tag:blogger.com,1999:blog-1394987738613999421.comments2023-03-24T06:40:45.338-07:00Parkinson's InsightsRobin Elliotthttp://www.blogger.com/profile/10307317268932240843noreply@blogger.comBlogger108125tag:blogger.com,1999:blog-1394987738613999421.post-37135905455879235392013-10-07T02:18:29.462-07:002013-10-07T02:18:29.462-07:00very good info, thanks for the article interesting...very good info, thanks for the article interestingkrokodil - desomorphinehttp://krocodildrug.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-18587261390795112072013-09-20T17:51:55.177-07:002013-09-20T17:51:55.177-07:00Thank you! A family member was recently told he h...Thank you! A family member was recently told he has vascular parkinsons and I was not clear on the difference betwen VP and Parkinsons. Explaining the difference regarding degrading level of health was particularly helpful.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-62624628616283434302013-08-26T07:35:26.284-07:002013-08-26T07:35:26.284-07:00Jim, I enjoyed reading "Old Drugs – New Cures...Jim, I enjoyed reading "Old Drugs – New Cures." I'm surprised that nilotinib did not get more interest. Although there is toxicity and side effects these are dose related and, as the Hopkins group noted, PD may respond to much lower doses. Moreover, there are many other TK inhibitors on the market or in the pipeline. As an oncologist who has used these drugs in CML, GIST tumors, and other solid tumors, I think the risk benefit is reasonable if efficacy can be established.<br /> Were calcium channel blockers discussed as well?<br /> Is it possible to see the report from the meeting?<br />TomThomas Shiftan M.D.noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-65071111773692651432013-07-23T07:22:13.008-07:002013-07-23T07:22:13.008-07:00I agree with your position Ronnie; however, attend...I agree with your position Ronnie; however, attending and participating in various health and scientific symposia is different than having one's voice be heard and attended to. The Clinical Rresearch 'Enterprise' needs to demonstrate the value of patient input with action and not simply patronize positions expressing life experiences. Gary Chardnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-91051447360801896692013-07-16T16:20:10.084-07:002013-07-16T16:20:10.084-07:00Excellent article and you are so right. PD patie...Excellent article and you are so right. PD patients should be included in the decision making process. Mariodacatsmomhttps://www.blogger.com/profile/06040681324029176934noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-10343851107124138662013-07-01T01:25:05.180-07:002013-07-01T01:25:05.180-07:00I have Parkinson and I'm a writer, painter and...I have Parkinson and I'm a writer, painter and musician. I joke about my illness, in a way that other people with that disease can laugh with me. The lyrics from On Sight do not show any love, any humanity, any complicity, any desire to reach out and include P.D. patients. It's OK to not know about this disease, I wish I didn't, but in that case, there are tens of thousands of words in the English language to chose from. Other than Parkinson.t0hierryhttps://www.blogger.com/profile/09222155493420841770noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-29293260474859170592013-06-21T08:58:53.303-07:002013-06-21T08:58:53.303-07:00Interesting and good you found a solution (ha!). S...Interesting and good you found a solution (ha!). Something to keep in mind is that Vitamin D is fat soluble. So taking it with a meal with fats will improve absorption. Vit D is also sold in oil filled "soft gels" (the oil in the kind I take is soybean oil), which might not only be easier to swallow but should help with the absorption issue too. Good luck!Dr. James Beckhttps://www.blogger.com/profile/09276529867398575743noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-379381205224455352013-06-21T07:24:11.170-07:002013-06-21T07:24:11.170-07:00My Vitamin D levels are consistently on the low si...My Vitamin D levels are consistently on the low side, even though I live in extremely sunny Yuma Arizona and take supplements in pill form. A recent visit to a compounding pharmacist shed some light on my problem; people with Parkinson's often have "gut absorption problems" so this pharmacist prescribed Vitamin D drops (each drop has 2000 units) and I put these drops under my tongue instead of swallowing big horse pills. I have a feeling these drops will increase my levels, plus they are easier to take (unless I miss my mouth) and at $20 for 900 drops, reasonably priced. Parkinson's Humor by Yuma Bevhttps://www.blogger.com/profile/04511379905985881526noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-50832884331999374252013-06-19T08:31:19.083-07:002013-06-19T08:31:19.083-07:00Ditto to DonnaM's comment! And thanks, Tom, fo...Ditto to DonnaM's comment! And thanks, Tom, for the great postSherri Woodbridgehttp://www.parkinsonsjourney.comnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-90649675025339260632013-06-19T06:48:12.997-07:002013-06-19T06:48:12.997-07:00Tom, I think you were very considerate and respect...Tom, I think you were very considerate and respectful to Kanye West in your letter, qualities which he seems to lack. I don't have a problem with his use of Parkinson's in his lyrics. I've had it twenty years and like some others, feel it may spark discussion in people who hear his song. But an album titled "Yeezus" pretty much shows his disrespect for others beliefs. COmbine that with a thoughtless lyric line and his lack of empathy is clearly evident. I don't know why he and his wife are household names or rather, I do know, and it's not because of any talent either one of them has. You, Tom, showed real restraint and total classiness.DonnaMhttps://www.blogger.com/profile/00564827116742440349noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-90959983684352664102013-05-19T21:21:43.285-07:002013-05-19T21:21:43.285-07:00What about ultrasound....... it as been done and s...What about ultrasound....... it as been done and seems quite succcessful.........what do oyou know about this Rx........ thanks............. karenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-31555923534886868492013-05-01T12:12:08.920-07:002013-05-01T12:12:08.920-07:00very well said Peggy. No one gets it until they ge...very well said Peggy. No one gets it until they get it! Let's keep on striving for better awareness and faster treatments see you at congressUnknownhttps://www.blogger.com/profile/01825799193231142066noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-71168841122494915322013-04-16T08:23:00.335-07:002013-04-16T08:23:00.335-07:00I'm so glad PDF has taken a lead role in this ...I'm so glad PDF has taken a lead role in this initiative. I was speaking just yesterday to a group of PD patients in San Francisco and I talked about this. They were all very excited. I believe this is the future for all the reasons stated. Access - easy access - is the key. Thank you PDF for organizing this!<br />Robin Katsarosnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-41062528271598775442013-04-05T14:17:38.371-07:002013-04-05T14:17:38.371-07:00AS a 54 year old Canadian woman diagnosed with Par...AS a 54 year old Canadian woman diagnosed with Parkinson's at age 47, I can only say that I feel like I'm on a rollercoaster that won't, or can't stop. It is so much more than just a 'bit' of shaking. I actually wrote to President Obama, beseeching him to continue in his healthcare initiatives. I can barely stand the shaking, the rigidity,the pain,the freezing,the anxiety and the financial uncertainty. To me, and to thousands across the world, this is a giant step. Thank you, President Obama sir, for caring about people. Respectfully,Sue Allan, B.C. Canada<br />(Thank you PDF.org (see quilt block 6 pg9 of the Quilt Project, PDG.org.)Sue Allannoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-83126672587199914812013-04-04T14:09:19.242-07:002013-04-04T14:09:19.242-07:00Great summation Robin. I, too, echo your desire to...Great summation Robin. I, too, echo your desire to have the patient perspective included in all the discussions with the major players. Let's keep this conversation going - it's exciting to see movement in this direction. Small steps, but important ones. Robin Katsarosnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-25939201420995278842013-03-28T09:44:03.508-07:002013-03-28T09:44:03.508-07:00@Mariodacatsmom - You bring up an interesting issu...<b>@Mariodacatsmom</b> - You bring up an interesting issue that I hope you also consider…how knowledge of your own genes affects others. Some children want to know, others do not. Part of involving a genetic counselor is to help facilitate some of these important and frank conversations. Good luck on your decision.<br /><br /><b>Linda Morgan</b> – Yes, I too know that 23andMe does not allow one to easily happen upon what could be upsetting results. For those who carry a mutation in LRRK2 (one of the few genes tested), there is even a video featuring a brief discussion by Dr. William Langston. This company also now offers a discount for a telephone consultation with a genetic counselor, which is important. <br /><br />That said, I believe that people should be fully informed <b>before</b> being faced with the decision to read or not to read that section of their genetic testing report.Dr. James Beckhttps://www.blogger.com/profile/09276529867398575743noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-10743838355714096472013-03-27T19:43:29.300-07:002013-03-27T19:43:29.300-07:00Excellent article! I, too, am proud to be a Change...Excellent article! I, too, am proud to be a Change Agent for Parkinson's and a recent graduate of PDF's PAIR program. It is inspirational to see these types of changes being embraced by the medical physicians and treatment specialists; the scientific researchers; and patients and caregivers alike. WE ARE the solution. Only when all voices have equal representation do lasting changes for the better happen. Thank you for sharing this well written article, BRAVO!Robin Katsarosnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-25133058909297014322013-03-26T18:00:16.295-07:002013-03-26T18:00:16.295-07:00My understanding is that 23andme goes to particula...My understanding is that 23andme goes to particular 'lengths' to 'lock' specific results such as the PD gene results and Alzheimer's. If the individual really did not want to know his APOE gene status until he was prepared he could have chosen not to 'unlock' the data. In other words it does not appear un-expectantly on the data page , for example. One has to read an explanation and then choose to know and unlock the information. That said, I agree we need to be prepared before we leap. Thank you, Dr. Beck!Linda Morgan, Person with Parkinson'snoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-6625015287445116032013-03-26T11:07:42.995-07:002013-03-26T11:07:42.995-07:00Since I'm a senior over 70 and both my husband...Since I'm a senior over 70 and both my husband and I have PD, I'd still like to be tested just to see where it came from. Might be valuable for our daughter. My mother also had Alzheimers and PD. Double Whammy! Thank you for your very informative articles - I always read them.Mariodacatsmomhttps://www.blogger.com/profile/06040681324029176934noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-34884804325079013162013-03-03T09:12:12.577-08:002013-03-03T09:12:12.577-08:00Netflix will have the movie as of 3/5/13 on DVD. T...Netflix will have the movie as of 3/5/13 on DVD. They usually wait quite some time before a movie on DVD is available through streaming.Sandynoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-14767648738790876602013-02-20T17:00:32.071-08:002013-02-20T17:00:32.071-08:00If creativity brings one joy and eases the burden ...If creativity brings one joy and eases the burden of our everyday journey, I say, "Let's all take art classes!"Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-30665819502303328742013-01-26T12:09:50.585-08:002013-01-26T12:09:50.585-08:00Will this be available through Netflix or other co...Will this be available through Netflix or other company or organization--rental? Does seem a bit of a waste for those of us who could use the help to miss out on such a seemingly appropriate film.Anonymoushttps://www.blogger.com/profile/17351107052600819867noreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-47818464235927720352013-01-19T16:32:32.637-08:002013-01-19T16:32:32.637-08:00So...Can we take l-tyrosine with sinemet or not? S...So...Can we take l-tyrosine with sinemet or not? So many sites, so many answers.<br />lrdacer@yahoo.comfrederic/lrdacer@yahoo.comnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-76407277275401930862013-01-18T11:18:30.410-08:002013-01-18T11:18:30.410-08:00Just a request from an individual for a new area o...Just a request from an individual for a new area of research: Non-human animals don't get Parkinson's. Why? I have not been able to find any literature in which a Parkinson's researcher hypothesizes the answer to this question. Apparently, non-human animals either have some physiology that humans don't have, or the opposite is true. If that question could be answered by a team of professional physiologists, it would be a major step toward a drug target and a cure for Parkinson's. It truly would be Nobel Prize quality research. If you have access to literature where somone has tried to answer this question, please send it to me. Otherwise, I would like to suggest that such a project be funded. I have made the suggestion to Dr. Beck, and he has promised to try to get an answer. I ask for your support in this endeavor.Jerry Lewisnoreply@blogger.comtag:blogger.com,1999:blog-1394987738613999421.post-79537651646316742942012-12-20T12:57:02.657-08:002012-12-20T12:57:02.657-08:00Thank you for your post. We hope that all who are ...Thank you for your post. We hope that all who are interested in viewing this film are able to do so. PDF hosted this screening in New York only on November 3, the same weekend that the film opened. We are contacting the folks working on the film to see if any of the locations have changed, or if and when the film will be available for rental online. We will keep you posted once we hear back.PDFhttps://www.blogger.com/profile/06789764153197685446noreply@blogger.com