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Subject: Feeling Blind

Written By: CatwomanofV on 12/22/09 at 11:54 am

Many of you know that I have Retinitis Pigmentosa (RP). Before being diagnosed with it back in 1986 (?), I played a game of racquetball with my first husband. He couldn't understand why I didn't see the ball because it was "right there!". I also had trouble seeing when we went into a movie theatre after the movie already started.

When they first told me that I had RP, several things went through my mind. The first thing was, "What is THAT?" I never heard of Retinitis Pigmentosa-and of course, I had to learn how to spell it.  ;D ;D  At the time it was ok because I didn't "feel blind." I still drove a car-at night, too. Ok, so I had a few problems like I mentioned before. Of course I used having RP as a reason not to play racquetball because I didn't like to play the game in the first place. I had one doctor tell me that one day I would be completely blind and another doctor tell me that I wouldn't be completely blind but would just have tunnel vision. It was at that point that I realized that doctors don't know. I have told myself over the years that I will not be completely blind-just have limited peripheral vision. I also figured that IF I did lose my sight totally, there would be a cure by that time.

When I was stationed overseas, I was not proficient on the M-16 that I needed to be (I used to joke that the day I took the test, I helped the person out next to me-shooting at their target instead of my own.)  I made a comment that my vision could be the reason and they made me an appointment with an ophthalmologist in Germany. I didn't understand that because it was already in my records. They aren't going to tell me anything different-and beside, I didn't "feel blind". But, I got a free trip to Germany. I wasn't impressed with the ophthalmologist I saw. She only really looked at me for about 10 minutes and said that I was "unfit for duty" and they were going to retire me. WHAT??!!  That was a shocker. My first reaction was to fight it. But then I thought about it and took some advise from a very dear friend, I let Uncle Sam retire me at 70%.

It was a few years after that I met Carlos. By that time, I had stopped driving at night but still drove during the day. I did file for SSDI (Social Security Disability). They denied me because I guess I wasn't "blind enough." Yeah, that is a good thing but at the time I really needed the money. But that was another issue. By the time I moved in with Carlos, I was driving less and less. I because very panicky when I drove. I don't know if it was my vision (or lack of) that caused me to panic or if I was using my vision as a way to perpetuate my fear but the end result was the same. I finally stopped driving altogether about 7 or 8 years ago. It took me until about 2 years ago to get rid of my car which was sitting in the back yard literally rusting. I knew that was my last car I would ever have. Getting rid of it was facing reality that I would never drive again-even though I had already accepted that fact. Of course the car didn't even run by that point.

In 2006, it was time again to check things out. This time, I was declared "Legally Blind!"  :o :o :o  That was so strange to me because again, I didn't "feel blind." When they first told me, I wasn't too sure how to react. Carlos said, "I'll take care of you" as he hugged me. Part of me was "You better!"  :D ;D ;D Yeah, it is nice to have someone take care of you. I also thought, what if something happens to him, then what? But then the other part of me was like, "You shouldn't HAVE to take care of me. I'm an adult! I should be able to take care of myself!"

Carlos' doctor (who is also a friend) has said that I should start learning Braille. I dismissed it because I knew I wouldn't need it. Even by this time being "Legally Blind," most people don't know that I have any vision problems. I can still read-even without glasses. Many times I even forget that I have RP until I bump into things or trip over things. Carlos forgets, too until he hands me something and wonders why I don't grab it-then he said, "Here" to let me know that he is handing me something. I have learned that there are a few advantaged to being "Legally Blind"-like getting a free permanent fishing license-and even a free permanent hunting license.  :o :o :o Yup-that's right. They gave a hunting license to someone who is "Legally Blind". Go figure!

I figured that it was time to apply for SSDI once again. At first they said that I couldn't and then they found out that being blind is different than other disabilities so I can reapply. Why? I have no idea. Last week, they sent me for another visual fields test. (This shows where I can and can't see.) When I saw the results, I was just totally shocked! There wasn't much area left that I can see. Well, the test may not be accurate. It was basically a manual machine and the woman doing the test didn't seem like she did a through test.

Last night, I did some research and "they" (whoever "they" are) says that I WILL lose my central vision. I have always said that as long as I can still read and still see the dates on coins (with the help of a magnifying glass) I will be ok-and I won't "feel blind". But, lately I have been noticing some changes. Sometimes, things look very "smokey" to me. It seems like I am looking through a haze of some sort. I ask Carlos if he see it and he says no. I also noticed that my eyes have been hurting a lot-like they are dry.

I guess I am starting to "feel blind" that I have never felt before. And I must admit that I am scared. However, there is good news. I found this yesterday: http://www.cnn.com/2009/HEALTH/12/11/bionic.eye/index.html 

I'm not writing this to get your sympathy (if you have read this far), I'm writing this because I need to express my thoughts on this matter. All of you have been there for me through other trying times, this is just one more. I really hope that I don't lose my sense that allows me to come here everyday. That would truly be tragic.

Thanks, for reading (if you did).




Cat

Subject: Re: Feeling Blind

Written By: Frank on 12/22/09 at 12:32 pm

Thanks for sharing.

It is a scary feeling when it feels like something is slowly slipping away and you feel you can't do anything about it.  :-[  , and you don't know what the future holds. And for most people, the sense of vision is the one they would least like to slowly lose.

I feel for ya and you wish it all turns out for the good. I will pray that your vision will be restored.
Hang in there!


Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/22/09 at 12:35 pm


Thanks for sharing.

It is a scary feeling when it feels like something is slowly slipping away and you feel you can't do anything about it.  :-[  , and you don't know what the future holds. And for most people, the sense of vision is the one they would least like to slowly lose.

I feel for ya and you wish it all turns out for the good. I will pray that your vision will be restored.
Hang in there!






Thanks. I am still doing research and I found out there is a place in Vancouver that seems to have some success with acupuncture. I will have to check it out even more. Who knows, Carlos & I may have to take to trip to Vancouver.



Cat

Subject: Re: Feeling Blind

Written By: Frank on 12/22/09 at 12:41 pm



Thanks. I am still doing research and I found out there is a place in Vancouver that seems to have some success with acupuncture. I will have to check it out even more. Who knows, Carlos & I may have to take to trip to Vancouver.



Cat

Let me know the name of the place, maybe I can find out some info for you or drop by and look at brochures (unless they have everything online already)

Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/22/09 at 12:44 pm


Let me know the name of the place, maybe I can find out some info for you or drop by and look at brochures (unless they have everything online already)



Wellspring Clinic  http://www.tcmrp.com/

I just found this after I posted my first post in this thread-so it is new to me.



Cat

Subject: Re: Feeling Blind

Written By: Frank on 12/22/09 at 12:58 pm



Wellspring Clinic  http://www.tcmrp.com/

I just found this after I posted my first post in this thread-so it is new to me.



Cat

The location is not that far from where I live (less than 10K), it's near a well known Children's hospital (BC Children's) and by looking at the address, I am guessing that office might be in a mini-mall (outdoors mall)
I can tell by the Doctor's name he comes from mainland China

I haven't checked the rates but just to let ya know that Vancouver is pretty much the most expensive city in Canada when it comes to anything (most middle class and working class people are calling these Olympics "the rich Olympics", coz they are the only ones who can afford to go)
If you want me to stop by and casually check out the place, let me know

Subject: Re: Feeling Blind

Written By: Frank on 12/22/09 at 1:06 pm

For what it's worth, my wife ( who is Chinese, but from Hong Kong) has used traditional medicine(for other medical issues)  and it has helped her. I have used it myself at times.

Our family is having Christmas lunch  with someone who works just 2 blocks away (at the Children's hospital) and given her position (She's a director, part of her job is being a link to Chinese medical people), I'll ask her is she's head of him or anything about him.

Subject: Re: Feeling Blind

Written By: Ashkicksass on 12/22/09 at 1:29 pm

Cat, I can't imagine what you must be going through.  Just know that we are all here for you.  You have a lot of friends here that love and support you.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/22/09 at 1:43 pm


For what it's worth, my wife ( who is Chinese, but from Hong Kong) has used traditional medicine(for other medical issues)  and it has helped her. I have used it myself at times.

Our family is having Christmas lunch  with someone who works just 2 blocks away (at the Children's hospital) and given her position (She's a director, part of her job is being a link to Chinese medical people), I'll ask her is she's head of him or anything about him.




Thanks, so much. Any info would be great. Like I said, I just learned about this right after I posted my first post so it is very preliminary. I think there may be a clinic in Arkansas, too. I don't have any qualms about using Chinese traditional medicine. Even though I haven't experience acupuncture myself, I have heard others swear by it (including my step-daughter). I think the ancient methods are sometimes better than the modern ones-which is why I like natural & herbal medicine in many cases. 



Cat, I can't imagine what you must be going through.  Just know that we are all here for you.  You have a lot of friends here that love and support you.



Thanks, my friend.



Cat

Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/22/09 at 5:25 pm

I started calling some places around here that does acupuncture. Left messages for 2. The one I did talk to I asked if they did acupuncture for RP and she yes. Not too sure if she KNOWS what RP is and that acupuncture is basically acupuncture and it doesn't matter what it is for. Who knows. I am thinking about making an appointment (but AFTER the SSDI comes through  ;) ).


I swear, I am married to the most amazing man. He just said to me, "If we have to go to Vancouver to restore your vision, we will do that. We will make it work."  ;D  How can I NOT love that man.



Cat

Subject: Re: Feeling Blind

Written By: Frank on 12/22/09 at 6:05 pm


I started calling some places around here that does acupuncture. Left messages for 2. The one I did talk to I asked if they did acupuncture for RP and she yes. Not too sure if she KNOWS what RP is and that acupuncture is basically acupuncture and it doesn't matter what it is for. Who knows. I am thinking about making an appointment (but AFTER the SSDI comes through  ;) ).


I swear, I am married to the most amazing man. He just said to me, "If we have to go to Vancouver to restore your vision, we will do that. We will make it work."  ;D  How can I NOT love that man.

Cat


You can forgive him now for that danish cookies thing. (But of course remind him of that in about 2 years when you have a disagreement on something)

Subject: Re: Feeling Blind

Written By: Foo Bar on 12/22/09 at 7:06 pm


I didn't "feel blind."


I'm not a doctor - but the scariest part of your post was reading, over and over again, how you didn't "feel blind".  The brain is an incredible organ of adaptation, so it's possible for people to have serious deterioration in its ability to see, and for its owner not to notice a thing until vision has been seriously degraded.  The disease progresses slowly enough that our brains can easily compensate for it for years, if not decades.

Because we do most of our "important" seeing with the fovea (the central 3 degrees of vision), and because RP tends to affect the edges of the retina first, peripheral vision suffers first, and central vision last, you've still got time to learn that Braille.  (...and it's also possible you may never end up having to use that knowledge, but only your opthamologist would be able to give anything more than a wild-ass guess on that.) 

Also, because RP is genetic, if you have offspring, I would strongly encourage them to consider DNA testing and/or genetic counseling if they're of reproductive age.

You have a support system, which is the important thing.  The only other important thing to know is that the rate of progression is an individual factor - get regular checkups. 

And this - it may be possible to slow the rate of progression with something as simple as Vitamin A.  I'm normally the first guy to call "quack" on that, but the more I dug, the more I liked what I found.  Looks like real science behind it Vitamin A and retinitis pigmentosa.

A 1993 study suggests that doses of Vitamin A (assuming you aren't contraindicated for high doses of vitamin A, again that bit about asking your doctor) can slow the progression of the disease.  There's not a lot of cash to be made in vitamins, so I don't know of any biotech companies conducting expensive trials on wonder drugs, but that's fine -- especially since NIH (well, NEI under NIH auspices) has reiterated the general recommendation to take some vitamin A at least as recently as 2008.

A little more random surfing revealed this (good synopsis and refers to a 1999 study that confirms the 1993 results), and this (OK, I'm guilty of arguing from authority here, but if even Merck isn't afraid of getting sued for mentioning it... :) as corroborating evidence.

If our positions were reversed, I'd be (a) getting an opthamologist, and (b) asking both my opthamologist and my GP about the risks associated with consuming 15-20K units of vitamin A palmitate daily, and (c) if my GP said to get a liver test to make sure I could metabolize it, I'd get that liver test.  (Sure, I'd miss beer, but not as much as I'd miss being able to read the labels on the beers I've known and loved.)

Disclaimer:  I'm not a doctor.  I don't even play one on TV, much less the Intarwebs.  But as an occupational hazard of trading clinical-stage biotech stocks (y'all in the weight loss thread might have up to three very nice surprises coming in 2009), I know decent science when I read it.  RP's not curable (until the bionic eye is commercialized), the damage isn't reversible (until the stem cell therapies are commercialized) but I'd put good money on the notion that its progression can be slowed between now and the availability of retinal augments and/or transplants. 

(And for once I'm glad that the stopgap measure of slowing the progression of the disease is so inexpensive that I can't make a buck off of it!)

Subject: Re: Feeling Blind

Written By: bookmistress4ever on 12/22/09 at 7:46 pm

You are in my thoughts Cat.  It would be quite frightening and disheartening to deal with current issues and worry (or try not to) about the future.  It is good that you have Carlos as a support system and of course, you have us as well.

Subject: Re: Feeling Blind

Written By: Dagwood on 12/22/09 at 8:52 pm

I'm glad you have a support system while going through this.  You are in my prayers. {{hugs}}

Subject: Re: Feeling Blind

Written By: wildcard on 12/22/09 at 10:14 pm

I read.  It would be nice if it was just something with the eye that can be corrected.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/22/09 at 10:27 pm


You can forgive him now for that danish cookies thing. (But of course remind him of that in about 2 years when you have a disagreement on something)


I found out why he didn't bring home the cookies. He had a legit reason so I do forgive him-this time.  :D ;D ;D



I'm not a doctor - but the scariest part of your post was reading, over and over again, how you didn't "feel blind".  The brain is an incredible organ of adaptation, so it's possible for people to have serious deterioration in its ability to see, and for its owner not to notice a thing until vision has been seriously degraded.  The disease progresses slowly enough that our brains can easily compensate for it for years, if not decades.

Because we do most of our "important" seeing with the fovea (the central 3 degrees of vision), and because RP tends to affect the edges of the retina first, peripheral vision suffers first, and central vision last, you've still got time to learn that Braille.  (...and it's also possible you may never end up having to use that knowledge, but only your opthamologist would be able to give anything more than a wild-ass guess on that.) 

Also, because RP is genetic, if you have offspring, I would strongly encourage them to consider DNA testing and/or genetic counseling if they're of reproductive age.

You have a support system, which is the important thing.  The only other important thing to know is that the rate of progression is an individual factor - get regular checkups. 

And this - it may be possible to slow the rate of progression with something as simple as Vitamin A.  I'm normally the first guy to call "quack" on that, but the more I dug, the more I liked what I found.  Looks like real science behind it Vitamin A and retinitis pigmentosa.

A 1993 study suggests that doses of Vitamin A (assuming you aren't contraindicated for high doses of vitamin A, again that bit about asking your doctor) can slow the progression of the disease.  There's not a lot of cash to be made in vitamins, so I don't know of any biotech companies conducting expensive trials on wonder drugs, but that's fine -- especially since NIH (well, NEI under NIH auspices) has reiterated the general recommendation to take some vitamin A at least as recently as 2008.

A little more random surfing revealed this (good synopsis and refers to a 1999 study that confirms the 1993 results), and this (OK, I'm guilty of arguing from authority here, but if even Merck isn't afraid of getting sued for mentioning it... :) as corroborating evidence.

If our positions were reversed, I'd be (a) getting an opthamologist, and (b) asking both my opthamologist and my GP about the risks associated with consuming 15-20K units of vitamin A palmitate daily, and (c) if my GP said to get a liver test to make sure I could metabolize it, I'd get that liver test.  (Sure, I'd miss beer, but not as much as I'd miss being able to read the labels on the beers I've known and loved.)

Disclaimer:  I'm not a doctor.  I don't even play one on TV, much less the Intarwebs.  But as an occupational hazard of trading clinical-stage biotech stocks (y'all in the weight loss thread might have up to three very nice surprises coming in 2009), I know decent science when I read it.  RP's not curable (until the bionic eye is commercialized), the damage isn't reversible (until the stem cell therapies are commercialized) but I'd put good money on the notion that its progression can be slowed between now and the availability of retinal augments and/or transplants. 

(And for once I'm glad that the stopgap measure of slowing the progression of the disease is so inexpensive that I can't make a buck off of it!)



I see you have been doing some research. I do appreciate that but there is nothing that you wrote here that I didn't already know. I don't have to worry about off-springs because I will not have any children of my own. There was a time when I trying (with my first husband) and I had an eye doctor tell me that I was selfish for wanting kids. It turned out that it wasn't in the cards for me to have kids so that was a misnomer.

I knew about the research with the Vitamin A in cod liver oil since about 1993 and have been taking it since-usually about 12,000-15,000 IUs. However, I must admit that I have made a booboo. For the past year or so, Carlos & I have been taking fish oil. I thought that fish oil & cod liver oil were the same things. I found out yesterday that the fish oil does not contain the Vitamin A that the cod liver oil does. So, Carlos picked me up a thing of cod liver oil.

The problem I have with going to see ophthalmologists is the fact that they dilate my eyes which I hate. Then I really can't see for the rest of the day. Then I have to do a visual fields test which takes about 15-20 minutes per eye. And after being poked, prodded, and probed, they all come to the same conclusion-Yup, you have RP. NO SH!T!!!  They can't tell me any more than I don't already know. Except the fact that my vision has gotten worse. 

I do have a book about learning Braille. I was told that it is harder to learn Braille when you can see. Haven't looked at it in about a decade. Maybe I should revisit it.


You are in my thoughts Cat.  It would be quite frightening and disheartening to deal with current issues and worry (or try not to) about the future.  It is good that you have Carlos as a support system and of course, you have us as well.



I'm glad you have a support system while going through this.  You are in my prayers. {{hugs}}



I read.  It would be nice if it was just something with the eye that can be corrected.





Thanks, guys. I really appreciate that. 



Cat

Subject: Re: Feeling Blind

Written By: coqueta83 on 12/22/09 at 10:55 pm

((((((((((HUGS))))))))))

I'm so sorry you're going through all this.  :\'(

Subject: Re: Feeling Blind

Written By: gibbo on 12/22/09 at 11:58 pm

Wow Cat..I had no idea you were afflicted with this awful condition. I hope you find some way of ceasing the degeneration (or even reversing the it).

I too will keep you in my prayers and thoughts...

Subject: Re: Feeling Blind

Written By: Foo Bar on 12/23/09 at 12:14 am


I see you have been doing some research. I do appreciate that but there is nothing that you wrote here that I didn't already know.


Yeah, with 20/20 hindsight (pun intended), that's not a surprise. :)

http://i575.photobucket.com/albums/ss198/frankiecargo/advice.jpg

And as you also know, when a nerd starts doing tech support, that's his way of saying "hey, that sucks, and the only way I know to express empathy is to try and help you fix it, even if you've already tried rebooting and reinstalling Windows..."  (I've had the dilation treatment - and yeah, it sucks, but look on it as a way to take an afternoon off.  Stay up late enough the night before, and going to bed at 3 in the afternoon doesn't sound so bad...)

Once upon a time, I had a deaf classmate - deaf enough to require an interpreter - and while I never got around to learning ASL, it was something I always had on the back burner as a handy second-line communication skill... then again, I never had quite the same motivation...  I can't even do the alphabet from memory.  *sigh*

May you delay the progression until the guys in the research departments come up with a better solution.  The timeframe of about 5-10 years is about right, so if I had any more money to put down on it, I'd still say your odds aren't that bad.  Still, since everything costs more and takes longer, it wouldn't hurt to have a plan B.  Braille for the fallback, a screen reader/magnifier/visualization aid for the computer, and a few years of extra time in which to make the transition, just in case.

Subject: Re: Feeling Blind

Written By: wildcard on 12/23/09 at 1:07 am

I don't know about Braille, but I will tell you that Over the years my intrest in sign has increased because I'm that bad-, hearing aids wont help and the doctor says I can't have a coklier implant.  Then what really got me intrested was learning about the Deaf culture.  With the brain tumor (medulastoma), Neoplastic Disease, and other stuff, I'm no doubt disabled.

Like I said though, it would be nice if the eyes can be corrected.  

Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/23/09 at 11:04 am

The funny thing is that I know a bit of ASL.


Cat

Subject: Re: Feeling Blind

Written By: wildcard on 12/23/09 at 4:53 pm

^ that's cool

also, I remember while being Charter schooled, I took some test or disability something.  I had to wait for a lady to read me the questions with what looked like a magnifying glass.  She said she could only see me as a shadow unless I was real close.

Subject: Re: Feeling Blind

Written By: snozberries on 12/27/09 at 2:20 pm


I found out why he didn't bring home the cookies. He had a legit reason so I do forgive him-this time.  :D ;D ;D





Did he send them to me instead???? I hope?  ;)

Subject: Re: Feeling Blind

Written By: snozberries on 12/27/09 at 2:35 pm


Okay in all seriousness... thanks for posting Cat I knew you were legally blind but was never sure just how badly you were afflicted.
I can't imagine the frustration and fear associated with that.

of course me being me I came up with some good sides to it...

you never have to lie to someone and tell them they look great when they look like shyt!
and Seeing-Eyed Dog!!!! O0


but then I realize the bad things which I won't list cuz its kinda depressing!


I did google blind internet users tho and found some cool downloads for screen readers- hopefully they work with this site cuz I can't imagine not seeing you here everyday!

That bionic eye thing is cool too! hopefully they improve it and market it sooner than they anticipate.

Carlos is a wonderful and the fact that he's ready to get you to Vancouver for treatment is just one of the ways he's proven it! 

Um.... vancouver is on the west coast  ;) ;) ;) ;)


Anywho....like everyone else I'm here if you need me but you know that already and I think you are amazingly strong and wonderful and beautiful inside and out and all those positive things that make me happy were friends!  :-*

Subject: Re: Feeling Blind

Written By: Badfinger-fan on 01/16/10 at 3:03 am

hey Cat, thanks for sharing here and it's wonderful to see the support and sincere care and concern for you from all your wonderful inthe00s friends. I hope that you'll experience a miraculous healing for your RP condition, and until then I will continue to pray for you and your eyesight. take care

Subject: Re: Feeling Blind

Written By: CatwomanofV on 01/16/10 at 7:38 am

Thanks, everyone. Right now I am waiting to hear from SS. We haven't received any mail since leaving home. Yes, our mail is being forwarded but we having checked it in a few days. We will check it on Tuesday (Monday is a holiday) and hopefully, there will be something from SS.

Before we left, we spent the night in Burlington with the kids. I told them that I wanted to the acupuncture and asked them if they knew any acupuncturists in the area. They didn't but they know people who do. So, I asked them to ask around-which I know they will. I figured I would try out the local acupuncturists first and see how it goes. (No pun intended.) If it doesn't work, then off to Vancouver we go. But, if it does work, it will be a lot easier (and cheaper) than going to Vancouver.

Of course all of this has to wait until we get home at the end of Feb.



Cat

Subject: Re: Feeling Blind

Written By: ninny on 01/16/10 at 2:33 pm

I feel so bad for missing this post to begin with. All my thoughts,prayers and hugs go out to you.There is lots of medical marvels out there now and I hope things work out fine.

Subject: Re: Feeling Blind

Written By: MaxwellSmart on 01/16/10 at 4:15 pm

Hi Cat:

Hugs from me too.  Like I said earlier, if I could give you my eyes, I would. 

A couple of years ago, I had a vocational rehab counselor who was 100% blind.  She had all kinds of computer equipment in her office that allowed her to type, use the Internet and email just like a sighted person.  She also had a service dog, but you are not at that point yet.

I too am dealing with Social Security.  I'm trying again to get on SSI for my chronic neurological and behavioral health symptoms which have left me at a terrible disadvantage in the hyper-competitive and restrictive job market.  My claim is very real but difficult to prove.  One advantage you have with Social Security is vision impairments are not perceived in our society as being the person's "fault."  This is obviously cold comfort, but it might make a difference in how expeditious the SSA can process your claim. 

Best of luck to you.  You are not alone.

Max

Subject: Re: Feeling Blind

Written By: CatwomanofV on 01/17/10 at 2:57 pm


Hi Cat:

Hugs from me too.  Like I said earlier, if I could give you my eyes, I would. 

A couple of years ago, I had a vocational rehab counselor who was 100% blind.  She had all kinds of computer equipment in her office that allowed her to type, use the Internet and email just like a sighted person.  She also had a service dog, but you are not at that point yet.

I too am dealing with Social Security.  I'm trying again to get on SSI for my chronic neurological and behavioral health symptoms which have left me at a terrible disadvantage in the hyper-competitive and restrictive job market.  My claim is very real but difficult to prove.  One advantage you have with Social Security is vision impairments are not perceived in our society as being the person's "fault."  This is obviously cold comfort, but it might make a difference in how expeditious the SSA can process your claim. 

Best of luck to you.  You are not alone.

Max



Thanks, Max.



Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 01/18/10 at 9:59 pm

I told them that I wanted to the acupuncture and asked them if they knew any acupuncturists in the area. They didn't but they know people who do. So, I asked them to ask around-which I know they will. I figured I would try out the local acupuncturists first and see how it goes. (No pun intended.) If it doesn't work, then off to Vancouver we go. But, if it does work, it will be a lot easier (and cheaper) than going to Vancouver.


Although I don't believe it could harm you, I'm highly skeptical that acupuncture could have any effect on the eye. 

If we were talking about musculoskeletal disorders and/or chronic pain, I'd also be skeptical, but could accept a "we haven't done enough research", because there's at least a semi-plausible explanation (endorphin release, diversion, etc) for acupuncture and pain-related disorders, but for a condition such as RP, I have to call quackery as I see it.  This particular form of TCM for this particular condition pegs my BSometer.  Heck, it even pegged the BSometer of this Daoist dude.

Your eyes will be unaffected either way, it's your wallet I'm concerned about.  It's your money, and it's your right to spend it as you see fit.  You may feel happier as you work through a series of ineffective treatments, but you'll get a better outcome by reserving your dollars for evidence-based medicine. If that's an acceptable tradeoff (happiness at the feeling of "doing something", even if it's ineffective, versus a better outcome) for you, go for it. 

(Speaking strictly for myself, I couldn't make that tradeoff, because I couldn't make myself believe in acupuncture-as-a-treatment-for-RP even if someone were paying me.  It'd be like someone telling Richard Dawkins that young-earth Creationists are happier than atheists.  He might even agree that they're happier, but he wouldn't be able to switch teams with sufficient conviction to get the promised happiness.)

Quackery is a pet peeve of mine; I've lost friends to it, not because they stopped talking to me, but because they're dead.  Smite away.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 01/19/10 at 8:00 am


Although I don't believe it could harm you, I'm highly skeptical that acupuncture could have any effect on the eye. 

If we were talking about musculoskeletal disorders and/or chronic pain, I'd also be skeptical, but could accept a "we haven't done enough research", because there's at least a semi-plausible explanation (endorphin release, diversion, etc) for acupuncture and pain-related disorders, but for a condition such as RP, I have to call quackery as I see it.  This particular form of TCM for this particular condition pegs my BSometer.  Heck, it even pegged the BSometer of this Daoist dude.

Your eyes will be unaffected either way, it's your wallet I'm concerned about.  It's your money, and it's your right to spend it as you see fit.  You may feel happier as you work through a series of ineffective treatments, but you'll get a better outcome by reserving your dollars for evidence-based medicine. If that's an acceptable tradeoff (happiness at the feeling of "doing something", even if it's ineffective, versus a better outcome) for you, go for it. 

(Speaking strictly for myself, I couldn't make that tradeoff, because I couldn't make myself believe in acupuncture-as-a-treatment-for-RP even if someone were paying me.  It'd be like someone telling Richard Dawkins that young-earth Creationists are happier than atheists.  He might even agree that they're happier, but he wouldn't be able to switch teams with sufficient conviction to get the promised happiness.)

Quackery is a pet peeve of mine; I've lost friends to it, not because they stopped talking to me, but because they're dead.  Smite away.



I understand your skepticism. I read a book called Ordinary Daylight by Andy Potak. Andy also suffers from RP. He was an artist so his livelihood depended on his sight. When Andy's eyesight was failing him, he was desperate to keep it any way he could. He went over to England because some lady said that she could cure it with bee stings. That's right. He got stung by bees mega times in the back of the neck. That is desperation. Of course it didn't work and Andy is now completely blind. He is now a writer.  BTW, I have met Andy-for a while we traveled in the same circles. I had a friend who knew him better than I did.


I don't think that acupuncture is quackery. It is an ancient form of healing. Even though I don't understand how it works, I have heard many people say that it has helped them with many different ailments. I figured it can't hurt to try. I wouldn't be so nonchalant if they are talking about surgery. I think surgery is more intrusive. There are many surgeons who are quacks-and the side effects can be permanent. With acupuncture it is not-so in that sense, acupuncture is less scary than conventional forms of medicine. Of course today's medical research are only barely touching the surface of RP. That doesn't mean that they don't care-they just haven't come too far yet. Maybe in a few years that will change. But, in the meantime, I figure it can't hurt to try the ancient form of healing. If it doesn't work, I will be no worse off than I am now.

As for the $$$, let me ask you this: How much is your eyesight worth to you?  To me, it will be worth paying $95 for an initial visit & $75 for follow-ups. That is not very expensive when you think how much say having retina transplants. I think it is worth a try. 



Cat 

Subject: Re: Feeling Blind

Written By: Don Carlos on 01/19/10 at 9:34 am


Although I don't believe it could harm you, I'm highly skeptical that acupuncture could have any effect on the eye. 

Smite away.


Seems to me your comments were only meant to be helpful, so no need for smite.  Thanks for caring.

Subject: Re: Feeling Blind

Written By: Foo Bar on 01/20/10 at 1:17 am


But, in the meantime, I figure it can't hurt to try the ancient form of healing. If it doesn't work, I will be no worse off than I am now.


That I'll grant -- the most dangerous quacks aren't the type that leaves its victims no worse off except for a few bucks lighter in the wallet, they're the kinds who encourage people to defer real treatment in favor of the quack's treatment.  They're particularly deadly when it comes to cancer.  Chemo sucks almost as bad as death, so people try to avoid it.  Plus, if chemo fails, it makes the otherwise-healthy months/years before death pretty sucky too.  Avoiding chemo in favor of the cyanide in apricot pits feels great compared to chemo, for a little while, even though it pretty much guarantees death.


As for the $$$, let me ask you this: How much is your eyesight worth to you?  To me, it will be worth paying $95 for an initial visit & $75 for follow-ups. That is not very expensive when you think how much say having retina transplants. I think it is worth a try. 


Oh, it's worth a boatload.  But the problem is that all those costs add up, and there's no evidence that acupuncture works for RP.  Zip.  Might as well buy a vial of Miracle Spring Water.  (The guy selling it says it carries a blessing by the Holy Spirit, and 2000 years of Christians believing in the healing power of said spirit, well, that's gotta mean something, even if it's just as undetectable to modern science as the energy of Qi...)

But that's where I came back with "Hey, if it's worth it to you, go for it".  Unlike the people who sign their own death warrants with cancer, if you're the type who already believes in Qi, (or the Healing Powah of da Holy Spirit, or whatever), in your specific case, you're at least not harming anything other than your pocketbook, and as a libertarian sort of dude, if you get $75 worth of pleasure out of having someone stick you with needles (hey, it's basically a day at the spa), go for it.

It really sucks that the current treatment for RP is essentially "forestall as long as possible with vitamin A until we come up with a hardware fix", and retinal transplants/stem cell therapies are a few years off.  Some people's needs exceed what evidence-based medicine can provide; that need creates an environment in which people seek cures from whomever's offering them.  Moreover, many (I'd wager most!) alternative medicine practicioners are well-meaning and sincerely believe in their own cures.  Your example of the guy who went with bee stings is a perfect example of the problem -- because doctors who say "there's no cure" are lousy salesmen, patients will go to whomever offers a cure.  Unfortunately, that doesn't mean the offered cure works.

What's the Harm? is a website that points out the fallacy of that approach (and the logical inconsitency in my tolerance of it even in "harmless" cases).  Once you start down the path of ineffective treatments, you're placing your health in the hands of people who - sincere as they may be - are better at convincing themselves of their cure's effectiveness than they are at practicing medicine.  The miracle spring water from the Dead Sea didn't work?  Maybe it's radiation, so try some water from Chernobyl that makes you immune to radiation!  (The same guy's selling it, so it must be better than that stuff he sold last year! :)

In the interests of fairness - even doctors who use science-based medicine aren't immune from this.  Science is a human endeavor, and humans are fallible.  I grew up in a family in which, come hell or high water, if you got a cold, Mom would make sure you got antibiotics.  Didn't matter if they were ineffective against a viral infection, they'd at least help prevent that nasty secondary bacterial infection, right?  Well, wrong.  My doctor, who was otherwise a pretty smart guy, caved to patient pressure, even when the studies started coming out that consistently demonstrated that there was no clinical benefit to prescribing antibiotics as prophylactics to people with viral infections.

Sound familiar?  The patient demands a cure.  But there isn't one beyond "wait until your immune system beats the cold off".  But the patient doesn't want to take "ain't no cure" for an answer.  A doctor who's willing to say "fine, try this, at least it won't harm you" supplies something.  Patient gets better, (or at least doesn't get any worse).  Must've worked, (or at least, not done any harm) right?  It took my doc about 5 years to cure himself of the habit of bowing to patient pressure, took me another year to really understand why he started fighting back, and took my Mom another 2-3 years to "get it" and stop asking for something that was doing no good, and had a harmful side effect.  No direct harm to us except for our wallets, but my family's little experiment in the psychology of belief, repeated millions of times in thousands of doctors' offices, was unlike acupuncture for RP in that there was harm to more than just the patient's wallet -- I did my tiny bit to help create antibiotic-resistant terrors like VRSA and MRSA.  (Cool story, Bro!)

But it could have been worse.  "There's no cure" for the common cold, and we could have taken zinc gluconate as an over-the-counter remedy instead and lost our sense of smell.  (The punchline on the Zicam fiasco is that if it had truly been homeopathic, it wouldn't have had a single atom of zinc in it, and would have been harmless except to the wallet.  But because there was enough of an active ingredient (2% zinc gluconate, the maximum under some regulation under which they could claim "homeopathic" as a marketing buzzword and thereby escape actual FDA regulation) present in the quack remedy, people didn't just lose their wallets, they also lost their sense of smell. 

(The only good news about that mess was that investors in Matrixx Initiatives ended up losing their shirts.  The stock went from $20 to $4 when the news broke, and never came back.  Now, if only we could do the same to the people behind those Head-On commercials.  Problem is, with wax sticks, there's no active ingredient, so there's not going to be any negative side effect, so Head On's just a placebo.)


Seems to me your comments were only meant to be helpful, so no need for smite.  Thanks for caring.


Thanks and karma to both of you for getting where I'm coming from.  Y'all have seen me posting long enough to know I suck at the touchy-feely side of being supportive; it's all just systems to me.  If I'd gone into medicine, I'd make House look like a paragon of bedside manner...  There are crazier (and more dangerous) ineffective treatments than a day at the spa, so avoid them and be sure to have a few bucks for the copays when/if the retinal transplants (be they made of meat or silicon) finally come around.

(The health care reform thread's that-a-way, but even under the current system in the States, even the most tight-fisted insurance company would be delighted to cover the costs - even at $100K+ per use, and I'm aiming high on cost guesstimate side - of a transplant/implant that takes a future 30-40 year long-term disability claim off the books and restores them to the working/taxpaying/insurance-premium-paying side of the ledger.)

Subject: Re: Feeling Blind

Written By: CatwomanofV on 01/20/10 at 8:04 am

Karma right back at ya, Foo Bar. Please watch some of these testimonials.


http://www.tcmrp.com/casereports.html


Yeah, I understand that this is one clinic's website and then are not going to put up a testimonial that says, "This treatment sucks and doesn't work." When I first saw them-as I still am now-I'm skeptical. But, I am keeping an open mind-and I'm keeping hope. Maybe that IS what I need is hope. Hope that someday I will not be sitting in the dark not being able to see the love of my life's face.



Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 01/23/10 at 12:02 am

Personally, any testimonials make me more skeptical, not less, but that's because they all sound familiar, no matter what the product is.  Not quite as nuts as the informercial for the blinking LED lights as a cure for arthritis, but I didn't see any reasonable mechanism for why one should expect TCM to work.)

Speaking of which, pseudoscientists reached a new low today:  BBC reporting on fake bomb detectors that not only didn't work, they couldn't possibly have worked.  Ever.  According to the BBC article, the fraudulent device has been hawked for the better part of 15 years, and nothing done to stop it.  The FBI's warnings against this scam never reached the Iraqi government, though, and the scammers managed to con $85M in sales at $40,000 apiece, and Dobbs only knows how many people have been killed as a result of troops ordered to use them.

"Major General Jehad al-Jabiri, who appeared at a press conference with Mr McCormick following the December explosions, said he did not "care about Sandia" and knew more about bombs than the Americans:  "Whether it's magic or scientific, what I care about is it detects bombs," he said."

He is the very model of a modern Major General,
Unlike Sandia scientists, he delivers testimonials,
He doesn't care if it is magical or scientifical,
Because he gets paid even if his troops end up as vegetables.

But, I am keeping an open mind-and I'm keeping hope. Maybe that IS what I need is hope. Hope that someday I will not be sitting in the dark not being able to see the love of my life's face.


Ain't nothing wrong with hope - the placebo effect really isn't fully understood.  The most interesting thing is that it's actually getting stronger over time, which is even more surprising. 

Compared to bogus bomb detectors, at $75 per session, if it makes you feel better for the next 5-10 years while the stem cell or cybernetic implant folks figure out a fix, maybe it's worth it.  You do, after all, get 5-10 years of hope outa that.  (It wouldn't work for me; I'm too skeptical.  But I'm not you, so I go back to my original "your eyes, your wallet" comment.  I'd be the guy signing up for Phase III clinical trials, assuming any drug got there with decent Phase II results, which hasn't happened yet.)

Neurotech's phase 2 trials for NT-501 for RP came up meh - they're not sure if it's because it doesn't work on RP, or because they didn't run the study long enough.  (They got better results for age-related macular degeneration, but that's a different condition.)  If (that's a pretty big "if") they proceed to phase 3 trials for NT-501 for RP in 2011-2012, and if those phase 3 trials are successful (again, that's where the "hope" comes in), I'd expect FDA fast track designation (6 months vs 10 months to decision) which could mean approval by 2015. 

I think these are the guys working on the implant tech.  They're still in Phase II, so you're looking at 2011-2012 for phase 2 results, which (if they're good) puts phase 3 at 2013-2015, and an FDA decision by 2016ish.

Looks like Allergan started phase I (?) trials in 2008, but I couldn't find the results - either because they haven't been published yet, or because it didn't work.

You want hope?  The current list of clinical trials demonstrates that there are several thousand really smart people working on (and a few hundred million dollars invested in research on) this problem right now.  Science, like pimpin', ain't easy, but seeing as how the winner's company gets a billion dollars and the knowledge that tens of thousands of people get to keep their eyesight, if someone's idea doesn't cut it in clinical trials, someone else with a different idea will step in and take their place.  Having only done one night's research, I'd wager good money that there'll be a real treatment to halt the progression of the disease within 10 years, and maybe (that's a big "maybe") even reverse it.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 01/23/10 at 8:13 am


Neurotech's phase 2 trials for NT-501 for RP came up meh - they're not sure if it's because it doesn't work on RP, or because they didn't run the study long enough.  (They got better results for age-related macular degeneration, but that's a different condition.)  If (that's a pretty big "if") they proceed to phase 3 trials for NT-501 for RP in 2011-2012, and if those phase 3 trials are successful (again, that's where the "hope" comes in), I'd expect FDA fast track designation (6 months vs 10 months to decision) which could mean approval by 2015. 

I think these are the guys working on the implant tech.  They're still in Phase II, so you're looking at 2011-2012 for phase 2 results, which (if they're good) puts phase 3 at 2013-2015, and an FDA decision by 2016ish.

Looks like Allergan started phase I (?) trials in 2008, but I couldn't find the results - either because they haven't been published yet, or because it didn't work.

You want hope?  The current list of clinical trials demonstrates that there are several thousand really smart people working on (and a few hundred million dollars invested in research on) this problem right now.  Science, like pimpin', ain't easy, but seeing as how the winner's company gets a billion dollars and the knowledge that tens of thousands of people get to keep their eyesight, if someone's idea doesn't cut it in clinical trials, someone else with a different idea will step in and take their place.  Having only done one night's research, I'd wager good money that there'll be a real treatment to halt the progression of the disease within 10 years, and maybe (that's a big "maybe") even reverse it.



I am surprised that I haven't heard about some of these yet. I'm impressed that you DID find something that I didn't know. But my question is why are even looking? Not that there is anything wrong with doing that but I am just baffled (and appreciative) because this is MY problem, MY disease.


Cat

Subject: Re: Feeling Blind

Written By: snozberries on 01/23/10 at 11:18 am



I am surprised that I haven't heard about some of these yet. I'm impressed that you DID find something that I didn't know. But my question is why are even looking? Not that there is anything wrong with doing that but I am just baffled (and appreciative) because this is MY problem, MY disease.


Cat


but we care about you.... I looked up stuff too but didn't get far cuz reading all that technical stuff makes me  go blind  ;)

Subject: Re: Feeling Blind

Written By: Foo Bar on 01/28/10 at 1:12 am


I am surprised that I haven't heard about some of these yet. I'm impressed that you DID find something that I didn't know. But my question is why are even looking? Not that there is anything wrong with doing that but I am just baffled (and appreciative) because this is MY problem, MY disease.


1) That's just how we roll around here.
2) You're not the only one with it.  I have a former co-worker with it.  Point being, you're not alone.
3a) I play biotech stocks in my spare time (where there's a buck to be made), and
3b) I live in a human body (which I'd like to understand better, because if it breaks down, I'm gonna have to fix it), and
3c) I think science is pretty neat (and get a kick out of seeing whether someone's wild idea actually works or not).

By 3a-3c, suffice it to say that I do a lot of research just for the hell of it. 

The funny part is that because I "knew" that there were no cures for RP, I forgot all about the clinical trials database.  The database contains all the trials, including those from privately-held companies that I'd have never heard of and couldn't invest in even if I had :)  I damn near kicked myself when I realized I should have looked there first.  The early-stage research is below the radar of the markets, because it's either done in university labs or in companies too small to go public.  And since there's nothing on the market for RP, by definition, any research is flying under that radar.

In the biotech world, the cycle of drug development goes something like this:

1) A scientist comes up with an idea, a chemist comes up with a way to build a molecule that the scientist thinks might work.
2) Most of this stuff never sees the light of day because the chemist can't figure out how to make the molecule stay together long enough to work in a test tube and not kill rats.  We're at the stage where grad students are eating ramen, just to get their names on the bottom of a paper as someone who helped out.
3) Phase 1: if it doesn't kill rats, and it works in a test tube, it might get a phase 1 trial to see if it's not also poisonous to humans.  Or if it does anything at all.  A few dozen patients, tops.  Medical interns take lots of notes.
4) Phase 2: If it makes it past phase 1, you do a phase 2 trial to see if the drug works better (or worse) at higher doses, and at what doses the side effects (there are always side effects) outweigh the benefits.  A few dozen more patients.
5) Phase 3: If you make it past phase 2, you do a phase 3 trial in a large group, in a dose that you determine from the phase 2 trials, and in a form that you'd actually expect to prescribe to Joe Sixpack.  You make the group big enough to be sure you didn't just get lucky in phase 2.  (A cure for the common cold that carries a 1/100 chance of killing you outright isn't worth it, but it might make it past phase 2 if you only tested it on 20 people!)  You must also demonstrate "non-inferiority" - if there's already something on the market, you've gotta show that your drug is either more effective than the other guy's (it works better, or it covers cases the other guy's doesn't), or that it has fewer side effects than the other drug.  Preferably both.
6) You take your phase 3 data to scientific conferences and submit it to medical journals.  People who have no interest in your company's success do peer review and try to tear your data apart.  If you did the science right, you get published.
7) Phase 3 data, plus peer review, equals a "New Drug Application" (Cue Huey Lewis!) application to the FDA. 
8) The FDA looks at it for 2-3 months, and decides if it's worth looking at now ("OMG you cured cancer!  We'll make up our minds in six months!"), or later ("OK, yet another brand of cough syrup, we'll call you back in ten months"), or ever ("We reject the application.").  The FDA digs into your data, inspects your factories, hauls your scientists in front of an advisory board to answer questions about whether the risks outweigh the rewards (A cure for the common cold that causes your hair to fall out isn't gonna cut it.  A cure for cancer that causes your hair to fall out?  Not so bad). 
9) If you did it right, you get approval - and hopefully you've got a sales team in place, or a big company's willing to buy it from you and use their salesweasels.  A few months after this, your factories are humming, and the drug's in production.  Doctors are looking at the label (listing the side effects, and telling them who's a good candidate for the drug and who shouldn't touch it with a ten foot pole, which is all part of the 6- or 10-month decision process of step 8), and prescribing it to patients.  Your salesweasels, having flashed their boobs at the insurance company's reps, have gotten the insurance company to cover 80% of the cost, and your patients are paying their $15.00 co-pay to taking your drug and hopefully (see step 11!) getting better without side effects. 
10) If you didn't do it right, you get a "complete response" letter; the FDA says "We don't buy it.  Give us a complete response to all the stuff we think you forgot to ask."  Sometimes that means a delay of another year or so. 
11) Phase 4: Even if you get the thumbs-up, you might need to keep track of whether or not your patients start dropping like flies.

And that's why it takes 5-10 years and $millions to get a drug to market.

Plus, beating all those stages doesn't mean your drug is safe.

A failure story:  "There's a million painkillers on the market, what's so special about yours other than the heart attack risk?"

In the case of Merck's Vioxx, the data showing non-inferiority demonstrated a decent painkiller with fewer gastrointestinal side effects than other NSAIDs.  The drug was approved in 1999, and by the time the world figured out (in 2004) that some of that non-inferiority data had been fabricated (!), other data came in showing an elevated risk of heart attacks.  Now, if you've got debilitating chronic pain, that might be a fair tradeoff, but if you're in the early stages of arthritis, you're probably better sticking with what's currently on the shelf.  Merck pulled the drug in 2004, the stock's price was cut in half, and although the FDA, in 2005, reviewed the safety data and gave the drug the nod by the slimmest of margins, Merck (probably wisely) never reintroduced it. 

A success story:  "Here's a life-altering disease that nobody else has cracked in 50 years."

Cue House: "It's not Lupus!"  HGSI's Benlysta showed fantastic results as a lupus treatment in July 2009, and confirmed the win in November 2009.  The stock went from $3 to $15 when the first phase 3 results came out, and from $20 to $30 when the second phase 3 study confirmed the results of the first.  This drug will be available in 2010, 2011 at the latest.

I typically put money into a stock when I'd consider taking the drug myself.  For non-serious conditions, that's probably "after phase 3, before FDA approval", and for serious conditions, that's probably "when the phase 2 data are strong, and the phase 3 studies are more than halfway through and haven't been terminated due to unforseen side effects".  If I actually wanted to take the drug, instead of just risking a few coins, I'd change that to "when the phase 2 data are strong, and when a phase 3 study is about to open, and when I've talked to at least two doctors (...and I mean doctors unaffililated with the study!) about whether or not I should consider enrolling."  (After all, if I don't volunteer as a phase 3 guinea pig, I have to wait a year or two for results, and another year or two for the FDA to make up its mind about whether it agrees with the conclusion of the experiment.)  Your mileage may vary, and I won't pretend that's an easy decision.

Anyways, I've seen enough press releases to know what "fail" looks like, what "we don't know" looks like, and what "win" looks like.  That second phase 3 HGSI link for lupus is what raw unadulterated WIN looks like.  Phrases like "statistically significant", "and "adverse side effects no worse than" are what you're looking for, if you see words like "delighted", you know you're really onto something.  "Pivotal" is a pretty happy word, and "Special Protocol Assessment Agreement" is essentially biospeak for "Rather than doing something that would impress us, we asked the FDA what it would take to impress them, they told us what they wanted to see, and we did it."

(BTW, Snozzberries is right in that your eyes'll glaze over after a while.  You eventually get used to it after a while, but it's atrocious writing.  The actual research papers are even less penetrable than the press releases.)

Back to RP:  We have a couple of firms with phase 1 data, and not enough data to establish statistical significance (yet) on the results, but we've established (in the strictest scientific sense, as opposed to my colloquialisms earlier :) that the treatments don't harm, but that they might help.  My take on the phase 1 data is that they're in the "we don't know" category, but that's pretty good for phase 1.  I'll keep an eye out for phase 2 data every few months. 

Disclosures: I've never owned MRK or HGSI, just watched the stories from afar.  Going back a post, if I'd known a publicly-traded company was behind the zinc gluconate and loss-of-smell thing, I'd have shorted MTXX, but didn't know the company existed until after the story hit.  No matter how much reading you do in your off-hours, there's so much biotech going on that it's impossible for one human to follow everything.  But then, that's why real analysts, who wear suits from 9 to 5, get paid the big bucks.  They sure as hell don't get paid to sleep.)

Subject: Re: Feeling Blind

Written By: CatwomanofV on 01/28/10 at 9:39 am

^ Interesting-and yes, I read it without my eyes glazing over-well, not much.  ;)


What caught my eye mostly was the drug for lupus you talked about because I wonder if that could have helped my sister.  :\'( :\'( :\'( :\'(  But that is another issue-for another thread.



Cat

Subject: Re: Feeling Blind

Written By: karen on 01/28/10 at 10:32 am


^ Interesting-and yes, I read it without my eyes glazing over-well, not much.  ;)


What caught my eye mostly was the drug for lupus you talked about because I wonder if that could have helped my sister.  :\'( :\'( :\'( :\'(   But that is another issue-for another thread.



Cat


I also noticed the lupus thing.  My mum took part in a drug trial in the UK a few years ago.

Subject: Re: Feeling Blind

Written By: Foo Bar on 01/30/10 at 12:11 am


^ Interesting-and yes, I read it without my eyes glazing over-well, not much.  ;)


I'll keep this one short :)


What caught my eye mostly was the drug for lupus you talked about because I wonder if that could have helped my sister.  :\'( :\'( :\'( :\'(   But that is another issue-for another thread.


Bummer. :(

I'll squeeze in one more example of the process, though - this Wikipedia article on Dendreon's Provenge, a potential treatment for prostate cancer, outlines another wild and wacky ride through the FDA's process.  The thumbs-up or thumbs-down decision comes on April 30, 2010.  (For prostate cancer, sometimes the right answer is to "ignore it and you'll die of old age before it kills you".  Other times, the right answer is "panic".  This one's probably going to be an important drug for us guys, but it's not necessarily going to be the first line of treatment even if you're unlucky enough to fall into the "panic" category.  As always, ask a doctor...)

Next time something actually gets approved for some other sorta-widely-known condition, I'll start a "neat results in biotech" thread, and we can get back on topic with RP here.  There's always going to be a crazy biotech story going around, and the more of 'em people get a chance to read, the more likely they are to be able to calibrate their own BS Detectors.  No point in cluttering this thread with all of 'em.  

Subject: Re: Feeling Blind

Written By: Foo Bar on 11/04/10 at 10:27 pm


I think these are the guys working on the implant tech. 


Been a while.  Rechecking through the old posts, it looks like 2-sight is still at it.

But the real advance this year comes from Germany, as of a couple of days ago. 

Here's the paper: Subretinal electronic chips allow blind patients to read letters and combine them to words

This was tested against three retinitis pigmentosa patients who had been totally blind for years.  Turn the device off, they're still blind.  Turn it on, and they can see.

I don't know how long the paper will be available online for free.  I'd suggest downloading the full PDF and saving it locally.  Or printing it, and/or the HTML version and taking notes of the researchers, the journal, and so that you can ask opthamologist in a couple of years  if this research made it to phases 2 or 3.

The idea is something like this: if "Although blindness owing to photoreceptor degeneration presently remains incurable, inner retinal nerve cells may continue to function for many years despite neuronal remodelling", then why put the sensors outside the eye and then try to cram that data directly into the optic nerve, when you can build an electronic replacement for the rods/cones themselves and put the replacement beneath the retina, in order to let the still-functioning cells behind the retina do their jobs? 

In other words, what happens when you use the fully-functional lens, replace the destroyed rods/cones with microphotodetectors, and then just dump the photodetectors' data into the cells beneath of the retina (which are just fine), and let those cells handle the complicated interface between the light-detecting cells and the optic nerve.  This approach means that the smaller you can make the photodetectors, the more of 'em you can cram into the fovea, and the higher the resolution you can do.   It also means no training.  You open your eyes and you actually see.

(The funky headgear isn't actually involved in this -- it's merely for analyzing what the sensor is seeing, and for powering the device - in a production device, it would be trivial to inductively couple an internal battery to an external charger (like those cordless cell phone chargers), and wirelessly interface with a transceiver (bonus!  You get a "video out" port for your brain!).)

I read this paper expecting the usual "artist's concept" diagrams showing what it's supposed to look like... nope, here it is, as installed in a human eyeball.  And here are some videos of Patient 2 seeing for the first time in years.  A test array of 4x4 pixels for direct stimulation was installed, but the actual viewing resolution is 38x40, or 1520 pixels.  That's not much by digital camera standards, but the concept's been solidly proven, and by the time this makes it to phase 3, it'll be possible to assemble much denser arrays of smaller microphotodiodes. 

http://www.youtube.com/v/1dmOHjTeKgQ

...but even at 30x48, Miikka sure seems happy.  Here he is, seeing his name misspelled, and asking "You think I'm a Formula 1 driver?"  (9 videos from the experiment)

Really.  No funky headgear required.  Not a camera feeding input to a brain, a camera embedded in the eyeball, and his eyes' natural saccadic movements are enough to keep the image persistent as he stares at his hand, unaided.

http://www.youtube.com/v/QQoAx0Lufrw

I don't want to raise false hope.  At a minimum, I guess that a working device is probably 5-10 years away, and a phase 3 trial is at least 3-5 years away.  This was a phase 1 study - not "let's test a cure!", not "how well does it work", definitely not "how well does it work in a large population over a long period of time", but "is our gadget safe enough to not kill the patient, will the idea work at all, and if it does, how are we supposed to install it?"  They ran it against only three patients, all of whom showed improvement, but Patient #2 - who got a slightly different installation than the other two - worked out leaps-and-bounds ahead patients 1 and 3.  Next step will be long-term studies to see just how long these implants can be tolerated in humans. 

Biocompatibility of meat and circuits is still a hard problem, and it could fail there, but Geordi LaForge's visor is no longer science fiction, it's obsolete, and LaForge's implants - yes, at very low resolution, and only in black and white - are now science fact.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 11/06/10 at 12:22 pm

That is way cool, Foo Bar. Karma for posting it. I did download that PDF file and I will read it at another time (when I am not so tired). Like I said, even though I am legally blind right now, I am still in the seeing world. Most people don't even realize that I am visually impaired-not to mention blind until I tell them. I am hoping by the time I will need something like that, it will be in common use.




Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 11/06/10 at 8:28 pm

I am hoping by the time I will need something like that, it will be in common use.


Ditto.  And that's a reasonable bet given how far digital cameras have come in the past 10 years (0.3 megapixels to 10MP and up). 

CPUs are already so powerful that a $100 point-and-shoot camera can do plenty of fancy stuff with the data - so it's not a stretch to assume that some processing could be done before transmitting it to the outputs, effectively getting more useful data out of a limited number of pixels.  Furthermore, the ability to print smaller components onto lighter and more flexible substrates (including biocompatible substrates) has widespread commercial application.  There are lots of people working on unrelated problems and spinning off useful bits and pieces of tech along the way, so these guys don't have to do everything from scratch.  I won't place on a bet on when/if something like this makes it to a large-scale trial, but if that does happen, I would bet that whatever's being trialed will be at least as good as what you have now.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 09/09/11 at 6:06 pm

UPDATE:

I'm sure many of you know that I have my hearing for SSDI next month.  I have heard from a couple of different people about being approved BEFORE the hearing. That would be nice. But if not, I am ready. I just had a new visual fields done this week and I have another (different) one that will be done before the hearing. I also will have a lawyer with me-so I should get it.

I have made a decision.

I also mentioned this in the monthly thread in the PPP-that my ophthalmologist called me and wants me to see THE RP specialist in Boston. At first I was like, "WOO HOO! A trip to Boston!" But, after thinking about it, I am opting out! Carlos couldn't understand why I was so hesitant about calling the ophthalmologist back to set something up. But, then I explained. What the ophthalmologist said about this guy was that he is a big advocate for the high doses of Vitamin A-and of course he would be because he was the one who wrote the study on it (Eliot Berson out of Harvard for anyone wanting to do the research). I'm sure if I go, he will basically want me to take that. I am NOT comfortable taking high doses because it can be toxic. I do take some right now-but I don't want to take high doses. I have been doing more research on it. Every thing I have read said that it MAY slow the progression. It says that there isn't enough evidence to prove or disprove that it works.

However, I have read a lot of reports that acupuncture seem to work-not just slowing the progression but actually IMPROVING vision. I know Foo is going to come back and say that I am a fool to dismiss what the medical field is saying and go with an alternative. I do have an acupuncturist. After the SSDI hearing, I will discuss this with her and see if she can help me. If not, there are other places that can. And if acupuncture doesn't work for me, I can always do the Vitamin A.



Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 09/10/11 at 1:12 am

I know Foo is going to come back and say that I am a fool to dismiss what the medical field is saying and go with an alternative. I do have an acupuncturist. After the SSDI hearing, I will discuss this with her and see if she can help me. If not, there are other places that can. And if acupuncture doesn't work for me, I can always do the Vitamin A.


Damn right I am.  But you're a big girl, they're your eyes, and it's your call.

Thanks for the reminder, though.  


Been a while.  Rechecking through the old posts, it looks like 2-sight is still at it.


My turn to update:  2-Sight isn't "still at it".  They got it across the finish line.  Retinal implants are no longer on the drawing board.  They're real.  They're commercially available in Europe today.  Alfred Mann's Argus II retinal prosthesis was approved in Europe last March, and you do have a Plan B.  

ZyVjK7sktvw

So even though the acupuncture won't work, and while I honestly don't know (and I really don't want to guess, because I'm emphatically not qualified to speculate!) whether the risks from the side effects of higher doses of Vitamin A outweigh the probaility that you'll successfully delay the blindness of RP for long enough to go with Plan B.

By the time you're blind enough to need a retinal prosthesis, the Argus II (60 pixels, presumably a 6x10 array?), the Argus III (200+ pixels? 1000?) will have been approved in the US.  (LLNL's been quiet over the past couple of years, but here's how it's built.) There's a conference (ICNPD-2011) this November in Australia that might be of interest to your physicians.

Long story short, you got a lotta damn smart people pullin' for ya, and it's likely that you'll stave off blindness for long enough that implants of superior resolution will be available.  That renders the debates over the risk/benefit tradeoff of the Vitamin A stopgap either obsolete, or at least turns it into a question phrased in terms of "You'll see at 654x321 in 20xx rather than 43x21 in 20yy", which is a monumental improvement over "you go blind in year 20xx instead of year 20yy".

The longer you can wait for an implant, the better your vision will be.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 09/10/11 at 11:06 am


Damn right I am.  But you're a big girl, they're your eyes, and it's your call.

Thanks for the reminder, though.  

My turn to update:  2-Sight isn't "still at it".  They got it across the finish line.  Retinal implants are no longer on the drawing board.  They're real.  They're commercially available in Europe today.  Alfred Mann's Argus II retinal prosthesis was approved in Europe last March, and you do have a Plan B.  

ZyVjK7sktvw

So even though the acupuncture won't work, and while I honestly don't know (and I really don't want to guess, because I'm emphatically not qualified to speculate!) whether the risks from the side effects of higher doses of Vitamin A outweigh the probaility that you'll successfully delay the blindness of RP for long enough to go with Plan B.

By the time you're blind enough to need a retinal prosthesis, the Argus II (60 pixels, presumably a 6x10 array?), the Argus III (200+ pixels? 1000?) will have been approved in the US.  (LLNL's been quiet over the past couple of years, but here's how it's built.) There's a conference (ICNPD-2011) this November in Australia that might be of interest to your physicians.

Long story short, you got a lotta damn smart people pullin' for ya, and it's likely that you'll stave off blindness for long enough that implants of superior resolution will be available.  That renders the debates over the risk/benefit tradeoff of the Vitamin A stopgap either obsolete, or at least turns it into a question phrased in terms of "You'll see at 654x321 in 20xx rather than 43x21 in 20yy", which is a monumental improvement over "you go blind in year 20xx instead of year 20yy".

The longer you can wait for an implant, the better your vision will be.



I am hoping that I will NEVER need an implant. But, if there comes a time if & when I do...


BTW, karma to you.


Cat

Subject: Re: Feeling Blind

Written By: Don Carlos on 09/10/11 at 11:19 am

You forgot to mention the clinic in Havana that is approaching the problem through restoration

Subject: Re: Feeling Blind

Written By: CatwomanofV on 09/10/11 at 11:22 am


You forgot to mention the clinic in Havana that is approaching the problem through restoration



I didn't forget. I was going to post about that last night but decided against it because I would need to do more research on that, too. And I don't think I am at that point yet, either.



Cat

Subject: Re: Feeling Blind

Written By: wildcard on 09/10/11 at 5:57 pm

well Cat, your researching for yourself and that's the best thing you can do for yourself. I wouldn't know about the ability to recover and what you might need to have recovered. 

Subject: Re: Feeling Blind

Written By: MaxwellSmart on 09/11/11 at 12:57 am

Best of luck with your eye endeavors.  I do so hope they can improve your vision, or at the very least, stop it from getting worse. 

Thanks for the update.  Feel free to PM me if you want to talks.

{{{{HUGS}}}}}

Max

Subject: Re: Feeling Blind

Written By: Foo Bar on 09/11/11 at 1:51 am


You forgot to mention the clinic in Havana that is approaching the problem through restoration


Yeah, that's news to me too.  What about that?  (There are plenty of quacks in Central America, but there are also scientists in Cuba who do decent research on a shoestring budget.  At the moment I have no data upon which to base an opinion, and I consequently have no opinion.)


I am hoping that I will NEVER need an implant. But, if there comes a time if & when I do...


That's an entire message board full of us.  

If they were my eyes, even if I could no longer resolve anything (and I mean, "less than the 60 pixels currently available"), I'd wait for 1000+ pixels for one eye, and work with that until I could get at least 16K-64K pixels (160x100 / 320x200) in the second eye.

If you're lucky, you'll have 16K for your first eye, which will give you the luxury of waiting until your second eye can be run at VGA or better.

Side note: Anybody born today with retinitis pigmentosa may well end up - 20-40 years from now - with superior vision to the rest of us.  They'll be able to see in the infrared (trivially, by removing the IR filter on the glass lens in front of the CCD that transmits data to the implant) and with a change of glasses, they'll also be able to see in ultraviolet.  Something very much like Geordi's visor will be reality within their lifetimes.

(Edit: I couldn't BBCode that night.  /fail)

Subject: Re: Feeling Blind

Written By: 80s_cheerleader on 09/11/11 at 9:30 am

Ultimately, they're your eyes and you're the one who has to make the decision. I know you well enough to know that you don't go into anything with your eyes closed ;)

Personally, I'd be going with the Vitamin A simply because I'm not sure acupuncture would be an option because of my dermatographia.  In the meantime, I'd also be looking into every other possible option like you are :)

Subject: Re: Feeling Blind

Written By: Don Carlos on 09/11/11 at 11:19 am


Yeah, that's news to me too.  What about that?  (There are plenty of quacks in Central America, but there are also scientists in Cuba who do decent research on a shoestring budget.  At the moment I have no data upon which to base an opinion, and I consequently have no opinion.)



Cat read a short description to me.  The research is related to stem cell approach, so the aim is regeneration.  They apparently have achieved some success.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 09/11/11 at 12:24 pm


Cat read a short description to me.  The research is related to stem cell approach, so the aim is regeneration.  They apparently have achieved some success.



I also find a website that gives the prices-I'm talking BOOCOO bucks! There is also the little problem about being ALLOWED to travel to Cuba.  ::)  As I read to you (but others here are not aware)-that treatment involves surgery. I'm not ready-both physically & emotionally for that.



Cat

Subject: Re: Feeling Blind

Written By: wildcard on 09/11/11 at 5:56 pm

I don't know about your particular case nor much about the eye, but in my case with my deafness,  I learned how much I never  heard right all my life, so as soon as I went hard of hearing ( you cant hear anything, but it's not enough for an implant) I was begging for the implant.  I didn't think I had anything to loose.  Maybe is easier for someone who has already had brain surgery to conclude.  The implant didn't give me any problems. 

Subject: Re: Feeling Blind

Written By: CatwomanofV on 09/11/11 at 6:37 pm


I don't know about your particular case nor much about the eye, but in my case with my deafness,  I learned how much I never  heard right all my life, so as soon as I went hard of hearing ( you cant hear anything, but it's not enough for an implant) I was begging for the implant.  I didn't think I had anything to loose.  Maybe is easier for someone who has already had brain surgery to conclude.  The implant didn't give me any problems. 



I don't have problems with implants. I'm saying that I am not at the point yet-hopefully, I will never be. But, I also know that there may be a time when I will be. For you to get implants, I'm sure that was the right decision for you at the right time. Only YOU could make that choice.



Cat

Subject: Re: Feeling Blind

Written By: wildcard on 09/11/11 at 10:13 pm

I thought you might be scared of the implant.  Keep doing your research.

Subject: Re: Feeling Blind

Written By: Foo Bar on 09/12/11 at 11:57 pm


I thought you might be scared of the implant.  Keep doing your research.


Disclaimer: Not my eyes, but here's what I'd do if they were mine.

I'll clarify a bit on retinal implants.  Cochlear implants are Pretty Darn Good these days.  Today's retinal implants are where cochlear implants were 50 years ago (first approved ca. 1961).  Namely, the "holy crap, we can actually do this!" stage.

I'm gung-ho on the tech because it works.  But that doesn't mean I'm gung-ho on the device that's available in Europe.  It's 60 pixels.  A 6x10 array of sensors.  If you're on a Windows machine, run CMD.EXE to bring up a command prompt.  Select "Properties" and set the font size to either 6x8 or 5x12.  Imagine seeing the entire world through one character on that text screen.  The whole world in a six-by-ten-dot array.

But that's what the leading edge of a technology looks like, and why the call it the bleeding edge.  When digital cameras became mass-market items, it was pretty awesome to have one that could do 640x480 (half a megapixel!) and fit a few images on a single 1.44" MB floppy disk.  Why, that's almost a whole roll of film!  Here's a genuine MVC-FD5 as it appeared when released, and it could have been yours for the low, low MSRP of $500.  

The Mavica MVC-FD5 was a pretty neat piece of tech for 10 years ago.  State of the art as far as CCD image sensing went.  And since a roll of film cost $10 to process, but you had to wait for it to be processed, and since everybody had floppies laying around, your "film" was free!  Only took ten seconds per photograph taken to copy it to your hard drive.  You could make the switch to digital, or you could could continue to shoot film for another year, because next year's cameras would do 800x600, 1024x768, 1600x1200... and instead of a 1.44" MB floppy, you could have an 8MB CF card, or a 64MB CF card, or a 1GB SD card... The rational response was to buy what you could afford and would meet your needs next year or two, and then give the old digicam to a friend when it becomes obsolete.

But implants aren't digital cameras.  You get to buy two implants (one per eye) per lifetime.  One installation per eyeball, and No. Upgrades. Ever. In a game like that, the rational response is not to rush out to the store tomorrow.  It's to wait until the implants available on the market offer better performance than your eyes do, or until the implants stop getting better every 2-3 years.  Waiting to upgrade isn't driven by fear; it's a perfectly rational response to the fact that 60 pixels of resolution is only an "upgrade" over "a complete inability to sense light".

Subject: Re: Feeling Blind

Written By: CatwomanofV on 11/16/11 at 11:33 am

Today I am starting treatment with an acupuncturist. We shall see how it goes. Keep your fingers crossed.



Cat

Subject: Re: Feeling Blind

Written By: wildcard on 11/16/11 at 3:44 pm

will do

Subject: Re: Feeling Blind

Written By: Howard on 11/16/11 at 7:32 pm


Today I am starting treatment with an acupuncturist. We shall see how it goes. Keep your fingers crossed.



Cat


good luck Cat.  :)

Subject: Re: Feeling Blind

Written By: seamermar on 11/17/11 at 1:04 pm

Sad to learn you finally decided to go acu, this should mean the tunnel is dim and narrow  :\'(


Today I am starting treatment with an acupuncturist. We shall see how it goes. Keep your fingers crossed.



Cat




Good luck and courage, Cat. You got a brave heart, so your eyeballs have resources to fight.
Here in Spain there's a well-known and highly reputed center in Barcelona.
For if you may wish take a look,

http://www.treatmentinspain.com/medical-tourists/eye-surgery/centro-de-oftalmologia-barraquer/

Fingers crossed and calling to join goodness forces  with you  ;)

Subject: Re: Feeling Blind

Written By: CatwomanofV on 11/17/11 at 2:05 pm


Sad to learn you finally decided to go acu, this should mean the tunnel is dim and narrow  :\'(



Good luck and courage, Cat. You got a brave heart, so your eyeballs have resources to fight.
Here in Spain there's a well-known and highly reputed center in Barcelona.
For if you may wish take a look,

http://www.treatmentinspain.com/medical-tourists/eye-surgery/centro-de-oftalmologia-barraquer/

Fingers crossed and calling to join goodness forces  with you  ;)



That clinic doesn't mention RP-which I am not surprised. There are very little surgery available for RP. And even if there was-I am not ready for that. I think at this point in time, acupuncture is the right course of action. It is the least intrusive-and the least expensive.



Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 11/18/11 at 12:19 am

(Aaw, geez, biotech research on my third beer?  Well, save the best for last...)


That clinic doesn't mention RP-which I am not surprised. There are very little surgery available for RP. And even if there was-I am not ready for that. I think at this point in time, acupuncture is the right course of action. It is the least intrusive-and the least expensive.


Given that it's a placebo, I'm with you on least intrusive, and grateful that it's the least expensive!  Because it has no effect on the eyes, I can't in good conscience argue for it, but if you can afford the payments, it can do nothing worse than cause you some minor damage to your wallet.

Meanwhile, science marches on.  The Argus II implant team just had its first patient.  I wish they'd hurry up (and I hope your progression slows down), because 60 pixels isn't enough.

I'm pleased to announce there's a new player on the scene: Genable Technologies and GT038, which is their shot at gene therapy, but it's going to be a couple more years before we hear from them.  (The popular media articles on Genable's programme are ambiguous on exactly which "rhodopsin-linked" mutations it's intended to address - my bioclue is insufficient to be conclusive, but the intent of the GT038 programme is to address a large subset of them - but your eye doctor should be able to read the GT038 literature and know enough about your genetic makeup to assess whether it could potentially be of interest.  Gene therapy is high-risk, high-reward.)

Another long-shot: Sucampo's UF-021.  This came across my radar tonight; I'm unfamiliar with the company and its technology, but I'm throwing it down here as a bookmark in case they deem the phase 2 results promising enough to take it to phase 3.

tl;dr: Don't take my skepticism on the acupuncture as an affront, Cat.  Keep this thread alive.  Keep us apprised of your progress.  I learn something new every time I poke my head in here.  As long as your doctor agrees, keep up with those vitamins: were our roles reversed, my strategy would be to slow the progression of the disease until the scientists can catch up.  There are more programmes afoot, and the ones I'm finding are looking a little more credible than they were as recently as two years ago.  Stall this thing another 3-5 years (versus 5-10 years), and you just might end up OK after all.

Subject: Re: Feeling Blind

Written By: Don Carlos on 11/18/11 at 11:08 am

Yeah, since RP is a genetic disease, the genetic solution seems like the most promising route

Subject: Re: Feeling Blind

Written By: CatwomanofV on 11/18/11 at 11:45 am


(Aaw, geez, biotech research on my third beer?  Well, save the best for last...)

Given that it's a placebo, I'm with you on least intrusive, and grateful that it's the least expensive!  Because it has no effect on the eyes, I can't in good conscience argue for it, but if you can afford the payments, it can do nothing worse than cause you some minor damage to your wallet.

Meanwhile, science marches on.  The Argus II implant team just had its first patient.  I wish they'd hurry up (and I hope your progression slows down), because 60 pixels isn't enough.

I'm pleased to announce there's a new player on the scene: Genable Technologies and GT038, which is their shot at gene therapy, but it's going to be a couple more years before we hear from them.  (The popular media articles on Genable's programme are ambiguous on exactly which "rhodopsin-linked" mutations it's intended to address - my bioclue is insufficient to be conclusive, but the intent of the GT038 programme is to address a large subset of them - but your eye doctor should be able to read the GT038 literature and know enough about your genetic makeup to assess whether it could potentially be of interest.  Gene therapy is high-risk, high-reward.)

Another long-shot: Sucampo's UF-021.  This came across my radar tonight; I'm unfamiliar with the company and its technology, but I'm throwing it down here as a bookmark in case they deem the phase 2 results promising enough to take it to phase 3.

tl;dr: Don't take my skepticism on the acupuncture as an affront, Cat.  Keep this thread alive.  Keep us apprised of your progress.  I learn something new every time I poke my head in here.  As long as your doctor agrees, keep up with those vitamins: were our roles reversed, my strategy would be to slow the progression of the disease until the scientists can catch up.  There are more programmes afoot, and the ones I'm finding are looking a little more credible than they were as recently as two years ago.  Stall this thing another 3-5 years (versus 5-10 years), and you just might end up OK after all.



I appreciate your concern and the info you provide. Karma to you.

About the acupuncture, I went in for a TMJ problem (jaw) and it really helped-not right away. As with the RP-I have had one session so far so it is WAY too soon to tell. My next appointment is in 2 weeks. But, I will let you know how it goes.



Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 11/20/11 at 6:20 pm

And back atcha for being so tolerant of my hard-nosed skepticism :)


About the acupuncture, I went in for a TMJ problem (jaw) and it really helped-not right away.


I'm skeptical on it as a treatment for TMJ disorders, but at least that's not entirely preposter*idicul*ous (no ridicule intended, but got filterpwn3d with the word outside the asterisks!) -- it's at least conceivable (though not established) that poking needles in or near the nerves/muscles of the jaw and face could affect things that happen in the jaw.

I had some minor TMJ issues myself a few years after a wisdom tooth removal, dentist took a couple of molds, discovered a minor bite discrepancy, did a little grinding a few days later to resolve the interference, and it never bothered me from that day forward.  As with all soft tissue issues, I can understand why insurance companies are reluctant to cover treatment for TMJ: it's hard to figure out exactly what's going on because there are so many muscles, tendons, and oddly-shaped bone surfaces involved that it's difficult for any medical professional to be highly confident that any given treatment will work.

Subject: Re: Feeling Blind

Written By: Foo Bar on 12/14/11 at 9:31 pm

Earlier this morning, Slashdot picked up on Scientific American's update on the quest for implants to treat RP:  Retina Implant Research Expands in Europe, Seeks FDA Approval in U.S., with lots of interesting link goodness.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/15/11 at 11:13 am


Earlier this morning, Slashdot picked up on Scientific American's update on the quest for implants to treat RP:  Retina Implant Research Expands in Europe, Seeks FDA Approval in U.S., with lots of interesting link goodness.



That is great but I am NOT to that stage-and hopefully I will NEVER be.


I have been doing the acupuncture for a while and I think I am starting to notice some difference. Things don't seems to be as dark.




Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 12/17/11 at 11:17 pm


That is great but I am NOT to that stage-and hopefully I will NEVER be.


And I hope that an effective treatment becomes available before you get to that stage.


I have been doing the acupuncture for a while and I think I am starting to notice some difference. Things don't seems to be as dark.


Be aware of the placebo effect.  Take measurements (even if they're as simple as having someone set up a web page of random characters in HTML at a known font size, displaying them on a monitor of a known size, and reading the letters).  Record them independently.  Compare every year.  The only claims I'm willing to make about RP are that the rate of its progression varies from person to person, and that it's irreversible.  You may simply be one of the lucky ones in whom the disease progresses slowly.

Acupuncture for RP?  If, 10 years from now, your vision is measurably better than it is today, I'll concede that you've shown me that it works, and if you can further show how it works (I'll take "a Phase 3 study that demonstrates with statistical significance that acupuncture is a safe and effective treatment for RP, with data strong enough to convince the FDA to subsequently approves acupuncture as a methodology to treat RP, such approval to be declared on or before December 31, 2021" as the criterion for the purposes of this bet), and (if I lose) when I've recovered from the shock, I will take a compass, and carve "FANCY THAT" in an unmentionable place. :)

And it will have been worth it.  If it comes down to your eyesight or my pseudonymous dignity in the intarwebs, I'd really prefer to be embarassed as hell!  Just between us and the rest of the Internet, I think we'd both be better off hoping that vitamin B slows the progression enough to enable the folks working on retinal implants (or the folks working on gene therapy, or both, or some other team with some even more clever idea that I've never even heard of) to develop an effective treatment.  If and when a cure is developed, you'll be able to see well enough that we'll both be grateful that I won't have to make good on my bet, and we'll both win.  

(Everyone's just staring now, so... on to the next set of study results from the implant folks a few months/years from now.)

Subject: Re: Feeling Blind

Written By: CatwomanofV on 12/18/11 at 12:07 pm


And I hope that an effective treatment becomes available before you get to that stage.

Be aware of the placebo effect.  Take measurements (even if they're as simple as having someone set up a web page of random characters in HTML at a known font size, displaying them on a monitor of a known size, and reading the letters).  Record them independently.  Compare every year.  The only claims I'm willing to make about RP are that the rate of its progression varies from person to person, and that it's irreversible.  You may simply be one of the lucky ones in whom the disease progresses slowly.

Acupuncture for RP?  If, 10 years from now, your vision is measurably better than it is today, I'll concede that you've shown me that it works, and if you can further show how it works (I'll take "a Phase 3 study that demonstrates with statistical significance that acupuncture is a safe and effective treatment for RP, with data strong enough to convince the FDA to subsequently approves acupuncture as a methodology to treat RP, such approval to be declared on or before December 31, 2021" as the criterion for the purposes of this bet), and (if I lose) when I've recovered from the shock, I will take a compass, and carve "FANCY THAT" in an unmentionable place. :)

And it will have been worth it.  If it comes down to your eyesight or my pseudonymous dignity in the intarwebs, I'd really prefer to be embarassed as hell!  Just between us and the rest of the Internet, I think we'd both be better off hoping that vitamin B slows the progression enough to enable the folks working on retinal implants (or the folks working on gene therapy, or both, or some other team with some even more clever idea that I've never even heard of) to develop an effective treatment.  If and when a cure is developed, you'll be able to see well enough that we'll both be grateful that I won't have to make good on my bet, and we'll both win.  

(Everyone's just staring now, so... on to the next set of study results from the implant folks a few months/years from now.)



I know that it COULD be "the placebo effect". I am NOT going to say "It definitely works" until my next visual fields test. That is why I said that it SEEMS to be brighter-not that it IS.



Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 12/19/11 at 8:32 pm


I know that it COULD be "the placebo effect". I am NOT going to say "It definitely works" until my next visual fields test. That is why I said that it SEEMS to be brighter-not that it IS.


Karma for staying grounded in reality and digging your skepticism. 

(For the record, if I do have to carve "fancy that" in an unmentionable place in 2021, it will have been worth it.)

Subject: Re: Feeling Blind

Written By: Foo Bar on 02/14/13 at 2:15 am


Cat


Oh yeah.  It's been a while.  Something something driving days being over.

Last September (2012), an FDA Advisory committee voted 19-0 for approval of the Argus II. Everything that happened that day, including the transcripts of the 10-hour meeting.  Because the company isn't publicly-traded, I can't actually find an officially-scheduled FDA decision date, but it looks like the Argus II is probably close to US approval, as in days/weeks, not months/years.

Disclaimers: not an investor, not a researcher, and I sure as hell ain't a physician. That means I'm not sure if any particular case is bad enough to be on the label that FDA may approve. Not sure how rapidly the technology is going to advance between Argus II and other approaches.  Not sure if competing approaches involving retinal cells (which also sound pretty promising) will turn out better than the idea of implanting electrodes, but the AdCom meeting materials, followed by the minutes, sure look like interesting reading.  They do address the question of at what point it's "better" to take what's on the shelf (despite its poor resolution) versus waiting another few years for the next version or other technologies in other companies' pipelines.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 02/14/13 at 7:15 am


Oh yeah.  It's been a while.  Something something driving days being over.

Last September (2012), an FDA Advisory committee voted 19-0 for approval of the Argus II. Everything that happened that day, including the transcripts of the 10-hour meeting.  Because the company isn't publicly-traded, I can't actually find an officially-scheduled FDA decision date, but it looks like the Argus II is probably close to US approval, as in days/weeks, not months/years.

Disclaimers: not an investor, not a researcher, and I sure as hell ain't a physician. That means I'm not sure if any particular case is bad enough to be on the label that FDA may approve. Not sure how rapidly the technology is going to advance between Argus II and other approaches.  Not sure if competing approaches involving retinal cells (which also sound pretty promising) will turn out better than the idea of implanting electrodes, but the AdCom meeting materials, followed by the minutes, sure look like interesting reading.  They do address the question of at what point it's "better" to take what's on the shelf (despite its poor resolution) versus waiting another few years for the next version or other technologies in other companies' pipelines.



Cool. But, as I have stated in earlier posts, I'm not at that stage yet-and hopefully never will be. I am still in the seeing world-but with limitations. Most people don't realize I am visually impaired until I tell them-and even then they don't really believe me-that is until I bump into things or trip over something that is quite obvious to others.


If I have stated all of this before, I apologize for repeating myself. I didn't feel like going back through the thread to see what I wrote a few years ago.



Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 02/18/13 at 3:55 am


If I have stated all of this before, I apologize for repeating myself. I didn't feel like going back through the thread to see what I wrote a few years ago.


No apology necessary; I don't know how long it takes for things to progress. All I know is that you (and thousands of others) are in a race against time, as are the people who are working on actually solving the problem, and that I'm pleased to see real progress being made on both the electronic and regenerative options. When this thread started, implants were cutting-edge research. Today, they're on the market. By the time you get to the point that you need a device as limited as the Argus II, it will be obsolete. (and that's awesome!)

I don't know whether your new retinas will be made of silicon or meat, but by the time you need 'em, I'm pretty sure it'll be ready for you.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 02/18/13 at 6:43 am


No apology necessary; I don't know how long it takes for things to progress. All I know is that you (and thousands of others) are in a race against time, as are the people who are working on actually solving the problem, and that I'm pleased to see real progress being made on both the electronic and regenerative options. When this thread started, implants were cutting-edge research. Today, they're on the market. By the time you get to the point that you need a device as limited as the Argus II, it will be obsolete. (and that's awesome!)

I don't know whether your new retinas will be made of silicon or meat, but by the time you need 'em, I'm pretty sure it'll be ready for you.



I do appreciate all the research that has been going on (and your concern). I am one of the lucky ones. I was diagnosed way back in '86 and wasn't classified "legally blind" until 2004-so you can see in my case, it is a slow progression. I have hard of people who went from being diagnosed to COMPLETELY blind in about a 5 year stretch. And IF I ever need it, I'm hoping by that time, it will be common practice and no longer "experimental" and all the bugs will be worked out.


Cat

Subject: Re: Feeling Blind

Written By: warped on 02/18/13 at 10:06 am

Although certainly not as serious as your eye problem, my wife ( who has lupus, arthritis ) has trouble with sunny days. So much trouble that she doesn't go out during the daytime if it's sunny She is blinded by the sun. Even wearing 2 pais of decent sunglasses (one of top of the other) doesn't help. At home our curtains are drawn during the day and huge cardboard pieces are placed against the window to block the sun.

We've been to several Doctors, so far no one can explain her difficulties.  :-\\

Subject: Re: Feeling Blind

Written By: CatwomanofV on 02/18/13 at 10:25 am


Although certainly not as serious as your eye problem, my wife ( who has lupus, arthritis ) has trouble with sunny days. So much trouble that she doesn't go out during the daytime if it's sunny She is blinded by the sun. Even wearing 2 pais of decent sunglasses (one of top of the other) doesn't help. At home our curtains are drawn during the day and huge cardboard pieces are placed against the window to block the sun.

We've been to several Doctors, so far no one can explain her difficulties.  :-\\



Sorry to hear that. The sun also effects my eyes which a pair of sunglasses help. But what is really bad are overcast days. There is a glare that gives me a massive headache. I put my sunglasses on and the headache instantly goes away-but then it is too dark and I can't see. So, I have to chose between seeing or having a massive headache.  :-\\


BTW, I wonder if acupuncture could help her. 


Cat

Subject: Re: Feeling Blind

Written By: warped on 02/18/13 at 10:31 am



Sorry to hear that. The sun also effects my eyes which a pair of sunglasses help. But what is really bad are overcast days. There is a glare that gives me a massive headache. I put my sunglasses on and the headache instantly goes away-but then it is too dark and I can't see. So, I have to chose between seeing or having a massive headache.  :-\\


BTW, I wonder if acupuncture could help her. 


Cat


The glare also bother my wife, yeah. It's not fun.

I wonder if acupuncture could help her too. I know she has a epiretinal membrane in one of her eyes, it may have to be drained but they didn’t think it was bad enough yet. We shall see another specialist in March. Hopfully more ideas can be broght forth and a diagnosis will result from that.

Subject: Re: Feeling Blind

Written By: karen on 02/18/13 at 3:11 pm

Have you tried wearing a cap or sunshade?  A friend can't stand any glare and finds that a cap shades her eyes better than wearing sunglasses.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 02/18/13 at 7:31 pm


Have you tried wearing a cap or sunshade?  A friend can't stand any glare and finds that a cap shades her eyes better than wearing sunglasses.



Never thought of that. Maybe I will try it.


Cat

Subject: Re: Feeling Blind

Written By: warped on 02/18/13 at 7:39 pm


Have you tried wearing a cap or sunshade?  A friend can't stand any glare and finds that a cap shades her eyes better than wearing sunglasses.


Never thought of that. Maybe I will try it.


Cat


My wife wears a cap every time she leaves the house of out necessity. It helps a bit.  Try it mikey

Subject: Re: Feeling Blind

Written By: Foo Bar on 04/26/14 at 12:08 am

http://i.imgur.com/YhclxHd.gif

So here's a view from the Argus II bionic eye retinal prosthesis.  Compared to seeing nothing, it's pretty good. 

TNQ-bkUblI0

And here's an hour-long Google Tech Talk from an Australian gentleman affiliated with BionicVisionAustralia and some information about Argus II recipients.

And here's the latest recipient.

I re-emphasize the fact that by the time anybody still capable of reading this without assistance actually needs such a prosthesis, resolution will have improved by at least a factor of ten.

Subject: Re: Feeling Blind

Written By: CatwomanofV on 04/26/14 at 10:01 am


http://i.imgur.com/YhclxHd.gif

So here's a view from the Argus II bionic eye retinal prosthesis.  Compared to seeing nothing, it's pretty good. 

TNQ-bkUblI0

And here's an hour-long Google Tech Talk from an Australian gentleman affiliated with BionicVisionAustralia and some information about Argus II recipients.

And here's the latest recipient.

I re-emphasize the fact that by the time anybody still capable of reading this without assistance actually needs such a prosthesis, resolution will have improved by at least a factor of ten.



To be honest, I didn't watch the video. But, I do think it is great that this seems to be working. I am far from needed it-and hopefully, I never will.

Still being a pin cushion going to acupuncture. However that has been put on hold for awhile while our life is pretty hectic & crazy at the moment. I will be going back in a few more weeks.


Cat

Subject: Re: Feeling Blind

Written By: Foo Bar on 04/27/14 at 7:31 pm


To be honest, I didn't watch the video. But, I do think it is great that this seems to be working. I am far from needed it-and hopefully, I never will.


Oh, I know.  I'm just keeping up with the story.  Skipping over the first decade of preclinical research and concentrating on the time period of this thread, it's been five years from "experimental 4 pixel by 4 pixel" to "Argus II is an approved medical device."

And yes, if you're reading anything on this board without using text-to-speech software, you're a long way from needing an Argus II, and even if you were at that point, it might still be worthwhile to wait another 5-10 years (at least with one eye!) and see what happens.  What I really hope for is that this thread ends with you never getting to the point where you need an implant, but maybe in another 10-20 years there'll be something that'll make 2024Cat better than 2014Cat can see today. 

RP is a disease marked by very slow progression.  Science is a cure that can spend decades puttering around going absolutely nowhere, but once it finds something that actually works, it can make bursts of rapid progress.  It's a race against time, but it's a marathon, not a sprint, and it looks like science is winning.

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