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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Life is the school, love is the lesson.
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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.? ?
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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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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
|
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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Re: Any interest in a Naion Zoom Support Group?
I do but I work 10 hours a day so I'm not sure I could participate but would like to be part of a transcript if available
On Thu, Apr 10, 2025, 10:50 AM Anne Wittke via <wittke.anne= [email protected]> wrote: I would be interested in giving this a try. I am on Arizona time, which means mountain time in the winter and pacific time in the summer. Anne
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 be interested in giving this a try. I am on Arizona time, which means mountain time in the winter and pacific time in the summer. Anne
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?
Hi All,
Forgot to mention that?I’m located in?Boston ET. Thanks!
On Thursday, April 10, 2025, 10:20 AM, Tim Elersich <mcgauge@...> wrote: I’m interested in the pacific time zone. Great idea. Thank you.? On Apr 10, 2025, at 4:30?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
|
Re: Any interest in a Naion Zoom Support Group?
I’m interested in the pacific time zone. Great idea. Thank you.?
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On Apr 10, 2025, at 4:30?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
|
Re: Any interest in a Naion Zoom Support Group?
I’m interested. Central time zone.
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On Apr 10, 2025, at 6:30?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
|
Re: Any interest in a Naion Zoom Support Group?
Thanks Debra I will join a zoom call when available. Any day is fine. ?I’m retired and live in PA - Eastern Time (GMT-4). ?
NAION hit my left eye in Nov, 2024. I lost a majority of my vision in that eye. But, I continue to be active and refuse give up hope for vision restoration. ?I’d be glad to share and provide any support I can. ??
Jeff
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On Apr 9, 2025, at 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?
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
|
Re: Any interest in a Naion Zoom Support Group?
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.
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Re: Any interest in a Naion Zoom Support Group?
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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Sorry for typo in earlier reply.
So now it has affected your whole vision is it? I had mine 2 month ago but now it has slowy going on the upper side. Kindly share the detail. Thank you
That’s the typical pattern; exactly what happened to me 8 weeks ago…. On Apr 9, 2025, at 15:44, ainul wahidah ismail via <eyenull=[email protected]> wrote:
? My doctor said mine was no longer swollen about a month ago. But the lower side of my eye is still dark and I am worry it will affect the upper half of my eye. I'm not sure about this, but I think the chances of vision worsening in the affected eye is while the optic nerve is still swollen.? I believe that is what happened to me - without being forewarned that the optic nerve was still swollen.? I discovered that it was still swollen after going from having lost only the bottom half of vision in my right eye to losing all acuity within less than two weeks.? Upon being first diagnosed, I knew nothing about NAION.
My non-medical, case of one experience is that flying in a pressurized aircraft wasn’t a problem for me.? Also anecdotal is that I had shingles prior to NAION and even was diagnosed with trigeminal neuralgia prior to NAION.? The same virus causes both. I’m not sure if the trigeminal neuralgia was misdiagnosed or is in some kind of remission but I haven’t had any attacks since the first several knee buckling weeks of searing pain in my left jaw. The shingles was on my left upper torso and NAION in my left eye.?
--
Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
That sounds like a retinal detachment. ?Maybe I misunderstood??
|
Re: Any interest in a Naion Zoom Support Group?
Great idea! I am Pacific Coast Time. Maybe Tuesdays? ? David Cattle ?
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From: [email protected] <[email protected]> On Behalf Of Debra B via groups.io
Sent: Wednesday, April 9, 2025 5:54 PM
To: [email protected]
Subject: [NAION] Any interest in a Naion Zoom Support Group?? 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 think this is a great idea! Thank you for offering to get it going!?
On Wednesday, April 9, 2025, 9:36 PM, Ruby via groups.io <rcroyhome@...> wrote: What a great idea, Debra! Thank you.? I am Central Time, and pretty flexible on days. On Wed, Apr 9, 2025 at 8:19?PM Chiarina Blake via <jc.blake2= [email protected]> wrote: Yes. That would be great but I live in Australia so Thi la May be a little tri my? 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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