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Everything posted by ShopGuy

  1. 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.
  2. ShopGuy


    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.
  3. ShopGuy

    Neupro patch

    I was on Neupro 4mg until about 9 months ago (see my signature for details). Fine med for me, although the nausea never really went away, and could be pretty miserable. I rarely wore the patch for 24 hours--usually took it off at bedtime, otherwise I'd be up at 3 am feeling sick to my stomach. Supposedly, 4mg is about the lowest clinically active dose, so I wouldn't expect much effect at 1-2mg (but it's important to increase dose slowly, as you are doing). Some days, I miss the Neupro--although my symptoms are still mild to unnoticeable (to others), Neupro seemed to smooth out my gait, reduce stiffness, caused noticeable increase in arm swing, and (maybe) slight tremor reduction. I'll prob. start back up again in a few months.
  4. ShopGuy

    Dad newly diagnosed

    Hi Nick, My dad died last February of complications related to PD (choked on food due to swallowing issues). He was just shy of 83, had been diagnosed for more than 15 years, and prob. had symptoms similar to your dad's starting about the same age. He lived alone in his own place (a two-story condo) for at least 10 years post-dx, then lived in his own apartment in an assisted-living place until his death. He prob. should have transitioned to assisted living a year or two earlier than he did, as the reason he went to assisted living was a bad fall that left him unconscious on his kitchen floor for three days. If a neighbor hadn't noticed he wasn't coming out in the morning to get the newspaper, that would have been that. By the end of his life, my dad was using a walker most of the time. He tired easily, but was still as mentally sharp as ever (he spent his career as a research scientist). He was not unhappy with his situation, or his quality of life. If he'd made a few different choices toward the end, (disclosing the swallowing issue, switching to a diet of soft foods), he'd likely still be alive, but he had quality-of-life preferences that were more important to him than living forever. I respect that--there comes a point when I think we all get to make our own choices regardless of what others might think we should do. My point: PD affects everyone differently, with different rates of progression and different prognoses. Fortunately, 'declining rapidly' doesn't really happen. My dad had PD, and my sister and I have PD. It's different for all of us. The choices your dad is making sound very reasonable.
  5. ShopGuy

    Diagnosed at 40 very scared

    @ waruna01 (and apologies to Debsten for going slightly off-topic on your thread), Although I'm sure you mean well, and I'm happy for you that your self-diagnosis of PD was incorrect, I think your focus on loss of smell is misplaced. In my own case, I've been diagnosed with PD for over three years. Initial dx was by an experienced MDS, with positive DATscan last year as part of a clinical trial. I have movement symptoms that while mild, are absolutely classic presentations of early PD. And guess what? I still have my sense of smell. Having cooked professionally for a number of years, trust me--I would have noticed if it was going away. I asked my MDS about this. His response was basically a shrug: Sure, lots of people with PD lose their sense of smell, but some don't. In his opinion, there's a lot better diagnostic tools than having someone sniff a banana. This is a guy who did his MDS fellowship at a top PD research center, is currently conducting 3-4 clinical trials, and is part of a practice with (IIRC) more than a thousand PD patients. More to the point, there's all sorts of reasons a person with PD might want an early diagnosis. First, for many of us knowledge is power. Knowing what we have gives us choices about what to do about it, and how to plan for the future. For someone affected by non-moter symptoms such as anxiety or depression (and those of us with YOPD are especially vulnerable), knowing these feelings are caused by the same lack of dopamine that causes motor symptoms can be a lot more comforting than trying to figure out why mental health issues seemed to have suddenly come out of nowhere. For motor symptoms such as tremor, rigidity, and slowness, early treatment with PD meds can provide mild-to-significant relief. That can make it easier to exercise, be positive about the future, even forget from time to time that you have PD. The evidence is, because PD is progressive, whatever current level of relief a person gets from meds, that effect will always be *less* down the road. You can't hold off meds until 'things get bad' and expect meds to have the same efficacy they would have early on. PD isn't a death sentence. I'm healthy, active, work full time, and expect all that to continue for years to come. In my case, early diagnosis gives me an incentive to make sure these years count (more travel, more doing now what I had been putting off for later), and do some planning for the future that everyone should be doing regardless (e.g., saving more for retirement). Knowing the choices I have, and making choices with regard to things I *can* control, makes it easier to accept the things I can't control.
  6. ShopGuy

    What drugs? supplements like inisine?

    Hi Hiker, Any FDA-approved medication is going to have a list of side effects. For most medications (especially the meds we wind up taking) that list is going to be long, and plenty of the side effects will sound pretty scary. That doesn't mean most people taking the med will experience a particular side effect. Like many here, I take Azilect, and have done so for several years. Side effects for me are mild to non-existent--sudden sleepiness isn't one of them. Desired effects are also mild (to nonexistent?), but that's another issue. I've also taken an agonist in the past (may restart), and didn't experience any of the 'scary' side effects. But I know people who have. Inosine is potentially interesting, but prob. not something you should try without medical guidance. Inosine raises blood urate levels, and while having levels in a certain range may result in slower progression, if levels are too high, side effects include kidney stones and gout. My MDS is the physician for one of the inosine Phase III studies. We discussed starting me on inosine (I didn't qualify for the actual trial). After testing, it turned out my urate levels were already at the levels inosine treatment aims for. Had I just started inosine on my own, without any testing or monitoring, I could have easily pushed levels too high and suffered the consequences. I've had friends with gout and kidney stones--no thanks!
  7. ShopGuy

    Rasagiline and other drugs

    I take azilect (now generic)--no issues with balance, instability, or anything like that. And I do a fair amount of hiking. There's some reasons to think azilect will slow progression--in my case, symptom relief from azilect is modest (at best).
  8. ShopGuy

    daTscan side effects

    Do you have a g-i reaction to eating shellfish? If so, the iodine you had to drink before the scan may have caused an issue.
  9. ShopGuy

    23 year old female worried about PD

    Depending on how you look at it, it isn't common for anyone to get PD. There's about a million people w/ PD in the US, out of a population of about 325 million--about 1/3 of 1% (1 in 325). PD is most prevalent among people 70 and older--even in that age group, only about 5% (1 in 20) have PD. As stump notes above, people younger than 50 when diagnosed (a frequent definition of young onset) are only about 5-10% of PD population. Put it this way--my GP has been in practice for decades, and has seen thousands and thousands of patients in his career. As far as I know, I'm the only patient with YOPD he's ever had. It's fair to say PD in people younger than 30 is very rare. When symptoms are consistent w/ anxiety (or bad reaction to meds, such as some antidepressants), that's a much more likely diagnosis. More to the point, in the extremely unlikely event you do have PD (and I agree with stump and Patriot--'twitching' really isn't a typical PD symptom) how would that affect your life right now? PD progresses slowly, typically very slowly in YOPD. People recently diagnosed can go years and years without significant disability. I was dx'd three years ago, and expect to be hiking, climbing the occasional mountain, and working to full retirement. Best advice would be: exercise more, eat better, start a retirement account, maybe purchase long-term care insurance (it's cheap when you're in your 20s). Try to relax and have some fun. All things that are good ideas, PD or not.
  10. ShopGuy

    Levodopa not really working

    Dopaminergic meds never did much for my tremor, and as others have indicated, that's not unusual. If need be, I can usually use relaxation methods, mental focus, and/or a bit of movement to temporarily stop the tremor. Your partner's probably figured out how to do the same. I understand this gets harder as PD progresses. In my view, it's easy to put too much emphasis on tremor as *the* PD symptom--IIRC, there's even some evidence tremor is a sign the brain is using alternate pathways to allow more or less normal movement. Certainly, tremor-dominant PD has better prognosis (slower progression) than other forms. I think most folks w/ PD (myself included) find stiffness, slowness (bradykinesia), and dystonia more troubling than tremor. Not to mention balance and gait issues, and non-motor symptoms. Is your partner's tremor currently causing impairment or disability? Or is the primary issue that it makes it visually obvious he has PD?
  11. ShopGuy

    Nilotinib trial recruiting

    https://foxtrialfinder.michaeljfox.org/trial/4999/ Phase IIa trial of Nilotinib is recruiting at a number of locations. This is the leukemia drug that caused quite a bit of excitement a year or two ago. My MDS is one of the study doctors. I don't qualify, as it appears this trial requires patients to be on levadopa at least 30 days prior, but others here might be interested.
  12. ShopGuy

    Just diagnosed at age 40

    Hi amy2beth and Kat2017, Dx'd at 46, 3 years ago. As others have said, PD progression is generally slow, with young onset typically even slower than later onset. We are fortunate, I believe, in that we have time to come to terms with our situation. Michael J. Fox has some things to say about acceptance I find helpful (and hopeful). PD's different for everyone, but in my case, there's not been much change in symptoms over the last three years. I work full time and, at this point, expect to continue until full retirement. I'm also doing some things now (travel, etc), rather than putting off what I may have less ability to do or enjoy later. Exercise is huge--with the best exercise being something you enjoy enough to keep doing. When the initial shock wears off, there are a lot of opportunities to get involved in PD research, from surveys, to genetics studies, to clinical trials. For me, being involved in research feels like taking an active role in my future, rather than passively waiting for (or fearing) what's to come. Best, David
  13. ShopGuy

    Update to meds

    Hi Stump, Thanks for the update. The word-finding issue sounds a bit troubling--interested to hear what the exercises are and how helpful you find them. I lose a few words from time to time--post-dx, it's hard not to wonder if it's a PD thing. Shortly after dx, I participated in a research study that included a battery of cognitive testing, two days worth IIRC. Was able to share results w/ my MDS; we figured it would be a good baseline for comparison down the road. Clinical trial I just completed included a short cognitive test about every visit--a couple of drawing tasks, some memory stuff, name-the-pictures like you mention, and the 'every noun starting with the letter _ in one minute' thing. Really hate that last one--I assume I did well enough at it, as my MDS never said otherwise, but feel pretty incompetent under that kind of pressure, regardless. Gets the tremor going, too. Re: DBS. It may be a few years off, but closed-loop machines seem very promising. Basically, the stimulation is continuously modified, in response to what is going on in the brain. Some details here (more specific to cortical stimulation than deep brain, but covers that, too): http://www.sciencedirect.com/science/article/pii/S1388245714000376#b0170
  14. ShopGuy

    Phase 1 Trial of New PD Treatment: My Experience

    Quick update: At the beginning of October, I had the last of my study visits for the BIIB054 Phase 1 clinical trial. Still have no idea if I received active drug or placebo. Overall, the experience was rewarding and worthwhile, and gave me a lot of insight into the process of getting drugs out of the lab and into clinical practice. I was impressed by the enthusiasm and hard work of everyone at the trial center, at every level. I never felt like an anonymous research subject, let alone guinea pig. For the time being, I've decided not to resume Neupro (dopamine agonist). I've been off it since March, with only slight increase of symptoms, all mild and manageable. So for now, I'll rely on Azilect and exercise as sole PD treatment. Phase 2 trials of BIIB054 have been announced and will be recruiting soon. For whatever reason, eligibility criteria have been tightened, and I won't qualify (3 years or less since dx, no current PD drugs, no previous treatment with levodopa or agonists longer than 30 days). For recently diagnosed PWP who may qualify for the Phase 2 trial, info is here: https://clinicaltrials.gov/ct2/show/study/NCT03318523#contacts The trial is somewhat invasive, with some uncomfortable procedures, and requires quite a time commitment. But immunotherapy drugs (like BIIB054) represent a truly new approach to treating PD, perhaps the first in a generation. With good recruitment for clinical trials, and continued successful results, it may only be a few years (less than five?) before we see one or more drugs that stop or radically slow PD progression on pharmacy shelves. As a side note, my MDS is also involved in Phase 2 testing of Nilotinib, the leukemia drug that made big news a year or so ago when a small Phase 1 open-label study showed remarkable results in late-stage PD patients. Since Nilo is already FDA-approved for leukemia, positive results for PD means the drug will be available to PWPs very quickly. For PWPs with the most advanced symptoms, including near immobility and serious cognitive issues, this could be huge. It's easy to be cynical and say a cure for PD has been 'right around the corner' for decades. 'Cure' is a strong word, and probably none of these drugs are that, but I believe there's more reason that ever to be hopeful. We're likely on the verge of major advances in PD treatment that haven't been seen since DBS was introduced 20 years ago. If all this pans out, I'm glad that, in whatever way, I had some small part in it. P.S. Lonnise, I just finished 'Being Mortal' the other week. Remarkable book. Thanks so much for the recommendation.
  15. Last Friday, I finished the five-day inpatient portion of a Phase 1 clinical trial for BIIB054, an immunotherapy treatment for PD being tested for the pharmaceutical company Biogen. Details of the trial (still recruiting at some locations, I believe) are here: https://clinicaltrials.gov/ct2/show/NCT02459886 Overall, the experience of participating in the trial has been very worthwhile. As the saying goes, there were stretches of boredom punctuated by brief moments of--okay, certainly not terror--but heightened anxiety. To prepare for the trial, I was required to stop some medications, and undergo blood and urine tests, an EKG, an MRI, and a DaTScan. Blood, urine, EKG, and MRI were to confirm good health (apart from PD); the DaTScan confirmed my dx. Cost of all testing (including DaTScan) was covered. Infusion of the study drug was done during a five-day, four-night inpatient stay in a research clinic. The study drug (or placebo) had already been administered in higher doses to 40 volunteers without PD, and a handful of volunteers with PD, with no significant side effects. My MDS is one of the study doctors--I felt the potential benefits for research and for myself outweighed the modest risks. I was well compensated for travel and time, and the catered meals were *far* better than hospital food. Day 1 was a battery of blood and urine panels, plus multiple EKGs, blood pressure readings lying down and standing up, MDS exams, and collection of cerebral spinal fluid via lumbar puncture (spinal tap). I was more than a little nervous about the spinal tap, but it turned out to be much less of a big deal than I imagined. Very little pain (just a little poke from the lidocaine injection, and a bit of pressure when the needle went it). After that, I was hooked up to radio telemetry to continuously monitor heart rate for the next 48, and spent the next several hours in the clinic's waiting room. By the evening, when we moved to the clinic annex where the bedrooms were located, I had a fair amount of discomfort in my lower back. This may have been a reaction to the lidocaine. I was given ibuprofen, which provided good relief, and was fine the next morning. There was another volunteer participating in the trial at the same time--that, plus books and internet, was a good distraction from a whole lot of sitting around waiting for the next blood draw, the next EKG, etc. Day 2 was infusion of the study drug (2/3 chance, two possible doses) or placebo (1/3 chance). Infusion was via IV and took about an hour. Some combination of fasting, lying flat on my back for an hour and who-knows-what caused pretty bad heartburn during the last 15 minutes of the the procedure. When I mentioned this, I was given immediate EKG and had blood pressure checked to rule out possible complications. For the rest of the day, we had regular blood draws to monitor the drug as it moved toward and crossed the blood-brain barrier. Day 3 was more of the same. The telemetry came off, and by afternoon, we were given the chance to take a shower and get out of the clinic for a few hours. I met up with a friend in the area and we went for a hike in a nearby park. Good to move the legs after 2 1/2 days sitting. Day 4 was another MRI in the morning, more routine blood draws and EKGs, plus another afternoon release (for good behavior?) On Day 5, when the results from the MRI came back, we had final MDS exams, and were released. There will be a series of followups over the next 16 weeks, including two more spinal taps and another MRI. I was told BIIB054 isn't expected to offer symptomatic benefits, but may (if it works, and if I got the active drug) slow progression by 4-5 times the rate without the drug. As I understand it, the drug is an antibody engineered to bind with the clumping form of alpha-synuclein, and clear it from the brain. The 'moonshot' (as my MDS put it), is that the drug will prevent the formation of Lewy bodies, and even reverse some disease progression. Needless to say, everyone at the clinic is very excited about this trial (and very appreciative of the patient volunteers). Given the lack of negative side effects, a Phase 2 trial is expected very soon (perhaps this fall), and it appears Phase 1 patients will also be eligible for Phase 2. I don't know if Phase 2 testing will be as invasive or require an inpatient stay. We often hear that new drugs take a very long time to pass human trials and get released to market--what I heard from clinic researchers was that with good recruitment and positive results, new drugs can be released quite quickly, perhaps 4 years or less from initial human testing. I feel fortunate to have an MDS committed to active research as well as top-notch patient care, and clinical research facilities located relatively close by. In fact, my MDS will be conducting Phase 2 trials of the drug Nilotinib soon. I don't know if I'll qualify, but it's exciting having cutting-edge stuff happening so close to home. Finally. a little soapbox: with a number of promising PD treatments in the pipeline, this is an excellent time for PWPs to get serious about research, by volunteering for trials (not for everyone, I know), and/or by contributing to organizations that support research (like the Fox Foundation), and advocating for increased support and funding for basic research through NIH and NSF. The basic research underlying all these new treatment has been twenty years or so in the making--too long a horizon to payback to expect private companies to do it alone.
  16. ShopGuy

    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.
  17. ShopGuy

    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.
  18. For the past couple months I've been trying to swim regularly as part of my exercise program. Started out with the Master's Swim program my wife does but 5 am starts didn't work for me, so now I swim laps on my own during my lunch hour, two days a week. The problem is, my legs sink. Nothing I've tried seems to fix it. As swimmers know, sinky legs=lots of drag, and I can't go more than 50 yards without having to stop for a rest. Using a pull buoy, I can easily go 3 times that far before a break, and the swimming is actually enjoyable, rather than frustrating. When kicking, it often feels like my legs aren't working quite right, leading me to wonder if the increasing stiffness in my left leg as my symptoms progress isn't part of the problem. On the other hand, days I don't swim I try to get in a 4-5 mile walk, and stiffness hasn't seemed to affect that at all. Any SWPs (Swimmers With Parkinson's) out there who can provide advice? Do I just need more time to develop better swimming technique ( this is what my wife suspects) or can I expect improvement when I start PD meds (something that is looking like sooner rather than later in any event)? --David
  19. 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.
  20. 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.
  21. 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.
  22. ShopGuy

    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.
  23. ShopGuy


    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.
  24. ShopGuy

    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.
  25. ShopGuy

    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.