Eye Guide-sharing a letter in reply to my inquiry

[Angelhawk]

I wrote to the folks at Eye Guide asking if i could get it in th US. Their reply was very thorough and I want to share it with everyone;

Thank you for contacting us, I can confirm that we are willing to help anyone who suffers with Parkinson’s disease, this however would depend on Logistics as we are a small team at the moment based in Long Sutton in Lincolnshire, which is where we hold our consultations, so this would mean finding a way to get to us as the fitting of the Guide has to be undertaken by one of our Specialist Technicians due to the precision involved throughout the fitting.

Guide can help various symptomatic areas for Parkinson’s sufferers however it does not always completely stop the symptoms but can calm them and reduce them. This is from clients Gait – walking straighter, improving posture, having more body swing, creating better balance, less shuffling and has helped with freezing. It has calmed tremors and dyskinesia (although this is very hard to combat immediately and usually improves the longer the guide is worn) and generally calms the muscles throughout the body causing less rigidity and giving a looser limbed feeling, it can also improve speech by giving more deviation of volume and less monotone projections and giving more facial expressions. But one of the main attributes of the Guide is improving the client’s wellbeing by lessening anxiety leading to better motivation and communication.

It can also give more control of body movement and help sufferers of Bradykinesia by relaxing the muscles and helping the patient become more responsive by giving quicker movement.

Each Parkinson’s client is very different and reacts differently to the Guide even if there are similarities to their symptoms, not all the above is ever achieved, however various areas do often improve and again the longer the Guide is worn the less prominent they become, alleviating the symptoms to a more manageable level.

The Guide does not offer any promises as it has not worked for everyone or achieved the level of relief they were hoping for. We have a success rate of over 80% of clients who have been fitted and benefited from the Guide giving them a better day to day existence.

Our web page again has more information about the guide eyeguidemc.co.uk

We do offer consultations free of charge, then fit the guide and allow the client to take the Guide away for two weeks to decide, this is because when a client arrives, they are often experiencing high levels of anxiety, and this can manifest symptoms to their most severe making it hard for them to gage the benefits until they are calm and relaxed in their own environment. After the two weeks the client will have the choice of purchasing the guide or sending the guide back via recorded delivery, with no other charges.

This is because Sandra who invented the guide wants to help all Parkinson’s suffers and if she cannot, she would not want to charge anything accept the safe return of the guide via recorded delivery.

The Guide is £995.00 for PD clients however this is the price with the VAT taken off as all PD clients are VAT exempt. Again, we do offer free consultations and only except payment at the end of the given trial period, once you are happy with the alleviation of symptoms, otherwise we only ask for the Guide to be returned via recorded delivery.

I know that this would involve coming here so I must apologise that we cannot travel to the U.S.A, I wish we could do this over a Zoom meeting but unfortunately it is very important a trained technician is available to undertake the consultation.

Please email me if you have any other questions and I’m at the end of the phone if you would just like a chat.

Have a good day

Kind Regards

Ben Chester

Business Development Manager

[Despe]

Hi Angel!

Thanks for sharing their email. I was hoping that they somehow could consult with US patients. It appears that it's not doable.

[MBAnderson]

2 things in their favor; 1) they acknowledge it may not work, and 2, they let you have it for 2 weeks to figure out if it does anything.

2 things against; I suspect it confuses/interferes with PD signaling, (at a minimal level,) for awhile for those for whom it does work, so 1) I expect whatever benefit to be temporary, and 2) $1,300 USD.

Since there is no pulse or vibration, what cost $1,300?? It's claim is that the combination of the sensation of its weight and object in your peripheral vision creates enough stimuli to send "new" signals to the brain. I find that highly dubious, but even so why not make one yourself (out of a popsicle stick?)

In general, I'm not into gadgets without data or many concurring anecdotes. I'm out.

[park_bear in reply to MBAnderson]

She suffered from:

eyeguidemc.co.uk/news/linco...

"Hemispatial neglect, a condition which meant I had no awareness of the world on the left side of my body. "

It seems to me this is a particular about her condition that makes this device effective. It raises the question whether this would do anything for those of us who do not suffer from this issue.

[kevowpd in reply to park_bear]

There's also this, which may not be relevant but along with the hemispatial thing getting lobbed in there near without any real discussion does me make me rub my chin a bit:

I was constantly fatigued but didn’t know until many years later that this was ME (Chronic Fatigue Syndrome).

[enjoy2013 in reply to park_bear]

Yes, that was also what I thought. These sided neglect are typical of strokes or trauma to the right parietal brain area. The inventor may have suffered a stroke. This would not be an issue with the invention. It's not the first time that groundbreaking treatment are discovered by chance, or are effective for one symptoms/ illness, then observed to work on others. I just hope the inventor is being treated for whatever caused her hemineglect.

[Grumpy77 in reply to MBAnderson]

Why do you expect the benefits to be temporary?

[kevowpd in reply to Grumpy77]

Why do you expect that they wouldn't be?

[Grumpy77 in reply to kevowpd]

Every mechanism is different and there's no "one outcome fits all". So until you know the mechanism by which this gadget works, you cannot make a conclusion either way. So Its a valid question for anyone who has made a conclusion one way or the other, like "what's the basis of your conclusion"

So instead of throwing it back at me why not give the reason, more so because MBA's reply is not so clear to me.

[kevowpd in reply to Grumpy77]

I'm not comfortable that there is a "mechanism by which this gadget works", at least in regards PD. No science (whatsoever) that I could see on the site and no evidence of efficacy in a controlled environment.

The inventor has a condition of some probable relevance that most of us don't have.

As for the satisfied customers: charge some customers 1k GBP for a device to improve their PD and a decent portion of them will confirm that it did, at least for a while, whether it actually did or not.

I think if the hypotheses is that this is going to have a medium to long term impact on PD in any meaningful number of people, then some compelling evidence should be put forward in favour of that and so far none has, IMO.

[MBAnderson in reply to kevowpd]

well put

[MBAnderson in reply to Grumpy77]

Because the brain will, IMHO, compensate quickly and easily for such a (non existent) 'mechanism of action.'

"The Eye Guide MC is based on weight. The brain notices the weight of the Guide and the eye picks up the Guide in its peripheral vision. This combination of stimuli sends a signal to the brain."

If this worked, some % of the people who have hearing aids and wears glasses might expect the same signals.

[Beanie57]

My friend is having one of these fitted on 14th April. Will keep you updated.

[MBAnderson in reply to Beanie57]

please do

[Beanie57 in reply to MBAnderson]

Two days after fitting feed back. I have got the eye iGuide on and I am afraid of speaking too soon but it appears to be working and is Helping my walking and my speech. I feel it is enhancing my meds and I feel like I did about five years ago. Will keep you all updated with progress or any regression.

[MBAnderson in reply to Beanie57]

Thank you. Please do.

[Smokeypurple in reply to Beanie57]

That will be interesting thank you - we need more people reporting back before I jump at £995. For example BootsOn reports good things of the CUE1, so now I watch that space more avidly.I suppose the Eyeguide does a similar thing to lines on the floor/VR headsets? Amongst the other claims.

[Grumpy77 in reply to Smokeypurple]

You want others to take the £995 risk for you, right 😂😂

[Smokeypurple in reply to Grumpy77]

When you put it like that... 🤔

[bassofspades]

They should see if MJF would help them fund a study and clinical trial.

[Skyblue9]

A good friend of mine had this fitted 6 weeks ago. His feedback is it’s life changing. He went in using a walking stick and in his words “came out carrying it”. Among the other benefits he’s experienced are a general relaxing of his muscles which means he no longer needs to take pain killers 4 times a day, the ability to lift his right arm up high as he could only get it chest high and a marked reduction in his tremors. His wife has observed an improvement in his mood and has noticed that he is initiating conversations and is generally more talkative.

Interestingly a friend of his also had one fitted but found it gave no benefit. However after a discussion between the two of them it transpired that the device was not being worn correctly, the weighted piece which sits behind the ear was not connecting with the right part of the ear/skull and was therefore not stimulating the vestibular nerve.

The eye guard is being developed with the support of Parkinson’s UK and Lincoln University. Yes it’s in it’s early stages but don’t close your mind to it as my friend is living proof it works!

Kev

[MBAnderson in reply to Skyblue9]

I remain skeptical, but am impressed. Please keep us updated.

[MBAnderson]

I wonder why the hinge in our eyeglasses, which is in the same place, doesn't cause the similar benefit with some people?

[Beanie57]

1 moth feedback Hello Janet I'm sure we'll be able to meet up at some point, don't worry. I bought and paid for the Eye Guide because I thought it was doing something but now I'm not sure it was. Maybe wishful thinking on my part. It doesn't seem to be doing anything anything for me now and it was extremely expensive at £935 pounds which seems an incredible amount for something that looks like it only cost 50p to make. But I guess there was a lot of development cost in there.. so I feel slightly foolish at the moment. I would say though that it was worth trying it because it might work for your sister.. They let you take it home and try it for two weeks to make up your own mind.They don't hassle you during that time. Sandra said that one of her customers expressed how good the eye guide was at night in bed - I can't remember her exact words. Laurence asked Sandra how Something that relies on peripheral vision can work at night in the dark.. Which is a good point.. I think Sandra. said something along the lines of there's still enough light to see things with and she shut her eyes I noticed that while her eyes were shut her tremor came back. They fit it for you and then they give you some tests before and afterwards and see if there's any difference. They claimed to notice some improvement in my walking but I think that was just my enthusiasm because I wanted it to work. I’m still wearing mine in the hope of a small miracle.