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Everything posted by stump

  1. Approved for DBS

    Obviously you're perfectly able to make up your own mind. But here's my take. You've been approved, so clearly you meet the risk and severity of PD guidelines so the surgery is probably likely to do you more good than harm. However, you have some scheduling issues that are complicating matters. I would probably ask to meet with your MDS and get her take on what is going on. If they've had some turnover it might be wise to postpone for a few months to let the new people get into the swing of things. Also, that would let you discuss scheduling issues between the surgeon and your MDS and see if you can get something figured out. Plus that extra time might give your wife an opportunity to see if she can get a Tuesday off. I know you said she "can't" get that of the week off, but with enough advance notice, and really good reason (i.e. going to your BRAIN SURGERY consultation) if her boss is still unwilling to work with her I would consider alternate employment options. I don't think this is necessarily a reason to abandon DBS. But it is a reason to pause. And it might be a reason to go with a different neurosurgeon/center. You need to have faith they will be competent for the whole range of things you're going to be depending on them doing well. Everything from initial consultations, to the surgery itself, to the aftercare, to the programming. If you aren't supremely confident with that whole package then don't proceed. Even the very best surgeons have complications, and you want to know that your risk of that is as low as possible, and if you do have complications that you are in the best possible hands to mitigate those problems. Going into it with less than total faith is just asking for something to go wrong. I know it's far less serious than DBS, but I had what I thought might be a recurrent hernia. Turned out not to be that, but when I got a referral to a surgeon to get it checked out I specifically demanded a different group from the last time. Why? Although the surgery itself went well (and even the new surgeon said it looked like a good job when we reviewed the CT scan) I had no faith in that first surgeon or the group he worked with. After that last surgery they messed up my prescription paperwork not once but twice. And the only reason I think the 3rd time they got it right was my surgeon was gone for the day and the top boss of the surgery department had to fix it. That left me without any pain meds for 7+ hours and I was literally screaming in pain by the time my wife finally was able to get my prescriptions filled and get them to me. As a result of that I have zero faith in that surgeon (and, thanks to a previous mistake I won't detail right now just for time's sake, the rest of that group too).
  2. Pain Meds interaction w/PD Meds

    Thank you for that extremely thorough response. Can't say I love the answers, but that's not your fault, and I'd far rather get the complete truth than anything else. As it turns out, I'm going to avoid surgery for the time being. The issue was not a hernia after all. However, as part of the investigation they did a pelvic CT scan, and that revealed a high likelihood of another hernia on the opposite side of the first one developing at some point. So, it may be necessary to have surgery for that, but there's no telling if that's weeks or decades away. I'll hope for decades.
  3. Boy am I new to this

    Welcome to the club none of us wanted to join! Is your doc a general neurologist, or a Movement Disorder Specialist (MDS)? If you don't like the care you are getting from him then look for a different doc, and if you can find an MDS you like that is likely your best bet. For now your best bet is to stay physically fit. Exercise is the one thing proven to help slow progression. As far as drugs go, I would give the medication at least 2 weeks, maybe 3-4 weeks before you pass judgement, unless you start to experience serious problems like impulsive behaviors, or experience sleep attacks. I don't think there is any dietary regime that has legit data to back up any benefits for PD. Some people like a Mediterranean style diet. Others like Paleo, others like the See Food diet. Eat what you like in moderation and with a focus on general well being. Since you state you are veterinarian I'd only caution to make sure you are getting all the protein your body needs, and all the amino acids. It can certainly be done as a vegetarian but it's not as easy as when meat is included. For a new diagnosis I'd have expected to have a follow up after 1 month to see how things are going, and if well, then stretch it out to 4 months. Right now I'm on 6 month intervals unless something comes up that I need to be seen sooner for. FWIW, the DaTscan is not definitive in the sense that it cannot distinguish between PD and PD+ syndromes. It is not, unto itself, diagnostic for PD. Its main value is to differentiate PD from Essential Tremor and other causes of PD-like symptoms. There are toxins known (and others strongly thought) to cause PD. Pesticides are the main culprits, but the defoliant Agent Orange that was used so much in Vietnam is also one. Just because none show up in a blood test now doesn't mean there was some past exposure that set you down this path. But that blood test does mean that you can't just eliminate some current exposure to obtain relief.
  4. Pain Meds interaction w/PD Meds

    Since there's a chance I could need surgery in the near term (either a recurrent hernia or some other complication from the prior hernia surgery), I have a related question. I am allergic to most of the opioids I've tried in the past. I got a rash from Percocet and Dilaudid. I hallucinated after just 2-3 days on Viocodin. This is further complicated as I am heterozygous positive for Factor V Leiden. As such the current protocol, at least for something like hernia surgery, is 1 week of daily injections of Lovenox. That contraindicates all of the NSAID options I'm aware of. Tylenol is not particularly effective as a pain reducer for me, and hasn't been since I was a small child. My options for pain meds are running thin if I do have the surgery. And last time I was (involuntarily, and due to a screw up by the surgeon) without any pain meds for many hours after the surgery and it was about as bad on pain as it gets. Whether I'm just on the wrong end of that particular bell curve, or the surgery went wrong in some way I don't know about yet I don't know, but the assumption should be that I will need something effective at relieving pain for the first couple days after any surgery. If I do wind up needing surgery what are my best options? Some kind of antihistamine to go with an opioid? Is there an NSAID that is not also a blood thinner? Can high doses of blood thinning NSAID's moot the need for the Lovenox? Currently only taking Rytary for PD meds.
  5. traveling with pd

    I would really like to try doing a North Rim to South Rim hike. I think that is nominally a 3 day hike. Might be 4 days, not sure. But, I'd have to see how strenuous of a hike that will be, and see if everyone can hack it. My dad is pretty active, but he is 70, and he had 5 stents put in about year ago. I certainly don't want to put him in any medical danger with a hike like this. My son will be with a couple weeks +- of turning 13 when we'd do this hike, so I'll also have to mindful of his capabilities. If he just plumb can't do the hike, whether because of a lack of physical toughness or mental toughness, then that will make it unfun for the rest of us. Plus I have to be mindful of my own issues. I don't have balance problems (yet), but PD doesn't enhance one's ability to do things like that. I'm getting into progressively better physical condition, and by May/June 2018, let alone 2019, I should be in plenty good enough cardiovascular shape.
  6. Just Diagnosed

    I know you've only been on Requip for 9 days or so, but do yourself a favor and keep a written log of all symptoms, and side effects for the next several months. Include in that things like the time you went to bed, about how long it took to fall asleep, time you wake up, what you eat and when, how you feel at various points of the day, any new behaviors or changes to previous patterns, and so on. Have your husband also keep a log of his observations of you. It can sometimes take several weeks for any change (like starting a new medication) to fully stabilize, so just make the observations and unless something really freaks you out don't pass judgments until at least 3 weeks in. Just as an example, my MDS had me try Azilect right after my official diagnosis. That is an MAO-B inhibitor, not an agonist, so don't take this as any indication of what you might experience (for that matter, if your doc has you try Azilect you probably won't have this experience). This is merely an illustration of how things can take a little while to know how they'll affect you. I didn't perceive any changes until about 2 weeks after I started, but then I began to notice bad problems like confusion, short term memory problems and agitation. By 3 weeks in I was beginning to hallucinate. A few days later I told my MDS what was happening and she ordered me to stop right away. Dopamine agonists can cause some disturbing side effects in some people and if you happen to be one of those keeping that log will make it easy to identify those problems and determine if you need to try a reduced dose, try different agonist, or drop agonists altogether. Even if you never develop the bad side effects (e.g. impulsive behaviors, sleep attacks) keeping track of symptoms and what not can help a lot in terms of fine tuning doses, and timing of doses. It can be a very iterative process to get from diagnosis to stabilized medication regimes. If at any time things just aren't working for you then your doctor should be willing to make changes. That may mean going to a higher dose, going to more frequent dosing, changing medications, or other things like increasing exercise and doing specific therapies for various physical issues common with PD. Over time you may chose to maintain that log, cut back on the intensity of the logging, or stop it altogether. But, whether you stick with Requip or not, eventually you'll find that things are changing and your goalposts are not longer where they used to be. I was diagnosed 2 years ago (I was 38 at the time, so I'm 40 now). At that time I started on Sinemet and after the initial titration I ended up taking 1.5 tabs 3 times per day. After a while I was having real problems with being sleepy at around 3PM. Didn't seem to matter much if I'd had a high carb lunch or a high protein lunch, or if I'd slept well or poorly the previous night. So my doc actually had me cut back my mid-day dose to just 1 tab. That did the trick for probably a year. Then I started getting really sleepy mid-day again. So we tried changing meds to Rytary (an extended release version on Sinemet). That worked fantastically at the equivalent dose to my previous 1.5 tabs of Sinemet for about 6-7 months. However, in the last couple of months it has become obvious that my tremors are getting worse as that dose is no longer sufficient. I've rescheduled my next appointment that was originally in January for mid-November (and I might move it up again if I can depending on a completely different health issue). I expect that I'll get a new prescription for a higher dose of Rytary. How much higher I don't know, but I do know that whatever she suggests, if it takes a multi-stage titration to get there I'll likely extend the time I'm at each step of that process to see where I get back to good symptom control. And then even if there are additional steps left that she suggested I take, I won't. Until things change again and I need to. That way I'm not taking any more medication than I absolutely need to take.
  7. Vertigo after Cruise Vacation

    When I go fishing (whether charter boat or my kayak), so likely a much rougher condition than a cruise boat, it usually takes me a day or so to stop feeling like I'm rocking with the waves. Minimum a good night's sleep before that stops. I've been out a time or two since starting Rytary, and at least for me that doesn't seem to have impacted that sensation, for good or ill.
  8. traveling with pd

    Excellent! Glad to hear it went reasonably well. And I agree, the Grand Canyon is breathtaking. My dad was out visiting last weekend. One thing we discussed was that he would like to hike the Grand Canyon again sometime while he still can. Last time he did that was probably 30+ years ago when he did a quick hike down, and then back up the same trail the next morning with his BIL. I hiked the canyon with a friend and a couple of his friends probably 12 years ago. That one was a 3 day hike where we went followed this itenerary, though we went the opposite direction. We started scheming about possibilities of doing a hike together in 2019. Currently thinking maybe do 3 generations of family men for the hike as my oldest boy will be nearly if not 13 by then (the younger boy would be far to young at 7.5 by then). I'd be not quite 42 and my dad would be 72. Not that any of the women would be unwelcome, just that I know my mom wouldn't do that hike regardless, and she'd probably want someone to keep her company.
  9. Problems that repeat

    I don't know about agonists, but my best friend's wife was on SSRI's for a while (not sure how long, probably a couple years). Dang near destroyed their marriage as the pills made her into a totally different person. Once she got off them she mostly returned to the person she was before. But for months, if not years after she'd have periods of the medicated person returning. Sometimes for a moment, sometimes for a day or so. And even when that stopped she still, according to my buddy, was never quite the same. So, the agonists might well still be having an influence of some sort. Either because they caused some permanent changes or there's some residual effect still lingering somehow.
  10. Summer adventure season starting

    I am going to write off deer season this year. Just don't want to risk aggravating the hernia and having that cost me elk season. But otherwise, yes, I'm not letting this stop me from doing much. Obviously I have to slow down a bit and be somewhat cautious until I get the surgery as otherwise I'll wind up in a lot of pain and be forced into not doing a lot of things. I will continue to exercise, though I might back off a touch. But between weight loss and improved blood pressure (102/60something yesterday at the family doctor instead of 130's/80's) and I don't want to lose that progress. One good thing to note is the surgeon I'll be seeing sounds like about the best I could have hoped for. My family doc asked one of her nurses that used to work at that hospital's ICU for a recommendation. In my experience if a nurse, and especially an ICU nurse, recommends a surgeon that is a pretty rock solid reason to go with that doctor. Nurses typically have a low opinion of most doctors, especially surgeons. I also asked another friend that due to his work would be very much in the know about who the good surgeons in that area are. And when I gave him that name he said he was "outstanding" and that he'd not hesitate to let that surgeon operate on himself or anyone in his family. After my consult I'll update with my first hand impressions of him. Assuming all goes well, if anyone in the Puget Sound area wants his name you can PM me for that info.
  11. 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.
  12. Summer adventure season starting

    3/8 of a ton live weight for a large mature bull elk. But, that's why they get cut into several pieces, and why I'll be with 2 other guys. And, thankfully, farthest we've had to pack one back to the boats was about 200 yards. Anyway, consult is scheduled with a surgeon at Providence in Everett for Tuesday afternoon. We shall see what he has to say. But, yes, this was well down on my list of things I was hoping for. There are worse things, so I'll just try to be greatful it's not one of them.
  13. Summer adventure season starting

    So, my last post, I thought was lost and wasn't going to re-type it all. Then, somehow my laptop remembered it. Anyway, a bit of an interruption to my adventure schedule. 2 years ago I had surgery for an inguinal hernia. It would appear that hernia is recurring. Should have a consult scheduled with a surgeon soon. Going to try to push to have any surgery after elk hunting season (first week of November). It's not nearly as painful or restrictive, yet anyway, as last time so I'm pretty sure, for now, that I can afford to push off any surgery. Definitely not going back to the last surgeon though. After the multiple screw ups with my prescription documents that left me literally screaming in agony I'm done with them.
  14. Summer adventure season starting

    It's my thread so I can drift it if I want to!!! LAD's post about her trip to the UK is a decent segue anyway. My boss came to me a week or so ago and mentioned that his proposal as part of the 2018 department budget for funding to send me to India got past the first real round of checks with senior management. I've been the lead for all of the projects we off-shore so I've been working with the crew in India for 4 years now. High time I got to go there and actually meet those people face to face. So, if all goes well, sometime in the next 15 months I'll get to make a trip to India. Could be as early as February, or might not be until Nov/Dec next year. Main thing though is to avoid travel there from June-August, and May and September are not great either due to the monsoons. From what I've been told October-March is the best time frame. Not sure how long I'll be able to be there, but probably at least a week on business. Plan is to then have DW join me and take a week of vacation time and go exploring. I really want to visit at least one of the tea growing regions of India since I do drink quite a lot of tea. While I'd love to go to Darjeeling that might (or might not) be a bad idea. Apparently there is a Maoist (i.e. communist) terrorist group that is active in the Assam province and at least US government officials require special permission from the government to go there because of the risks. As a tourist the risks would be a lot lower, but still. However there is a region in the southern tip that also grows a lot of tea that is also supposed to be especially beautiful and interesting besides the tea. So we might go there instead. Also New Delhi is a pretty likely destination, and would make it possible to see places like the Taj Mahal. Besides all the cool things to see and do one goal will be see if I can manage to get tired of curries. If all I have is 2 weeks my biggest issue will probably be too many options for different curries and not being able to try them all. I'm pretty much a carnivore, but given some properly made Indian food I've had I don't even think I'll mind a couple weeks of vegan eating there (and likely I'll be able to get plenty of meat if I want - lots of Hindu's aren't vegetarian let alone vegan, and some even eat beef - point being I expect it to be so delicious I won't care if it has meat in it or not). Just have to hope I can avoid the "Delhi Belly" (aka Montezuma's Revenge, aka dysentery) in the process of trying all that food. I do at least know enough to only drink bottled water, or drinks like tea that involve boiling the water, or beer that has enough alcohol to kill any pathogens. Also avoiding things like salads that have been washed in local tap water.
  15. Newest DBS system st Jude's

    While waruna makes a good point, I'd still be interested in checking out a new provider. Most likely they are fairly aggressively getting techs into training programs and trying to spin up support quickly for exactly the reasons waruna mentioned. At the end of the day if more people use other than Medtronic systems it will put pressure on Medtronic, and all the other current and prospective DBS suppliers to continually increase quality and decrease costs.
  16. Tuscan AZ MDS/neuro?

    I know a guy that kayak fishes Flathead Lake frequently. I'm sure I'll get out there someday to fish with him. Best of luck to your DH on the elk hunt! Good thing it's a guided hunt as if he shoots one the guide will take care of everything for him. Having been there several times (and never with a guide to help) even a "small" elk is a BIG job. I sure hope he gets one, and that you and him can re-live that experience every time you enjoy a steak or roast from that animal. My older daughter drew a youth hunter antlerless elk tag. I need to get her to the range again so she's practiced up enough. I've been hunting that area the last 4 years. I think we have a good chance of putting her on elk opening day (good thing as she'll be overwhelmed with school work if it takes more than a couple days to fill her tag).
  17. Tuscan AZ MDS/neuro?

    IIRC you're around Yuma?? Linda - Vegas is quite the drive from Tucson, probably 6 hours, give or take depending on traffic, and not much less of a drive from Yuma. I used to live outside of Tucson, but that was 2004 when we sold the house there, so 10 years or so before I started to care about neurologists. NN - when do need the recommendation? If you don't get anything soon I can ask my parents if they have any useful intel. They now live in a 55+ golf course community in Marana. They might know someone that can give a recommendation.
  18. New guy here - a journey I'd like to avoid

    Good news! ET is much preferable to PD as it's not a progressive, degenerative disease. Not that it's a total picnic, and causes plenty of issues as it is, but given the choice I'd take it over PD.
  19. I assume you mean affected side rather than dominant side from the context of the conversation. I only bring that up for any lurkers that might get confused. For the record my tremors are on my left side whereas I'm VERY right side dominant. I have, after 2 years since diagnosis, and not quite 3 years since I noticed symptoms that lead to that diagnosis, no tremors on my dominant right side.
  20. New guy here - a journey I'd like to avoid

    I first noticed my tremors in November 2014. Didn't even say anything to my wife until January 2015, and didn't see my family doc until March. Waited until almost May to ask for the referral to a neurologist, and saw her at the end of June that year. She said it looked like PD and had I been 68 instead of 38 she'd have given the Dx right away. But she had me go through all the tests to exclude other diseases and I got the formal Dx in late September 2015. Sorry to say this but loss of smell is a hallmark of PD. I can barely smell bad milk, rotten meat, garbage, dirty diapers, and so on. Most folks on here will say similar things about their sense of smell.
  21. New guy here - a journey I'd like to avoid

    My tremor was pretty obvious. It's not just a finger that slightly tremors. It's more like a wrist tremor as my whole hand tremors in a motion that is rolling about the axis of my forearm. Sometimes my foot will also tremor but that is far less common. Not sure about muscle stiffness being a symptom, though I do tend to have more of that on my left (affected) side than my right (dominant) side. Joint rigidity however is a symptom. Mostly seen in wrists, elbows and knees on the affected side. Though I suppose any joint can be affected.
  22. Anxiety/Tremor Help

    Maybe switch to de-caf. PD or not if you're that sensitive to caffeine probably a good idea to cut it out.
  23. Summer adventure season starting

    Excellent! Never been to Europe. Been to New Zealand 3 times, but not the UK. Have a great trip!
  24. New guy here - a journey I'd like to avoid

    'Tis a process. You might get answers now, or you might not. Depends on what the tests showed, what else your doc sees that gives more questions, and how conservative (s)he is with diagnosing. Sorry for the non-answer, but that is the reality.
  25. Are drug firms paying your doctor?

    Not saying there isn't a reason to be concerned on some level about this topic, but that headline is misleading. $74million sounds like an awful lot for drug companies to pay to doctors, but how many is that spread over? If it's just 3-4 doctors, that's scandalous (unless it's for royalties for some multi-billion dollar drug they were key to developing). Quite a ways down the article they finally say it's 28,000 doctors that split that money. That's bordering on chump change on per-doctor level ($2646 each - about enough to pay for coach class airfare and hotel/rental car for a couple conferences, or similar). Later the article mentions Abbvie spent $35mil on 285,000 payments. That's $123 per payment on average. Big whopie. Even if you assume each doc got 10 payments from Abbvie that's $1230. And most docs getting payments from Abbvie likely got just 1-2 payments. For someone making $90-400+k per year that's absolute peanuts and not likely to influence them to recommend a drug they wouldn't recommend anyway without the payment. Put the focus on the docs that are getting paid huge sums to push drugs they otherwise wouldn't since that is at least an ethical violation, if not a legal violation. Forget about the docs getting a drug company rep to buy them lunch once or twice a year. Heck, I'm a lowly non-management mechanical engineer and I get my lunch paid for by suppliers at least a few times a year. And sometimes a really nice dinner (with wine!).