Hi there, great to meet a REAL person on youtube. I am 21 and legally blind. However, when I put my glasses on I have vision enough to see during the day so that I can drive. At night I am blind I recently became a member of the NFB and I've come to realize that I don't fit in anywhere. With fully sited people, I do not see well enough to fully relate to them and with fully blind people, I am not blind enough. Being blind is not the end of your life, it's a begining of a new KIND of life.
In 1991 I had my 1st sinus surgery and 2005 with 2nd b4 I had the diagnosis of normal pressure hydrocephalus 2007 which should be renamed variable pressure and or unknown pressure hydrocephalus!
Tnx for ur positive video! May go to John Hopkins for shunt eval but they have less success with longer term hydrocephalus people since pressures eventually reach equilibrium. I'll just see how the inspiration hits me or them on reevaluation if I go!
LOL Abt ur probs with bkgrnd colors! I tried explaining that to a Disability Examiner in 2006 who asked if anything "helped" I mentioned color, he railed "that just changes the wavelength of light!" Denied!But he did not hire me as his chauffer either! Things get a smokey look sometimes,but always only see parts of objects not wholes.Had some of this b4 k-garden but worse now!Still, what would life be without a clown?A clown in me is my teacher.Gotta disappear like the letters on the page!scott
No surgery on head or optic nv decompression yet. Some docs think Im just vision impaired, who knows things disappear right in front of me! I know of a leaning telephone pole I caused driving when 15 that was a clue even then, but also had bad head injury at 2 yrs old. I spent 4 days last yr at UVA Neurosurgery with rod in head measuring ICP, I was a sore head with rod in head UVA Neuro-Ophthamology just said I had swollen optic nerves. Also had optic nv stroke at 36.
Interesting video. I am 46 with normal pressure hydrocephalus as of diagnosis October 2007 after high pressure spinal tap made them suspicious. Am I legally blind? Division of blind said so in 2006, as I have excessive optic nerve damage due to g6pd enzyme def and enlargements in my 3rd 4th and lateral ventricles. My left I can see a small amount in the center and I have many discontinuties in my visual field also in my better eye, so it's a close call. No surgery yet on my eye.
I'm so glad you're here to help spread the word about IH/PTC! So many people have absolutely no idea what it is and I have faced brick wall after brick wall trying to get dianosed. My first neuro dx'd me, but after a "normal" LP said I didn't have IH, then told me to choose between pain management and my son, and said he didn't know what was wrong with me. Yes, I have fired him and currently waiting to see my new neuro, who I hope can help. Good luck and are you registered with the IHRF?
It's a shame that PTC is so hard to diagnose. My story is somewhat similar to yours. Going through a process trial/error with diagnosis is not fun when you are the one suffering. I was actually diagnosed in 2001 with PTC. I only had one optic nerve sheath fenestration before I had a VP Shunt put in. I am sorry for your loss of vision. Mine was only minor in comparison. I admire your optomism and trust in God. I agree, it's what gets you through! Take Care, Tiff
I am also legally blind, I live in New Zealand and am attending high school at the moment.
It must have been really hard ajusting to your vision loss and I know it can be very frustrating when you miss out on fun stuff your friends can do because they can see and drive.
Ok... Jaws stand for Job access with speech. if you call 1-800-555-1212 you'll just ask for Freedom Scientific. They have the jaws prog. it is about 800 something to 1000 something, but it can make things easier.
There are people out there in assoc's and org's who will give you o and m skills. Plus there are lots of guide dog schools who are willing to assist visually impaired and blind folks who have atleast a little bit of vision. I have no vision in my left eye, but pretty good close up and central in my right. No side vision, or anything.. actually it's sorta of center in my right eye.But I get very close to the pc and do my thing. Also Freedom Scientific has a text to speech program called Jaws.
nancy, if my vision is -5.5 at the age of 13 do you think it will get so bad that i will become legally blind before the age of 21 (lasik eye surgery)?
Hi. Im sorry, I have no clue. Have you asked your doctor about your question? My blindness was caused due to a neurological condition that went undiagnosed.
I hope your vision doesnt worsen. Talk to your doc
Thank you for watching. As far as being sick of doctors, to be honest, I was blessed with THE BEST specialists. They, in my opinion, saved me from going completely blind!
Congratz to pass throught all that, I really appreciate how you talk of your story honestly ! Hope that your status don't hold you from accomplish your dream !
When you want you can, sounds better in french but w/e
Thank you so much. I'm glad that I am here too. This forum has already made such a difference in my life; meeting and communicating with people just like you! =)
What a story! It never fails to amaze me how doctors only look at symptoms and if it isn't text book they refuse to dig deeper. Take it from one who knows and has been flatly been told to get used to the pain! Thank you for the story! Sheryle
God bless her
dabeshu 1 month ago
im going threw the same problem and your a very strong women tanks for sharing this
jasonbrunow 1 year ago
I am legally blind and it was cause by a milk alergy when I was a baby.
entombill 1 year ago
Hi there, great to meet a REAL person on youtube. I am 21 and legally blind. However, when I put my glasses on I have vision enough to see during the day so that I can drive. At night I am blind I recently became a member of the NFB and I've come to realize that I don't fit in anywhere. With fully sited people, I do not see well enough to fully relate to them and with fully blind people, I am not blind enough. Being blind is not the end of your life, it's a begining of a new KIND of life.
sweetpickles87 3 years ago
In 1991 I had my 1st sinus surgery and 2005 with 2nd b4 I had the diagnosis of normal pressure hydrocephalus 2007 which should be renamed variable pressure and or unknown pressure hydrocephalus!
Tnx for ur positive video! May go to John Hopkins for shunt eval but they have less success with longer term hydrocephalus people since pressures eventually reach equilibrium. I'll just see how the inspiration hits me or them on reevaluation if I go!
Peace, love and light!
scott
trumpetbumm 3 years ago
LOL Abt ur probs with bkgrnd colors! I tried explaining that to a Disability Examiner in 2006 who asked if anything "helped" I mentioned color, he railed "that just changes the wavelength of light!" Denied!But he did not hire me as his chauffer either! Things get a smokey look sometimes,but always only see parts of objects not wholes.Had some of this b4 k-garden but worse now!Still, what would life be without a clown?A clown in me is my teacher.Gotta disappear like the letters on the page!scott
trumpetbumm 3 years ago
No surgery on head or optic nv decompression yet. Some docs think Im just vision impaired, who knows things disappear right in front of me! I know of a leaning telephone pole I caused driving when 15 that was a clue even then, but also had bad head injury at 2 yrs old. I spent 4 days last yr at UVA Neurosurgery with rod in head measuring ICP, I was a sore head with rod in head UVA Neuro-Ophthamology just said I had swollen optic nerves. Also had optic nv stroke at 36.
Background color!LOL
trumpetbumm 3 years ago
Hi Nancy1967,
Interesting video. I am 46 with normal pressure hydrocephalus as of diagnosis October 2007 after high pressure spinal tap made them suspicious. Am I legally blind? Division of blind said so in 2006, as I have excessive optic nerve damage due to g6pd enzyme def and enlargements in my 3rd 4th and lateral ventricles. My left I can see a small amount in the center and I have many discontinuties in my visual field also in my better eye, so it's a close call. No surgery yet on my eye.
trumpetbumm 3 years ago
I'm so glad you're here to help spread the word about IH/PTC! So many people have absolutely no idea what it is and I have faced brick wall after brick wall trying to get dianosed. My first neuro dx'd me, but after a "normal" LP said I didn't have IH, then told me to choose between pain management and my son, and said he didn't know what was wrong with me. Yes, I have fired him and currently waiting to see my new neuro, who I hope can help. Good luck and are you registered with the IHRF?
amandacburns 3 years ago
yea I am 15 and on the verge to being legally blind :( It's sucks bad because I love car racing and you cant drive when your legally blind!
AquafreshContest 3 years ago
It's a shame that PTC is so hard to diagnose. My story is somewhat similar to yours. Going through a process trial/error with diagnosis is not fun when you are the one suffering. I was actually diagnosed in 2001 with PTC. I only had one optic nerve sheath fenestration before I had a VP Shunt put in. I am sorry for your loss of vision. Mine was only minor in comparison. I admire your optomism and trust in God. I agree, it's what gets you through! Take Care, Tiff
washbootie 3 years ago
Aw that's so sad... I'll pray for you, Nancy!!!
Stagekid288 4 years ago
Hi Nancy,
Thank you so much for posting this video.
I am also legally blind, I live in New Zealand and am attending high school at the moment.
It must have been really hard ajusting to your vision loss and I know it can be very frustrating when you miss out on fun stuff your friends can do because they can see and drive.
It's great that your outlook is so bright!
Take care,
mali
mali13splishsplash 4 years ago
Hi Nancy...
Haven't seen any vids in quite some time...just wanted to make sure you're doing ok.
Take Care,
Sheri (thornekatt)
thornekatt 4 years ago
There is also a magizine for the blind and vis impaired. You can call them dial 1-800-555-1212 and ask for "Maxi Aides"
The number should be 1-800-552-maxi which is 1-800-552-6294.
If you need any more info let me know.
The guide dog school I went to is a great school.
blacksheepgirl 4 years ago
Ok... Jaws stand for Job access with speech. if you call 1-800-555-1212 you'll just ask for Freedom Scientific. They have the jaws prog. it is about 800 something to 1000 something, but it can make things easier.
blacksheepgirl 4 years ago
There are people out there in assoc's and org's who will give you o and m skills. Plus there are lots of guide dog schools who are willing to assist visually impaired and blind folks who have atleast a little bit of vision. I have no vision in my left eye, but pretty good close up and central in my right. No side vision, or anything.. actually it's sorta of center in my right eye.But I get very close to the pc and do my thing. Also Freedom Scientific has a text to speech program called Jaws.
blacksheepgirl 4 years ago
nancy, if my vision is -5.5 at the age of 13 do you think it will get so bad that i will become legally blind before the age of 21 (lasik eye surgery)?
Nicaj37 4 years ago
Hi. Im sorry, I have no clue. Have you asked your doctor about your question? My blindness was caused due to a neurological condition that went undiagnosed.
I hope your vision doesnt worsen. Talk to your doc
and see what he/she says. Best of Luck.
Nancy
Nancy1967 4 years ago
thx, i will ask him.
Nicaj37 4 years ago
This really makes me count my blessings.Thanks for sharing.You have really been through it,I bet you are sick of doctors.
noahsark1962 4 years ago
Thank you for watching. As far as being sick of doctors, to be honest, I was blessed with THE BEST specialists. They, in my opinion, saved me from going completely blind!
Blessings...
Nancy
Nancy1967 4 years ago
Congratz to pass throught all that, I really appreciate how you talk of your story honestly ! Hope that your status don't hold you from accomplish your dream !
When you want you can, sounds better in french but w/e
Fred
FreddyBaril 5 years ago
Merci Fred!
How sweet of you to say...and how nice of you to watch my videos! Hope to learn more about you in this forum as well.
Blessings...
Nancy
Nancy1967 5 years ago
I'm thankful that you are here on YouTube. You are such a strong young woman. I truly admire your fortitude and faith. Hugs,~Moonchime
Moonchimes 5 years ago
Thank you so much. I'm glad that I am here too. This forum has already made such a difference in my life; meeting and communicating with people just like you! =)
Nancy
Nancy1967 5 years ago
What a story! It never fails to amaze me how doctors only look at symptoms and if it isn't text book they refuse to dig deeper. Take it from one who knows and has been flatly been told to get used to the pain! Thank you for the story! Sheryle
Whits1bone 5 years ago
Thank YOU for watching Sheryle! =)
Blessings...
Nancy
Nancy1967 5 years ago
Oh, Nancy, I'm so sorry! :-(
Talk to you soon,
Rex
rextangle 5 years ago