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    • #16971
      Andrew L.
      Participant

      Anyone heard of this? May be grasping at staws…

      • This topic was modified 10 months, 2 weeks ago by Andrew L..
    • #16973
      Jean Mellano
      Participant

      Andrew. Where is this from?  There is such a thing called light therapy,

    • #16978
      Jean Mellano
      Participant

      hi andrew, see my article where i provided links about photobiomodulation:

      https://parkinsonsnewstoday.com/2019/06/11/sinemet-has-left-the-building/

    • #16980
      Andrew L.
      Participant
    • #16984
      Jean Mellano
      Participant

      so it sounds like a combo of light and sound therapy. not sure about a drug that treats prostrate issues and high blood pressure though…  but, you never know… we are all searching for that holy grail to relieve our symptoms and slow  progression.  i have a feeling that grail, if it exists, may be different for everyone.

    • #16997
      Andrew L.
      Participant
    • #16999
      Jean Mellano
      Participant

      andrew thnx for sharing. i probably skipped over that article as soon as i saw prostate. 🙂

    • #17019
      Joel
      Participant

      There was a report earlier this year of an MIT study in which amyloid plaques were reduced in mice by light strobing at 40 Hz, and they were reduced even further by a combination of light and sound: https://news.mit.edu/2019/why-visual-stimulation-alzheimers-0507

      The study was specific to Alzheimer’s, but since the mechanism seems to be the effect of the frequency on amyloid plaque formation, it is of interest to Parkinson’s patients, too.

    • #17021
      Jean Mellano
      Participant

      Joel, thnx for this link..I have heard that once a cure is found for ALZ , it wouldnt be long before a cure for PD s available and visa versa

    • #17218
      Ruth MacKenzie
      Participant

      Hi,
      My GP suggested I research the 40HZ sound waves because of the apparent affect in our brains, causing more activity. She wondered if the sound waves could be directed to the cells (neurotransmitters) affected by the unresponsive dopamine producers/transferrers, and assist them to return them to their original, working state.
      Unfortunately, I found nothing that specifically pertained to PD. However, I will keep looking, since new methods etc, are being developed every day.

    • #17219
      Jean Mellano
      Participant

      Ruth, plz keep us posted on what you find.  i am all for any treatment that is NOT pharmaceutical.

    • #17221
      Andrew L.
      Participant

      I am doing an unscientific (i.e. not a controlled double blind study and a sample size of one) clinical trial on myself doing this with synchronized flickering light and sound at 40HZ. Just finished the logistical part of it, good to go starting today or tomorrow. Plan is 1 hour per day. As Jean pointed out the research appears to be for Alzheimer’s , however in my admittedly limited understanding the plaques are the same, just in different places in the brain in P.D. vs. Alzheimer’s. Anyway, will provide more feedback on this going forward if anyone is interested.

    • #17223
      Jean Mellano
      Participant

      andrew, i would love to hear of your experiences with your trial.  good luck!

    • #17247
      Gail Dons
      Participant

      I followed most of the links y’all gave, as well as the links to other publications that were supplied in some of the articles. I did not see any significant scientific study supporting either light or sound as an agent for neuroprotection (the Holy Grail).There was that article which described a project that people intended to do, and the small size one where data and conclusions about improvement were based on study participient’s self-evaluation. And then there was the article that seemed to be based on the premise that much of Parkinsons was caused by toxins. There was also the one on mice neuroblastoma cells where the end point was “cell survival”, accompanied also by results on the movement of mitochondria in mice brains (these latter 2 were in vitro studies, which means the cells being studied were not even in the mice – they were in cell culture dishes) There was also the report of a case study….etc, etc.
      Bottom line: All very interesting. Neither light nor sound Tx seem to have any significant side effects (unless you have trouble with modern rock music!) Some day one or both of then may show promise, but look at all of the other treatments and medications that have looked so promising in case studies and mice research, yet they didn’t stand up to the rigors of Phase 2 and Phase 3 testing. Don’t rush out and make/buy your infrared helmet this week – it’s not yet ready for Prime Time!

    • #17253
      Jean Mellano
      Participant

      Gail, I am open to anything that is non invasive, no known side effects,not a lot of investment and does not appear to  be a scam.   I have spent a small fortune on Rx drugs, to no avail.  I have been doing the infrared helmet since May and I believe it may be helping my sleep, although I cannot say for sure.  Until the cause of PD can be identified, I dont think we will have an effective treatment for all of us. That is why I have donated my brain to PD research so that others may benefit in the future from what may be learned.

    • #17254
      Gail Dons
      Participant

      <p style=”text-align: right;”>You’re absolutely right, Jean. Because Parkinson’s is such an individualized disease, there certainly is no harm in trying new things that are inexpensive and have a low possibility for side effects.   However, I want to encourage people to carefully evaluate the type of information they are being given before jumping on <u>any</u> bandwagon. It is the only way to tell scams from valid therapy options, from those treatment possibilities that are too early to tell. It helps you set your expectations, and also keeps you from being taken for a ride by those who seem to have no compunction about making false or unsupported promises for their own monetary gain.</p>

    • #17255
      Joel
      Participant

      Andrew L., do you have any guidance for the technical part of the experiment; i.e., an easy way to make a light strobe 40 times a second?

      Has anyone found any indication that one part of the light spectrum might be preferable to the rest? (There is mention here of infrared, and I know there are general claims of benefits from infrared light, but I haven’t read of any connection to Parkinson’s and would be interested in any links.)

    • #17256
      Andrew L.
      Participant

      Hi Joel; am personally unaware of the benefit of one part of the light spectrum vs. another till I saw it here. As for the “experiment”- I was all set to hire an electrical engineer to wire my house when I found a program (app) that works on certain types of I -pads that have a minimal refresh rate of 120 HZ. Sound and cognitive exercises included in the app as well. I do not want to advertise for hardware / apps that cost money but If u r so inclined U could look at Alzheimer’s apps in the App Store and find it yourself …the app explains  the hardware specifications . Note . I believe there is a phase 1 clinical trial at mit on this going on now but for Alzheimer’s, not Parkinson’s ..ar any rate On 1/6 I will be getting a world expert opinion on whether there is anything to this or if  it is just another scam. Will post more then tho I couldn’t wait and have started it already, figure If nothing else the cognitive exercises would he potentially helpful.

    • #17257
      Jean Mellano
      Participant

      Hi Joel.
      This article mentions the light wavelengths of the device I am using:

      https://www.liebertpub.com/doi/abs/10.1089/photob.2019.4663

    • #17258
      Jean Mellano
      Participant

      Gail

      i get so weary of hearing about ‘cures’ and the fact people make outrageous claims about some herb or supplement can cure pd sickens me.  To take advantage of people with a progressive incurable disease and prey on their hopes and fears is despicable.

    • #17259
      Joel
      Participant

      Thanks, Andrew L. and Jean. The app and the link are just what I was looking for.

    • #17260
      Gail Dons
      Participant

      Joel, Jean’s article gave some good links to follow for information on photomodulation with NIr. And those have further links to track down. . Here see several to get you started:

      Red and near infrared light treatment, helmet based
      https://www.abc.net.au/news/2019-02-24/clinical-trials-for-wearing-led-helmets-treatment-parkinsons/10836906?pfmredir=sm

      Great review of NIr as therapy, poss neuroprotection for PD. Discusses intracranial vs extracranial treatment.
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4707222/

      Discusses helmet construction, and also refers to more specific wavelegfsz
      https://www.abc.net.au/news/2019-02-24/clinical-trials-for-wearing-led-helmets-treatment-parkinsons/10836906?pfmredir=sm

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