the general population from being taken by a snake oil salesmen is doing good for the world. You keep saying your papers are peer reviewed. I have neither the time nor inclination to go to your site and figure out where you were published or who has been on the peer review committee for those publications. But my guess is that the peer reviewers are not entirely disinterested third parties. Please, prove my hunch wrong, and I will delete this post. I will also just point out that the article in The Lancet that set off the hysteria over vaccines causing autism was peer reviewed and yet was a complete and utter fraud. Lancet very publicaly retracted the article a few years later. The "doctor" that published that paper lost his medical license over it, and I'm not positive but I think he even did jail time for the fraud. Even if he didn't go to prison he has still been expelled from the medical community.
  17. dyskinesia free l-dopa

    QFT. Thanks for saying that. I sent a similar opinion privately to the moderators.

    Been on Rytary for about a year now. I do find my protein sensitivity has been increasing. If I keep to a 1 hour after meds or 1.5 hours before meds I'm fine. Too much inside those times and I can tell. Threashold seems be around 5-7% protein. If what I'm eating inside that window is over that protein content I notice my meds are less effective.
  19. Hallusinations

    I developed hallucinations after just a few weeks on Azilect. I also became quite agitated, and had short term memory problems. Stopping that medication fixed that within a few days.
  20. Sexual dysfunction

    Super - noah is a lady. Took me a while to figure that out.
  21. Sexual dysfunction

    FTFY. Dopamine antagonists would be bad news bears for anyone with PD as those block dopamine receptors. They are commonly used as anti-psychotics. The dopamine agonists help to activate dopamine receptors and are what some of us use. Not intending to be a grammar nazi, but it's a critical distinction.
  22. Loving Parent

    First off let me just say that I don't know what you are going through since I am more in the position of your daughter than yourself. However, I still want to offer my condolences, if that's even the right word. That said, you mentioned your daughter is married. Is her husband supportive, and caring? I sure hope so, and if he is, then you should take comfort that she has a built in protector and caregiver. That is no longer your role, but his, assuming he is up to the task. Not that you can't lend support, or be there for her, but you are not the one with that as a primary responsibility. You said your daughter is big into exercise. I highly recommend you do the same for yourself. Exercise is proven to help with depression and anxiety. I will tell you that part of how my parents cope is by doing research (they're both PhD scientists), donating to Michael J Fox Foundation, and similar kinds of activities. That and they ask how I'm doing but not all the time and they don't obsess over my PD. It's there, and we talk about it, but they also respect my boundaries especially as it relates to my own kids (i.e. we don't discuss it around them - kind of like anything money related). I hope this all helps. Do consider some professional help if you can't get past the sadness and depression quickly.
  23. Pfizerstopping R&D for PD

    Since 2008 they've given about equally to Democrats and Republicans. Don't know why you're complaining other than rank partisan bias that they gave anything to the Republicans. I'm personally figuring there's a good chance the economic boom the tax cuts (and probably more importantly regulatory reductions) will cause will carry me through to retirement. Whether that's a normal retirement at 65 or an early retirement sooner than that on disability benefits. And I'm 40 right now. The Regan boom, with some dips at times, lasted until GWB and Obama came along and made another dip into the Great Recession. So that was a solid 20-25 years of mostly boom time. The economic boom will provide a lot more money for PD research. If Pfizer isn't spending on that cause someone else will.
  24. Trying Sinemet

    Bit of an update on this. I now sometimes experience nausea with Rytary but only if I haven't eaten anything yet that day. However it's not as bad as with regular C/L and if I can stand it for 20-30 minutes it goes away even if I don't eat anything. But a cookie or other carbolicious morsel will also knock it down in seconds.
  25. Coffee, tea or alcohol?

    Seemingly paradoxically some PWPs find caffeine helps with their symptoms. Though for others it may exacerbate them. If you normally drink coffee/tea and think you might be in the latter group then try going off caffeine for a month. If there's no improvement, or if your PD symptoms get worse then feel free to go back to the old habits with coffee/tea. If you don't currently drink coffee/tea then you can always experiment with a cup a day for a week and see what that does. As far as alcohol, I think the recommendation for PWPs is no different than it is for the general population. I don't notice any real effect on my PD in either direction with alcohol. Though, as SWVA noted, if you get carried away it makes the next day rough. Bottom line is, it depends on the individual as to how your PD symptoms respond to any drug, prescription or recreational. How something affects me may or may not translate very well to you. I know that's a frustrating answer, but PD isn't like a lot of other diseases that are less individually various.