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ShopGuy last won the day on October 17

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  1. Not Diagnosed, However Need Advise

    I believe one of the reasons an MDS would hesitate to diagnose based on non-motor ("secondary") symptoms is that there are many conditions that can cause apathy, depression, cognitive issues, etc. Whereas bradykinesia plus rigidity, esp. in combination with resting tremor, is more specific to PD. Typically, PD-specific drugs like MAO-B inhibitors, dopamine agonists, and L-dopa don't do much for non-motor symptoms--you'd likely be prescribed antidepressants or anti-anxiety meds for those symptoms anyway. My own experience is that neither the dopamine agonist I was taking, or the MAO-B inhibitor I'm currently on have much effect on my tremor, or dystonia. Bradykinesia and rigidity responded well to the agonist, at the cost of a few mild but annoying side effects. I believe others here have had good tremor relief from dopaminergic meds, but it's kind of a crapshoot.
  2. Not Diagnosed, However Need Advise

    Hi Doubleup, I empathize with how troubling all the uncertainty can be. But if it were me, I would be very hesitant to pay out-of-pocket for a DaTscan. Clinical diagnoses by an MDS is very accurate--as accurate or more so than a DaTscan. For example, my PD symptoms are quite mild--a couple weeks ago, I participated in a presentation to first year med students about YOPD. Only about a third of the group was able to see that I had any symptoms, in spite of having just seen an MDS give me a neurological exam and being told (by both of us) exactly what to look for. Yet, three years earlier, when my symptoms were even less apparent, my MDS was able to diagnose PD in about 15 minutes. Someone who sees PD patients day-in, day-out, with all sorts of different symptoms, gets very good at spotting even early, mild PD. If your MDS isn't seeing it, that's worth really thinking about. I was offered a DaTscan at diagnoses, and my MDS said they would push the insurance to pay for it. I told him if he was sure of the diagnoses without the scan, that was good enough for me. As it happens, I had a DaTscan this summer as part of screening for a clinical trial (no cost to me)--the results clearly showed PD. The odds are very high you will spend a lot of money to get the scan, and still have no answers. If a PD specialist can't give you a clinical diagnoses at this point, it seems unlikely medical treatment for PD will do you much good either--there are NO proven disease-modifying medications available. Exercise and good diet are always good approaches, PD or not. So is financial planning, esp. as PD can mean earlier retirement than planned. If it were me, I'd take the money I was going to spend on DaTscan and put it in my 401k.
  3. Hi Otolorin, I think I took isradipine for a little over a year. No symptomatic benefit, as far as I could tell, but wasn't expecting any--if it works, it's only expected to slow progression. Cost to me, after insurance, was $25 for three month's supply. $250, if I had to pay full price. My MDS tells me my progression is remarkably slow. I'm in very good health apart from PD, exercise regularly, and have taken Azilect continuously for the last two years. Maybe some or all of those things have helped. My blood urate levels naturally test high-normal--as high as the target levels in the current phase 3 trial for inosine. I was also dx'd very early on, in terms of symptoms, and am left-side tremor-dominant, and young(ish) onset--all associated with slower progression. Maybe I'm just lucky (or as lucky as it gets, having an incurable progressive disease). When I finish the clinical trial I'm involved with, I intend to start back on isradipine, and take it until results from the isradipine trial in a couple years. If results are negative, I'll stop. If positive, obviously I'll continue.
  4. Out of curiosity, I used my insurance company's online price checker to see what taking exenatide or nilotinib off-label would cost me. Just to be clear, even if I could afford to, I have NO intention of asking my doctor to prescribe either drug off-label. IF insurance covered it, Byetta (daily injection) would cost $2.50/day. Bydureon (weekly injection) would cost more than $10/day. Until recently, I was taking isradipine off-label (generic DynaCirc, which miracleseeker mentions above) and my insurance covered it with no questions. But isradipine is a cheap generic for a common condition (high blood pressure). For what it's worth, I don't have especially high blood pressure, and had no noticeable side effects from isradipine, but I don't have orthostatic hypotension either. If I did, I doubt my MDS would have prescribed isradipine. Isradipine is in Phase 3 trials for PD, and has been shown safe for PD patients in Phase 1 and 2 trials. But since I don't have Type 2 diabetes or cancer, I'm pretty sure my insurance wouldn't cover exentatide or nilotinib. Cash price for exenatide (either Byetta or Bydureon) would be about $600/month. Maybe doable, if my wife and I made a lot of financial sacrifices. Nilotinib (Tasigna) would be more than $12,000 for a four month supply, taking the lowest dosage studied for PD (150mg/day). Simply not possible. Good news, as I see it: clinical trials for both drugs are moving forward rapidly. Because both drugs are already approved for other conditions, IF (big 'if') either passes Phase 3 trials, they will be available on-label for PD shortly after--perhaps as little as 2-3 years from now. Of course, chances are neither drug will live up to the initial hype--another reason not to jump in w/ off-label use.. Two or three years from now is obviously too late for some, including my dad, who died from PD-related complications in February. But if exenatide really does what it appears to do--not only halt progression, but reverse it--it won't be too late for many more of us, including folks with quite advanced PD. I'm content to wait and see how clinical trials play out. I've checked and I won't qualify for the phase 2 nilotinib trial (my MDS is one of the researchers). I do plan to continue with an upcoming phase 2 trial of the drug testing I'm currently involved in. It's worth noting, the delay getting most promising drugs through clinical trials is difficulty finding enough volunteers for those trials. When possible, I'd rather put my time into that when, rather than trying to get my doctor to prescribe me super expensive, barely-tested drugs off-label.
  5. LIke others, I was pretty skeptical of WBV's intentions. But he's offered full disclosure, hasn't posted or linked to any marketing or advertising content, and has stayed anonymous so that none of us could patronize his business, even if we wanted to do. As long as that continues, I'll take his statement about his goals at face value. The video he links above seems clear and reasonable. With regard to specific claims about Whole Body Vibration, I'm still skeptical, but curious. The site Science-Based Medicine is a favorite of mine--here's what they have to say: https://sciencebasedmedicine.org/whole-body-vibration-therapy/ (Author is Dr. Steven Novella, a neurologist at Yale University School of Medicine). Short version: it's plausible that whole body vibration *could* work, but that it offers specific benefits for particular conditions hasn't been demonstrated in a rigorous way. Studies with more controls show little to no positive result for whole body vibration. Usually, that's not promising. It isn't crazy to think vibration might benefit some specific Parkinson's symptoms for some people (balance and gait, say)--it would be very odd if it improved all symptoms for many people (after all, no other treatment does). The abstract WBV posted on a separate thread is intriguing, but I'm underwhelmed by a study with just 15 people, a 6 week intervention period, and no control groups whatever. Conclusions seem pretty far in front of the evidence. No indication whether the abstract is from a paper delivered at a conference, a poster presentation, or a peer-reviewed paper published in a journal. Still, I'll read the other two studies he's promised when he posts them.
  6. NAUSEA ad nauseum?

    I had pretty frequent nausea from Neupro. Anything with strong ginger helped--preserved (with sugar), pickled as Linda says, good strong ginger ale or ginger beer. But then, I like ginger.

    No stem cell therapy for PD has passed rigorous clinical trials, and so far, trials of stem cells for PD have been underwhelming. The notion that for-profit clinics, in business for a few years, are achieving amazing results while legitimate researchers with decades of experience are not, makes no sense. Offering unproven stem cell therapies outside the context of a legitimate clinical trial, without full disclosure and obtaining informed consent (which is what all these so-called clinics are doing, regardless of their claims), is unethical, by any ordinary definition of the word. Charging many thousands of dollars for unproven, potentially dangerous treatments of dubious benefit is even worse. And, yes, people have been very badly injured by stem cell clinics: https://www.nytimes.com/2017/03/15/health/eyes-stem-cells-injections.html These operations are a scourge. They trade on people's fears, and victimize the vulnerable. Any doctor who profits from this work violates their Hippocratic oath, at the very least. Plenty of them deserve to be jailed for fraud and reckless endangerment.
  8. newly diagnosed outdoor active female

    Years ago, a friend and I spent two weeks hiking a stretch of the AT along the Blue Ridge--ended at Buena Vista, VA if I remember right. Beautiful country, but I don't miss the heat and humidity, or the overloaded pack I was carrying. Started doing the ultralight backpacking thing a few years before PD dx. Getting pack weight down was a big help even w/o PD--I expect more benefits as things progress. Sleeping on the ground isn't as easy as it used to be, but a thick insulated air mattress helps. The Pyrenees sound fantastic--my wife and I are hoping for Finland sometime in the near future, and I'd also love to go back to Iceland for an extended stay in the East Fjords. And this summer/fall may finally be the year we climb Mt. Adams (WA State), instead of just talking about it... My MDS is one of the study doctors for the inosine trial: https://clinicaltrials.gov/ct2/show/NCT02642393. Trial uses the dietary supplement inosine to raise blood rate levels. Urate within a certain range is associated w/ slower progression. My urate levels are already too high to qualify for that study (a good thing, I'm told). My understanding is, using inosine needs to be carefully monitored, as urate levels that go too high can cause gout. I was taking isradipine off-label until recently (see signature) and will resume in October. Had already started dopaminergic meds, so didn't qualify for that trial: https://clinicaltrials.gov/ct2/show/NCT02168842 Off-label isradipine use was with MDS guidance and consent. I've had no noticeable side effects, but others have (mostly mild edema). Searching for SURE-PD III (inosine trial) or STEADY-PD (isradipine trial) should be a good way to keep up to date.
  9. newly diagnosed outdoor active female

    Hi Hiker, Rates of progression vary widely. I'm starting my fourth year post-diagnosis, and have noticed very little (if any) decline in physical abilities. My MDS considers my progression very slow. Having said that, I was dx'd quite early, with just a few mild symptoms I probably could have ignored Like you, I'm active outdoors (hiking, backpacking, skiing, etc). I also have a job that keeps me physically active. Some of my symptoms are similar to yours--Neupro (a dopamine agonist) restored arm swing, and got rid of that draggy foot feeling, but also caused frequent nausea and afternoon sleepiness. These are mild side effects relative to what some experience with agonists, but still annoying. I haven't decided yet if I'll start taking it again, when the clinical trial I'm in concludes this October. As others have said, exercise is a great way to try to slow progression. You might want to keep an eye on Phase 3 trials of isradipine and inosine--two promising approaches for slowing progression that will be available immediately for that purpose if trials are successful. PD dx can be a shock, but also an incentive to focus on the present, and quit putting off plans for some future time (a future that may not happen, with or without PD). Last spring, my wife and I climbed our first Cascade volcano. Summer included multiple backpacking trips. Last fall, we went to Iceland for two weeks of hiking (including glacier hiking) and sightseeing--a trip we'd talked about for years. I did a three day mountaineering course on Mt. Rainier, which I'd like to repeat this coming spring under more challenging conditions. Based on my experience so far, and barring significant advances in treatment, I expect to keep doing this kind of stuff for another 5-10 years. Granted, pre-dx, I wouldn't have contemplated giving up intensive outdoor activity at 55 or 60 years old, and granted, being fortunate enough to have slowly progressing PD is not as fortunate as not having PD at all. But things are as they are.
  10. Lonnise: Thanks for recommending the Atul Gawande book. Just ordered it, and looking forward to reading. I'm afraid I'm on the wrong side of the country to return the favor w/ an MDS recommendation, but it sounds like you've already got a few good ones. Best, David
  11. Follow-up to Dancing Bear's cautions re: Promethease. My understanding is Promethease is completely automated: the analysis just matched your results from 23andMe (or other testing service) with info in the Promethease database. Some info is more reliable or relevant that other info, depending on the size of the study for that particular gene SNP, whether or not the study was ever replicated, etc. Promethease tries to rate the reliability and relevance of info about particular mutations with a number they call 'magnitude' which starts at 0 ('boring') and goes up. But the magnitude score is crowd-sourced, so has issues. It's useful to consider what percentage of the population has a 'bad' mutation, as well. For example, my Promethease report shows I have a SNP mutation (rs1333049(C;G)) associated with 1.5X increased risk of coronary artery disease. But 50.4% of the population has the same mutation, meaning more people than not have the same increased risk. Since my annual physicals show no other risk factors for CAD, I don't worry much about it. Also, testing services like 23andMe use an 'in-house' code name for some SNPs, which doesn't match the name of the SNP used in scientific literature. For example, 23andMe apparently uses code names for some of the SNPs on the BRCA genes where mutations are associated with increased breast cancer risk. Promethease tries to match 23andMe code names with names in the literature, but there's some guesswork involved and mistakes happen. Otolorin--thanks for the comment. My father died in February from PD-related complications, but did well while alive coping with his reduced physical abilities--fortunately, never any significant cognitive issues. My sister seems to be responding well to C/L. It was a struggle for her to find out what was going on and get a dx, and I hope she has a nice long honeymoon period with the drugs to make up for some of that.
  12. Phase 1 Trial of New PD Treatment: My Experience

    Hi Lonnise, Perhaps my signature is confusing--as far as I know, I have NO genetic markers associated w/ PD, and neither do my family members dx'd w/ PD. Here's part of another post I wrote that may clarify: Most people with PD *don't* have LRRK2 or GBA mutations, or any other mutations strongly linked to familial PD. My dad had PD, and my sister was recently diagnosed. That might suggest a genetic cause, but we've have also lived in similar environments, associated with somewhat higher risk. And the specifics of the disease were somewhat different for us--my dad was diagnosed in his late 60s, tremor dominate, relatively fast initial progression (very typical PD profile). My sister has no tremor, but debilitating postural instability, and gait issues. Symptoms starting ~55 y.o., undiagnosed for 4-5 years until she went to an MDS. I was diagnosed at 46, tremor dominate, very slow progression to date. Although my dad never had genetic testing, and I don't believe my sister has had any testing yet, I would be very surprised if either had LRRK2 or GBA mutations. Re: sub-categorizing. My guess is we're still quite a way from treatments tailored to specific PD subtypes, since research into what constitutes subtypes and and the different causes is still at an early stage. I try not to focus much on why I (in particular) wound up w/ PD. First, because there's likely no clear answer or single cause. Second, because for me it's a little too close to a 'why me?' kind of question, and too much 'why me?' seems likely to lead to dark places.
  13. When I used Promethease, the cost was $5. No LRRK2 or GBA mutations associated w/ increased PD risk. Same results with genetic screening for Parkinson's Progression Marker Initiative (i.e., I didn't qualify for the study). Thing is, most people with PD *don't* have LRRK2 or GBA mutations, or any other mutations strongly linked to familial PD. My dad had PD, and my sister was recently diagnosed. That might suggest a genetic cause, but we've have also lived in similar environments, associated with somewhat higher risk. And the specifics of the disease were somewhat different for us--my dad was diagnosed in his late 60s, tremor dominate, relatively fast initial progression (very typical PD profile). My sister has no tremor, but debilitating postural instability, and gait issues. Symptoms starting ~55 y.o., undiagnosed for 4-5 years until she went to an MDS. I was diagnosed at 46, tremor dominate, very slow progression to date. Although my dad never had genetic testing, and I don't believe my sister has had any testing yet, I would be very surprised if either had LRRK2 or GBA mutations. It's a weird disease (or diseases).
  14. Phase 1 Trial of New PD Treatment: My Experience

    Had the second spinal tap this past Tuesday (along with blood draw and ECG). Patriot, with regard to side effects: the consent document is 22 pp long, and goes into detail about known side effects from DaTScan, MRI, lumbar puncture, blood draws, etc (all minor). Regarding the study drug, the document states that since this is one of the first times the drug has been used in humans, "possible serious side effects are not known." In addition, the document makes it clear that BIIB054 has NOT been tested for increased cancer risk, or interactions with other medications. I'm not a doctor or medical researcher, but my understanding is increased cancer risk is not expected from immunotherapy (since the immune system often plays a role in preventing cancers). Cancer risk *is* a concern with stem cell therapies. Sadly, some unproven, unregulated--not to mention very expensive--stem cell 'cures' have caused cancers. It's tragic that desperate people were suckered into paying tens of thousands of dollars for a fake cure that caused real cancer. Of course, 'cancer' isn't a single disease. I think even slightly increased risk of a lethal, incurable disease like lung or pancreatic cancer would be a big deal. But maybe increased risk of less serious, curable cancers might be worth it. My dad was diagnosed and treated for prostate cancer at about the same time he was dx'd with PD. The prostate cancer never came back, or caused any significant problems for the rest of his life (15+ years). But PD disabled him physically, then complications from it killed him. Anyway, none of this seems applicable to immunotherapy. As it was explained to me, immunotherapy is basically one of two approaches: active, where the patient's immune system is stimulated to produce antibodies its own; and passive, where antibodies produced in a lab are injected in the patient. BIIB054 is the second type--passive. In some Alzheimer's trials, early active immunotherapy approaches caused runaway inflammation and killed patients. This has made researchers very cautious about active approaches, although there is an active immunotherapy treatment for PD that has advanced to Phase 2, and thus passed Phase 1 safety testing. The advantage of active immunotherapy is that only a few treatments would be necessary, after which the body's immune system would be capable of clearing alpha-synuclein on its own. Passive approaches are considered safer in principle, I believe. But it seems more frequent treatment is necessary, since the immune system doesn't actually make the antibodies. As an aside: the injection procedure I went through was pretty clunky--an hour lying down with an IV. If that had to be repeated say, weekly, I doubt it would be worth it to anyone without advanced PD. But I really have no idea how or how often BIIB054 will be administered if it becomes an approved treatment. When I talked to my doctor last Tuesday, he said he was surprised none of the PD patients he has enrolled and treated (four so far) experienced significant headache as a side effect of the study drug. He expected it, as a consequence of minor inflammation of brain and spinal tissues. I suppose that could mean any number of things, including that BIIB054 is safe, but not particularly effective.
  15. Anyone Else in the PPMI study?

    For what it's worth, I'm currently in a study that requires three spinal taps in a single month. That was pretty much my major anxiety about participating. I've had two of the spinal taps so far--nothing close to as bad as I expected. A few pokes from the lidocaine injections, then some pressure (no pain) when the needle is inserted. No spinal headache after (none of the other patients my doctor is working with have had spinal headaches either). Some moderate low back pain after the first procedure, that resolved with ibuprofen. Insertion point a little tender for several days after. Not sure about radiation exposure--is that from the DaTScan? If that's all, I'd say the risk there is vanishingly small. Many of us here have had DaTScan--thyroid is flooded by drinking a solution of non-radioactive iodine before the DaT injection, which prevents absorption of the radioactive iodine tracer. The iodine tastes pretty bad, and the hour-long scan is boring, but I actually preferred it to MRI (less noise and confinement).