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"Musk's Neuralink gets FDA's breakthrough device tag for 'Blindsight' implant"

 



"Sept 17 (Reuters) - Elon Musk's brain-chip startup Neuralink said on Tuesday its experimental implant aimed at restoring vision received the U.S. Food and Drug Administration's "breakthrough device" designation.

"The experimental device, known as Blindsight, "will enable even those who have lost both eyes and their optic nerve to see,"??in a post on X.



Hmm .. important to patients with NAION and glaucoma ..
Re: Mouth Tape

 

Hello NAION friend,

I am a NAION person with sleep apnea and now use a CPAC machine.?
I have included avlink below for tape that works very well for taping your mouth to prevent mouth breathing. I used it for a few weeks until I trained myself to not open my mouth while sleeping.? I have a lot leftover and would be happy to mail a roll to you. Otherwise it¡¯s about $12 for two rolls from Amazon.
You can text me your address if you want me to mail you a roll.?
Good luck,
Debra Brownstein?
831-421-1153


Nuanchu 2 Rolls Non-Woven Cover Roll Stretch Tape Non-Woven Adhesive Bandages Breathable Bandage Tape Cohesive Wrap Bandages Protective Stretch Bandage Roll Film (White,2 Inch X 10.94 Yard)


On Wed, Sep 11, 2024 at 4:24?PM Chris Evenson via <chrisevenson54=[email protected]> wrote:
You asked about mouth-taping. I discovered kinesio-tape can be cut to the size you need, and is very similar to the expensive precut tape you order on-line. ?

On Sep 11, 2024, at 2:22?PM, Russ Poter via <russpoter=[email protected]> wrote:

?
Statins are heavily debated.?

In the end, you should consult YOUR doctor. As always. And pick best choice, for you.

My college roommate, DVM, died of a heart attack, at age 52. No family history, of premature cardiac death. Was working very hard.
Re: About statins -- ASK YOUR DOCTOR

 

¿ªÔÆÌåÓý

You asked about mouth-taping. I discovered kinesio-tape can be cut to the size you need, and is very similar to the expensive precut tape you order on-line. ?

On Sep 11, 2024, at 2:22?PM, Russ Poter via groups.io <russpoter@...> wrote:

?
Statins are heavily debated.?

In the end, you should consult YOUR doctor. As always. And pick best choice, for you.

My college roommate, DVM, died of a heart attack, at age 52. No family history, of premature cardiac death. Was working very hard.
Re: Just Joined

 

It called Retrobulbar optic neuropathy?


On Sun, Sep 8, 2024, 19:24 Diana Patrick via <patrickdiana513=[email protected]> wrote:
Hi everyone, my name is Diana Patrick. Ive been married for 20 yrs to my husband Matt we have 2 children our daughter Gabby(22), and our son Malichi (we lost at 16 yrs old).
?
I suffered my NAION event in my left eye at 39 yrs old in Nov of 2023. Nearly total OS vision loss (80-85% loss), loss of color vision OS, loss of peripheral vision bilaterally, & developed dry eye syndrome.
?
My Neuro-Ophthalmologist labeled my diagnosis as "atypical" due to my age and lack of risk factors. However, I'm inclined to think the grief from the loss of our son somehow contributed to me experiencing NAION.
?
Neuro-Op ordered many vision tests, 4 MRIs, and lots of blood work. The original referring optometrist initially indicated that I had a "growth" or "mass" behind my eye and put us through a scare for the first couple weeks while waiting for an appt at Barnes Jewish Hospital. Thankfully my neuro-op immediately knew this was incorrect and what he was seeing was inflammation behind my eye.
?
Finally in April of 2024, NO clinically diagnosed my vision loss as NAION "atypical" related event. I am still adjusting to everyday life with monocular vision and some days I don't even notice the loss anymore. Then there are days when my brain just doesn't cooperate and the blurry, dark vision comes back again.
?
Thank you for accepting me into this group and I look forward to learning about everyone's experiences and gaining new wisdom!
?
Thanks again!
?
About statins -- ASK YOUR DOCTOR

 

Statins are heavily debated.?

In the end, you should consult YOUR doctor. As always. And pick best choice, for you.

My college roommate, DVM, died of a heart attack, at age 52. No family history, of premature cardiac death. Was working very hard.
Re: Hi Carolyn,

 

¿ªÔÆÌåÓý

You can buy a mouth guard in pharmacy or online that will prevent snoring and help with SA. The specialist will provide something similar at 50x the same cost!

I have one I never used and hopefully will never have to after shedding #25-30

?

David

?

From: [email protected] <[email protected]> On Behalf Of Lake Garren via groups.io
Sent: Tuesday, September 10, 2024 11:10 AM
To: [email protected]
Subject: [NAION] Hi Carolyn,

?

At 72, I developed NAION 5.5 months ago, and it has stablized. In my affected eye I see a circle of translucent silvery shimmering circles with a small clear section in the middle. ?Very weird. ?

I still drive well, play pickleball well, and do Beadweaving . ?

Before I retired, like you, I was a nurse and a diabetes educator (CDE).

?

? My neuro-opthalmologist suggested testing for sleep apnea, and I had two overnight tests, and failed them both! ?Dx. Mild OSA, so the Rx. is for a mouth guard. ?It takes forever to get into that specialist dentist, and still awaiting an appointment.

?

?Has anyone heard of putting tape on your lips at night to prevent snoring? ?

?

Lake Garren
Re: FYI: major study about relationship of NAION to Parkinson's

 

Waiting to see the studies ..

On Tue, Sep 10, 2024 at 7:50 PM, Paul Campano via groups.io
<campano21@...> wrote:
Hey Russ,
I managed to drop my cholesterol 82 points in 3 months with supplements (flax seed oil, fish oil, resveratrol, guggulipid). ?Statins also ruin your glucose tolerance. ?I wouldn't suggest them.
Paul

The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?

I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter

On 09/10/2024 5:55 PM EDT Russ Poter via groups.io <russpoter@...> wrote:
?
?
?
Statins / Parkinson's v. Early heart attack is often debated.
?
The choice: take statins to prevent premature heart attack at age 50 .. increase chances of Parkinson's, at age 65.
?
Many have decided, go with statins, take chances with Parkinson's. Because, frankly, patient may not make age 63. (shrug)
?
----?
?
On Tuesday, September 10, 2024 at 05:50:46 PM EDT, GaryGBrown via groups.io <bhmvol@...> wrote:
?
?
this may be indicative of a virus as the causative factor. ?

Re: FYI: major study about relationship of NAION to Parkinson's

 

¿ªÔÆÌåÓý

Maybe not surprising in retrospect. Both conditions have a link to poor sleep, which may be a common factor.

?

?

Adam

?

?

From: [email protected] <[email protected]> On Behalf Of Russ Poter via groups.io
Sent: Tuesday, September 10, 2024 5:33 PM
To: [email protected]
Subject: [NAION] FYI: major study about relationship of NAION to Parkinson's

?

A very good meta-analysis .. and frankly, given high percentage taking cardiac meds .. those meds are the bigger issue, IMHO ..

?

?

Abstract: "This study aimed to investigate the association between nonarteritic anterior ischemic optic neuropathy (NAION) and Parkinson's disease (PD) using a retrospective, nationwide, population-based cohort in South Korea.?

?

"This study utilized data from the Korean National Health Insurance database, including 43,960 NAION patients and 219,800 age- and sex-matched controls.?

?

Cox proportional hazards regression models were used to assess the risk of developing PD in the NAION group compared to the control group after adjusting for various confounding factors.

?

"Subgroup analyses were conducted based on sex, age, and comorbidities.?

?

"The incidence rate of PD was higher in the NAION group (1.326 per 1000 person-years) than in the control group (0.859 per 1000 person-years).?

?

"After adjusting for confounding factors, the risk of developing PD was significantly higher in the NAION group (adjusted hazard ratio [aHR] 1.516, 95% confidence interval [CI] 1.300¨C1.769).

?

"Subgroup analyses did not reveal a significant difference in the risk of PD development based on sex, age, or comorbidities.?

?

"This retrospective, nationwide, population-based cohort study revealed a significant association between NAION and an increased risk of developing PD in a South Korean population.?

?

"The incidence rate of PD was observed to be higher in individuals diagnosed with NAION than in age- and sex-matched controls even after adjusting for potential confounding variables, with the risk being approximately 51.6% higher in the NAION group.?

?

"Further research is necessary to elucidate the underlying pathophysiological mechanisms linking NAION to PD and to determine whether similar associations exist in other ethnic and geographical populations."

?
Re: FYI: major study about relationship of NAION to Parkinson's

 

¿ªÔÆÌåÓý

Hey Russ,
I managed to drop my cholesterol 82 points in 3 months with supplements (flax seed oil, fish oil, resveratrol, guggulipid). ?Statins also ruin your glucose tolerance. ?I wouldn't suggest them.
Paul

The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?

I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter

On 09/10/2024 5:55 PM EDT Russ Poter via groups.io <russpoter@...> wrote:
?
?
?
Statins / Parkinson's v. Early heart attack is often debated.
?
The choice: take statins to prevent premature heart attack at age 50 .. increase chances of Parkinson's, at age 65.
?
Many have decided, go with statins, take chances with Parkinson's. Because, frankly, patient may not make age 63. (shrug)
?
----?
?
On Tuesday, September 10, 2024 at 05:50:46 PM EDT, GaryGBrown via groups.io <bhmvol@...> wrote:
?
?
this may be indicative of a virus as the causative factor. ?

Re: FYI: major study about relationship of NAION to Parkinson's

 

Meta-analysis based on South Korean patient data. SK is an Asian Tiger .. people work extremely hard, like 90+ hours/week. IMHO, that is a NAION stressor.

On Tuesday, September 10, 2024 at 06:02:49 PM EDT, GaryGBrown via groups.io <bhmvol@...> wrote:


Again viral possible causative factor. The virus causes inflammation which is a root force behind all of those diseases. Sugar metabolism also plays a big part as is evidenced in all the ongoing studies on semaglutide.?
Re: FYI: major study about relationship of NAION to Parkinson's

 

Again viral possible causative factor. The virus causes inflammation which is a root force behind all of those diseases. Sugar metabolism also plays a big part as is evidenced in all the ongoing studies on semaglutide.?
Re: FYI: major study about relationship of NAION to Parkinson's

 

Statins / Parkinson's v. Early heart attack is often debated.

The choice: take statins to prevent premature heart attack at age 50 .. increase chances of Parkinson's, at age 65.

Many have decided, go with statins, take chances with Parkinson's. Because, frankly, patient may not make age 63. (shrug)

----?

On Tuesday, September 10, 2024 at 05:50:46 PM EDT, GaryGBrown via groups.io <bhmvol@...> wrote:


this may be indicative of a virus as the causative factor. ?
Re: FYI: major study about relationship of NAION to Parkinson's

 

this may be indicative of a virus as the causative factor. ?
EXPLAINING WHAT YOUR N.O. .. has to deal with

 

This is a case discussion involving glaucoma .. which is 30,000% bigger than NAION, and also involves optic nerve .. for which WE, can still get





Many of us face multiple issues .. NAION .. cataracts .. retina health .. glaucoma

This explains the challenges involved, and the trade-offs. Have NAION? Retain hole? 50% cataracts?

Lot of very challenging issues and questions ..
FYI: major study about relationship of NAION to Parkinson's

 

A very good meta-analysis .. and frankly, given high percentage taking cardiac meds .. those meds are the bigger issue, IMHO ..


Abstract: "This study aimed to investigate the association between nonarteritic anterior ischemic optic neuropathy (NAION) and Parkinson's disease (PD) using a retrospective, nationwide, population-based cohort in South Korea.?

"This study utilized data from the Korean National Health Insurance database, including 43,960 NAION patients and 219,800 age- and sex-matched controls.?

Cox proportional hazards regression models were used to assess the risk of developing PD in the NAION group compared to the control group after adjusting for various confounding factors.

"Subgroup analyses were conducted based on sex, age, and comorbidities.?

"The incidence rate of PD was higher in the NAION group (1.326 per 1000 person-years) than in the control group (0.859 per 1000 person-years).?

"After adjusting for confounding factors, the risk of developing PD was significantly higher in the NAION group (adjusted hazard ratio [aHR] 1.516, 95% confidence interval [CI] 1.300¨C1.769).

"Subgroup analyses did not reveal a significant difference in the risk of PD development based on sex, age, or comorbidities.?

"This retrospective, nationwide, population-based cohort study revealed a significant association between NAION and an increased risk of developing PD in a South Korean population.?

"The incidence rate of PD was observed to be higher in individuals diagnosed with NAION than in age- and sex-matched controls even after adjusting for potential confounding variables, with the risk being approximately 51.6% higher in the NAION group.?

"Further research is necessary to elucidate the underlying pathophysiological mechanisms linking NAION to PD and to determine whether similar associations exist in other ethnic and geographical populations."
Hi Carolyn,

 

At 72, I developed NAION 5.5 months ago, and it has stablized. In my affected eye I see a circle of translucent silvery shimmering circles with a small clear section in the middle. ?Very weird. ?
I still drive well, play pickleball well, and do Beadweaving . ?
Before I retired, like you, I was a nurse and a diabetes educator (CDE).
?
? My neuro-opthalmologist suggested testing for sleep apnea, and I had two overnight tests, and failed them both! ?Dx. Mild OSA, so the Rx. is for a mouth guard. ?It takes forever to get into that specialist dentist, and still awaiting an appointment.
?
?Has anyone heard of putting tape on your lips at night to prevent snoring? ?
?
Lake Garren
Re: Just joined as well

 

I don¡¯t see the point of one either.?

On Mon, 9 Sep 2024 at 11:44?PM, Eibhlin Fionn via <ourmissbrooks=[email protected]> wrote:
Carolyn,

I bought an eye patch only to be told by my NAION doctor that it is not recommended as it blocks light from entering the injured eye. Mine was a total vision loss in my right eye. It will get more tolerable as time
goes on. 20/20 maintained in my right eye after my 2007 loss.

Eileen
Re: Just joined as well

 

My brother who was having retina issues found out from his Dr that he too has disk at risk. ?Fortunately for him he hasn¡¯t had need for a retina repair nor NAION up to this point. My NAION happened within a week of a retina repair procedure. I don¡¯t see any reason why that wouldn¡¯t be genetic. ?
Re: Just joined as well

 

¿ªÔÆÌåÓý

I am bilateral. It happened to me around 12 years ago. My brother who is in his 80¡¯s has it in one eye and his son also was stricken by it a few years ago. We don¡¯t know why the 3 of us were stricken. Probably all of us have small eye ratio.?

The 3 of us have only lost partial sight and still do most everything in our lives. Thank the Lord.?

Jean in North Carolina?

On Sep 8, 2024, at 11:21?PM, Joseph W Harrison <joeharrison1776@...> wrote:

?
Interesting to read that your brother suffered NAION also.? This is the first time I can recall hearing about it occurring twice within a family, and in a fraternal way especially.? ?Does anyone else in our group have comments on this aspect?

On Sun, Sep 8, 2024 at 8:42?PM Carolyn Franke via <carolynfranke0123=[email protected]> wrote:
Hello,?
I am so happy to have found this group.? My episode causing NAION happened less than a month ago.? I am 65, in good health and my left eye is still 20/20. Goodness knows the cause; I have sleep apnea but it has been completely managed; my respirologist is very pleased with my unwavering compliance since diagnosis.? Elevated cholesterol; well yes, but never high enough to be recommended to be on statins.? I am a nurse and diabetes educator so I¡¯m pretty up to date with the healthy lifestyle advice and I try to practice what I preach.? My affected eye has, as predicted, gotten worse over the last couple of weeks; I do hope it stabilizes now.? A grey mist, and a blank in the very centre of my vision. What a pain. I can¡¯t read even the top line of the Snellen chart, which is alarming.? But I must say my first thoughts were of how grateful I was that it wasn¡¯t worse.? My brother also developed NAION 9 years ago when he was 59 and he has coped very well, living life to the full and is a great inspiration to me.? I also found NAIONLIFE.com inspirational and so kind and helpful.? What I liked the best was the reassurance that it is possible to live a fulfilling and happy life with this or any other disability; one just needs to keep on going!? I have always been a cautious driver and now I am twice as cautious; parallel parking is done by muscle memory as much as anything else!? I liked how the website gives an estimate of when the effects will seem less; 9 -12 months.? That seems very reasonable to me.? In the meantime, I would like to ask the group, does anyone ever wear an eyepatch over the affected eye or will that make the eye lose function faster?? I find sunglasses which grey everything down help, as they ¡°level the playing field¡± with the affected eye.? Anyway, many thanks to the website developer and all contributors.? Bring on the optic nerve regeneration science!
Re: Just joined as well

 

I have a follow up with the neuro-ophthalmologist in about 3 weeks; I¡¯ll ask him about the status of my disc and I¡¯ll ask my family doctor about the Factor V Leiden mutation. In the meantime, I¡¯m just trying to get used to this and still do everything I usually do.
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