Learning to See WHAT COUNTS

Written By: ingridricks - Mar• 13•14

Syd and Hannah pic 2Going blind sucks. So does walking into an eye doctor’s office for the first time in your life with trendy red cat-eye frames already picked out, only to be told that you’ve got a serious problem that no glasses — regardless of how good they look on you — are going to fix.

I was 37 when I was diagnosed with retinitis pigmentosa, a degenerative eye disease that first steals your night vision, then knocks out your peripheral vision, then usually takes what’s left. I should have guessed something was wrong when I sideswiped a car on the freeway after looking into the right lane and seeing nothing. But it was dark and raining, and I chalked it up to that. It wasn’t until I played racquetball with my husband a few weeks later and couldn’t see well enough to score a point that it occurred to me something wasn’t right. So, at my husband’s prodding, I agreed to get my vision checked.

Even after the eye doctor gazed into the back of my eyes and quietly informed me that what he saw resembled a rare degenerative eye disease, I wasn’t overly concerned. After all, I had gotten by fine until now and figured if I did have RP — which he admitted he wasn’t sure about — I was in the very beginning stages. But I knew it was serious when I saw a nurse whispering about me to the retina specialist my eye doctor had recommended, and then heard my name called ahead of a whole roomful of patients with scary-looking eye patches, walkers and canes.

Based on their behavior, I was suddenly convinced I had a brain tumor — a possibility I had uncovered during the countless Google searches I had done in the week since my first eye appointment. So I was initially relieved when the ancient-looking specialist announced that I had all the classic signs of RP. That is, until he told me that I was already legally blind, asked me how I’d ever managed to get by on such limited eyesight, chastised me for waiting so long to get my eyes checked, and then propped me up like a monkey, trained what felt like a car light on my inner eyeballs, forced my eyelids open and invited a string of residents to get an up-close look at an advanced case of RP.

“So what resources do you recommend?” I asked at the end of my torture session, rattling off the list of vision-enhancing nutritional supplements I’d found during my Internet searches. Given that he was the RP expert, I figured he would be a wealth of knowledge. Instead of counseling me on the best vitamin brands, he scribbled down the phone number to the Center for the Blind and shoved it into my hand.

“Here,” he said. “I’ve yet to discover a vitamin or anything else that’s made any real difference with RP. Medical help is at least 20 years out and it’s not likely to benefit you anyway. I’m sorry.”

“What about driving?” I pleaded, sucking in my breath like a 2-year-old.

“You seem like an intelligent woman,” he said, already turning toward the door. “What do you think?”

I spent the next week huddled in my basement sobbing. I mourned the vision I had lost, but mostly I cried because I was terrified about what awaited me. I cried out of fear I wouldn’t see my two daughters, barely 5 and 2, grow up. I cried about lost future candlelight dinners with my husband and about the burden I feared I would become to him. I cried because I couldn’t drive anymore and because I was scared I wouldn’t be able to work. I cried over lost sunsets and ocean views and any other beautiful scenery I would miss out on. I cried until finally it occurred to me that I could still see and that maybe, instead of mourning the unknown future, I should concentrate on Now.

It’s been seven years since I discovered that my tunnel-vision eyesight wasn’t merely a reflection of what friends have often joked is my tunnel-focused personality. In that time, my vision has shrunk from a 10-degree to 5-degree visual field — fueling a determined quest to halt the progression of the disease and preserve what precious eyesight I still have. Having concluded that the retina specialist was bad for my health, I’ve instead sought out every alternative treatment I can find. I’ve changed my diet, I down Chinese herbs, I undergo acupuncture, I ingest cocktails of vitamins, I stare into a color therapy lamp, I pump electrical micro currents into my eyes, and I try to do daily eye exercises.

In a world of fading vision, I’ve encountered plenty of things to avoid. They include coffee shops that allow dogs (one belly flop onto a hard cement floor amid a Saturday morning coffee crowd is enough), treadmills (flying off of one at six miles an hour hurts), stairs without rails, crowds, darkness and negative people.

But I’ve also discovered plenty to embrace. Every day I look at my two daughters, now 12 and 9, and soak in their amazing beauty, their smiles and their zest for life. I walk a lot, which means I’ve gotten to know my Seattle neighborhood and the neighbors in it, and I’m in good shape as a result. I eat better, have grown to love spinach and even have my 9-year-old daughter craving salmon and salad. I’ve learned to accept help from people who extend an arm when it’s dark, that I have a husband who doesn’t shy from adversity, and that living fully in the moment is the best defense against fear.

I’m still feeling my way around this world of semi-darkness. During an evening party a month ago, I spent an hour talking with a woman, only to introduce myself to her a few minutes after we had parted ways. The next night, after tucking my daughters into bed and making myself some tea, I went searching the house for my latest issue of the New Yorker. I rounded a dark corner too sharply, smashed into the divider wall, and cracked open my forehead — leaving an inch-long vertical gash extending mid-forehead to my eyebrow. My husband cleaned up the blood and cinched up the wound as tight as he could with a bandage, then warned me I might not want to look in the mirror.

Gazing at my reflection the other day, I found myself lamenting over the fact that the new scar on my face wasn’t going away. Then it occurred to me that the alternative was not seeing the scar at all.

That’s when I discovered something new to embrace. Because every time I see the scar, I’m reminded to stay vigilant about doing everything I can to save my remaining eyesight. But I’m also reminded to focus on what matters in life — my family, my friends, this moment. I try never to lose sight of that.

 

This essay appeared in Salon three years ago.  I wanted to share it with all of you because I think what this eye disease gives us all is the reminder every day to REALLY SEE what counts. Wishing you all an amazing day – Ingrid

 

 

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Second RP/Acupuncture Trial Enrolling Participants

Written By: ingridricks - Mar• 07•14

acupunctureI just learned that Dr. Andy Rosenfarb and Dr. Ava Bittner will be kicking off their second clinical trial to measure the efficacy of treating Retinitis Pigmentosa with electro-acpuncture. The trial, based on the success of their initial RP/acupuncture study,  is scheduled to begin next month.

If you live near Ft. Lauderdale, Florida and have not yet been treated with acupuncture, you may be a perfect candidate for this trial.

The enrollment process is already underway so if you are interested, contact Dr. Andy Rosenfarb: acupunkk@aol.com  or Dr. Ava Bittner: abittner@nova.edu as soon as possible.

 

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A Shift in Mindset

Written By: ingridricks - Feb• 22•14

Skiiing with the girls

Last year at around this time, I was holed up in a hotel room—sobbing over my latest doomed prognosis from a retinal specialist while my husband and two daughters bonded on the ski slopes.

This was our third family ski trip and like the others before it, I chose to sit it out, telling myself there was no way I could ski with only a few degrees of central vision and a strip of blurry vision in my outer periphery. I had only skied three or four times in my life and hadn’t been great at it when I had a panoramic view of the slopes. So how could I possibly think of doing it now?

Maybe it’s because my yearlong quest to save my eyesight has empowered me and made me realize that there is plenty I can do to save my remaining vision. Or maybe it’s just because I’m tired of missing out on family activities. Whatever it is, something clicked inside of me recently and I’ve decided I’m done letting my eyesight hold me back. Two days ago, I put on the winter gear, strapped on the downhill skis and hit the mountain. It was an admittedly rocky start—but not because of my eyesight.  I just couldn’t remember how to ski. Luckily my husband was patient and two days in, I’m now traversing my way down the slopes with the rest of them. It doesn’t matter that they’re faster. I’m doing it and we’re all having fun. My daughters both told me that watching me ski made them forget that I even have a vision problem.

The burger and beer in the lodge after a few hours on the mountain haven’t sucked either. Amazing what a change in mindset can do.

 

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A Year Into My Eyesight Healing Quest – What I’ve Learned

Written By: ingridricks - Feb• 02•14

View More: http://heatherballisonphotography.pass.us/ingrid-2013

It’s been a year since I walked into yet another retinal specialist’s office—this time hoping that her stem cell research might offer an answer for my eyesight—only to be told once again that there is no hope for me and that I was quickly running out of time.

Though I’m still paying off that visit ($1,200 for an afternoon’s worth of tests and gloom & doom), I’m grateful because it finally gave me the kick in the pants I needed to take matters into my own hands and do everything in my power to save my vision.

A year later, I feel like I’ve found an answer that works for me—and believe that if I stick to it, I can preserve the eyesight I have left (and maintain the bits of improvement I’ve experienced).

Over this past year, I’ve tried every alternative/naturopathic therapy I could get my hands on:

  • I’ve undergone acupuncture treatment with Dr. Yu in Canada, with a local acupuncturist in Seattle and most recently with Dr. Rosenfarb in New Jersey
  • I’ve ingested three months worth of expensive algae pills from Israel
  • I’ve downed various concoctions of Chinese herbs
  • I’ve played around with a variety of vitamin supplements
  • I’ve undergone extensive food allergy testing and blood work
  • I’ve incorporated regular eye exercises and acupressure into my routine
  • I’ve revamped my diet
  • I’ve upped my daily exercise and have been more conscious about managing stress

 

Because RP represents a group of disorders and so many variables are involved, I think it’s impossible to find a one-size-fits-all solution. What helps one person doesn’t necessarily help the next.  Beyond that, I’ve not found any one thing that resembles a magic pill for this.

I think eye exercises, vitamin supplements and an overall healthy lifestyle all play an important role in managing this disease. But of everything I’ve tried this past year, I believe these are the two most critical keys to preserving my eyesight:

  1. Diet Changes
  2. Treatment with Dr. Rosenfarb

 

Diet Changes

By diet changes, I mean I’ve completely revamped the way I eat to reduce inflammation and increase circulation in my body. I now start every day with a large glass of filtered water and a freshly made juice consisting of kale, cucumber, celery and Chia seeds.  I’ve cut out ALL sodas, almost all processed food and have reduced my coffee intake to one eight ounce hemp mocha a day. I’ve greatly reduced my meat, sugar and gluten intake and am trying to focus as much as possible on fresh vegetables and fruits  (I still indulge in a big platter of nachos occasionally – but that’s now the exception, not the norm).  For more information on diet, I highly recommend checking out the resources at www.kriscarr.com. I also recommend reading this interview with Dr. Damon Miller, who also treats RP and has been speaking out about the correlation between diet and eye health for years. He offers an extensive, affordable home treatment program that  has been beneficial for many RP patients.

 

Treatment with Dr. Rosenfarb 

I didn’t want to start treatment with Dr. Rosenfarb because it meant traveling across country, incurring more expense and leaving my husband and daughters for a week or two at a time. But I had grown to respect him and his work so much over the year that I decided I had to go for it—at least once.  My plan was to undergo his treatment, see if it helped me and, if it did, have my local Seattle acupuncturist undergo his RP treatment training course. But I experienced such good results during one week of treatment and liked him so much that I realized I don’t want to trust my eyes with anyone else.

Dr. Rosenfarb hasn’t promised to restore my eyesight.  He can’t guarantee that he will be able to maintain the improvements he’s been able to obtain for me—or that ongoing treatment with him will ensure that I save the eyesight I have left.  What he has promised me is that he’ll do everything in his power to help me.  He so experienced in treating degenerative eye diseases, so determined to keep searching for answers and collaborating with experts around the world, and so committed to getting his treatment methods measured by Western medical standards that I know he’s the right practitioner for me.

I’m not sure where the future will lead.  It’s hard to maintain cross-country trips from both a cost and time standpoint — and it puts a burden on my family every time I leave. But like all of you, I want my eyesight desperately and I really believe in Dr. Rosenfarb.  The good news is he that’s offering training to interested acupuncturists, and more and more practitioners are starting to recognize that Eastern medicine can help treat degenerative eye diseases. So I’m hopeful that soon this treatment will be more accessible and affordable for all of us.

Many of you have emailed me asking for more specifics about Dr. Rosenfarb’s treatment.  All I can do is share my experience (scroll down through recent blog posts for broader information or click here to read results) and encourage you to do your own research..  But whatever you do, don’t accept “no hope” for an answer.  Because the one thing I’ve learned over this past year is that there is plenty we can do to help preserve and improve our eyesight.

 

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Help Me Put the National Spotlight on RP

Written By: ingridricks - Jan• 21•14

The-Dr-Oz-Show

Okay…after two weeks of nonstop book launch craziness, I’m finally back in Seattle and back to my daily eye health routine.

I’m re-committing myself to my whole-body health focus: diet, lifestyle, emotional health, physical health with eye exercises and supplements sprinkled into the mix. I’m also back to my daily kale, celery & cucumber juice with a teaspoon of chia seed—which I absolutely swear by these days  And…I just booked my next week-long trip to New Jersey for a second treatment with Dr. Rosenfarb.  He’s so involved in working to get his RP treatment protocol tested and recognized by the Western medical community and the world as a whole that I believe he represents the best ongoing treatment solution for RP currently available.

Because of his expertise in eye health, Dr. Rosenfarb was recently invited on the Dr. Oz show to discuss simple, effective ways to maintain eye health as we age. The segment was powerful—but he didn’t have an opportunity to talk about the more important work he is doing to help patients with Retinitis Pigmentosa, macular degeneration and other degenerative eye diseases to save their eyesight.

I think his Dr. Oz appearance opens the door for us and gives us an opportunity to shine the spotlight on RP and the preventive measures available to us.

To view Dr. Rosenfarb on the Dr. Oz show, click here And if you have a minute, leave a comment about Dr. Rosenfarb’s RP clinical trial with Johns Hopkins University and your desire to have Dr. Oz do a show on that.  (Here’s a link to that study and the initial results).

 I know that when it comes to medical research and funding, the squeaky wheel gets the oil. Let’s BE the squeaky wheel.

 

 

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Taking Today to Celebrate

Written By: ingridricks - Jan• 07•14

HippieBoy In some ways, this post doesn’t have much to do with my eyesight-healing quest. But I think that every once in a while, we need to just stop and enjoy life and CELEBRATE the victories. And today is a big day for me. Penguin is releasing my memoir, Hippie Boy—which I first self-published two years ago—nationwide as a trade paperback today.  It’s a dream come true for me, and it was in part my struggle with Retinitis Pigmentosa that prompted me to write this story and get it out into the world.

Yesterday I had the opportunity to be talk about Hippie Boy and it’s correlation to my journey with RP on the New Day Northwest morning show in Seattle. I’m convinced there is huge connection between emotional health and physical health – and think some of you will identify with this. But I also just wanted to share it with you.

Here’s to happiness, our dreams, and embracing every moment!.

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Andy Rosenfarb Treatment Week 2

Written By: ingridricks - Dec• 30•13

Okay—I know I’m about two weeks late in posting this. But life sort of got in the way.  I sprinted from my final appointment to the train station, barely made my flight, landed in Seattle early morning Dec. 14 and then was slammed straight into holiday season prep, work catch up and family vacation.

My second week of treatment with Dr. Rosenfarb was a repeat of week one:  a session of acu-laser therapy & micro acupuncture, an hour break, then a session of electro-acupuncture & micro acupuncture.

Though I hoped I would double down on my improvements from Week 1, I only experienced a little more improvement to my eyesight at the end of the second week—primarily a little expansion in my outer periphery.  What this means for me is that my eyes responded most to the initial jolt they received in the first week.  Which means that going forward, I only need to go continue with one-week follow up treatments vs. two weeks.

Both my husband and I are very happy about this part of it because six days away from my family and life every three months is much more doable and affordable than thirteen days away.  (both treatment costs and hotel costs are cut in half).

I head back to New Jersey for another week of treatment in March.  In the meantime, I’m back to doing what I can at home to retain and help my eyesight and overall health: eating healthy, green juicing, exercising, keeping stress at a minimum, taking my supplements & herbs and ENJOYING LIFE.

Wishing you all an amazing 2014!!!

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The Low-Down on Dr. Rosenfarb’s RP Treatment

Written By: ingridricks - Dec• 10•13

The RP treatment test results I posted on Friday have generated so much interest and so many questions that I want to try to address them all here.

  1. Where is Dr. Rosenfarb located?  His clinic, Acupuncture Health Associates, is located in Westfield, New Jersey.
  2. How much does it cost? Current rates are $2,000 per week — some patients come for one week; some patients come for two weeks.  This includes initial consultation, baseline eyesight testing, two daily treatments, testing on Fridays and an individual home treatment protocol designed by Dr. Rosenfarb based on the patient’s specific needs.
  3. How long do the results last? Dr. Rosenfarb told me it varies greatly among patients. On average, he says 3-6 months.  He usually recommends that patients come three times the first year –- which is when most of the recovery takes place — then once or twice a year after that for maintenance.
  4. Can I tell a difference in vision in my everyday life?  My visual acuity is definitely better, but I don’t see much difference in my peripheral vision (though it has definitely improved — six degrees, while  better than 2 degrees — is still a small hole for my central vision.)  I’m not looking at this treatment as a quick fix or “restore-all-my-eyesight” solution. What the first week of treatment told me is that this is an affective treatment for me. I’m convinced that it will restore some of my eyesight  (because it already has) and help me maintain what I have left. And that, to me, is worth the investment.

If you have any additional questions or want more information, please contact Dr. Rosenfarb directly at Acupuncture Health Associates.

  • Web: www.acupuncturehealth.net
  • Office: 908-928-0060
  • Email: acupunkk@aol.com

 

 

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Dr. Rosenfarb Treatment: Week 1 Test Results

Written By: ingridricks - Dec• 06•13

happiness-withinI wish all of you were here to share a bottle of champagne with me, because I’m in serious celebration mode.  After five days of treatment with Dr. Rosenfarb, my first round of test results are in.  And they are AMAZING.

I knew I was in bad shape. But didn’t fully appreciate how bad off I was until I had my “before” and “after” comparisons—especially as it relates to visual acuity.

 

VISUAL ACUITY

Near Right Vision:

  • Before Treatment: 20/125
  • After Treatment: 20/50

Near left Vision

  • Before Treatment: 20/80
  • After Treatment: 20/50

Near Vision Both Eyes:

  • Before Treatment:20/80
  • After Treatment: 20/40

 Far Right Vision:

  • Before Treatment: 20/40
  • After Treatment: 20/25

 Far Left Vision:

  • Before Treatment: 20/40
  • After Treatment: 20/25

Far Vision Both Eyes: 

  • Before Treatment: 20/40
  • After Treatment: 20/25

 

 MANUAL VISUAL FIELD TESTS: RIGHT EYE

Right Eye Horizontal (central core)

  • Before Treatment: 0-2 degrees
  • After Treatment 0-6 degrees

Right Eye Horizontal (far periphery)

  • Before Treatment: 50-80 degrees
  • After Treatment: 40 – 93 degrees

Top Right (central core) 

  • Before Treatment: 0-4 degrees
  • After Treatment: 0-9 degrees

Top Right (far periphery – forgot to measure)

Bottom Right (central core)

  • Before Treatment: 0-3 degrees
  • After Treatment: 0-6 degrees

Bottom Right (far periphery)

  • Before Treatment:  80 – 90 degrees
  • After Treatment 65 – 90 degrees

 

MANUAL VISUAL FIELD TESTS: LEFT EYE

Left Side Horizontal (central core)

  • Before Treatment: 0- 6 degrees
  • After Treatment: 0-6 degrees

Left Side Horizontal (far periphery)  

  • Before Treatment 80-90 degrees
  • After Treatment: 70-95 degrees

Top Left  (central core)

  • Before Treatment: 0-6 degrees
  • After Treatment: 0-6 degrees

Top Left (far periphery – forgot to measure)

Bottom Left (central core)

  • Before Treatment: 0-3 degrees
  • After Treatment: 0-7 degrees

Bottom Left (far periphery)

  1. Before Treatment: 70-90 degrees
  2. After Treatment: 60-90 degrees

 

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.

Left Eye:

  • Before Treatment: I saw two dots flash
  • After Treatment: I saw nine dots flash

Right Eye:

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

 

 COLOR CONTRAST

Note: This test measures ability to differentiate colors

  • Before Treatment: 6 out of 9 cards correct
  • After Treatment: 8 out of 9 cards correct

 

CONTRAST SENSITIVITY

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

  • Before Treatment: I could identify 7 out of 8 lines
  • After treatment: I could identify ALL 8 lines

 

I’ve undergone extensive acupuncture over the past year with different practitioners but have never had anything close to these results. I feel like I’ve been given back my life. Thank you all for your amazing friendship, support and healing energy. And to all of you struggling with this eye disease—it’s worth contacting Dr. Rosenfarb at Acupuncture Health and at least talking with him about your case.  Every RP patient I’ve encountered this week has experienced a positive result. I wish I had started with him from the beginning.

 

 

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Laser Acupuncture for RP Treatment

Written By: ingridricks - Dec• 05•13

lazer image

This is me undergoing my daily acu-laser treatment. (I had no idea I look so sci-fi.) I asked Dr. Rosenfarb if he could provide an overview of how his laser acupuncture treatment works. Here’s what he had to say.

 Laser Acupuncture works by using photo-biomodulation (laser-light impulses) at specific acupuncture points around the body. It is believed that the body’s organ meridians in the Chinese Meridians exist at a light frequency. We use Acu-laser or “light needle” as a non-invasive way to stimulate certain acupuncture points that may benefit vision and improve function.

 My general theory is that acupuncture works more on the Qi (energy) and Blood (circulation) level.  Acupuncture opens the blockages and increases the flow of Qi and Blood to the eyes (branch symptom) and is also used to correct/support the underlying cause (root issue). Acupuncture does not add anything or take away from the body, it just helps regulate function. If the eyes receive oxygen, nutrients, fluids, glucose for fuel, and fats for nerve regeneration, the vision will stabilize and may improve.  

Laser therapy actually puts photon (light) energy into the body. This light energy is absorbed by the cells and stimulates the mitochondia in the cells to produce more ATP-energy and increase function. Mounting research suggests that cellular mitochondrial dysfunction is a key factor in the neuro-degenerative process (brain and eye). The laser treatment “doses” the cells with energy—like when you charge your cell phone battery. Due to the nature of RP, the eyes have genetic “weak batteries” which need regular recharging to keep them functional. We recommend periodic recharge using acu-laser treatment to keep the nerve cells fully charged.  This will help optimize eye health and function.

 Dr. Rosenfarb told me he uses laser acupuncture  in cases where patients don’t respond to traditional acupuncture, have experienced severe vision loss (me), and those who are uncomfortable with the needles. He stresses that when it comes to laser acupuncture, getting it just right is KEY. Too little “dosing” (power + time), and you won’t get a result. And he says overdosing can actually cause a negative response. He said he developed his treatment method in collaboration with European doctors who have done extensive research on laser therapy for eyes and is currently the only practitioner using it to treat eye diseases.

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