Re: Our new NAION Zoom Group starts Wednesday April 23,2025
Thank you so much for organizing this!
My husband and I would like to join as well. Please let me know what information you need from us.?
Thank you!
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On Apr 12, 2025, at 3:38?PM, Andrew Watson via groups.io <aowats3@...> wrote:
? Ok, I¡¯m in after all, please. Maybe a good idea to have some kind of outline/organization. So many people on the call without that could be chaotic. Just an idea¡.
Andy On Apr 12, 2025, at 13:53, Debra B via groups.io <debrownstein@...> wrote:
? Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
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Re: Acuvision Acupuncture
I was diagnosed in july 2024. They say I have stabilized at this point.?
I too am primary caregiver for my adult paraplegic son. I can take care of everything as long as I have a bright light on little details. Most everything is ok.?
I totally understand the feeling of being discombobulated. Going to grandson¡¯s sports games and not seeing all the details is frustrating ? I am driving but only on sunny days ( unless) emergency.?
Going to research this doctor in Jersey and talk to my ophthalmologist.?
BTW I am in Kentucky. Happy Derby ??
On Sun, Apr 13, 2025 at 1:39?AM ainul wahidah ismail via <eyenull= [email protected]> wrote: Hi,
I hope this article will help.
Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It¡¯s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I¡¯d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!
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My eyes have stabilized so the neuro ophthalmologist says. Saw three different ones. The occurrence happened late June 2024 in both eyes at same time. The optic nerve still slightly enlarged. Fortunately my vision is tolerable. Feel like in a fog most of the time. Last one told me to stay in touch with PCP, ophthalmologist and sleep specialist as it could happen again. GREAT?
Welcome to the world of NAION. So glad to hear how others are handling this day to day.?
On Sun, Apr 13, 2025 at 5:20?AM ainul wahidah ismail via <eyenull= [email protected]> wrote: May I know your eyes condition now? I had it on my right eye in 2023 and on my left eye on February? It affected the lower vision but now it's getting blurry on the upper side.
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May I know your eyes condition now? I had it on my right eye in 2023 and on my left eye on February? It affected the lower vision but now it's getting blurry on the upper side.
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Re: Acuvision Acupuncture
Hi,
I hope this article will help.
Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It¡¯s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I¡¯d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!
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Re: Acuvision Acupuncture
Thank you for taking the time to reply. I appreciate your feedback and honesty. It is hard not to get your hopes up when someone says they have seen improvement with a treatment. It¡¯s is very tempting. I¡¯d love to get even a portion of my sight back. That would be worth it to me. I¡¯ll take the call and see if i can get better information from them and keep y¡¯all posted. Thanks again!
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Re: Acuvision Acupuncture
Hi
I¡¯d steer clear of wasting your finances, hope, energy and emotions pursuing this.?
Assuming a definite NAION diagnosis, there is no recovery from the pathology sustained. Once the initial settling in is complete, that¡¯s it.?
No mumbo jumbo is going to restore your vision
Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It¡¯s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I¡¯d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!
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Re: Our new NAION Zoom Group starts Wednesday April 23,2025
Ok, I¡¯m in after all, please. Maybe a good idea to have some kind of outline/organization. So many people on the call without that could be chaotic. Just an idea¡.
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On Apr 12, 2025, at 13:53, Debra B via groups.io <debrownstein@...> wrote:
? Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
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Re: Any interest in a Naion Zoom Support Group?
I would love to be included in a zoom support group. Please add me to your list. Thank you!
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Re: Our new NAION Zoom Group starts Wednesday April 23,2025
Excellent!? Thank you for pulling this together. ?? Deborah A. Schroth, Esq. 904-333-2537
Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
|
Our new NAION Zoom Group starts Wednesday April 23,2025
Hello NAION Friends,
So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025@ 3:00 PM in California (PDT) corresponding times are
? Mountain Time (MDT): 4 PM
? Central Time (CDT): 5 PM
? Eastern Time (EDT): 6 PM
? London, UK (BST): 11 PM
? Melbourne, Australia (AEST): 8 AM on April 24.
The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them.? Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.?
|
Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It¡¯s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I¡¯d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!
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Re: Any interest in a Naion Zoom Support Group?
I would be interested. Eastern time zone.?
Sue Wolahan?
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On Apr 10, 2025, at 5:30?AM, Paula Mcglasson via groups.io <paulam@...> wrote:
? I'm interested and I am in the Eastern time zone. Paula On Thu, Apr 10, 2025 at 7:28?AM Diane Keasler via <dlkeasler= [email protected]> wrote: I'm interested, ET zone, and flexible as to time and day.? Thanks.
On Thu, Apr 10, 2025 at 6:22?AM Susan Eckler via <susaneckler= [email protected]> wrote:
I neglected to mention that I am in the Eastern time zone.?
On Wednesday, April 9, 2025, 10:30 PM, David Cattle via <djacattle=[email protected]> wrote: Great idea! I am Pacific Coast Time. Maybe Tuesdays? ? David Cattle ? ? Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.? This would not be a professional therapy zoom but a friendly group self support type meeting.? ?
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Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
-- Professor Paula McGlasson?? She, Her, Hers
Chair & Production Manager, URI Theatre (401) 874-2712 office (401) 315-2227 home (401) 743-1039 cell
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Re: Any interest in a Naion Zoom Support Group?
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On Apr 10, 2025, at 7:30?AM, Paula Mcglasson via groups.io <paulam@...> wrote:
? I'm interested and I am in the Eastern time zone. Paula On Thu, Apr 10, 2025 at 7:28?AM Diane Keasler via <dlkeasler= [email protected]> wrote: I'm interested, ET zone, and flexible as to time and day.? Thanks.
On Thu, Apr 10, 2025 at 6:22?AM Susan Eckler via <susaneckler= [email protected]> wrote:
I neglected to mention that I am in the Eastern time zone.?
On Wednesday, April 9, 2025, 10:30 PM, David Cattle via <djacattle=[email protected]> wrote: Great idea! I am Pacific Coast Time. Maybe Tuesdays? ? David Cattle ? ? Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.? This would not be a professional therapy zoom but a friendly group self support type meeting.? ?
Groups.io Links: You receive all messages sent to this group. | Reply to Group | Reply to Sender | |
| Contact Group Owner | [debrownstein@...]
--
Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
-- Professor Paula McGlasson?? She, Her, Hers
Chair & Production Manager, URI Theatre (401) 874-2712 office (401) 315-2227 home (401) 743-1039 cell
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This is great information, George! Thank you!?
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On Apr 9, 2025, at 7:55?PM, ultra12 via groups.io <ultra12@...> wrote:
?Thank you everyone who has responded about the flying- it's very reassuring to know that flying has not been an issue for anyone! All the notes have been helpful. Thanks, Becky ----------------------------------------- From: "George Ousler via groups.io" To: [email protected]Cc: Sent: Wednesday April 9 2025 4:23:21PM Subject: Re: [NAION] Naion
Hi Becky,
I had my first NAION in 2016 (age 40) - right eye, losing
about 35% of my inferior vision. I fly internationally for my work
and definitely flew within a couple of months my episode with no
issues. I then had a second NAION last November (age 49) - left
eye, losing about 35% of my inferior vision. This episode was
caused by use of Monjourno for approximately 6 months. I flew about
2 months after this and have not had any issues. My neuro
ophthalmologist said that I should not be concerned with flying
since cabins are pressurized. His follow on comment is that if you
scuba dive and descend / ascend too quickly I could have an issue.
From my research and experience the only recommendation is to not
fly while the optic nerve is swollen after an episode. This usually
takes 6 to 8 weeks and is when you are most vulnerable for more
vision loss. Once the swelling is gone I¡¯ve been told that vision
loss is no longer possible. Hope this helps. George?
On Wednesday, April 9,
2025, 4:59 PM, Michael B via groups.io
<fauxevermb@...> wrote:
Hi Becky. I am 14 months in. My retinal specialist,
who has been treating me as referred by ophthalmologist, told me
flying was fine. That was after the first month or two. I have
flown a few times and have had no problems. As long as the aircraft
is pressurized you should be fine.
On Wed, Apr 9, 2025
at 7:59?AM ultra12 via
<ultra12@...>
wrote:
I am new to the group- my naion episode happened late January
of this year. I was given high steroids for 4 days, not sure if it
was any help.? Developed a severe case of shingles three days
later. I believe I had a very light episode of the shingles a
couple of months prior to my naion episode. (they cannot tell me
what cased this) One of my concerns right now is flying. We have a
trip planned for late May to Ireland. When I saw a
neuro-ophthalmologist, one of his residents expressed that I should
take flying precautions in the first year. Implying that the first
year is the most critical for getting naion in the other eye. But
the neuro-ophthalmologist wasn't as concerned as the
resident.? My local ophthalmologist wasn't concerned about
flying that much at all. With that being said, has anyone ever
heard of flying in the first year of diagnosis to be a risk
factor?
?
Thank You,?
Becky Miller
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Re: Any interest in a Naion Zoom Support Group?
Yes , I would love a zoom group, please keep me informed
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On Apr 10, 2025, at 6:22?AM, Susan Eckler via groups.io <susaneckler@...> wrote:
?
I neglected to mention that I am in the Eastern time zone.?
On Wednesday, April 9, 2025, 10:30 PM, David Cattle via groups.io <djacattle@...> wrote: Great idea! I am Pacific Coast Time. Maybe Tuesdays? ? David Cattle ? ? Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.? This would not be a professional therapy zoom but a friendly group self support type meeting.? ?
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Re: Any interest in a Naion Zoom Support Group?
I would be interested as well. I am eastern time.
On Wednesday, April 9, 2025, 8:54 PM, Debra B via groups.io <debrownstein@...> wrote: Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
Thank you, Debra?
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Re: Any interest in a Naion Zoom Support Group?
unilateral since December 24 - I'm interested - CST timezone (but retired - should be able to attend whichever timezone is decided)
On Thu, Apr 10, 2025 at 11:20?AM Dina Zirlin via <dinazirlin3= [email protected]> wrote: I would love to join in on the zoom but it¡¯s my hubby who was hit not me.? He isn¡¯t interested in the zoom call but I would love to learn how everyone is using technology and adapting.? He lost vision in his right eye 10 months ago and his left eye 8 weeks ago.? Hard road for the family. If the group will have me great, if not I totally understand.? Dina Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
Thank you, Debra?
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Re: Any interest in a Naion Zoom Support Group?
I would love to join in on the zoom but it¡¯s my hubby who was hit not me.? He isn¡¯t interested in the zoom call but I would love to learn how everyone is using technology and adapting.? He lost vision in his right eye 10 months ago and his left eye 8 weeks ago.? Hard road for the family. If the group will have me great, if not I totally understand.? Dina
Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
Thank you, Debra?
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ReeRee
Deborah