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01-29-2012, 05:53 PM | #1 | |||
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http://pemf-parkinsons.blogspot.com/
Real or placebo? BTW, How do cells that are destroyed produce a placebo effect? |
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03-26-2014, 04:54 PM | #2 | ||
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Junior Member
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I wanted to pick this thread back up and inquire whether anyone has had experience using PEMF (Pulsed Electromagnetic Field Therapy) or rTMS (Repetitive Transcranial Magnetic Stimulation) for Parkinson's.
** there were some moderately promising studies (albeit with small sample sizes) in the 1990s: ** What I can't understand is why there aren't more recent studies. Has this possible treatment been discredited? Or is there information somewhere that I'm just not seeing? Another thing that's really confusing to me is how someone who wanted to try PEMF would find the right intensity (measured in Hz, I think) and magnetic field strength (measured in Tesla). And how would they know where to apply the PEMF on their body? There seem to be full-body devices, such as a mat, and there also seem to be devices that would allow the user to target a particular part of the body. I'm looking for ideas for my mother, who was diagnosed with PD five years ago. She's doing pretty well, but recently experiences uncomfortable side effects with Sinemet (dyskinesias that include shortness of breath and restless legs). If this PEMF treatment could provide even a bit of relief, I think it would be worthwhile. Any insights, clues, or personal experiences would be so very much appreciated. Many thanks in advance, and best wishes to all. Last edited by Chemar; 03-26-2014 at 05:07 PM. Reason: sorry but you are not yet able to post links or any form of website redirects |
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03-27-2014, 10:19 AM | #3 | ||
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Magnate
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Quote:
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03-27-2014, 01:30 PM | #4 | ||
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Quote:
She recently switched doctors, and both of the doctors agree that she has PD. She is 67 and was diagnosed about five years ago. She does not have an obvious tremor, but feels internal tremors, and feels shaky and weak. She does have the typical stiff gait of Parkinson's. She seems to respond to meds well -- when she is "on," it is not at all obvious that she has Parkinson's. She has some annoying digestive issues which seem to be part of PD, and she does not sleep well. So overall, it's probably not a severe case, and we have a lot to be thankful for in that regard. In addition to the medicines, she has done some acupuncture and qigong, which both help somewhat, and takes some supplements, including folic acid and magnesium (for restless legs), calcium, fish oil, and vitamin D. She is also trying the coconut oil but it seems to be bothering her stomach. She tried glutathione but it didn't really work. We have a phone consult next month with a doctor (MD, not a movement disorder specialist though) who uses PEMF to treat various conditions. If anything useful comes out of that conversation, I will report back to the group. Best wishes. |
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03-27-2014, 03:23 PM | #5 | ||
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Magnate
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I don't think your're going to find the "magic bullet" in alternative therapies but best of luck. Taking sinemet gives the best relief in advanced patients but you have to worry about dyskinesias and carefully watch when and what you eat because of protein interference. One regime that works for me and others is to take a 25/100 tablet plus 50/200CR first thing in the morning on an empty stomach to get a kickstart and then a 25/100 every 3 hrs with maybe an additional (1/2) 25/100 or a 50/200CR. It certainly isn't an easy drug regime to follow. I am probably undermedicated later in the day but that's my choice.
I know a number of advanced pd'ers that have done fine for years on a combination of sinemet, comtan, requip and amantadine, met them at a spinning class that they attend 3 times a week. |
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03-27-2014, 04:25 PM | #6 | ||
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Senior Member
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rainbow676,
Welcome to the forum. You've asked some great questions. As a first step, soccertese's advice to make the most of existing therapies is sound. I would stress exercise as part of that mix. But, as a second step, I think it is prudent to keep track of newly arising technologies that at a later time may prove efficacious for your mother. TMS is a promising, but unproven, technology for the treatment of PD. However, I could see a situation developing in a couple of year's time where there is a very strong case for its use as an adjunct therapy for Parkinson's. Unfortunately, it may take more years to get through the regulatory process. In such a situation you would have to decide whether to wait for the official release or to build a DIY solution. Waiting has the advantage of apparent safety, but in the reality of Parkinson's waiting has its own costs. TMS is a mainstream therapy. Its use has been approved in the UK for migraine [1]. Work is continuing on the best use of TMS for Parkinson's. For instance, Medical News reported [2] last year of work in Japan: "The 34 patients given low-frequency (1 Hz) rTMS had a 4.91-point improvement in the primary endpoint and the 34 given high-frequency (10 Hz) rTMS had a 4.71-point improvement. The were no significant differences between the groups, which the team attributes to a "substantial sham effect" concealing the true benefits of treatment." DIY approaches are described at the website of Open-rTMS [3] and at other sites on the web. Related areas to consider are transcranial direct current stimulation and spinal stimulation. I've played with building my own system using an Arduino board, but I've made little progress. I've also tried an approach using strobe lighting, both with and without pulsating sound. (My reasoning being that light generates electrical currents in the brain. It is possible, therefore, that this may be a backdoor route to brain stimulation.) Note: strobe lighting is dangerous for some people. My experience of using this approach was that it had an effect, but in the wrong direction - it increased my tremors. There are many parameters, so I think that there is still a possibility that it can be tuned to give benefit. My program can be run directly off the web at: http://www.parkinsonsmeasurement.org...ox/strobes.htm References [1] http://www.nhs.uk/news/2014/01Januar...t-therapy.aspx [2] http://www.news-medical.net/news/201...s-disease.aspx [3] http://open-rtms.sourceforge.net/ John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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