Jump to content
helplinedonate

ShopGuy

Members
  • Content count

    173
  • Joined

  • Last visited

  • Days Won

    9

ShopGuy last won the day on September 10

ShopGuy had the most liked content!

Community Reputation

109 Excellent

About ShopGuy

  • Rank
    Advanced Member

Profile Information

  • Gender
    Male
  • Location
    Inland Northwest

Recent Profile Visitors

1,146 profile views
  1. @zerohours000 As you may have noticed from my signature, my father also had PD. He was a very private man, but in one of the few conversations we had about the condition we shared, he said, 'Be careful. It's easy to wind up in dark place with this.' Shortly after my dx, I realized a few things that have been important for me: In spite of publicly playing the cynic, I'm actually an optimist. Talking with a therapist from time to time helps keep the optimist tendency on top, and avoid the 'dark place.' 'It is what it is' isn't an empty phrase. Acceptance isn't at all the same thing as giving up. Telling myself others have it worse (or better) doesn't change my own situation. At best, I wind up basing my happiness on the misery of others. At worst, I wind up envying someone else's good health. Here's the thing: being diagnosed with PD doesn't answer much. You still don't know how fast progression will be, when this or that treatment will be needed, or which combination of a whole laundry list of symptoms you'll eventually develop (including dementia). You don't know if the next ten years will produce improved treatments, or if the options available now are basically as good as it's going to get. Etc., etc., etc. None of this is something any of us can do anything about. It is what it is. You come to accept the uncertainty, or find the dark place. (Likely a bit of both.) There's some folks with PD who've been very articulate about all this—Michael J. Fox and Michael Kinsley come to mind, but there are many others. Although it's likely you don't have PD, you might find some of what they've written useful. A Google search should turn up plenty.
  2. ShopGuy

    Early DBS Study

    Stump--yeah, that's the general problem with tech and early adoption, right? Except instead of holding out for a cooler/cheaper phone, tablet, laptop, whatever, we're talking about brain implants. The dilemma, of course, is if there's solid evidence waiting for better tech means continuing to decline before progression is slowed or stopped. Not that big a deal if there's a way to permanently reverse PD symptoms, but I think that's a lot further out than DBS improvements. I'm imagining the conversation when I was dx'd (with not much more than a mild and intermittent leg tremor), if my MDS had been able to say, 'You know, we could do invasive brain surgery and you'd never get any worse. Take some time to think about it--but maybe not too much time.' I had a friend who used to skydive. When people asked why he wanted to jump out of a perfectly good airplane, he said, 'You haven't seen our airplane.' Why would someone mess with a perfectly good brain? 'Umm, you haven't seen my DatScan...'
  3. ShopGuy

    Early DBS Study

    Wow--for an article in a regular newspaper, this is really detailed and well-done. Thanks for sharing. If the research is successful, it raises a real dilemma for those of us that are still in the early stages, esp. with slow-ish progression. Do we accept the risks of DBS surgery (including, if I remember correctly, a not-small risk of stroke), and the inconveniences of having an implant, when the benefit isn't so much relief of current symptoms, but the promise of reduced symptoms a decade or two in the future? I can't think of many other treatments for other diseases that requires this kind of calculation--maybe pre-cancer preventative mastectomy for folks with a known BRCA mutation and family history of breast cancer? Humans are usually pretty bad at these kind of choices. Intellectually, I'd like the option for early DBS (if the research holds up). But it's so much easier to think, 'I'll just wait a while and see how much worse I get...'
  4. @zerohours000 That's an odd thing to be worried about, given current PD drugs can't do much more than mask symptoms. In other words, the very thing that worries you is the same thing those of us with PD call 'best available treatment.' If mirtazapine was capable of masking PD motor symptoms, it might be a pretty effective PD drug (by today's definition). However, looking at the Wikipedia entry for mirtazapine, I see no indication it works that way. Of course, I'm not a pharmacist or pharmacologist, so I might be missing something. I take this to mean mirtazapine has no real effect on dopamine one way or the other--it doesn't supply dopamine (like levodopa), or replace dopamine (like the agonists), or prevent breakdown of existing dopamine (like the monoamine oxidase inhibitors Azilect and selegiline). Mirtazapine is not an anticholinergic (like some PD drugs, including Artane), nor is it a calcium channel blocker (like isradipine, a blood pressure med that's being studied as a PD progression-slowing treatment). As discussed on other threads, it seems quite unlikely you have PD. That's been a consistent response, from the neurologists you've seen, to those of us who are personally familiar with PD tremors and have watched your videos, to Dr. Okun, who is a Movement Disorder Specialist and has seen thousands and thousands of patients. I don't doubt that your anxiety and suffering are real, whatever the cause, but what leads you to believe mirtazapine could mask PD motor symptoms?
  5. ShopGuy

    Considering Botox--Your Experience?

    Hi Sherry, Thanks for the response. I received a letter from my insurance company last week, approving Botox treatments as often as necessary, and for as long as my doctor thinks it's helpful. So I'll keep the appointment next month and hope for the best.
  6. ShopGuy

    26m with a few questions

    Hi Namaste, Focusing on therapy to address your past complex trauma seems wise. If you're interested in the current state of PD research, I'd recommend the book Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease, by Jon Palfreman. Palfreman's a science journalist who happens to have PD. The blog Science of Parkinson's is also good, if a little more down in the weeds, science-wise. In both cases, the emphasis is on current research and approaches to understanding PD and development of new treatments, rather than a laundry list of signs and symptoms. You may find the answers to some of your questions (or learn that we don't know the answers yet) without the additional stress of worrying you may have PD. It can be easy to fall into that trap, given many PD symptoms (other than the four cardinal ones Gardener cites) are often vaguely described, and common across a number of conditions. I wish you the best, and I'll echo Gardener--please don't apologize for posting.
  7. Foot dystonia's getting more uncomfortable, esp. while driving. Saw my MDS last week (first visit in 10 months)and he suggested trying botox. Other than the dystonia, I'm doing well--a bit more tremor but four years post-dx, still not much change. I have a friend who's had very dramatic improvement from botox (she goes from barely able to walk before treatment to jumping rope after), so I made an appointment. This will be about a month from now. Two weeks after that, my wife and I are headed to Finland for a couple weeks, including 5 days backpacking in Lapland. Question for those who've had botox: have you been happy with the results? Any trouble getting insurance to cover it? Any side effects that would make walking, esp. vigorous hiking, difficult? (Obviously I'm hoping for the opposite.) Thanks.
  8. @ Zer0, I'm not a doctor or a PD researcher, so anything I have to say is only an interpretation of what I've read. Maybe a misinterpretation. That said, the guy who runs the Science of Parkinson's blog is a PD researcher--in my opinion, it's a great source of up-to-date, detailed information. The Michael J. Fox Foundation also regularly published updates on the current state of PD research. Here's something they linked to regarding alpha-synuclein that you might find interesting: http://www.readcube.com/articles/10.1038/nrd.2017.95?shared_access_token=X_NzUw7vu4_cNX_TEJtn69RgN0jAjWel9jnR3ZoTv0MS9PnCoWe_UuQ5GUohdo8M22W0grgKbbY0Rjxk-Vz1YYT1UTtOMNWc3SksCsfsmTh4xco4oNZrI_E7NGyViQhYjiobKCbl_-7CDRPQM8QAJA%3D%3D In my view, there's a number of reasons biomarkers for PD would be useful--one of those is the possibility of early intervention when (and if) a treatment to slow/halt progression becomes available. Actually, such a treatment exists now--it's called 'exercise,' which is more or less free from negative side effects and useful for all sorts of conditions. Tough for a lot of people to stick with, however, unless there's some strong incentive. With regard to your friend with PD: it's natural to want to help, but my recommendation would be to resist making suggestions or trying to share ideas unless he specifically asks. Most folks, by the time they decide to go public with their condition, have a pretty good handle on where they're at and what treatment options look like.
  9. Depends what you mean by 'cure.' If 'cure' means: undergo some (short) course of treatment, or take some pills, or have a surgery, and boom! PD's all gone and everything's back to normal—I'm with Patriot on that: never going to happen. It's wishful thinking, as in wishing for magic. In fact, I'd say for me at least, living my life in hope of such a cure would not only be enormous waste of time, it'd likely lead to depression and despair, as the years go by and the magic cure fails to materialize. I'm optimistic about better forms of treatment (because I think the evidence supports optimism), but I never use the word 'cure' and if I had my way, PD organizations like MJFF and the Parkinson's Foundation wouldn't either. It's not realistic, and I expect it turns off more than a few donors who become cynical waiting for a promised cure that never arrives. PD is a complex disease--anything as simplistic as what most folks seem to imagine when they say 'cure' is pretty unlikely. From the Science of Parkinson's Blog: Regarding the Japanese stem cell trial: it's very interesting research but there's good reason not to hold your breath. If the hypothesis that PD is a prion-like disease is correct, then just replacing dead neurons with new ones won't prevent eventual death of the replacements--there's evidence from past transplant research that this may happen. I'm a lot more hopeful about numbers 1 & 2 on the SoP list (but then, I don't have advanced PD--yet--so would still see quite a bit of benefit even without cell replacement). Dr. Okun's notion of 'pandemic,' as I read it, doesn't mean the likelihood of getting PD is increasing, just that an aging population will have more total cases. World pop. in 2040 will be about 9 billion; if there's 14 million or so people with PD at that time (likely I'll still be one of them) that's still fewer than 1 in 600. The real problem is going to be finding enough people of working age to take care of all of us old folks (with or without PD), and I'm not sure any nation is prepared to handle that--Japan is already running into problems. As far as I know, the various forms of national healthcare are all intended to provide access to existing forms of treatment, not develop new ones. That's the job of researchers in both public and private sectors, supported by public and private funding. Public funding usually goes to basic research, without which private research geared toward commercialization and profit would be impossible (and vice versa). I believe the US govt. is one of largest funders of medical research in the world, through the NIH; love 'em or hate 'em, research by private pharmaceutical companies (many based in countries with government-managed healthcare) is also critical. And in recent years, it's hard to overestimate the impact of the (private but nonprofit) MJFF.
  10. For the reasons above, I'm a bit skeptical of Living Cell Technologies' drug, but actually quite optimistic about PD research over all. There's a good argument that we're less than five years from a breakthrough (as in, announcement that a new treatment has shown significant results in Phase III trials), and availability to patients of new treatment just a few years after that. It's been nearly 20 years since the last big breakthrough (DBS), and there's more research going on now that at any time in the past. Immunotherapy approaches are currently very exciting--the potential is treatment that will dramatically slow PD progression, or stop it all together. Both active and passive approaches are showing encouraging results in Phase I, and at least two companies have started Phase II. We should hear about the first Phase II results by 2020 or 2021: https://scienceofparkinsons.com/2018/05/19/affiris/#more-50669 https://scienceofparkinsons.com/2018/06/22/prothena/comment-page-1/#comment-3812 https://scienceofparkinsons.com/2018/04/25/biib054/ There's also a raft of repurposed drugs and OTC supplements in Phase II or III trials, including Isradipine, Inosine, Nilotinib, and Exenatide. If any of these show significantly better than placebo results, they could be available immediately (since already FDA-approved for other conditions). As you can see from my signature, I'm currently taking Isradipine off-label (with MDS supervision) on the chance it's shown to be disease-modifying. A Japanese group is about to start Phase I trials with induced pluripotent stem cells. This is real-deal research, not the fly-by-night stem cell quackery that's making money for sketchy clinics and putting desperate people at risk: https://scienceofparkinsons.com/2018/08/01/ips-cell-trial/ And I understand trials of sub-cutaneous levodopa pumps are going well, with availability expected in just a few years. This is the same idea as the Duopa pump, but much more convenient: a little needle under the skin (like an insulin pump), rather than a surgically implanted tube in the intestine.
  11. More detail on NTCELL here: https://scienceofparkinsons.com/2017/02/23/how-pigs-are-helping-with-parkinsons-disease/ tl; dr: The treatment involves injecting capsules of pig cells into the brains of Parkinson's patients. Phase IIB trial was completed in May 2017. According to Living Cell Technologies website: "At 26 weeks post treatment, the trial was unblinded. It showed that NTCELL was safe and well tolerated but at this stage, did not meet the primary efficacy endpoint. Patients will be assessed again at 52 weeks post implant and we are waiting for these follow up results." More recently, the company posted: "The one year follow up of the 18 patients in the Phase IIb study of NTCELL® for Parkinson’s disease shows a statistically significant improvement change in the Unified Parkinson’s Disease Rating Scale (UPDRS Part III in the off state) in the patients who received 40 or 80 NTCELL capsules implantation to the putamen on both sides of the brain as compared to the placebo group that received sham surgery." As yet, no publications listed for any of these results. A few questions: What is 'statistically significant'? Is it a few points off the UPDRS, or a couple dozen points off? Is that in patients with relatively high UPDRS scores, or relatively low scores? If Living Cell Technologies isn't bragging about the actual numbers, doesn't that suggest the numbers aren't very impressive? I'm skeptical--Living Cell Technologies wants to bring this to market as soon as possible (even before Phase III), but it seems like a pretty invasive treatment for likely modest results.
  12. ShopGuy

    33m. Worried of YOPD

    I'm with DaveN (and also not a doctor--just a guy with PD). There's a saying: 'When you hear hoofbeats, think horses. Not zebras.' PD is pretty rare. YOPD is rarer. YOPD at 33 rarer still. When you're taking meds that can cause twitching/tremors, and you've recently started or changed doses of one or more of those meds, that's the horse in this analogy. YOPD is the zebra. Likewise, there's more likely causes for the non-motor symptoms you report than PD. Including the stress of thinking you have something like PD. For what it's worth (again, I'm not a doctor), 'twitching' and 'vibrations' are not how I would characterize my own tremor, or that of anyone else with PD I've seen.
  13. ShopGuy

    Peeved PreClinical Parkinson's Person

    Hi Kara, It's clear that your distress is real, and it's obviously frustrating not having clear answers. And there's no excuse for medical professionals not taking a patient's concerns seriously, even if they think those concerns are unfounded. Having said that, it seems reasonable to consider that you in fact don't have PD. Look at it this way: PD is actually pretty rare, even for folks in their 60s, with non-tremor dominant PD less common than tremor-dominant forms. PD accompanied by known genetic markers (LRRK2, SNCA, etc) is even rarer. From my own experience, as well as that of friends and family w/ PD, diagnosis by primary doctor or general neurologist is uncertain, but diagnosis by experienced MDS is about 95% accurate, at least with sufficiently advanced symptoms. I had *extremely* mild symptoms when dx'd--yet my MDS picked it up with less than 15 min. exam. DatScan is about the same accuracy, but there's still a subjective element in interpreting scan results, and diagnosis might not be clear early on. The sounds like little-to-no progression in three years. Very unusual if it's PD (and I say that as someone who 4 years in still has very mild symptoms, even unmedicated, and what I'm told is very slow progression). I can sympathize with wanting to more active in research--I have been, and it's rewarding. But being in clinical trials will likely have little if any personal benefit (most trial drugs don't work, and even if they do, there's generally a 50-50 chance you'll be in the placebo arm). The desire to help others by participating in trials is admirable, but without strict controls on who participates, the results are meaningless and help no one. I get the desire for certainty, but my experience with PD has been that there's still plenty of uncertainty, post diagnosis. I know at some point I'll be unable to do what I do now, but I have no real idea *when*. PD comes with something like 40% risk of eventual dementia; YOPD (which includes me) comes with a high risk for depression and anxiety. These concern me more than physical disability, but I have no way of knowing if or when I will be affected. Existing PD drugs do a notoriously poor job of treating non-motor symptoms. As others have mentioned, if you believe you have symptoms that put your health at risk (injury caused by falls, for example) you should be able to find a doctor who will agree to a trial of sinemet--I believe it's generally considered safe for someone to take for a short time, even if they don't have PD. DatScan is very expensive if not covered by insurance, and as I mentioned above, prob. no better than exam by a skilled clinician. I hope the neurologists you've seen have already ruled out other, potentially more serious conditions. Short of that, the best advice is prob. to keep exercising, eat a balanced, healthy diet, put money away for retirement if you're still working, and maybe purchase long-term disability insurance (something you won't be able to do if and when you have an official dx). All good things to do, even if you're never dx'd with PD.
  14. ShopGuy

    Young onset PD testing

    Here is Dr. Okun responding to a question about sense of smell diagnosing (or ruling out) PD: Quote from Dr. Okun: "It's a myth." My MDS agrees. FWIW, I've been diagnosed over 4 years (confirmed by DatScan), have classic PD symptoms, and still have a good sense of smell. In my view, while waruna01 surely means well, he/she needs to make it clear his/her opinions are opinions only--I don't believe he/she is a medical professional or, for that matter, a person with PD. A lot of people come to this forum seeking answers--some will turn out to have PD, some won't--it would be unfortunate if any of them mistook a forum member's strongly-held opinions for medical facts.
  15. ShopGuy

    Newbie

    In my case, stress exacerbates tremor and relaxation lessens it. To some extent, I can control tremor consciously, but only for a few minutes--I have to focus on doing it, and as soon as my attention shifts to something else, the tremor comes back. For me, drugs have never done much to reduce tremor, although they reduce other symptoms.
×