Ask the Expert – Acupuncture & Retinitis Pigmentosa

Written By: ingridricks - Oct• 21•14

new andy picI’m starting a new Ask the Expert feature on this blog where practitioners who use naturopathy, acupuncture and other integrated health therapies to treat RP will answer your questions. My first Guest Expert is Dr. Andy Rosenfarb, who specializes in treating RP and other degenerative eye conditions with acupuncture and naturopathy.

Question: If people suffering from RP start acupuncture treatment and then decide to stop, will their vision loss accelerate faster than usual?

Dr. Rosenfarb: The answer is absolutely not. I’ve seen many cases where a patient’s vision loss seems to arrest with acupuncture treatment and holds steady with ongoing maintenance treatment. Some patients start acupuncture and discontinue for various reasons. In those cases, it is most likely that at some point, some of the visual gains they made will be lost and  their eyesight will continue to deteriorate as it did before they started acupuncture.  Once a patient stops treatment, they are no longer doing maintenance work. It’s kind of like just deciding to stop brushing your teeth and quit seeing your dentist. Eventually, tooth decay will set in.

Acupuncture increases blood flow to the retina, which in turn increases oxygen, ensures vital nutrients reach the eyes, and helps promote detoxification of ocular waste products. Retinal cells will eventually die with impaired blood flow, inflammation, acidosis, and toxic accumulation. For that reason, at this time, ongoing acupuncture maintenance is required in order to preserve vision. It would be great if it was a one-time fix, but that’s never the case with these chronic, neuro-degenerative conditions. 

 Andy Rosenfarb, ND L.Ac, has been specializing in Chinese Medical Opthalmology since 1993. His unique AcuVision system combines various acupuncture methods including Micro Acupuncture, traditional acupuncture, auricular acupuncture, laser acupuncture and electro-acupuncture to treat RP and other degenerative eye conditions. For more information, visit: www.acuvisiontherapy.com

 

 

Falling Down and Standing Back Up

Written By: ingridricks - Oct• 13•14

resetSo after making it the entire month of September on a fairly strict anti-inflammatory diet (no dairy, no gluten, no corn, no beef…and only an occasional glass of red wine), I fell off the wagon in a big way this past week.

The culprit? Travel.

I seem to be fine when I’m at home, but the minute I step on a plane and head out of town for work or to meet up with friends, my diet is shot. This past week I’ve downed beer, Mexican food (plenty of flour tortillas, corn chips and cheese), Indian food—which included a helping of nan, a slice of pizza and lots of sandwich bread during lunches while working at a school. I even ordered a steak and baked potato one night and loaded the potato with butter. And without a juicer in my hotel room, my entire vegetable intake for the five days I was away came down to a BBQ chicken salad and a garden omelet.

Beyond the diet disaster, I didn’t do my eye exercises or acupressure, didn’t get in a cardio workout, didn’t do my daily micro-current stimulation. I just couldn’t bring myself to do any of it — even though I KNOW how important it all is.

Now I’m back in Seattle and making a vow to get back on track. I think I’m beginning to understand what an alcoholic must feel like: it’s one day at a time, with occasional slip-ups along the way. All I can do is stand back up, brush myself off and get back on the wagon.

I kicked off today with a green juice , stir-fried broccoli and a morning off eye exercises and acupressure. I also hit the gym for a cardio workout during lunch and have salmon on the dinner menu. Rather than beating myself up over this, I’m reminding myself that all any of us can do is the best we can do on any given day. And if we screw up one day (or even five days), the key is to start over the next.

Here’s to all of us who are doing our best to save our eyesight — and to hitting the ‘reset’ button when we occasionally mess up.

 

FFB Spokesperson Shares Thoughts/Experience with Acupuncture

Written By: ingridricks - Oct• 01•14

Fame & Fashion photo with kids october 2013I was immediately fascinated when I heard April Lufriu’s story because of her role as a national spokesperson for the Foundation Fighting Blindness (FFB).

April’s involvement with FFB goes back to 2007, when she started doing vision walks to raise money and awareness that she hoped would help find a cure for her sister’s RP. Then, in 2010, she learned that she also suffered from RP, and that her son and daughter did as well.

While April’s RP is fairly moderate, her son Brandon—now fifteen—suffers from the aggressive X-linked form of RP that affects males. Devastated to learn the news and determined to help her children save their eyesight, she stepped up her involvement with FFB and became a national spokesperson for the foundation after winning the prestigious Mrs. America pageant in 2012.

April’s determination to fight this disease “at every angle” recently led to her try acupuncture for her son. Now, along with continuing to work alongside FFB to fight for a cure, she’s sharing her family’s acupuncture experience in hopes that it will help others battling RP know that there’s something they can do TODAY to help their eyesight.

Here is April’s story—in her words.

IR: How did you become the national spokesperson for the Foundation Fighting Blindness?

April: After I was crowned Mrs. America 2012, the Foundation Fighting Blindness offered me the prestigious title because of the notoriety & national spotlight I was receiving being Mrs. America. Then I proceeded to win the Mrs. World title just eight months later, which catapulted me into a larger spotlight. My mission was to raise awareness for Retinitis Pigmentosa as well as raise funds for research to find a cure. Even though my reigns are over, my fight continues!!

IR:  What made you decide to give Dr. Rosenfarb’s acupuncture treatment a try?

April: After hearing a testimony from a client’s employee who has been seeing Dr. Andy Rosenfarb for nine to ten years, I was convinced his treatments were working because she is still able to drive and function normally with Usher’s Syndrome. I was so baffled by this news that I had to learn more.

IR: I know your son has undergone two week-long treatments with Dr. Rosenfarb over this past year. What benefits, if any, has he experienced? And what has it meant for you, as his mother?

April: The true test was my recognition of knowing and seeing that Dr. Rosenfarb’s treatments were working on my son. A mother’s test of knowing her children is the ultimate test. On the third day of the first round of treatments, my son mentioned that he could style his hair in the mirror without his contacts or glasses. He couldn’t do that before. During the second round of treatments, my son was amazed that his central vision at night showed a glimpse of his surroundings that he could not see before at night. When my son visited his ophthalmologist one month after the first round of treatments, the doctor was amazed how his acuity improved from 20/80 to 20/50 & 20/60. Our doctor could never before correct my son’s vision with corrective lenses to that degree.

IR: For so long, it’s felt like a big divide between the Foundation Fighting Blindness and the acupuncture/holistic health approach to treating RP. It’s so upsetting to me that those of us struggling with RP continue to be told that there is nothing we can do to halt the progression of our disease or improve our eyesight — when so many of us are discovering otherwise. I think that if we are going to beat this disease, both sides have to work together on an integrated health approach that combines acupuncture, diet, lifestyle and other holistic treatments with stem cell research, gene therapies and other exciting advancements. Can you share your thoughts on this?

April: Many people are skeptical…..I was one of them. However, I can only speak for the improvements I see with my son. I do know that my son only being 15 years old will have more improvements than someone older. I can’t say for sure, but with him being so young his body has responded immensely. My sister has had improvements, but not to the degree of my son. I always mention to others that ask about acupuncture that the risks are beyond minimal and there is nothing to lose. I took the leap of faith and I am so glad I did knowing I am fighting RP at every angle. I am also continuing to fight alongside the Foundation Fighting Blindness to find the cure to eradicate this disease.

IR: As someone who is fighting this disease from both ends of the spectrum, what advice do you have for people struggling with RP?

April: The best of advice I can give people is to take a chance on the treatments and testimonies you are hearing from other patients receiving the acupuncture treatments. Look at the amount of people that travel far distances to see Dr. Andy Rosenfarb. That speaks volumes!!! You don’t know until you try…………..I never assume anything in life. See for yourself.

 

Taking Charge of Our Eye Health

Written By: ingridricks - Sep• 20•14

View More: http://heatherballisonphotography.pass.us/ingrid-2013When I first started on this eyesight healing quest in early February 2013, I was at the lowest point in my life.

After waiting for six months to see a retinal specialist because I’d heard she was starting stem cell clinical trials, I was told that RP was an orphan disease and was too low on the priority list to receive funding to take promising research to the next level. Then she confirmed what I already knew – that my vision was down to three or four degrees of central vision with a strip of blurry vision in my outer pheriphery – and told me I had cataracts forming. Like every other eye doctor I’d visited, she said there was nothing I could do to save my eyesight and indicated I had only a few years left to see.

I cried for two days straight and then decided I was done with “no hope” and was going to fix my eyesight myself through naturopathy and specialized acupuncture.

It’s been a year and a half and instead of getting worse, my eyesight has improved. I now have so much peripherial vision that I recently played tennis with my daughters. I still have a donut of blindness around my central core – but it’s shrinking and I no longer worry about going blind. I know that if I keep doing what I’m doing, I’ll continue to see.

I feel like I’ve been given back my life. And I’m now on a quest to help others dealing with a degenerative eye disease say “NO” to “NO HOPE” and take charge of their eye health.

On Tuesday, September 23rd I’ll be leading a free eye health workshop at Des Moines Library in the Seattle area. The workshop is being supported by an artist grant I received from 4Culture. If you know anyone who might benefit, please share this blog post with them. Here’s to our eyesight – and our overall health.

4culture_colorFrom Powerless to Empowered: Five Secrets to Taking Charge of Your Eye Health

  • When: Tuesday, Sept. 23rd at 6 p.m.
  • Where: Des Moines Library -21620 11th Avenue S  206.824.606

Refusing to accept that there was no hope or cure for her degenerative eye disease and that she would soon be completely blind, author Ingrid Ricks decided to take charge of her eye health through a holistic approach that integrates naturopathy and Chinese medicine. Ricks will share her journey from victim to eye health advocate, read a short piece from her memoir in progress, and discuss the five things she’s been doing to maintain and improve her eyesight. She will also demonstrate simple eye exercises and acupressure points that have been proven to benefit eyesight.

Ingrid Ricks is an author, eye health advocate and teen mentor. Her memoirs include The New York Times Best Seller Hippie Boy and Focus, a memoir about her journey with the blinding eye disease Retinitis Pigmentosa. She is currently working on a memoir about her quest to save her eyesight, and is blogging about her journey at www.determinedtosee.com. Ingrid’s work has been supported by a 2014 Grant for Artist Projects.

 

Doubling Down on an Anti-Inflammatory Diet

Written By: ingridricks - Aug• 26•14

salad

I’ve got to admit, this whole diet shift is a hard one for me. I love all the foods I’m supposed to avoid – with cheese topping the list.

But I’ve learned way too much about the role inflammation plays in degenerative disease to keep dabbling on the sidelines. So, starting Now, I’m taking the next leap. I’m quitting wheat (totally quitting), quitting dairy and am even going to try to switch to tea from coffee. Sounds like I need to break my egg habit, too. But I’m going for it. For those of you who are interested, I found this great anti-inflammation diet outline by Dr. Andy Weil.

The good news is that we can still drink wine – as long as it’s red wine. And a little dark chocolate here and there is fine. Who wants to join me?

 

Treating RP: Think of It Like a Jigsaw Puzzle

Written By: ingridricks - Aug• 09•14

jigsaw-puzzle

Every week I receive three or four emails from people who are suffering from RP and want to know exactly how much my eyesight has benefitted from the acupuncture treatment I receive and the overall diet and lifestyles changes I’ve made.

“Do you really see improvements,” people will ask. “Exactly how much has your vision increased?”

The answer to the first question is ABSOLUTELY. But the second question is hard to answer because it’s not like pulling a string and opening a curtain. The visual improvements I’ve experienced have come in uneven patches — like a jigsaw puzzle that is slowly being dismantled so I can see through the holes where the pieces once were.

Imagine someone holding up a completed 5.000 piece jigsaw puzzle in front of your face. When I first started my eyesight-healing quest, that puzzle had only a few missing pieces in the very center –allowing me to see through that hole. There were also a few missing pieces midway between the center hole and the right and left side borders of the puzzle. The rest of the puzzle was a solid block. Now that puzzle is full of missing pieces. The hole in the center of the puzzle has gotten a little larger. And midway between the center of the puzzle and its right and left side borders, it looks like large sections have been dismantled, enabling me to see clearly in areas that were once blocked. The top of the puzzle is still largely intact, until you get to the top left and right side corners. Those pieces are now missing too—enabling me to see my husband’s entire 6 ‘2 frame if he’s walking to the left or right of me.

I still struggle to get around in the dark or in dim light, and there are still plenty of puzzle pieces blocking sections of my daytime vision. But the improvements I’ve experienced have been life changing for me. I no longer feel like a powerless victim waiting for this disease to strike again and take what’s left. I’ve taken charge of my eye health and now know I can effectively fight back and protect what’s mine.

The key, at least for me, has been adopting a holistic health approach that includes a combination of naturopathy and acupuncture.

  • I’ve revamped my diet – including daily green juicing, eliminating processed foods as much as possible and reducing my coffee intake
  • I’ve upped my cardio workout routine
  • I’ve reduced my stress
  • I’ve let go of negative energy
  • I’ve increased my intake of antioxidants and other key nutrients
  • I’ve adopted daily eye exercises and acupressure
  • I incorporate daily micro-current stimulation
  • I undergo periodic acupuncture and laser light therapy treatments designed specifically to treat RP

The acupuncture treatment is key for me. But it’s still only one critical piece of my overall eye health strategy. I’ve learned that if I want to save my eyesight, most of the work is up to me.

 

Emotional Trauma and Retinitis Pigmentosa

Written By: ingridricks - Jul• 21•14

Girl running down road

Six years ago I traveled to the Bay area to meet with Dr. Damon Miller, undergo detox and get started on his Better Eye Health home treatment program. I knew from my initial phone consultation with him that his treatment approach emphasized both physical and emotional health. But I was still surprised when he asked me to tell him about my childhood.

I was even more surprised—and embarrassed—when I immediately began sobbing.  I’d spent most of my childhood trying to escape the extreme religion and poverty at home by begging my freewheeling, vagabond dad to take me on the road with him to work as a tool hustler. I finally got my wish at the age of thirteen, when my mom remarried a man who used his religious powers as a weapon to oppress and abuse our family. I began spending my summers hustling tools throughout the Midwest and living out of cheap motels and rest areas with my dad. He became my lifeline and escape.  But the summer after I turned sixteen, he was violently arrested while I was with him.  A highway patrolman shoved a gun against his head and waved it within a foot of mine. Then he dragged my dad out of the car and took the one person I counted on away from me.

The trauma from my childhood was so great that I cried every time I talked about it. So mostly, I just kept the hurt tucked deep inside. But that day in Dr. Miller’s office, everything changed.  Dr. Miller pointed out two very powerful things to me.  First, he noted that I was still carrying around a huge negative energy charge inside of me from events that had happened to me as a teenager—which meant that I was still giving away my power. This bothered me. But it was nothing compared to his next words.  He said, “If you think this isn’t affecting your physical health, you’re crazy.”

The idea that carrying so much anguish inside of me could cause me to go blind was a huge wake-up call for me.  I decided to do whatever it took to get it out and was able to release the trauma by writing my story (now published in my memoir, Hippie Boy), and sharing it with others through radio interviews and podcasts.

Since that time, I’ve done research into epic genetics and the environmental factors such as emotional trauma and stress that can activate a faulty gene and trigger degenerative diseases. I’m convinced there is a correlation between my childhood and my RP. And it makes me wonder if the same holds true for some of you.

During my most recent treatment with Dr. Rosenfarb, he mentioned that he is discovering a similar correlation with many of the RP patients he treats. It seems that many of us have experienced extreme abandonment or trauma.

One of the most important things this healing quest has taught me is that emotional health is key to treatment success.  And I’ve discovered through my own journey and the writing program I’ve helped develop for at-risk teens that the only way to release emotional trauma is to get it out—either through writing or sharing it with someone.

So if what I’m saying resonates with any of you and you need a listening ear, I’m here. I’m also going to continue this discussion in the Facebook Group Determined to See and will be asking Dr. Miller and Dr. Rosenfarb to share their thoughts on this.

Here’s to getting healthy emotionally so we can heal physically.

 

Are Patent Laws Making You Legally Blind?

Written By: Natalie Watkins - Jul• 08•14

cid_38BAFD55-8953-4F12-8B91-0183413050A4 Natalie Watkins has become one of my favorite people in this solving-RP quest. She’s tried virtually everything to save her eyesight — from acupuncture in Canada, to a stem cell implant in Mexico, to Hyperbaric Oxygen Therapy in San Antonio. She’s got the kind of fight and determination we all need to beat this disease and when I told he about the nearly 20-year-old astaxanthin patent that’s blocked others from actively researching and discussing the benefits of astaxanthin for retinal diseases, she started sharing her own run-ins with what she calls “patent campers”.  I asked her to share her experiences here, in hopes that we can begin to generate awareness that will drive change.

By Natalie “Nat” Watkins

My best friend asked me yesterday, “So, why do you think you are still going blind? I mean, with all of the technology and capacity of humanity…Why has this problem not been solved?” I wish I could say that it is because the disease process is just too terribly complex.

But, then again, there are some smart people working on it. Really smart. Like beamed down from the mothership. People who could be making a lot more money as retinal surgeons in private practice. I mean, nobody tacks on that Ph.D to their M.D., so they can make more coin. Then they get to spend the rest of their careers fighting over five dollars in a sandbox with a bunch of other researchers.

Fun times.

What about the patients? Do we not volunteer to be guinea pigs for most any worthwhile project? Or, not-so-worthwhile project?

I know plenty of RPers who are willing to subject themselves to all sorts of humiliation in hopes of a resulting cure or treatment.

Is it because it is a rare disease? One that is not super sexy?

Closer. There is not a huge financial incentive to study RP.

What else?

Well, there is also an egregious practice that takes place. Regularly. It makes us about as attractive to biotech investment as Jabba the Hutt in a prom dress is to the average seventeen year-old male.

This practice, for purposes of a family audience, I will call “patent camping.”

What is it?

It is taking out a patent and then sitting on it. So, someone who is interested in researching your brilliant idea (or not-so-brilliant one) will have to pay you out in order to do so. Sounds fair enough. It is YOUR idea after all. Based on your research. You should get paid, right?

Sure. If you have funding to advance it forward. If you have an interest. If you can DO SOMETHING WITH IT in a reasonable amount of time. Otherwise you should let it go. It stops all kinds of creative work that could possibly improve the quality of real people’s lives.

And isn’t that the reason you got into this gig in the first place? That and a healthy dose of curiosity, I would imagine.

So, I would like to say it is just vitamin companies who patent camp. But, it is not. Awhile back, I was following the work of a Japanese researcher in the area of nilvadipine and RP. Nilvadipine is a type of calcium channel blocker.

And, the researcher who holds the nilvadipine patent is actually working on it. Trials are advancing. He is earning his patent by potentially serving patients.  Years ago, when I was looking into this drug, unavailable in the US, I learned of a patent on Diltiazem for RP. Diltiazem is also a calcium channel blocker. A few French researchers had camped on the Diltiazem patent. Back before the invention of the wheel.

Same class of drug as nilvadipine.

They had not moved any work forward. Dr. Berson (Harvard) published work disproving the use of calcium channel blockers in RP. Diltiazem, to be exact… with one dog. Before anyone understood different mutations.

Maybe someone before our Japanese nilvadipine researcher (currently in trials)  would have worked on it if the French researcher and friends had not kept camping on the patent even though they went on to live off of funding from other sources.

Oh well, I thought. Just one set of campers does not an epidemic make. Then I started learning about low level laser therapy and Retinitis PIgmentosa. I was encouraged by some work done by Eelis and Whelan at Wisconsin. And, Eelis has patented it for use in retinal degeneration. I do not have a problem with that as she is actually working on it.

Not a camper.

But I ran into another doc who was camping on LLLT for eye disease. A dermatologist. With a patent for LIGHT and eye disease? He took out the patent years ago. Then made a deal with L’Oreal to use LLLT for wrinkles. Did he let the patent for eye disease go?

Nope. He made himself a little fire and got out the marshmallows. Time for weanies, folks!

I wish, Ingrid, that your experience with this company was an isolated one. But, it is a systemic issue. I am not expecting anyone to be Jonas Salk, just let patents lapse when you cannot move forward with the work. New patent laws need to be put in place to protect the best interests of patients, with stricter time limits. As you stated, a possible RP intervention is not an Allen wrench. This is especially critical for those of us dealing with rare diseases which are already financially unattractive to the majority of companies.

Now where did I put that flashlight? Sure is dark out here in the campground….Think I just tripped over a couple of researchers eating beanie weanies.

I have to laugh. To keep from crying.

Nat

Natalie “Nat” Watkins lives in Texas with her husband and two children. In addition to being an avid reader, writer and pissed off blind person, she is a graduate student and enjoys pina coladas and getting caught in the rain, and is not into yoga and has half a brain She’s currently putting the finishing touches on her memoir, Crash Test. She can be reached at: Npendleton7@satx.rr.com

Valensa International & The Astaxanthin Patent: Why Everyone With A Retinal Disease Should Care

Written By: ingridricks - Jul• 03•14

As some of you know, I was dragged into a patent infringement case by attorneys representing Valensa International because I wrote a blog post on astaxathin and its possible benefits for eye health, and featured an image of the brand I was using.

It wasn’t until I was subpoenaed that I discovered the existence of Patent #5, 527,533 filed on October 27, 1994. This patent claims that high “therapeutic” doses of astaxanthin can retard and ameliorate central nervous system and eye damage…”such as age-related macular degeneration, photic injury, photoreceptor cell or ganglion cell damage, traumatic injury … and inflammatory diseases.”

From what I can gather, Valensa is the exclusive licensee for nutraceutical applications of the patent, which is assigned to the Board of Trustees of the University of Illinois.  Here’s a link to the full patent: Astaxanthin 5,527,533. Here’s an excerpt from that patent:

 “The above tests show that the administration of a therapeutically-effective amount of astaxanthin to an individual prevents, retards and/or ameliorates damage to the central nervous system and, especially to the eye, resulting from disease or injury.  The astaxanthin is administered to the individual in dosages of 5 to about 500 mg (milligram) astaxathin per kilogram (kg) of body weight. Preferably, the astaxathin dose is about 10 to about 200 mg astaanthin per kg of body weight, and to achieve the full advantage of the present invention, the astaxathin dose is about 25 to about 150 mg astaxanthin/kg of body weight.”

 The patent claims that therapeutic dosages of astaxanthin not only protected photoreceptor cells in lab rats, but also ameliorated the effects of the photic injury.

I weigh 105 pounds, which converts to 47.6 kilograms. Based on the minimum recommended dosages identified in the patent to receive full therapeutic advantage (25 mg per kg of body weight), I’d need to take 1190 milligrams –nearly 100 times the amount currently available on the market–to prevent or retard the damage to my photoreceptor cells. And I may actually need six times this amount.

The claims were based on a study with rats and this never reached the human clinical trial stage so it’s hard to know how much of the claimed benefits actually apply to humans.  Yet I’ve been told that Valensa has been threatening legal action or suing any astaxathin producer that advertises astaxanthin’s benefits for eye health, even when the largest dosage I can currently find on the market is only 12 mg – which is nowhere near the dosages referred to in the patent.  (Sounds like some internal industry squabbling has been going on as well: see this article from 2012 about Valensa and Cyanotech).

The idea that information about the potential benefits of large dosages of astaxanthin to help prevent or reverse damage in retinal diseases has been withheld from the public because of a patent is outrageous to me. I’m extremely grateful for research and appreciate the amount of money and time it takes to undertake research that can lead to medical breakthroughs.So I get that the researchers need to be compensated. But somewhere in all of this, people and health have to come first. We aren’t talking about a boat motor or a screwdriver here. We are talking about people’s eyesight and a naturally occurring carotenoid. Makes me wonder what else is out there that might help us save our eyesight that we aren’t hearing about because of disputes over money and IP ownership.

As it turns out, this patent will expire on October 27, 2014, only four months from now. I’m guessing that as soon as it does expire, we are going to see higher dosages of astaxanthin available in the market and will hear plenty more about the connection between astaxanthin and eye health.  I hope that at that time the truth—whatever it is—will finally start to come out.

Dr. Rosenfarb Acupuncture Treatment Round 3 Results

Written By: ingridricks - Jun• 30•14

acupunctureI just wrapped up my third treatment session with Dr. Andy Rosenfarb and am holding strong in terms of the bench line gains I made after my first treatment in December. I always slide a little between treatments, but rebound after my five-day stint.  This time, though, there were two interesting developments:

  •  My right side central core visual field has expanded to 19 degrees—which is remarkable because when I started in December, I had only TWO degrees.  What I see is not super clear – more of a black shade verses the white square that I see in my very central core. But it’s there. My blind spot then kicks in at that point but I’m able to start seeing again  (this time more clearly) at around the 45-degree mark in my right side and it carries all the way through to around 90 degrees.  (My top and bottom central core are still very limited and haven’t budged much.)
  •  My near side visual acuity has slipped a little. When I was in treatment in March, I managed to get it to 20/40 It’s now 20/63 until Dr. Rosenfarb suggested I put on my reading glasses.  Then I was able to get it to 20/32.  And that’s when I discovered something else: that the reading glasses (125 strength) make everything sharper and brighter —including that blind fog in my lower central vision.

Both Dr. Rosenfarb and I got a laugh out of this. “I’m thinking you need to go your eyes checked for prescription glasses,” he said. “You know, when you get to be over 40….”

Aside from the drug store reading glasses that I’ve rarely used, I’ve never worn glasses and haven’t been to an ophthalmologist to have my eyes checked for prescription needs since I was diagnosed with RP in 2004.  I’ve only been to retinal specialists and at least for now, I’ve written them off. But after this treatment round, I’ve realized the importance of having regular eye care visits with an ophthalmologist who can track non-RP related issues going on with my eyes that may be easily correctable.

So this week, I’m on the hunt for a cool, forward-thinking ophthalmologist in Seattle.  If you happen to know one, please send his or her info my way.

Below are the results from my third round of treatment with Dr. Rosenfarb – compared with where my eyesight was at when I started my first treatment on December 2, 2013.  The improvement have been gradual but when I see them next to each other, it’ amazes me.  As my dad always says: By the mile it’s a trial; by the yard it’s hard; but by the inch, it’s a cinch.  I’m getting there—an inch at a time.

 

Visual Fields 

Right Side Horizontal:

  • December 2, 2013: Central Core: 0-2degrees   Outer Periphery: 50 – 80 degrees
  • June 27, 2014: Central Core: 0-19 degrees   Outer Periphery: 45 – 90 degrees

Left Side Horizontal:

  • December 2, 2013: Central Core: 0 – 6 degrees   Outer Periphery: 80 – 90 degrees
  •  June 27, 2014: Central Core: 0 – 10 degrees   Outer Periphery: 70 – 90 degrees

Right Side Vertical Top

  • December 2, 2013: 0-4 degrees
  •  June 27, 2014: 0-8 degrees

Left Side Vertical Top

  • December 2, 2013: 0-6 degrees
  • June 27, 2014: 0-7 degrees

 

Right Side Vertical Bottom

  • December 2, 2013: Central Core: 0-3 degrees   Outer Periphery: 80 – 90 degrees
  • June 27, 2-14: Central Core: 0-7 degrees   Outer Periphery: 55 – 105 degrees

Left Side Vertical Bottom

  • Central Core: 0-3 degrees   Outer Periphery:  70-90 degrees
  • Central Core: 0-8 degrees   Outer Periphery:  60-100 degrees

Visual Acuity Far

  • December 2, 2013: 20/40
  • June 27, 2014: 20/25

Visual Acuity Near

  • December 2, 2013: 20/80
  • June 27, 2014 : 20/63 (20/32 with 125 strength reading glasses-

 

COLOR CONTRAST

Note: This test measures ability to differentiate colors

  • December 2, 2013: 6 out of 9 cards correct
  • June 27, 2014: 9 out of 9 cards correct

 

CONTRAST SENSITIVITY

Note: This test measures ability to pick up color as it fades

  • December 2, 2013: 7 out of 8 lines
  • June 27, 2014: 8 out of 8 lines

 

OCTOPUSS 301 VISUAL FIELD TEST

 Note: This is a machine like the ones used by retinal specialists, only it stops at 30 degrees vs. 90 degrees.  I did notice that my gains slipped a little this time around. After my first treatment, I could see 8 dots flash in one eye, 9 in other eye. This round I could see 7 dots flash in each eye.

 

Left Eye:

  • December 2, 2013: I saw two dots flash
  • June 27, 2014: I saw seven dots flash

 Right Eye:

  • Before Treatment: I saw three dots flash
  • After Treatment: I saw seven dots flash

 

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