Infrared/Near Infrared Light Helmets & NDIS

I’ve heard some positive reports about trans-cranial photobiomodulation (tPBM), using low levels of infrared (IR) & near-infrared (NIR} light, via LED light helmets/headsets, as a form of non-invasive brain stimulation for Parkinson’s.
I am interested in trialing something like the “Vielight” and if it’s beneficial maybe purchasing one, or something similar which allows frequency/intensity to be adjusted easily and safely.
Has anyone tried these types of headsets and if so, how was their experience?
They are a little cost prohibitive to purchase, just to trial. Has anyone been able to access funding for this type of therapy and/or purchasing the equipment through the NDIS?
I live in Adelaide’s western suburbs.

Hi Michael,
I was fortunate enough to be part of the Light Trial here in Adelaide 2 years ago and I do believe it is beneficial. A few of us continued to use an at home treatment after the trial and I have to say that at a recent catch up (2 yrs after the trial) everyone looked really well.

There are a lot of research papers out there that discuss the neuroprotective effects of infrared light treatments but I think people are still sitting on the fence. You do have to ensure that you are using the appropriate wavelength (not all wavelengths within the spectrum are appropriate) however, I do believe that in time it will become a mainstream treatment ( and hopefully more affordable) Funnily enough I had a fully gut microbiome done in 2017 but I couldn’t get my neurologist to even consider it and now people are talking about how important it is. I’m still looking for a brave “Harrison Ford” Neurologist who will consider walking down an alternative path with me!!! :grinning:

The Vielight is very expensive and there is a cheaper version that you can get from Tasmania through www.wellred.com.au however, the last time I looked, that model had also gone up to $900. It would be good if we could get some funding for a couple of headsets for people to trial before they make a large investment. However, for some people, even if they saw positive results, the cost would still be prohibitive. Ideally, we need to get NDIS to accept it as a reasonable cost and maybe providing access to some trial headsets and getting some Neurologists on board could be the start of the “evidence” needed to convince NDIS of the palpable benefits of this treatment.

I have to point out that the light treatment is part of an overall care plan I follow which includes a largely plant based diet with fermented foods, exercise, antioxidant supplements, social engagement and the most important of all, meditation. It is hard to say how much of my current good health is due to the light alone but I definitely feel better since I started it. Anyway, I am also in the western suburbs so I’m happy to chat further if you like…in the meantime I’ll step off my podium!!!

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Hi Roxy,

Thank you so much for sharing your experience.

I agree, at this point, I’m happy to highlight those positive experiences in the ledger, even if they were only to lead to a one per cent health improvement. With no “cure” for this condition, “feeling good” deserves recognition, as it goes to an improved quality of life.

Indeed, the things you mention as part of your care plan might lead to improvements for anybody, with or without Parkinson’s, but with many of the symptoms experienced by PwP’s difficult to describe to those who do not suffer from the condition, let alone quantify or measure, perhaps “feeling good” deserves acceptance as an indicator for reasonable cost.

Either that, or I might have to go to my local electronics retailer to attempt a DIY version :laughing:

I would definitely like to chat more. Thank you for responding.

Cheers,
Michael

Hi,

To put a bit more clarity around the “feeling better” I have experienced better sleep, less pain, improved cognitive function, clear and flowing handwriting and a big reduction in anxiety levels. Balance is hard to assess but we all underwent balance tests and I continued to improve throughout the 2yrs.

I wouldn’t recommend trying to build your own as parts are in short supply (COVID!!) and you really need to make sure that you have the correct wavelengths and pulse settings.

I will try and get in touch maybe we can figure out a well documented argument to get this through NDIS. Have to run…but I will try and get in touch!

Hi Roxy,
Thanks for making contact with me outside the forum, your experience gave me encouragement to contact Well Red who advised that their “Duo” coronet is heavily discounted in Australia, on top of the health benefits you described.
It gave me the impetus to make the purchase. They were extremely helpful and pleasant to deal with.
The coronet arrived last Monday and my wife assembled it with my assistance, or perhaps hindrance. I have used it twice a day, as they recommend, every day since.
The improvements have made it a worthwhile investment already!
The reduction in pain is enormous! Early in the week pain was almost constant, from a tolerable, yet noticeable, level of discomfort when meds kicked in (approx. 30 mins. after taking them), to that nasty, intense, sharp sensation being present in my joints, tightness in my muscles, especially my neck and recurring headaches intensifying closer to medication time. It was at a point where I was taking double doses of my oil each day, as well as 3 ibuprofen tablets 2 or 3 times a day, which I put down to the oil & ibuprofen being anti-inflammatory (my panadeine forte had no impact).
Prevalence of a shuffling hunched-over gait, balance and proprioception issues would have me bumping into door frames and walls, and I was almost unable to move my right arm for at least an hour prior to my medication time. At my Fightback class last Thursday, I was hitting “blaze pod” targets with huge improvements (I went from my best times at hitting wall-mounted targets in the forties each set to a personal best of 61 and consistently being in the fifties each set). Friday afternoon I was feeling so confident that I was at the top of a ladder trimming back ivy.
I’m sure my wife would have noticed the improvement in my mood, and I seem to get a better quality of sleep now, waking up feeling reasonably refreshed (something of a novelty).
Not to mention my tremors becoming almost negligible.

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Good Morning Michael,

What a lovely story to start the week with!! :smiley:

I am so pleased to hear that you are already seeing benefits. I did notice an immediate difference as well when I started this treatment 2 yrs ago. But I couldn’t clearly identify what that difference was until 2wks later. Having said that, I have only been using the coronet 3 times a week. One thing I can say for sure, is that the improvements are sustained (and improving) over the 2 years. You have a lot to look forward to now my friend.

Im really pleased to hear the impact that it has had on the pain you were experiencing. That pain is like a dark hood over your head. It’s hard to see or focus on anything else and its hard to explain that nightmare to people who don’t have the condition.

I just wish that this treatment could be made available on the NDIS so that everyone who needs it (not just the one’s that can afford it) can have access to it. I would say that it it definitely a NECESSARY cost if only on it’s pain relief merits (although there are so many more benefits) to open up a better quality of life for PWP. In terms of cost, I also think it is REASONABLE. It’s a one of cost of $600-$700 that will give years of benefit. IF it lasted 5yr it would only be $120-$140 pa…hardly an excessive spend. It’s too late for you and me as we have already bought ours :neutral_face: but maybe other PWP can benefit for this discussion in the future. :crossed_fingers: :crossed_fingers: :crossed_fingers:

Please keep us up to date on your progress Michael. I have occasional assessments by a Neurophysiotheapist who measures my progress in an independent manner. Might be worth asking the guys at Fight Back to track your progress as well.

Good Luck! I look forward to seeing flameco dancing in the near future!! I’ll bring the castanets :joy:

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PS…I’m still waiting for that brave Harrison Ford Nero to jump off the fence and support this treatment…where for art thou Harrisson!!!

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Hi just reading your posts. Did you end up buying a vielight? Did you ask NDIS?

Hi,

I ended up buying the Well Red “Duo”, which is considerably cheaper and targeted more towards Parkinson’s. (You can read the benefits I attribute to the coronet in the thread for this topic. Also, Roxy’s experiences, which are positive.) Catherine & Ron at Well Red, were very helpful, great to deal with and offered considerable discounts to Australian residents.
I was fortunate enough to meet Ann and Brian, of SYMBYX Biome, at Parkinson’s SA & NT on 31 May, who were trialling their own coronet (made in Sydney - if my memory is correct).
Their coronet had a neck flap, to assist targeting the vagus nerve.
Not only are Ann and Brian extremely knowledgeable people, they are genuinely invested in developing this method of treating PwP’s. There are a range of products available on the Symbyx Biome website. They provided laser devices to people in the community to trial at our meeting.
NDIS experiences tend to vary. I leave dealing with them to my Support Coordinator and Plan Manager, as it’s much less stressful.
I hope this is helpful. Please feel free to get in touch. It may take me a while to get back to you, but eventually I’ll get there!
Cheers

Thank you for your posts on this. I think I’m going to invest in the Well Red “Duo”. I’m hoping between exercise, reducing and changing my work pattern, changing diet and working with a naturopath I can improve how I feel and my longevity!

regards