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stump last won the day on May 31

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About stump

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  • Birthday 06/24/1977

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  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. Thanks ForumAdmin!
  8. 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.
  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.