Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.
Hi Debra
That’s great, I’m more pleased that I’ve now managed to sort out my email issues and will be able to communicate ! Ended up changing my email address.
Cheers
Peter
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On 14 May 2025, at 07:03, Debra B via groups.io <debrownstein@...> wrote:
Thank you Peter, it really takes a village when your vision is compromised ? you are correct. June 8 is on a Sunday, we will meet on Saturday, June 7th and Wednesday, May 28th.? It is nice for the Europeans and South Africans to have that earlier time option on Saturdays.
Thank you Peter! Debra B
On Tue, May 13, 2025 at 10:31?PM Peter Osler via <peterosler= [email protected]> wrote: I’m available for both but isn’t June 8 a Sunday?
Cheers?
Peter Osler
?Hi Debra June 8 would work the best for me…unavailable on the 28th as out on vacation.
Thanks for coordinating all of this!
All the very best for your low vision appointment!? Look forward to hearing how it went at some point!
Take care! Sue (Unilateral in March 2019) Sue Bottema Cell 480 719 9919 On May 13, 2025, at 10:35?AM, Danette Janickovic via <Mommyflyz=[email protected]> wrote:
? The 28th should work for me.?
Thank you! Danette ? Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible.Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@...Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o have mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
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Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.
Thank you Peter, it really takes a village when your vision is compromised ? you are correct. June 8 is on a Sunday, we will meet on Saturday, June 7th and Wednesday, May 28th.? It is nice for the Europeans and South Africans to have that earlier time option on Saturdays.
Thank you Peter! Debra B
On Tue, May 13, 2025 at 10:31?PM Peter Osler via <peterosler= [email protected]> wrote: I’m available for both but isn’t June 8 a Sunday?
Cheers?
Peter Osler
?Hi Debra June 8 would work the best for me…unavailable on the 28th as out on vacation.
Thanks for coordinating all of this!
All the very best for your low vision appointment!? Look forward to hearing how it went at some point!
Take care! Sue (Unilateral in March 2019) Sue Bottema Cell 480 719 9919 On May 13, 2025, at 10:35?AM, Danette Janickovic via <Mommyflyz=[email protected]> wrote:
? The 28th should work for me.?
Thank you! Danette ? Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible.Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@...Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o have mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
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Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.
I’m available for both but isn’t June 8 a Sunday?
Cheers?
Peter Osler
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Show quoted text
On 14 May 2025, at 03:44, Sue Bottema via groups.io <sue.bottema@...> wrote:
? Hi Debra June 8 would work the best for me…unavailable on the 28th as out on vacation.
Thanks for coordinating all of this!
All the very best for your low vision appointment! ?Look forward to hearing how it went at some point!
Take care! Sue (Unilateral in March 2019) Sue Bottema Cell 480 719 9919 On May 13, 2025, at 10:35?AM, Danette Janickovic via groups.io <Mommyflyz@...> wrote:
? The 28th should work for me.?
Thank you! Danette On May 12, 2025, at 8:03?PM, Debra B via groups.io <debrownstein@...> wrote:
? Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible.Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@...Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o have mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
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Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.
Hi Debra June 8 would work the best for me…unavailable on the 28th as out on vacation.
Thanks for coordinating all of this!
All the very best for your low vision appointment! ?Look forward to hearing how it went at some point!
Take care! Sue (Unilateral in March 2019) Sue Bottema Cell 480 719 9919
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Show quoted text
On May 13, 2025, at 10:35?AM, Danette Janickovic via groups.io <Mommyflyz@...> wrote:
? The 28th should work for me.?
Thank you! Danette On May 12, 2025, at 8:03?PM, Debra B via groups.io <debrownstein@...> wrote:
? Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible.Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@...Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o have mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
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NAION risk with semaglutide: what we know so far - Eye
NAION risk with semaglutide: what we know so far | Eye
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Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.
The 28th should work for me.?
Thank you! Danette
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Show quoted text
On May 12, 2025, at 8:03?PM, Debra B via groups.io <debrownstein@...> wrote:
? Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible.Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@...Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o have mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
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Well said. ? And as long as the doctor fully discloses that a recommended response isn’t a proven treatment, and since there are no proven treatments, each of us can give informed consent to try what doctors are looking at now.? If all we have currently is anecdotal evidence, I think we would be foolish to not try something that is otherwise long-term harmless because it’s not yet proven. ?
In hindsight, I wish my NO wasn’t so cautious.? He wouldn’t initially prescribe steroids, other than eye drops which did nothing, until I was weeks in and he realized the edema wasn’t going away.? The steroids helped me recover some lost vision, but nonetheless I lost about 1/3 in the affected eye.? I will always wonder if he had begun steroids immediately, things would have been different. ?
If this occurs in my other eye, I’m going to beg for hyperbaric therapy.? I had the bends and was in a chamber for a total of 12 hours over two days.? I had had knee surgery months prior but still had a great deal of pain and limited range of motion.? That chamber therapy helped significantly. ? If I can afford it, why not try it? Deborah A. Schroth, Esq. 904-333-2537
On Tue, May 13, 2025 at 11:03?AM Scott Fuller via <scottfuller= [email protected]> wrote: I too am searching for answers that are 100% supported by scientific evidence and success through many, many repeatable trials.? We’ve had a lot of discussions in this group about the fact that this disease does not get the research attention that other diseases get.? Dr Liao at Stanford is one Doctor that is doing that research and I think it’s worth supporting that work in order to see where it leads.? I’m skeptical of EVERY solution regardless of where or who it comes from until there is repeatable and corroborated evidence that it works.? But study, research, and trial is the only way to get there. ?
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Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.
Looks great, Debra.? Thanks for all you do!
Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible.Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@...Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o have mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
-- Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
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I too am searching for answers that are 100% supported by scientific evidence and success through many, many repeatable trials. ?We’ve had a lot of discussions in this group about the fact that this disease does not get the research attention that other diseases get. ?Dr Liao at Stanford is one Doctor that is doing that research and I think it’s worth supporting that work in order to see where it leads. ?I’m skeptical of EVERY solution regardless of where or who it comes from until there is repeatable and corroborated evidence that it works. ?But study, research, and trial is the only way to get there. ?
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Re: A NAION After Visit Summary of Instructions (Pages 1-9 & 10))
Debra,
?
May I know how many hyperbaric session have you done?? And how many session that have shown improvement on your eyes. Kindly share.
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Hey .? I am not the leader, but I am a PHd professor with NAION
and I think you guys should cool it.? This condition makes us all
tense and everyone is trying their best to learn.? Your
information is very valuable and so are to feeling and ideas of
all of us.?
On 5/12/2025 7:23 PM, Russ Poter via
groups.io wrote:
toggle quoted message
Show quoted text
Previous moderator was PhD
professor. Now, so many mental clods, frightened of science and
scientists.
Leaving for a long time. Good
luck, DB.
On Mon, May 12, 2025 at 7:52 PM, Deane Williams
Yes, please always consider how and what you are sounding
like. Written
messages on a forum may be easily misinterpreted.
Consider all angles and be nice.
Deane (moderator)
On 5/12/2025 6:52 PM, Andrew Watson via groups.io wrote:
> Suggestion: take personal fights off-line and argue til
the cows come
> hoe. My inbox is too full of personal animus whereas I’m
looking for
> helpful suggestions.
>
|
I'd say Russ thinks journal articles are totally correct all the
time. Well Russ, they are not.
When someone in our small community comes up with a positive
experience we all want to know more about it.
Hyperbaric oxygen therapy is not that expensive, is available in
most large cities and has few downsides.
?So you expect we should not try it just because some studies say it
didn't work for them?
How small was the sample? When was this done? We need more
information before we just dismiss this !!
We are all looking forward to Debra's results data.
On 5/12/2025 10:23 PM, Russ Poter via
groups.io wrote:
toggle quoted message
Show quoted text
Previous moderator was PhD
professor. Now, so many mental clods, frightened of science and
scientists.
Leaving for a long time. Good
luck, DB.
On Mon, May 12, 2025 at 7:52 PM, Deane Williams
Yes, please always consider how and what you are sounding
like. Written
messages on a forum may be easily misinterpreted.
Consider all angles and be nice.
Deane (moderator)
On 5/12/2025 6:52 PM, Andrew Watson via groups.io wrote:
> Suggestion: take personal fights off-line and argue til
the cows come
> hoe. My inbox is too full of personal animus whereas I’m
looking for
> helpful suggestions.
>
|
I just wanted to say thank you to all of you that responded and to the group in general. I’m new to this group and it really helps to know I am not alone! And thank you for all the advice. It is VERY helpful!
On Monday, May 12, 2025, 3:13 PM, Diane Keasler via groups.io <dlkeasler@...> wrote: It is so worrisome, Sharon!
My NAION is also in my right eye (since July 22) and my vision loss is at least as great as yours.? Protecting my left eye, attempting to maintain steady blood pressure, is my main objective.? Diet and exercise, no stress, staying hydrated,? no pharmaceuticals other than daily thyroid pill.
I think the vasoconstrictor, epinephrine, in the numbing shot I received, along with the cortisone shot I got at the same time, may have spiked my BP and triggered my NAION.? Initially I had only lost the bottom half of my vision in my right eye and that wasn't so bad.? Only being told by NO I saw at Duke that there was nothing to be done AND not being warned that while my optic nerve was still swollen and it was July, I needed to stay hydrated, I continued to play golf in the heat and humidity of central NC. Dehydration lowers BP.? Within two weeks I lost almost all my vision and all my acuity in?my?right eye.? I thank God regularly that I still have good corrected vision in my left eye.
I do feel your pain! On Mon, May 12, 2025 at 2:22?PM Sharon Paquette via <Sjpaquette= [email protected]> wrote:
I had my first occurrence of NAION last August and I lost about 80% of my vision in that eye. It was a huge adjustment. I have high blood pressure and I’m diabetic and I also have crowded discs. I was taking my BP meds at night and my ON told me to stop doing that and take it in the morning. I was on Ozempic for a year before the occurrence and I stopped that immediately. The plan now is to do all I can to hopefully keep it from happening in my left eye, so?I now have a sleep study scheduled.
Is it normal to have that much vision loss with NAION? Most of the vision is gone, looks gray. The other 20% is blurry so I don’t see anything clearly. If the same happens in my left eye, I would essentially be blind. It’s scary!
On Monday, May 12, 2025, 5:04 AM, eyenul via <eyenull=[email protected]> wrote: Chiarina,
?
Have your? naion settled in? Mine doesnt seem so since February. My vision has deteriorated but the NO believe I am worry too much.
-- Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
Previous moderator was PhD professor. Now, so many mental clods, frightened of science and scientists.
Leaving for a long time. Good luck, DB.
On Mon, May 12, 2025 at 7:52 PM, Deane Williams <pyroartist@...> wrote: Yes, please always consider how and what you are sounding like. Written
messages on a forum may be easily misinterpreted.
Consider all angles and be nice.
Deane (moderator)
On 5/12/2025 6:52 PM, Andrew Watson via groups.io wrote:
> Suggestion: take personal fights off-line and argue til the cows come
> hoe. My inbox is too full of personal animus whereas I’m looking for
> helpful suggestions.
>
|
Re: Zoom possible dates.Wed. May 28 and Sat. June 8th?.
Debra
I think Wednesday would be good. Probably get a lot more people than on a Saturday.
On Monday, May 12, 2025, 9:03 PM, Debra B via groups.io <debrownstein@...> wrote: Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible. Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@... Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o h ave mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
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Re: Odds of 2nd attack: 20% w/in 5 years
Look in the mirror, pal. Not a good look
On Mon, May 12, 2025 at 6:49 PM, Scott Fuller via groups.io <scottfuller@...> wrote:
I give 0.0 f’s about who or what you are. ?I just can’t figure out why every one of these NAION support groups becomes dominated by an angry, argumentative, and know-it-all person who blocks out all useful dialogue between people attempting to share their stories and support each other. ?
On May 12, 2025 at 3:41?PM -0700, Russ Poter via groups.io <russpoter@...>, wrote:
Stone-cold facts, dude --
HIGHLY PROFESSIONAL -- IMMEDIATELY ordered more exams .. cardiac stroke suspected?
FIRST O.D. exam by female?
FIRST O.D. exam by P.O.C.
A bit of advice. If you have 0.0 meaningful to add -- do 0.0.
How do you know that I am not a Black female? Did you ask yourself that?
------
On Mon, May 12, 2025 at 6:10 PM, Scott Fuller via groups.io
<scottfuller@...> wrote:
A bit of advice. ?Ask yourself whether the race of the person in your story has any effect on the story. ?If not, leave it out. ?
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Zoom possible dates.Wed. May 28 and Sat. June 8th?.
Dear NAION Zoom friends, I would like ?your input in scheduling the next two NAION Zoom Peer Support Group meetings. Our choices are limited to Wednesdays and Saturdays. Possible dates to consider are Wed. May 28 and Sat. June 8th, times listed below. What do you think?? I realize there are so many weddings and graduations this time of year, it's going to be hard to please everybody but worth?trying to? please as many as possible.Ideally I would like to regularly schedule for the first Saturday and third Wednesday of every month because it would be easier for people to plan ahead.? However this month I have my first appt with a low vision specialist so unable to do the third Wednesday of this month. Wednesday proposed May 28th ? Hawaii (HST) 12:00 PM (noon) ? Pacific Daylight Time (PDT) 3:00 PM ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 1100 PM ? Paris (CEST): 12:00 AM next day ? Cape Town (SAST) 12:00 AM next day ? Melbourne, Australia (AEST) 8:00 AM next day Saturday proposed June 8th ? Hawaii, (HST) 5:00 AM ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM June 9th (next day) ? Cape Town, South Africa (SAST) 5:00 PM June 9th (next day) ? Melbourne, Australia (AEST)1:00 AM June 9th (next day) ? Aukland, New Zealand (NZST) 3:00 AMJune 9th (next day) Thank you, Debra B debrownstein@...Bilateral (22 months apart 2023 & 2925). My optic nerve heads both have small cup-to-disc ratios and I als o have mild Sleep Apnea. My Neuro-Ophlmologist is Dr Liao at Stanford Beyers Eye Institute.
|
Yes, please always consider how and what you are sounding like. Written messages on a forum may be easily misinterpreted.
Consider all angles and be nice.
Deane (moderator)
toggle quoted message
Show quoted text
On 5/12/2025 6:52 PM, Andrew Watson via groups.io wrote: Suggestion: take personal fights off-line and argue til the cows come hoe. My inbox is too full of personal animus whereas I’m looking for helpful suggestions.
|
Re: How common is second NAION attack?
explore accessibility functions on your phone and computer.? "alexa" might come in reall?handy for you right now on both.? my android phone appears to have a "voice control" feature I find really handy.? if you have an android - there's also a program called? "lookout" that seems very helpful.? reads food labels / prescription details / other documents back to you.? it also has an interesting "explore" function that let's your phone's camera describe items in view to you, i.e., "chair", "tv remote", etc.
On Mon, May 12, 2025 at 8:54?AM Pamela Chadick via <apchadick88= [email protected]> wrote: Paul, This is so interesting. I love pickleball and have not been able to play since February. I have tried and my husband and friends have been great about trying to play with me, but it’s so frustrating, that I’ve stopped for now. The driving part is a little crazy and I’m hoping that at my next appt. I will get help with that. I don’t drive at night or in rainy conditions. Depth perception and color has been greatly affected this time around. I have a friend who is completely blind, so, I’m so grateful for all that I do see. But I’m hoping that I can find tools to get back to my independent self again soon! ?
I wear dark green sunglasses, all the time. Helps a bit, stablizes some images
Yellow lenses and brown lenses, also reported to have good outcomes.
On Monday, May 12, 2025 at 05:45:29 AM EDT, Paul Stratford via <p.stratford= [email protected]> wrote:
Hi Pamela I to am bi lateral. The events happened within 18 months of each other. I read at the time that the chances of it happening were 20 to 30%. I thought the second eye going would be catastrophic but life goes on and you do adjust. I still
drive subject to a DVLA eye test every 12 months I’m actually waiting for results at the moment. I only drive in day light and familiar areas. Be interesting to know how other bi lateral suffers get on as regards to driving. Other things I had to give up were
were squash and golf. I have tried pickleball but get frustrated when I lose sight of the ball when it bounces. Tried going back to golf but as soon as the balls air born I lose it. Probably more down to the colour blindness which is as much a problem as sight.
I have struggled with steps and once walked off a promenade on to a beach below lucky no one was sun bathing there. But this is more of a colour and depth issue. Be interesting to see what others have had to give up. On the benefits side because i can’t distinguish
faces very well I tend to stare more and this has led to a lot more people saying hello .Im 10 years on now so have come to terms with no medication and try not to reason why but still get caught out now and again. Have a great day Oaul
?
I have not, but over the years of this group there have been a few people who reported more events.? An NO said that is rare. less than 5%, because the attacks shrink the optic nerve and improve the disk ratio making another event very unlikely.? I am bilateral
but I have not relaxed about protecting my vision.? I still do what I can to defend it like staying away as much as I can from anything the shrinks the blood vessels and taking any heart related drug in the morning.
On 5/11/2025 6:39 AM, Pamela Chadick via wrote:
I ?also have NAION in both eyes. After the first event, I was always told there was only a 15% chance of it recurring in the second eye. The second event has been tough, but I do still see well enough to drive in areas I’m familiar with. The question that has
recently come to mine and I plan to ask at my next appointment is - has anyone had this happen a third time, worsening the damage in either eye?
?Ditto .. data via U of Iowa Medical?
On Sat, May 10, 2025 at 10:54 AM, Andrew Watson via
I recall reading in my early research that ?amongst all stricken once, chance of second eye being affected is 15% within 5 years. Can’t recall the source.
Andy W.
On May 10, 2025, at 16:33, Bestray Pty Ltd via
<bestray@...> wrote:
?
Hi everyone?
?
By reading messages in this group, I have a feeling that second NAION is much more common than I expected.?
Is it a misperception? Or is it really quite common to have a second attack. I am very worried.
?
thanks
Cliff
?
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Re: Odds of 2nd attack: 20% w/in 5 years
Suggestion: take personal fights off-line and argue til the cows come hoe. My inbox is too full of personal animus whereas I’m looking for helpful suggestions.
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On May 12, 2025, at 18:49, Scott Fuller via groups.io <scottfuller@...> wrote:
?
I give 0.0 f’s about who or what you are. ?I just can’t figure out why every one of these NAION support groups becomes dominated by an angry, argumentative, and know-it-all person who blocks out all useful dialogue between people attempting to share their stories and support each other. ?
On May 12, 2025 at 3:41?PM -0700, Russ Poter via groups.io <russpoter@...>, wrote:
Stone-cold facts, dude --
HIGHLY PROFESSIONAL -- IMMEDIATELY ordered more exams .. cardiac stroke suspected?
FIRST O.D. exam by female?
FIRST O.D. exam by P.O.C.
A bit of advice. If you have 0.0 meaningful to add -- do 0.0.
How do you know that I am not a Black female? Did you ask yourself that?
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On Mon, May 12, 2025 at 6:10 PM, Scott Fuller via groups.io
<scottfuller@...> wrote:
A bit of advice. ?Ask yourself whether the race of the person in your story has any effect on the story. ?If not, leave it out. ?
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Danette Janickovic
Deborah