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ShopGuy

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ShopGuy last won the day on January 16

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