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Brett

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Brett last won the day on December 13 2016

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About Brett

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  1. Everyone’s Parkinson’s is so different, that I’m not sure my travel tips will be generally useful ... but I do think that is a good question, and it would be interesting to see tips from others. (Generally speaking, my travel value equation is to not always go with the cheapest price. I’m not so much after luxury, but comfort and low stress.) I’ll try to remember to come back and post some general travel tips after this trip. My observation for today is that this there is one tradition of Asian cultures that is not particularly Parkinson’s friendly ... chopsticks. People with Parkinson’s in this part of the world must have a serious struggle to eat. I’ll be curious if there is any increased awareness of this issue in Kyoto next week. We’re visiting Beijing and Tokyo enroute to Kyoto. Tonight’s dinner in Beijing was family style ... which meant, not just eating with chopsticks, but reaching across the table serving with chopsticks from shared plates. Talk about a challenge!
  2. It’s an interesting observation. Not a muscle relaxer per se, butI notice that if my gait is off, Advil or Aleve seem to bring it back... even though I don’t associate my involuntary “ministry of the silly walks” impression with any perceived pain. Sometimes, I think it can be difficult to determine what’s PD and what’s something else...or how it all relates together. Alcohol, by contrast, can be unpredictable. Sometimes it takes the edge off, sometimes it makes you feel like every step is too close to the edge.
  3. I went to WPC 2016 in Portland, and am registered for the conference this year in Kyoto. My interest is as a PwP. I’m going again, so it was definitely worthwhile. I have to say, however, that I found things on the periphery to be more interesting than most of the lectures. By periphery, I’m referring to things like the book nook presentations, and the poster area, which is an eclectic mix of research info, community programs, and people with Parkinson’s sharing their insight, experience and stories. As a caregiver, you’ll undoubtedly have a different perspective. I posted my thoughts after the 2016 World Parkinson Congress on my blog: https://parkinson.fit/reflections-on-world-parkinson-congress-2016/ - Brett
  4. Enjoy the feeling while it lasts. I still have most days like this. The phenomenon is known as “sleep benefit”...it doesn’t happen for everyone. But it is well documented as being somewhat common, and not fully understood. I wouldn’t be surprised if there was some sort of genetic connection with those who experience this. For example, COMT V158M met/met, where an individual’s genes cause dopamine to break down more slowly may be a factor.
  5. Hi Maverick, I’m 52, diagnosed at 47. Symptoms started several years earlier...but it did take 3 neurologists before I believed them when they said that it was Parkinson’s. I immediately started exercise with a personal trainer after the initial diagnosis, and have been very active with Rock Steady Boxing for the last 3-1/2 years since a local class opened. We are fortunate in the Hilton Head SC area to have an intense RSB program with classes 5 days a week. I would say that exercise is my most important therapy, but the drugs help. I didn’t always think this... I’ve been wearing a heart rate monitor when exercising for more than 2 years now, making sure that I keep pushing myself to exercise with vigorous intensity. Neither my trainer nor RSB coaches would ever have accused me of not giving it my all. But I went to a different MDS for a consultation last summer. He told me that while he could clearly see my strength and commitment to exercise, he believed that I was undermedicated. He suggested that with higher doses of C/L, I would see improvement in my exercise performance. In my specific case, he was right. I see it mostly in speed of movement, which directly impacts exercise intensity. - Brett
  6. Hi Bill, The Parkinson’s drugs only treat the symptoms. They do not have any effect on the disease progression itself. So, essentially all you are missing out on is symptom relief...and by symptom relief, I am referring mostly to motor related symptoms (tremor, slow movement, rigidity). If you don’t think you’re getting the right diagnosis, try a different neurologist, preferably a Movement Disorder Specialist (MDS). And by all means, keep up the exercise. One thing I have noticed in my 5 year journey with PD thus far, is that the meds (specifically carbidopa/levodopa) help me exercise with more intensity. I’ve been using a heart rate monitor to track my exercise for the past several years, and I did see an increased ability to achieve longer periods of vigorous intensity...and improved coordination on exercises that I was struggling with. Good luck...getting a diagnosis can be challenging. I hope the doctors you’ve seen so far are correct in not diagnosing you with PD! And whether it’s PD or something else, exercise is the right prescription for just about everything, so keep at it. - Brett (a.k.a. Parkinson.fit)
  7. Daven, I'm curious about your reference to LSVT as a 4 week program. Is there a maintenance program that follows, or you do the exercises on your own after 4 weeks? Can you share some thoughts about the program? I ask because I go to a Rock Steady Boxing class, and from my perspective, there is no end date...I expect to be in it for life. In fact, I just went through their coach training to get certified to teach their program. I have PD, but my progression has been mild, and I want to help others. I believe exercise is essential, and while RSB works well for me, I see that some others find it intimidating, or simply don't respond to its style. I'm interested in learning about other programs, because I think it is essential that all of us with PD find a way to exercise, and one size does not fit all. Thanks for any input, Brett
  8. MurrayPD2...definitely check your blood pressure in different positions, including rising from kneeling. If you have fluctuations, then you can read up on this condition. And yes, it does often involve circulation in the legs, so compression socks may be helpful. Also adequate hydration...this is the big one...drink a lot of water. I can point you to some other recommendations, but I think it's best to verify with blood pressure checks, then if it applies, read up on it to prepare for discussing with your doctor. (If this blood pressure fluctuation does apply, I did some research for a friend who has PD with OH, where I tried to summarize available info and link to good resources for more info: https://parkinson.fit/orthostatic-hypotension-and-parkinsons-disease/ ) pdmanaz...I think muscle weakness is quite common with PD. I know I had a roaming weakness in my right arm for quite some time before I was diagnosed. As mentioned, sometimes you do need rest...and PD does seem to zap energy so that more ret is required. But do you exercise regularly? I'm younger than you (50), and I'm a proponent of targeting PD muscle weakness with exercise. Stretch those muscles out, and remind your brain how to control those muscles. In PD, the brain seems to forget how to move some muscles and needs reminding. I don't know what your fitness level is. I like squats for leg muscles...that would help your thighs. But if that's too advanced, just do repeated sit/stand with a chair...repeat daily and build up repetitions. For the upper chest, chest press and flies would help those muscles. If that is too advanced, lie down and lift your arms straight up, bring them down, repeat. Standing up, bring your arms up until straight out horizontal and hold. I also like the door frame stretch...stand in a door frame, grab on to the sides, then push your body forward to stretch. Try grabbing the door frame at different angles to better target the muscle area that is bothering you. Good luck!
  9. Did you feel light headed? If so, then it could be orthostatic hypotension, which is claimed to occur in 1 of every 5 PD cases. Hypotension refers too low blood pressure. Orthostatic is a medical adjective that indicates a condition relating to or caused by an upright posture. Orthostatic hypotension is a condition in which your blood pressure falls significantly when you are standing, usually when you stand up quickly. Have your blood pressure taken both seated and standing. Orthostatic hypotension is defined as a fall in systolic blood pressure (top number) of at least 20 mm Hg or diastolic blood pressure (bottom number) of at least 10 mm Hg when a person stands. (In many cases this drop can be far more significant.) Low blood pressure causes the feeling of light headedness and can lead to fainting. This condition contributes significantly to the risk of falling and injury (as if PD doesn’t cause enough problems on its own). This might not be what you're experiencing, but blood pressure checks couldn't hurt.
  10. Believe it or not, I agree with you on both of these most recent points...with the clarification that the death of dopaminergic neurons is why there is a dopamine shortage. There is a lot of "noise" regarding the gut-brain connection...quite a lot of information out on the web, that sounds like someone made up...and then someone else repeated. The core issue is what triggers the death of dopaminergic neurons? Misfolded alpha-synuclein protein is the primary suspect. But if so, what triggers the misfolding? Or is the misfolding an unrelated side effect of something else. That is what makes this most recent Caltech study so interesting. As I mentioned, the other studies are evaluating gut bacteria as a biomarker, trying to determine if certain patterns of bacteria are associated with PD or with severity of PD. This is the first study that looks at whether gut differences could be a cause, rather than effect. The Consumer Reports article does a surprisingly good job of explaining the study, which was done with mice, and might not apply to humans. Here's the bit that quickly explains the study: At this stage, we don't know if this also applies to humans. We also don't know how or why the gut has any influence. Theories propose a yet unidentified bacteria releasing an unidentified toxin. Others suggest inflammation compromising the blood brain barrier. These are just theories. From what we have seen in other studies, probiotic strains found in supplements and fermented foods do not seem to be a factor in gut differences between PD and non-PD. So even if consuming these products do effect the microbiome, it is not clear that this would have any effect on PD progression. Consumer Reports correctly that we need to be leery of dubious claims. I shared a similar caution in my earlier post: That is my personal analysis, applied solely to myself, as someone with PD, who is not giving up without a fight. Studies suggest that I have a genetic variation that increases my placebo response...so if nothing else, I am amplifying the placebo effect with prebiotic and probiotic placebos. Or just maybe I've shifted the balance and helped preserve remaining neurons. That's a heckuva big maybe. There's no study to back this up. Proceed with caution.
  11. You might be correct. And your references provide a good counterpoint argument for effect, rather than cause. But I'd also direct you to the "Conclusion" of study [1] (https://www.ncbi.nlm.nih.gov/pubmed/21520278) that you reference: Small intestinal bacterial overgrowth is highly prevalent in PD. Gastrointestinal motility abnormalities might explain this association. There's that word might again. Even the concluding statement that you reference above uses the phraseology "could therefore be", which sounds like "might be" to me. Unlike the prat neurologist, I don't ignore these arguments. And I respect you for sharing them. Please do not take offense to my cheekiness of focusing on the word might. I simply do not see sufficient evidence to draw the same bold and underlined conclusion as you have. I think more study is required.
  12. Ah...I see it has been released on Amazon. Based upon your user handle, I assume that you are affiliated with the publisher. (That's why I noted that I have no interest, affiliation or involvement with the books I mentioned.) The content overview looks potentially interesting, but the price is a bit spendy. I don't see any reviews of this book, so perhaps you would like to share some links to reviews. Or perhaps you are looking to offer some copies to potential reviewers?
  13. While I agree wholeheartedly with Benyamin's personal perspective... I have to say that the so-called prominent neurologist at Yale sounds like he might be a myopic prat. I agree that you have to look at may/maybe/might (and anything that refers to a "model" of the disease) with a healthy degree of skepticism. But for a neurologist to not even bother to read it, might be considered irresponsible arrogance. (I threw in the "might" so he can glibly ignore these comments and continue his myopic ways.) Personally, I think the gut/microbiome research is one of the most promising areas of research. Studies are showing definite differences in the gut bacteria of PwP, and the differences are significant enough that there has to be a cause or effect link. And, if you think about it, it is interesting either way. One of the best balanced explanations of this latest December 2016 published study comes from an unexpected source, Consumer Reports: http://www.consumerreports.org/parkinson-s-disease/parkinsons-disease-and-the-microbiome/ Dr. Okun's "What's Hot in PD" article goes in to more detail, also pointing to the earlier clinical studies: http://www.parkinson.org/find-help/blogs/whats-hot/december-2016 The Finnish (Helsinki) study that Dr. Okun refers to found that those with PD have significantly lower amounts of Prevotellaceae bacteria in their gut. Unfortunately, there do not appear to be any probiotic foods or supplements that have been shown to boost this particular strain. Also, there were higher amounts of Enterobacteriaceae and Verrucomicrobiaceae in PD patients. But so little is understood about how these particular bacteria affect the microbiome, much less on whether or not any of this relates to PD at all. It should also be noted that the study group was relatively small. I attended a presentation at WPC 2016 that discussed this study and 3 others. I should stress that this presentation (and the studies) was not looking at cause or effect, the science at this stage is attempting to determine if gut changes are a biomarker for detecting PD. While the specific gut changes have not been clearly identified, the presenter did conclude: "The gut is clearly affected in PD starting from the earliest stages of the disease (probably years before motor symptoms)." It looks like anyone can access the slides at: https://wpc2016.quickmobile.center/#/event/4c8f9b66a9a829867de478f7b3fa69b3/130867/Documents/D805HCPY (Click View Document after opening the above link.) There is much more to be learned, but there is clear consensus building that there are gut differences in individuals with PD. Even Dr. Okun, who is a measured skeptic of many of the theories put forth on the gut-brain connection, states: "We do not know what causes changes in the microbiome in Parkinson’s, theorized factors include: intestinal absorption, problems with gastric motility or diet. The exact causes remain unknown." My take is that studies show that people with PD have an increase in suspected bad bacteria that tend to cause inflammation and a decrease in good/healthy bacteria that produce protective compounds called short chain fatty acids (SCFAs) that feed the cells lining your gut. Probiotic and prebiotic foods and supplements may help tip the balance in the microbiome toward healthy bacteria. Probiotics contain actual live healthy bacteria strains, which, in addition to supplements, include certain fermented foods and beverages including kefir, kombucha, kimchi and traditional sauerkraut. (Kefir and kombucha are a delicious part of my daily routine.) Prebiotics are foods that pass through the stomach to the intestines without being fully broken down, and that provide nutrients to stimulate the growth of good bacteria. Very generally speaking, the good bacteria eat dietary fiber and bad bacteria eat protein and fat. If you eat more plants and less animal protein and fat, you tend to have more good bacteria in your gut. To be very clear about this, I am not saying that prebiotics and probiotics will cure, or even help, with Parkinson's. But considering that it appears there is some sort of relationship, I think it's worth a shot. Then again, I am genetically susceptible to the PD Placebo Effect. (On the extreme end of microbiome theories, there are some who believe that fecal transplants, where fecal matter is transplanted from a healthy subject, are a viable treatment to quickly repair an unhealthy microbiome.)
  14. Looks like we have a couple months to wait for that book to be released. In the meantime, an informative read is Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease by Jon Palfreman https://www.amazon.com/dp/B00UFMDKGE There's also a free ebook that many of the participants here might be interested in, and I haven't seen it mentioned here before: The NeuroWriters’ Guide to the Peripatetic Pursuit of Parkinson Disease:Informs, inspires and is international in approach Contains expert knowledge from the viewpoint of people with PD Challenges common assumptions, envisions a different future, and advocates for change http://www.parkinsonscreativecollective.org/pdf.html I have no vested interest in either of these books, I just figure both of these books are as good, or better, resource as a book that hasn't been released yet.
  15. I just read a fascinating book, “Suggestible You: The Curious Power of Your Brain to Deceive, Transform and Heal” by Erik Vance. The first few chapters are all about the placebo effect, and how some conditions, such as Parkinson’s Disease, are particularly prone to it. A lot of this is old news to many of us, but there were also some interesting new insights on PD, placebos and genomics. I wrote an article on my blog that provides an overview of current theories about PD and placebos, and links to related info. If interested, see https://parkinson.fit/parkinsons-disease-placebo-effect/
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