[Menvi-discuss] Update On Me

Fri May 11 06:09:39 EDT 2012

grande caramel macchiato is a good motivator, cinna stack is a life-long
yearning experience. 

-----Original Message-----
From: menvi-discuss-bounces at menvi.org
[mailto:menvi-discuss-bounces at menvi.org] On Behalf Of Chela Robles
Sent: Friday, May 11, 2012 12:32 AM
To: This is for discussing music and braille literacy
Subject: Re: [Menvi-discuss] Update On Me

Hello, I guess I should let you know I'm not a candidate for such 
transplants I was born 25 weeks early hence therefore having detached 
bunched up retinas was 1 pound April 6 1985 however if they have had the 
technology they do have now, all this could have been prevented.
I'm really going to be thinking about this for quite some time now...but 
on a good note, I had me some comfort food and beverage: first I went to 
Starbucks and got a grande caramel macchiato and lemon loaf, then for 
dinner I had a cinna stack at IHOP which is four buttermilk pancakes 
with cinnabon cinnamon frosting and filling in between each pancake, so 
now I'll go to bed and wake up fresh tomorrow.

--
"Passion is a great motivator. Music is a life-long learning experience."
--
Chela Robles
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--

On 5/10/2012 6:11 PM, Ben Humphreys wrote:
> Dear Chela,
>
> First off, let's not discount the benefit of light perception. Mine 
> comes and goes and I can assure you that all steps I've taken to date, 
> which have been lengthy, tedious, and expensive are worth it when I 
> can, just every now and then, make out a window frame or the coffee 
> maker. It's like there's still a connection to the visual world, 
> meaning hope for the future.
>
> Second is the question of whether you've ben blind since birth or had 
> the benefit of developing your visual cortex from say age 0 to 6 or 10 
> or so. If your brain knows "how to see", developed during this early 
> age, then this would be an argument in favor of preserving your "good" 
> eye or both.
>
> Also, if your optic nerve is intact, that would be another argument in 
> favor of preserving your "good" eye or both.
>
> Finally, see at least 3 specialists before making an irreversible 
> decision such as this. I think you're in California so your very best 
> opthalmologists are likely to be in San Francisco. Spend the time and 
> money to make the trip because a year from now, you'll have forgotten 
> the money and the time but the decision to go prosthetic is forever.
>
> While it's true that occularists paint very convincing prosthetic eyes 
> (I've had the same one since I was 10), they tend to weep or dry a 
> little. Probably nothing like the pain you're going through now 
> though. As for popping them out at parties for conversation, I've 
> found the shock value to be somewhat traumatizing to the 
> non-initiated. So that's not a benefit.
>
> Each of us has different circumstances and prognosis with our eyes. 
> The strategy that I've always pursued is to maintain as much function 
> and natural tissue as possible so that when new therapies, stem cell 
> regeneration, and even eye transplants hit, you've got the best chance 
> of taking advantage.
>
>
> One of my best eye docs, a world-class respected opthalmologist in New 
> York City predicts 20 years to stem cell success, and another 5 years 
> for eye transplants. So he still thinks the stem cell stuff is a long 
> way off, at least for glaucoma. I think we're much closer for 
> retinitis pigmintosa and macular regeneration.
>
> But closer stilll are higher resolution artificial retinal implants if 
> one can preserve the retina. Barring a functional retina and optic 
> nerve, there's some exciting work going on at Monash University 
> regarding a direct to brain bionic eye. They're looking at the first 
> human implant in 2013 and possible commercial deployment within 5 
> years. The Monash direct-to-brain bionic eye is particularly 
> interesting because it augments, but does not require a functioning 
> eye or optic nerve.
>
> All of these biologic regeneration or artificial vision ideas 
> pre-suppose the brain knows "how to see", developed between about age 
> 0 and 6 to 10 years of age. The jury's still out on whether artificial 
> vision can be interpreted by a brain that's never "seen" before.
>
> Finally, many of you may have heard about the "Brainport" tongue 
> stimulator which captures images from a glasses-mounted small camera 
> and "paints" the light and dark image on the tongue, a sensitive part 
> of the body. I'm in a clinical trial for this device, and although 
> I've been discouraged from discussing results publicly, I can say it's 
> not a panacea. They, like Monash Vision Group, have iterations to work 
> through, filters and smart learning algorythms to apply, higher 
> resolution to achieve, and most importantly, human factors issues such 
> as appearance and comfort to improve upon.
>
>
> In sum, I guess I'm not offering prayers or empathy, but the best 
> scientific knowledge and advice I've been able to gather over the last 
> several years of my own experience going blind. Do the work to see the 
> specialists, ideally at least one in San Francisco,and then go with 
> your gut.
>
> By the way, I have one prosthesis and one biologic eye, now blind from 
> glaucoma. Rational or not, I feel the biologic eye, if we can just 
> keep it limping along, has the best chance for rescue/regeneration.
>
> Hope this helps,
>
> Ben
>
> At 03:51 PM 5/10/2012, you wrote:
>
>> Greetings,
>>
>> As you may recall, I told you that I have some eye issues: burning 
>> hot sensation, feels like sand in my eyes and itches.went to the 
>> opthamologist on April 12, found I have light perception only in my 
>> right eye now whereas it used to be in both, then was referred to an 
>> eye specialist for a v scan which is an ultrasound on my eyes where I 
>> went Monday, now just went back to my opthamologist to see what he says.
>>
>> Well I have some bad news regarding my eyes. I have to make a 
>> decision about whether or not I can live with my eyes the they are, 
>> or to get prosthetic eyes, due to the fact I have Phthisis eyes, but 
>> am now being referred to another eye doctor to confirm and suggest 
>> what needs to be done, and the thought of getting prosthetic eyes 
>> doesn't set well with mom and the fact that God would not be able to 
>> heal them if my eyes are removed is something to consider prayerfully 
>> what I can and cannot deal with, whether this is annoying or whether 
>> I need to have them removed. Please join me in prayer for this 
>> reason.I see the other doctor June 8th at 1:20 PM.
>>
>> Thank you for your support.
>>
>> Phthisis bulbi is a shrunken, non-functional eye that results from 
>> severe ocular disease, inflammation, or injury.
>>
>> Sincerely,
>>
>> Chela Robles
>>
>> -- 
>> -- 
>> "Passion is a great motivator. Music is a life-long learning 
>> experience."
>> -- 
>> Chela Robles
>> Facebook/Linked-In/E-mail: 
>> <mailto:cdrobles693 at gmail.com>cdrobles693 at gmail.com
>> Windows Live Messenger: 
>> <mailto:cdrobles693 at hotmail.com>cdrobles693 at hotmail.com
>> Skype: jazzytrumpet
>> Learning Ally Blog A Lady And Her Trumpet feel free to post comments 
>> by filling out the form on the page at: 
>> <http://tinyurl.com/84tucwv>http://tinyurl.com/84tucwv
>> I volunteer for Bookshare, to find out more and to volunteer with 
>> us,visit: <http://www.bookshare.org/>http://www.bookshare.org/
>> Join us in celebrating our 10th Anniversary!
>> <http://tinyurl.com/752cyrs>http://tinyurl.com/752cyrs
>> Need more space, come join dropbox and start with two gigs of free 
>> space as is this is my referral link to you: 
>> <http://db.tt/XpUTe0E>http://db.tt/XpUTe0E
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