My experience: I first started having... - Cure Parkinson's

Cure Parkinson's

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My experience

MN1066 profile image
MN1066

I first started having symptoms which I identified as probably being Parkinson's symptoms in approximately November 2019. ( I am now aged 62)

From no recognisable symptoms I had quite a rapid increase in tremor intensity over about four months (in both right leg and arm which was quite disturbing) plus a loss of intensity of sense of smell plus other minor symptoms (tightness of jaw ligaments, tingling in the face, some constipation, intense anxiety, poor hand writing ).

I had noticed that I had a slight loss of smell prior to any other symptoms, plus poor handwriting.

When I first started using the red light helmet (The first one being from the Dorset men's shed in Tasmania) I noticed an improvement in my sense of smell within two three weeks of use (twice daily) plus a very significant reduction in anxiety levels.

I have now been using the red light helmet (Coronet type) now religiously twice daily for approximately 15 months plus regular exercise swimming 3-4 times per week ( 14 - 16 laps of Olympic pool as fast as I can go) and bike riding 40 km once a week or so and all symptoms are greatly reduced (tremors now only very minor, jaw ligament tightness only very occasional, anxiety low, constipation now only slight)

I have been prescribed madopar by my neurologist and take this three times a day at 25mg levadopa / 6.25mg benzeraside plus a teaspoon of mucuna powder with each dose.

i also have green tea to wash down the mucuna powder

( I have not discussed this bit with neuro

Certainly after his scoffing at the matter of redlight helmet!)

I have recently trialled no dosage of either madopar /mucuna and didnt get much of an increase in symptoms.

will try this again in a few months.

Having also read the book by Professor Mitrofanis :Run in the Light, I am pretty comfortable with what I have now done and the progress being made with this condition.

Intense regular exercise and religious application of the redlight morning and night

Also limiting alcohol plus good diet plus anti oxidants (green Tea and vegetables)

15 Replies

Well it looks like you have made some good choices regarding your PD treatment. I am thinking about getting the Coronet helmet for my HWP. How close to bedtime do you use the helmet? I need to look up some research (other an anectodical) or he is going to think I am nuts to try this. God Bless!

MN1066 profile image
MN1066 in reply to Sydney75

The research text "Run in the Light" that I referred to covers the research in quite a lot of detail. also there are a lot of research articles onlineI use the helmet as soon as I wake up in the morning and at about 4-5 in the afternoon.

The first wavelength light used to make me go to sleep however this happens less so nowadays.

It does feel a bit like wearing a tinfoil helmet or being a bit of a UFO spotter however.

What is HWP?

grower profile image
grower in reply to MN1066

I believe it's Husband With Parkinsons

So pleased to hear about what you are doing and clearly what is helping you. Lots of discussion on Red Lights on here. Our Neuro listens to all that my husband is doing and the most recent time, a few weeks ago, he was surprised at how little Madopar he is taking after about 9 years of PD. I’m impressed with all the exercise you are able to to do! Brilliant 🤩!

MN1066 profile image
MN1066 in reply to Zella23

So far it is working for me and hopefully is of some use to somethanks and regards

Your description of symptoms sounds exactly like mine, including my experience with the duo coronet.

MN1066 profile image
MN1066 in reply to Missy0202

That is very interesting to hearCan you expand on your experience and current status re exercise and medication?

Missy0202 profile image
Missy0202 in reply to MN1066

I am taking Sinemet 25/100 3 x a day and a handful of supplements that I would be happy to share if you are interested. I will send you a PM with the rest :)

Try avoiding the Green Tea for a week, see if the medication works better... I tried Green tea, felt worse.

#1 did you get a reduction in your tremor(s) and if so at what point? BOTH LEG AND HAND?

#2 did your handwriting improve?

#3 why did you switch to the Duo? at what point?

#4 when did you start (from Nov 2019) the red light?

sharon

MN1066 profile image
MN1066 in reply to sharoncrayn

In response to your questions:#1 It was apparent that the tremors had reduced after 3-4 months but I was only confident that there actually had been a consistent improvement after about 6-8 months. because the tremor intensity varies with stress etc

for example at its worst I found it difficult to drive my Ford ranger utility with my right foot in the normal position without the car rabbit hopping due to my foot tremor on the accelerator.

that is no longer an issue.

there is still a minor tremor or a tremor sensation that I can get in both arm and leg but not significant. It is still exacerbated by stress (social situations).

#2 yes the handwriting has improved. It had become very sloppy over a number of years, it still isnt brilliant without a lot of effort

#3 I switched to the duo after about 3 months because the pulsing light was reported to be more effective and it also turns itself off after the set period (12 minutes each wavelength I think) this helpful if it causes sleep

#4 I started using the red light helmet in about March 2020, after learning about it researching the condition.

I believe that the best result is achieved from intense regular exercise supported by the red light helmet. That certainly appears to be what research has already found.

I have lost a lot of weight from the exercise and feel better for that anyway. The start of symptoms coincided with me retiring from work so that made achieving the exercise level a lot easier

sharoncrayn profile image
sharoncrayn in reply to MN1066

thanks so much. very interesting in how long it took (6-8 months) to see significant results..

#5 what were your 3 big take-aways from reading "Run in the Light"?

FYI ---

How and why does photobiomodulation change brain activity?

John Mitrofanis, PhD* and Luke A. Henderson 2020

see also from his earlier work --- "We used "buckets" lined with light-emitting diodes (LEDs) of wavelengths across the red to near-infrared range (i.e., 670, 810, and 850 nm; n = 5) or an homemade intranasal LED device (660 nm; n = 1). Progress was assessed by the patients themselves, their spouse, or their attending medical practitioners.

Results: We found that 55% of the initial signs and symptoms of the six patients showed overall improvement, whereas 43% stayed the same and only 2% got worse. We also found that PBM did not target a specific sign or symptom, with both motor and nonmotor ones being affected, depending on the patient.

Conclusions: In summary, our early observations are the first to note the impact of PBM on patients' signs and symptoms over an extended period, up to 24 months, and lays the groundwork for further development to clinical trial. "

more importantly ----

"When taken together with previous findings, we suggest that the impact of photobiomodulation becomes much clearer only after brain circuitry is altered, for example, after a neurone undergoes some change in its equilibrium or homeostasis, either during pathology or ageing, or during a change in functional activity when individuals are engaged in a specific task (e.g. evoked brain activity). "

TBI, ALZ, PD, etc.

sharon

MN1066 profile image
MN1066 in reply to sharoncrayn

In response to your question #5key takeaways for me:

- the idea of the evolutionary origins of the photochemical response

- an explanation as to why direct sunlight in the morning feels so nice and the longer light pathlength through the atmosphere in the morning and afternoon vs UV light levels at midday

- the challenge of acceptance of a scientifically sound concept by the medical fraternity (which is sort of interesting as the concept of photosynthesis seems to be well accepted as a scientific fact!)

-when considered with the concept of neuroplasticity it provides great reason for hope for the future for those afflicted.

As a scientist myself I found it particularly useful and a great read, when also considered alongside the books by Norman Doidge.

Regards

sharoncrayn profile image
sharoncrayn in reply to MN1066

I bought "the BRAIN THAT CHANGES ITSELF" years ago. never finished it, but the beginning tongue strip with electrodes story got my attention. as did TMS later on in his book. some connection between tPBM and rTMS in terms of "pulsing".

Excellent share, very encouraging. Thank you.

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