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Everything posted by stump

  1. Hey now! I'm only 40. Let's not get premature.
  2. Yes, thank you for volunteering for this study! I have participated in a couple studies, though nothing like as invasive as you are talking about. That is something that, at my current phase of life, would not be possible to participate in. The risks to my kids if something bad happened are too high, plus with my career still very active the time required to be away from work would be a big problem. Though, as of a couple minutes ago, I'm officially old enough for that trial ...
  3. It is true that they can't diagnose with 100% absolute certainty other than through brain biopsy after death. That said, I think the "probable" Dx has more to do with wanting to follow a patient for long enough to be sure before putting the formal(ish) stamp on the Dx, as once they reach that point the odds of being wrong are tiny. I think that once you are >95% confident in the Dx there's little point in saying it is still only "probable PD". Besides, if I went to a disability insurance company looking for a new policy I don't think they'd give me a pass because my doc said "probable PD" rather than "PD."
  4. This much I will gladly grant you. It is indeed an unmoderated forum, and you did express a personal opinion, not a scientific fact, though you made it sound like you had data behind your assertion. I countered your assertion with skepticism. This is not without precedent. Had you said "DBS has plenty of benefits, but some (% uncertain but could be closer to 50% than 0%) have issues with severe speech and balance problems after surgery that cannot be reversed by programming, turning off the stimulation or removing the hardware" then you would have made a similar point and I would have just nodded, maybe said something about the rates if I had data at hand, but probably just passed it by without comment, like most of what I read on here. At the end of the day, however, I have read, by far, more commentary from those happy with their DBS experiences than not. And while some on here have reported speech and/or balance problems it is not usually the near total loss of ability to communicate or severity of balance problems you asserted were more common than not as an outcome. I have no doubt that Sierra Farris and some others you've spoken with about this have horror stories of such effects. It wouldn't even surprise me if they reported high rates of such problems in their patients. But those folks only see people that are already in the "adverse outcome" category for DBS so they tend to give a somewhat skewed perspective. My question is, what are the actual rates of those adverse outcomes? STN DBS has been around long enough to have a sufficient population to draw some conclusions about the rates of various side effects and complications. If the rate for extreme speech impairment really is 50% or more I'll happily grant you the point, and will probably take DBS off the table for personal consideration. However, if the rate is more like 0.50% then I'll probably take my chances. Please understand, I'm not meaning to pick on you. This is very much not personal. I just have a real difficulty seeing assertions that appear to have sound data behind them when they really don't. That can mislead people in ways that are potentially significant. If someone reads your claim and sees no counter claim they might choose to avoid DBS and thereby miss out on a (positively) life-change procedure. Of course, the flip side is also true.
  5. First off, where on that site did you find those stats? A quick perusal didn't show them, but I admit I only spent a couple minutes looking. That said, that website is written by someone that specializes in people that are unhappy with their DBS outcomes. So, not only could there be bias in sampling to come up with those numbers, she also has a vested interest in people finding dissatisfaction with DBS. That is not to say she is at all unethical, or doing anything against overall best interests in the PWP population, but one must always consider the source. Color me still skeptical of your claims of >50% of DBS patients having near total loss of ability to communicate and developing severe balance problems as a direct side effect of DBS.
  6. I haven't seen stats, so do you have a citation for "(m)ost people lose their speech after DBS and lose their ability to communicate with other people." I've certainly read that speech problems are a recognized potential side-effect. But "most" (i.e. >50%) is not the impression I've had of the occurrence of not just speech difficulties but near total loss of verbal communication. Same with balance. I wonder what the %'s are of the admittedly small number of PWP that have had DBS on this forum?
  7. I got a PM from a user calling themselves Cynthiakonate. Message was a variant of the classical Nigerian scam of inheriting a bunch of money/property/etc but wanting help selling it, moving the money, and similar. Tried to dress it up in Christian sounding terms too. If you get a message from this user, or anything even vaguely similar please ignore it. It is a scam, and no good will come from responding to it, or anything else. I reported the PM to the moderators. Hopefully they ban not just the user name but their IP address.
  8. Thanks ForumAdmin!
  9. From what I have read that test is probably useless for determining the amount of dopamine or other neurotransmitters in your brain. They will tell you only how much is in your body, exclusive of your brain. It's obviously your call, but I wouldn't put any stock in those tests with respect to evaluating your PD severity or progression. I cannot comment on their value for your other purposes.
  10. I'm a little confused about the bolded part. What test did they run, and how did they do it? Was this a blood test? If so, I'd just point out that peripheral (i.e. blood stream) concentrations of dopamine should have little correlation to the dopamine levels in the brain. Dopamine itself can't cross the blood-brain barrier, which is why we take Levodopa as that can cross the blood-brain barrier, and it gets metabolized into dopamine once in the brain. The only dopamine test I know of is the DaTscan which uses a radio-tracer attached to a cocaine analogue to measure the amount of neurons that can take up dopamine inside the brain. But this doesn't give a quantitative measure of dopamine, but an image that has to be interpreted by a human as to whether it indicates a degradation in the dopamine transporter (hence DaT) system. I can't comment on whether or not this site is trustworthy as it popped up from a quick Google search, but what they write in this post at least makes sense to me. Anyway, none of us have all of the symptoms. I don't have rigidity (cogwheel or otherwise), facial masking, stooped posture, small handwriting, or depression. What I do have is tremor, slowness, cramping in the forearm, hand and foot, constipation, anxiety (though that is periodic rather than chronic) softer voice (minor, only when not on meds), and probably a couple others. Traditionally, to be diagnosed with PD you need to show bradykinesia, plus one or more of unilateral resting tremor (at onset - at later stages this often becomes bilateral and also can become an action tremor), rigidity, and postural instability (uncommon at early stages). Some docs are now using an updated diagnostic criteria that has a whole bunch of "supporting" criteria and "red flags" as well as some absolute exclusion criteria. If you have more supporting criteria than red flags, and no more than IIRC 2 or 3 red flags total, and no absolute excluders you can be diagnosed with PD. I don't have a link handy to the paper that explains that, but you can probably find it easily enough via Google. If I concentrate on my tremors I can sometimes get them to stop. Usually it require me to take action with that hand. Though the best action to quell tremors is to take my meds. Anyway, PD is often called a snowflake disease because everyone does have a different experience with it. However you sound less rare/unique than you think you are.
  11. Certainly possible. That said, I'd rather have anesthesia bring on PD a few months or even years earlier than it otherwise would than have ineffective anesthesia during surgery. Though, I do think they tend to overdo the painkillers a bit. When I was in the recovery room after my hernia surgery I can remember setting off the oximeter alarms 3 times because I forgot to breathe. I was awake (well, as much you ever are post surgery) and remember getting annoyed at the alarms and wondering why they were going off. Then either I'd realize I wasn't breathing and would make myself breathe or the nurse would finally come over and abuse me (not in the legal sense) until I started to breathe again. But I was still in quite a bit of pain, so rather than say "we'd rather you endured a bit of pain than forget to breathe" or even ask me what I might want they just pushed another dose of fentanyl into my IV. Then I'd forget to breathe again.
  12. Anxiety is a common problem for PWP. Before symptoms started I never had the slightest problem with anxiety. Since then, I've had 3 or 4 full blown anxiety attacks. The first one especially took me by complete surprise. Parkinson's doesn't develop suddenly (unless there's some acute brain trauma either from injury or chemical exposure). It develops slowly over many years if not decades. The apparent onset of symptoms may seem sudden, even if the disease was actually present for many years prior. The cause of PD is a breakdown of the dopamine transporter system in the brain. Dopamine is an important neurotransmitter that is key to the function of the motor control part of the brain. Hence why PWP get tremors, rigidity, bradykinesia, constipation, stiff/sore muscles, etc. But dopamine is also an important mood chemical too. Too little dopamine in the rest of the brain leaves PWP prone to depression and anxiety. So, bottom line is that while an emotionally traumatic event might trigger the apparent onset of your symptoms you most likely have had PD for many years, and likely showed symptoms that just never got tied to PD before now, even if they were mild enough to not warrant seeing a doctor. Constipation, loss of sense of smell, smaller handwriting, some loss of coordination, softer voice, loss of arm swing, dragging foot, and depression/anxiety are common issues PWP have long before diagnosis that only in retrospect are indicators of PD.
  13. I would have been surprised if they would have even given your contact info to the study subject. If I got contact info for some random stranger that read about some study I'd been a part of that wanted to contact me, even for seemingly benign or positive reasons, I'd block all future communication from that researcher and report them to ethical watchdogs. They maintain confidentiality and anonymity for very good reasons. The chances of some creep try to proposition them for porn or something (sadly that is a thing, gross as the thought even is), or for an employer (current or potential future employer) to find out and then discriminate against them, or some other adverse event is just too high if they didn't keep such things under very tight wraps. Mind you, I'm not accusing you of doing any of the above. I believe that you are very well intentioned and would not do any harm. But the research community can't vet each person that wants such contact opportunities, so they have to draw those very hard and very bright lines.
  14. Those study authors would have been in big trouble if they had given you information on the person in the study. Protecting confidentiality is huge. That said, it wouldn't surprise me at all that major stressors would bring out symptoms for diseases like PD. Our brains are amazingly adaptable and can find ways around lots of problems. But add a major new issue for it to deal with and it might have to abandon that work around.
  15. Before going all in on meds, I'd highly recommend all the usual sleep improving things like no caffeine after noon, exercise regularly and intensely, eat a good balanced diet, stay off electronics (phone, tablet, computers) within an hour of bed time, and so on. If you're already doing those things look into melatonin. The few times I've used it the efficacy was good for helping with sleep. Benzos, Xanax and whatnot lose effectiveness over time. If you can manage without them that is probably best, but if you really do need them I'd not say anything against them. MMJ helps some, but I've not tried it. From my reading it will depend heavily in the strains you use as to whether it helps you sleep or revs you up. There are liquid extracts you can get if you don't want to smoke it.
  16. It appears we've run off the OP. That's too bad. If he reads this, I hope he understands my comments were meant to help and if they sounded overly harsh I do apologize as I didn't mean to be too harsh.
  17. Serenity - Some of us have pretty strong opinions. I freely admit to being one of them (I don't try to be a butt, it comes naturally), though I try to back any opinions up with evidence most of the time. While you don't have a Dx yet, and when you eventually do get one it may well not be for PD, I see no reason why you can't stick around, ask questions, answer ones that you have valuable input for, and learn as much as possible. All that said, my best recommendation for you at this stage is to probably hold off until your insurance through the new job is active and then ask around for recommendations from people you know/trust/like for a new PCP. Focus your questions to those people on which docs will actually care and listen to you rather than try to pump patients through as fast as possible. Such docs are getting harder to find. It may be that you need to essentially interview a few before you find one you like well enough. DW and I did exactly that when we found out she was pregnant with Thing 1. One Ob we had an appointment with turned us both off in a huge way. She seemed offended that we'd have the temerity to look for a doctor that respected both of us, and treated her like a human being and me like more than an undesirable piece of furniture. As a result we ultimately chose a midwife, and that midwife has become a friend that we keep in touch with. Anyway, find that good PCP. From there you should have an easier time getting to a neuro (ideally an MDS) that is also the kind of doctor you want on your side. Then you can probably find the answers you need, even if they're not the ones you want. That whole process will take at least months, and quite possibly years. I'll pray that it's the former for your sake.
  18. It is not cheap, but well worth it. I've considered many time reducing or even cancelling that policy. Thank God for apathy, or procrastination, or whatever it was that kept me from doing so. Especially when I was unemployed. Could have really used that monthly premium then especially. But by keeping it I have a peace about my situation that I simply wouldn't have otherwise. If I need to pull the ejection handle on my career, so be it. We'll be just fine, financially. The rest of it, not so much. But knowing my family will maintain their home, ability to buy food/clothing/etc, and even have enough left for some relative luxuries, all without having to rely the government is huge. SSDI could go away and we'd still be OK in terms of finances in that case.
  19. QFT. I always say that the cheapest option is rarely the least expensive.
  20. SSDI is difficult for honest, hard working, tax paying people to get. The sponges of society get it with sickening ease. The rates of investigation, let alone conviction, for fraud is pathetically low, unless you are the aforementioned honest, hard working, tax paying citizen. Then an honest and inconsequential mistake is treated like the crime of the century. Is there fraud - oh heck yes there is. To the tune of tens if not hundreds of billions of dollars per year. But as TPTB don't want to admit to that fraud actually quantifying it is next to impossible. Cut 30% of SNAP, or Medicaid, or SSDI, or welfare, or whatever, and if you can identify just some of those that shouldn't be getting it (and by that I mean those who can work but chose not to, or that are outright fraudulent) and kick them off the roles, and I'd bet dollars to donuts you could still leave a significant amount of the fraud in the system and not impact those that legitimately need those programs. Nobody, even the most seemingly (to libs at least) cold-hearted conservative wants to see children, or disabled people, or poor elderly people starve, or become homeless. On the other hand, someone who is an able bodied working age adult and would rather bludge the dole than do even a half assed day of work can starve in the gutter for all I care. I'm all for having people on welfare sweep the streets, clean up parks, dig ditches and then fill them back in, break rocks for no reason at all, or whatever it might be in exchange for said welfare. It should be a trampoline, not a hammock. I'm not making up some mythical sub-class of people here either. I have family members (on the in-law side, but still) that fit that description to a T. For the record, I have no problem with helping those that need it. Kids, those that were left without resources through no real fault of their own, and so on. But, we're all adults here. Before PD struck we were (presumably, mostly) healthy. I bought disability insurance when I could, and I did my homework and made sure it was a good policy. I made sacrifices to pay for it. As it stands, last I checked, I pay about $160/month for that, and if I retire on disability that policy will pay around $7700/month, tax free. It's an "own-oc" policy that will pay as such until I'm 65, with a 90 day elimination period. That policy is called being responsible. I get that not everybody has the means to get the kind of policy I bought and have continued to pay for, but there are cheaper policies that can be had more affordably. Go with 180 day elimination, and cut the benefit to 60% or less of your own pay (and BTW that is A LOT more than 60% of my current income) and that premium will go down commensurately (a $2500/month policy should be well under $50/month if you're still healthy when you get it). Though I would recommend keeping that as an "own-oc to age 65" if you can get it. You do realize that the top 1% of income earners in this country pay around 38% of all individual taxes paid (while earning 19% of all income)? While the occasional billionaire might be able to figure out a way to not pay taxes, the solution to that is to simplify the tax code so there aren't the loopholes anymore that allow for that. Not to hammer the middle and higher class wage earners that already pay heavily ever harder. Billionaires usually do pay very little in "income taxes" because they don't earn a W2 based income. Their income is mostly from capital gains and dividends from stocks. Even so I'd bet they still on average pay a much higher percentage of their income in various taxes than any of us on this forum do. When the media talks about their tax burden they conflate not owning "income" taxes with not paying "any" taxes.
  21. First off, the bias in that article dripped off my screen and onto my keyboard. But, that aside, while the enrollment in SSD might be dropping slightly over the last couple years, bear in mind that SSD is probably the single most abused "entitlement" program right now. Vast numbers of people got moved, that really shouldn't have been, from unemployment programs to SSD because that was easier than actually dealing the problems related to long term unemployment of large numbers of people. It is far too easy to get SSDI. See There are massive cuts that can, and should be made to all federal spending categories, SSD included. If the cuts are done intelligently (and, of course, they won't be, and probably deliberately so) those cuts shouldn't impact those that have actual disabilities.
  22. I get that you intended humor, but I would caution against that specific kind of humor. It can turn serious if you aren't really careful. That said, I recently had a neuropsychological exam. It revealed some memory issues and fluency issues that were unexpected, at least for the doc doing the exam. My executive function, for the most part, was "Superior" for my education adjusted age group. A bit different from what was expected for someone with a PD diagnosis as executive function is typically where the deficits are found. The memory issues put me in the "low normal" category and verbal fluency was "mildly impaired" according to the report I got. I think that's because when asked to list every word beginning with a certain letter I stumbled pretty badly. In conversation, other than occasionally needing a little more time than normal for word finding I'm fine. And outside of the test I could think of way more words. Anyway, while I may have sounded a bit harsh in my first reply, please do stick around and contribute and learn from this group. I wish this group wasn't necessary, but am glad for it at the same time since it is necessary.
  23. Brisket turned out fantastic. Next time I'll let it brine longer - it was obvious when I cut into it that the brine hadn't fully penetrated to the middle yet. Typical brine time for the size of brisket I had would have been 10-15 days and I only gave it 6-6.5 days. Otherwise no changes. Definitely going to try this with some game meat when I have more available. Next up though, I think, will be a pork belly and making my own bacon.
  24. 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.
  25. If your wife is "very understanding, patient, and always there to help with with anything I need" then you're a damn fool if you do anything but hold on to her. Rest of it might be worth responding too when I'm not so tired, but seriously, just because your wife wants to be more social than you are presently comfortable with is no reason to contemplate divorce. You might need some help with adjusting to your new limitations, but your wife is a willing partner in all of your struggles. Honor that.