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ShopGuy

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ShopGuy last won the day on October 17

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  1. 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).
  2. 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.
  3. 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.
  4. 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?
  5. 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.
  6. 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
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. STEMCELL TREATMENT

    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.
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