RP Acupuncturist List Growing

Written By: ingridricks - Mar• 18•16

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The list of acupuncturists who have at least some training in treating Retinitis Pigmentosa and Macular Degeneration is growing. It’s not nearly where it needs to be –and I recognize there is a huge void internationally. But if we all just keep pushing, keep asking for it — I know that ultimately ALL of us will have local access to affordable treatment. We shouldn’t have to be independently wealthy to access treatments that can potentially help us save our eyesight.

If anyone has positive experiences with other practitioners, please contact me at ricks.ingrid@gmail.com.

Note: This is only meant to be a resource guide — please do your own research before choosing a practitioner to work with. Methodologies vary significantly among practitioners and RP patients respond differently to treatments. Costs vary greatly as well. This list is not compiled in any particular order. I’m just adding names as I get them.

 

Acupuncturists with Experience/Training in RP Treatment

Naturopaths who treat RP

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How Do You Define Yourself?

Written By: ingridricks - Mar• 04•16

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Seeing a blurry bald head looking back at me in the mirror has done a number on my psyche these past couple of weeks. Between the RP and chemo-induced blurriness and hair loss (topped off by a black eye from hitting my face in the shower), I’ve hit the kind of emotional lows I’ve not experienced since those first dark weeks after my RP diagnosis twelve years ago.

But this morning, as I listened to the voices bouncing around in my head about my RP and cancer and the challenges of it all, it occurred to me that so much of what is bothering me is mental vs. physical—and that none of these ridiculous health problems have anything to do with who I really am.

So I made a list of who I know I am and this is what I’ve got:

  • Happy
  • Healthy
  • Passionate
  • Strong

What do these words mean to me?

 Happy: I’ve always been an upbeat person. And I’ve got plenty of reasons to be happy. I’ve got the most amazing husband and daughters around. I’ve got an incredible group of friends  (and a caring mom) who are there for me WHENEVER I need them. I live in one of the most beautiful spots in the world. And I have a flexible work life and work that I’m passionate about. Happiness is a choice and I’m making that MY choice –every day.

Healthy. I’ve worked hard to be healthy and I’m going to continue to do everything in my power to be as healthy as I can be—mind, body and spirit. This Includes working out daily, making healthy eating choices, eliminating stress whenever possible and walking to the beach whenever a sunny day appears.

Passionate. I started my career as a social issues journalist and continue to root for the underdog. I believe in pulling together and giving each other a hand up. When it comes to RP, I’m convinced that whole-body health is key to saving eyesight and know that micro acupuncture has been helpful to many of us as a treatment option — and I’m going to keep fighting until quality RP acupuncture is accessible and affordable for anyone who wants to give it a try.

Strong. I’ve battled adversity my entire life and it’s made me tough.  I’m a fighter, I’m a survivor. I’m defiant and I NEVER give up.  I’m go to live a long healthy life – and I’m going to SEE IT all the way through.

Now it’s Your Turn

What defines you as a person and makes you who you are? Who is your best you – and if you are living your best you, what does that mean in terms of the actions you take and the way you live your life? Make a  list and share it here — or on the Determined to See Facebook Page.

Retinitis Pigmentosa and other health issues are hard. But they DO NOT define who we are. So let’s live the life we are meant to live.

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RP Tricks of the Trade

Written By: Jeanne and Ingrid - Jan• 26•16

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A wise man once said “write what you know” and knowing is a perpetual education.

I know I’ve learned a lot over the last few years, much of it positive and most of it by trial and error. I’ve assembled an impressive bag of RP tricks that are likely familiar to you all.

Jeanne canoingWhen I was still driving I never turned left onto a two-way street. I ritually put my hand out first when meeting new folk (to spare myself the embarrassment of missing the hand they inevitably offer) and I habitually read restaurant menus online to assure myself a bright and frustration-free experience. I walk into darkened rooms and stand ever-so-coolly still; pretending to survey the scene when in reality I’m waiting impatiently for my eyes to semi-adjust.

Fake it till you make it is my modus operandi; anything to appear “normal”. I could fill a novel with silky pivots and stealth maneuvers but I’d rather write about two essential RP tools; the cane and the flashlight.

Audrey Hepburn made blind sexy in Wait Until Dark but there’s nothing seductive about a spindly white mobility cane. I was cane trained long before necessary and I still don’t walk with one. That iconic badge of the sight impaired has negative connotations for me mired in ego, fear and pride. Granted it’s my own baggage but I don’t want to be pitied, I don’t want to be helped and I don’t want the world to see me as less than I am.

My happy alternative comes from a small Winnipeg-based company called Ambutech https://ambutech.com/shop-online who make a groundbreaking lightweight graphite cane that hits all the right notes. It folds up small into a bag or a purse, its available in an impressive variety of lengths and it sports snappy colors – bright blue, red, green and purple, even yellow and pink if you’re so inclined. I have a 36” black model that serves more as a walking stick but keeps wandering stragglers at bay and doesn’t label me as visually challenged, just someone who needs a little support. This stylish accessory is the ultimate boon.

The flashlight was invented in 1899 but it took me some decades to discover its unlimited benefits. Pocket-sized and relentlessly bright – 250-300 lumens worth – it has enabled me to walk at night with added assurance, locate essential items in my semi-dim closet and navigate unmarked stairs. Pinpointing toilet paper in a dark public bathroom is a game changer. I have flashlights everywhere – my bag, my bedside table, my office and in the kitchen. This simple solution affords significant strides in the way of convenience and confidence. http://www.amazon.com/gp/product/B00D3Y3JEE?psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s00

Let’s pool together our tips and tricks and make everyone’s life a little bit easier! – Jeanne

***

Ingrid blogI’ve been so consumed with saving my eyesight that anything that hints of accommodating my visual impairment has always felt like giving in to the disease. (I second Jeanne’s sentiments regarding the white cane completely.) But this year, as part of my overall GET HEALTHY strategy, I’ve realized that making life easier for myself is actually a way to decrease my stress and improve my overall health.

I’m determined to be healthy so when I saw Jeanne whip out a small flashlight and read through her menu with ease during a recent rendezvous dinner with her and fellow RPer Lesley Etchells (and our amazing spouses), I knew it was something worth trying.

A few days later, Jeanne surprised with a package of three high-powered flashlights that now accompany me wherever I go. And the difference has been life changing. I can now walk down the street in dusk or darkness without feeling the familiar panic wash over me. I can now read a menu in the ridiculously dark restaurants that dot my neighborhood. And I can now find my way to our car in the early morning or night and see the correct door handle—ensuring that I always make it into the front passenger seat.

It’s been so liberating that I’m ready to follow whatever RP tools of the trade tips Jeanne recommends (got to say…I’m intrigued by her colored walking sticks)—especially since she kicks butt more than anyone I know when it comes to living life fully and refusing to let RP get in her way. – Ingrid

 

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Healthy 2016: Reducing Stress

Written By: ingridricks - Jan• 12•16

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I have a horrible time saying “no,” even when I know that the word “yes” often commits me to stressful situations full of logistical nightmares that include fumbling my way through crowded, dimly lit airports or train stations, nights in unfamiliar, under lit hotels, long work days and time away from my husband and two daughters.

So as part of my Get Healthy 2016 resolution, I’ve decided that this behavior has got to stop.

While on a flight home Sunday from such a trip (rewarding but full of stress), I made a list of all the things that bring me joy and peace, and all the things that send my blood pressure skyrocketing.

The joy and peace part was easy to identify: morning coffee at my favorite coffee shop with my husband, John, a relaxed day of client writing in his office (where I have a desk), lunch with John, an hour-long workout at the gym, and a relaxing evening. For me this means plenty of time to cook and enjoy dinner while listening to Billie Holiday, a cup of tea by the fireplace, an evening game of chess with my daughter, Hannah, and a hour or so kicking back to read or watch a favorite TV show, followed by a night sleeping in my own bed.

Throw in a weekly date night, regular walks to the beach, designated time for personal writing, and occasional phone calls and outings with my core group of friends and I’m good. That’s all I need for a peaceful, stress-free existence. What brings on the stress is saying Yes to work that requires travel or “opportunities” that boil down to a lot of work with not much compensation and leave me feeling drained. So this is where I’m starting this year –with the word “No.”  And just saying it here is empowering.

What’s on your list of things that cause you stress? And what brings you joy and peace? Let’s do this together. I know it will help our health — including our eyesight.

 

 

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And What a Year it Was…

Written By: Jeanne Aufmuth - Jan• 04•16

Janne and Parker

A New Year is upon us with maximum potential for joy and expectation.

For as long as I can recall I’ve carved out time on December 31 to cobble together a list of positive memories from the previous three hundred and sixty four days. Not only does it help me move on but I’m perpetually surprised by what pops up in review.

These days the highlights are tempered with the frustrations of living with a more advanced RP. Savoring the beauty of the Kyoto cherry blossoms was a game changer. Brushing my teeth with hydrocortisone cream was not  Brushing my teeth with Cortaid cream was not (the tubes really look alike, okay?) Watching Gustavo Dudamel conduct Beethoven’s Ninth was emotionally electrifying. The pitter-patter of baby aspirin and peanuts hitting the floor, never to be seen again (by me) was not so endearing.

I was thoroughly consumed by the brilliant words of Hanya Yanagihara’s A Little Life, just as I was hugely underwhelmed by the relentless search for my food in darkened restaurants. I sparked to the genius of Lin-Manuel Miranda’s Hamilton even as I stumbled my way through the pitfalls and pratfalls of the New York subway system.

Like all of you I’m beginning this year fresh – full of promise and resolution to be better, to be stronger and to thrive despite the challenges. Among my more public vows…

  •  Pinhole glasses. Yes they’re a party trick but at the very least they aid eye strength and I need all the help I can get.
  •  Be at peace with moving through the landscape with tentative steps not self-assured strides. That’s my reality.
  •  Weekly acupuncture. Due to holiday travel I’ve been three weeks without and I already feel the fade. I’m committed to this regimen without hesitation or reservation.
  •  Be fearless in every way available to me. I’m not going to race down a ski slope or drive myself along windy coastal roads. I am going to walk without a cane, bike on a tandem, relish my daily yoga practice and dance till I drop.
  • Spend as much time as possible with my beguiling new granddaughter. I can’t see the sharp details of her tiny face but she’s just as beautiful in soft focus. And she smells really good.

Last, but not remotely least, a warm New Year shout out to my fellow RP warriors – you’ve made the journey palatable and you offered strength when there was none. I feel privileged to ring in 2016 calling you friends.

 

Dragons breathing flame

On my counterpane

That doesn’t frighten me at all

     – Maya Angelou (thank you Ingrid!)

 

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Doubling Down on My Health

Written By: ingridricks - Dec• 30•15

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If I needed another push to get my whole body health in order, this bout with breast cancer has done the trick. And at this point, I’m determined to get to the root of my health issues—cancer and RP alike.

The person I’m tapping for help is Dr. Damon Miller, who immediately reached out to me after learning about my cancer diagnosis and happens to specialize in the treatment of both RP and cancer. For those of you who don’t already know, I first met Dr. Miller in April of 2008 when I started looking for answers to save my eyesight. Dr. Miller, a board-certified MD and ND, offers a comprehensive home treatment program for RP, and was the first one who provided me with hope for my eyesight and started me down the path of taking charge of my eye health.

I’ve done pretty well with the nutritional supplements and micro current stimulation part of his RP protocol. And I was feeling good about the daily green juicing I’ve been doing.  But that’s only one small piece of the healing program Dr. Miller offers. He emphasizes a whole body health approach—greatly individualized for the patient he is working with—that drills down on both physical and emotional health with extensive detoxification and nutritional screening and a complete lifestyle revamp in terms of diet, nutrition and ongoing elimination of environmental and emotional toxins.

I know I need it all and this year, I’m focusing on addressing the root cause of the disease vs. treating the symptoms. Acupuncture with eye acupuncturist Lee Huang is still gong to be an important part of my eyesight maintenance strategy. But this year is all about mind, body, spirit—which means daily guided meditation, monthly massages with my husband, and a serious anti-cancer, anti-RP, HEALTH ALL THE WAY overhaul.

I just wrapped up a call with Dr. Miller and my first step is to map out an emotional timeline of my life, including repeated emotionally toxic patterns, so we can start getting to the root of the emotional stresses behind my health issues. I’m also starting on high doses of Vitality C, which is a sodium ascorbate, rather than the calcium ascorbate found in most Vitamin C. According to Dr. Miller, Vitality C is bonded by Ribose, a five-carbon sugar that does not feed cancers and allows the Vitamin C to be absorbed by the gut and cells quickly. Vitamin C tricks cancer cells into thinking it’s glucose, which it devours, only to have the hydrogen peroxide produced by the vitamin go to work on destroying the cancer cells.

Dr. Miller is also starting me on some cancer-fighting enzymes and has told me I need to eliminate sugar from my diet (including fruits). Yes – I’m doing it. If fading vision couldn’t convince me to give it up, the idea of dying prematurely has definitely persuaded me.

I’m going to be monitoring my PH balance (PH strips are on the way) and will doing an electro-dermal screening that will gather information about my body system that Dr. Miller can use to guide me in terms of the nutrition and detoxification plan that is necessary for me. (I’ll write more on this as I get into it).

The good news about the tumor that was just removed from me is that it was contained. But the fact that a highly aggressive cancer could find it’s way into my system means that I have a body environment that is conducive to cancer and I’m determined to change that, while at the same time changing the environment that has been slowly killing my retinal cells.

Here’s to a New Level of KICK ASS, Take Charge of Our Health Year Ahead. Who’s With Me?

P.S. I wanted to say a special thank you to DTSer Trix Bradley, who gifted me with a nine part docu-series called The Truth About Cancer. It’s reduced my fear and convinced me to get as proactive as possible in terms of making my immune system healthy. THANK YOU!!!

 

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Throwing Cancer into the RP Mix

Written By: ingridricks - Dec• 13•15

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With all the green juicing I’ve been doing, breast cancer was the last thing I saw coming. But I guess that’s the thing about life: It throws things at you whether you see them coming or not – and it’s a reminder that as hard as RP can get, there’s lots of hard core health challenges out there, and some happen to be more urgent than RP.

I’ve been so consumed with my eyesight issues that it was the only thing on my mind when I went in for my annual exam recently. In fact I spent the first ten minutes of my appointment lamenting about my vision challenges. Then my doctor did a routine breast exam and said, “What’s this?”

Amazing how much perspective those two little words delivered. Suddenly the only thought racing through my mind was, “Please only let me have my eyesight issues to worry about. Please.”

I’m trying to wrap my arms around the life lesson in all of this as I head into surgery Tuesday and brace myself for the unknown cancer journey that awaits. And it comes down to what I know that we all know but so easily forget: that all any of us has for certain is NOW and that we’ve got to embrace and enjoy the present.

I know all of us are fighting hard to ensure we can see our future. But along the way, it’s crucial to breathe, enjoy life now and be thankful for all that we have. What this has reiterated for me is that at the core, the only thing that really matters is relationships – and I’ve been gifted with the most amazing network of family and friends I could envision. And that’s where I’m putting my focus.

Last night this meant an impromptu disco dance party with my husband and thirteen-year-old daughter, Hannah. It’s one of the best Saturday nights I’ve ever had.

What are you doing to enjoy life NOW?

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Patient-Driven Acupuncture Research Database – An Interview with Nadine Streit

Written By: ingridricks - Dec• 10•15

Fellow RPer Nadine Streit is in the process of launching a patient-driven RP Acupuncture Database to collect objective, quantifiable results from RP patients about the use of specialized acupuncture to treat RP.  I reached out to her recently to find out more about her, as well as  her goals and plans for this project. Have to say – I’m INSPIRED.

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IR: Where do you live?

Nadine: In northeast France, and soon in Paris.

 IR: When were you first diagnosed with RP and how much vision do you have left?

 Nadine: I was about five or six ears old. My mother took me to an ophthalmologist because I couldn’t find the stairs outside at night. Today, I’m 35 and I have about 10-15° of visual field left. My central vision is good except in my left eye because of a Macula edema.

 IR: What got you interested in acupuncture for RP? have you tried it? If so, with whom and what was your experience?

Nadine As a patient, I wasn’t satisfied with the information provided by my ophthalmologist and as a physiotherapist, I thought that my patients should be better informed! Most of my patients felt better after following non-conventional treatment (for back and joint pain) like acupuncture and osteopathy,  and I was surprised that these therapies weren’t recommended by the health authorities. Then, I decided to study health education and began my master research. I used my situation as a patient and analyzed myself. I compared what kind of information is accessible about my disease on the Iinternet with what doctors provide to their patients.

This is how I found many testimonials about a specific acupuncture treatment for eye diseases in the U.S. I concluded that it was impossible to estimate the credibility of these testimonials. Could a treatment exist that might help us without ophthalmologists knowing about it? This is why I decided, two years ago, to try the acupuncture treatment provided by Andy Rosenfarb. Since then, I have received six additional week-long sessions of treatment. For the time being, the vision in my right eye is stable and after each treatment session, my vision is brighter and I can see shapes and lights in my extreme periphery that I couldn’t see before (left and right eyes). This improvement decreases between treatment sessions and comes back after each treatment session. I always see less glare and I can read small characters more easily. Unfortunately, my edema is still there in my left eye.

 IR: What made you decide to start this Acupuncture research database?

 Nadine: I used this experience to continue my master research and question whether there is treatment available outside the health institution. I concluded that because non-conventional medicine is developed outside health institutions, ophthalmologists are not aware of the existence of this kind of treatment. As patients trying non-conventional medicine, we are the first proof of its possible efficiency.

 IR: What kind of information do you want RP patients to send your way as it relates to acupuncture and their experiences?

 Nadine: On an upcoming web site, patients following acupuncture treatment will be able to create their profile by answering a questionnaire, update the treatments they are receiving and post their results. They do not have to reveal their identity and they can choose a different name. I recommend that participants have regular optometry checkups and preferably at the same place. Also, it would be helpful if they carried out acuity and visual field tests after each treatment.

 IR: What is your ultimate goal with this project?

 Nadine: I want to know what the real results of this treatment are and I’m sure many of you want to know this, too, so that  — if it treats our disease effectively — we can draw scientists’ and acupuncturists’ attention to the treatment and make it more affordable.

 IR: How should patients submit information to your database?

 Nadine: The web site should be created in the next few months. Until then, patients can contact me by email and follow the project on Facebook. Please contact me if you are interested in taking part of the project: streit.nadine@gmail.com  or follow me on Facebook: RP Patient Evidence-Based Medicine.

 

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Thankful for Our Partners

Written By: Jeanne and Ingrid - Nov• 28•15

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Jeanne’s Take:

Ingrid Ricks is my RP partner in crime and the person who has made this journey not only tolerable but gratifying. We all need someone who understands the struggles firsthand and who opens up their ears and their hearts when you need it most.

Of course there’s more to life than RP; a fact we are living with every day of the week and every week of the year. My RP buddies are precious to me, but how could I survive the daily battle without my life partner, gold star and my rock; my husband Larry.

Eye disease is not a solitary activity – it doesn’t lend itself to the brand of autonomy we seek to hold dear. We need help – be it physical, emotional or plain old “second sight”. A broad shoulder to cry on, someone to co-share the humor of our periodic falters and face plants, and a pair of eyes focused the right way on the right things at the right time.

My husband is that person; he wears the RP partner badge with surprising aplomb and a steady measure of pride. He allows me the luxury of moving through the world knowing I have support when I need it while allowing me my independence when I can’t tolerate the inevitable alternative.

Most importantly Larry has managed to turn the ultimate lemon – my sight – into lemonade; from the genius idea of buying a tandem bicycle (that we ride virtually everywhere) to turning strenuous eye acupuncture trips into spirited mini vacations. My man is a marvel!

I took an informal poll of RP partners and their voice is united – they worry, they try to strike the necessary balance and they do what they can to grease the wheels of protection and encouragement.

Not an easy row to hoe; indeed our RP partners are our unsung heroes. They didn’t ask for this any more than we did, but they sustain and persevere for better or for worse. I am indebted to mine – how about you?

John and Ing Thanksgiving 2015

Ingrid’s Take:

The day my RP diagnosis was confirmed wasn’t pretty. I remember arriving home, making a beeline for the fridge and pouring myself a water-size glass full of Chardonnay—which I immediately started guzzling in hopes it would block out the terrifying thoughts raging through my mind.

Then I felt a hand on my shoulder and heard John’s steady, unwavering voice.

“We’ll get through this,” he said. “We’ve got each other  and whatever happens, we’ll make it through.”

As I’m sure all of you have experienced, the down days with this eye disease can be tough. But with each belly flop over a dog or sign, each crash into a corner wall or cement post I didn’t see, John has been there to pull me up and patch me up—both physically and emotionally.

I’m so fiercely independent that learning to lean on him hasn’t been easy. In fact, most of our challenges over the years have been caused be me trying to go it alone rather than remembering that this eye disease impacts John’s life in a huge way too and that we are, in fact, in this together. Like Jeanne’s husband, Larry, John has become my second sight in the dark, and a huge support system day in and day out. He is there to take my hand in dim light and crowded stores, and to gently remind me that despite my eyesight issues, I can still see, that it could be a lot worse and that there is more to life than eyesight anyway. He also reminds me of all I’ve got to be grateful for. That list is too long to post. But at the core, it comes down to him, our amazing daughters Sydney and Hannah, a great network of friends (thank you Jeanne for navigating these RP waters with me), walks on the beach, family poker nights, and daily morning coffee and conversation with John.

This past week I’ve experienced another health scare— a kick in the gut that put my RP struggle into perspective, reminded me that every day is a gift, and reiterated that all any of us has for certain is Now. And like always, John has been by my side.

Life is a roller coaster with unexpected turns and twists and ups and downs. But what I know for certain is that John’s got my back and I’ve got his. And that whatever comes our way, we’ll get through it because we’re going it together.

 

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Acupuncturists Who Treat RP

Written By: ingridricks - Nov• 24•15

So many of you have been asking for this that I’m re-posting what I have.  Hopefully we can grow this list in a huge way over the next year — with a focus on affordable, ethical, skilled practitioners who are committed to treating Retinitis Pigmentosa and other degenerative eye diseases If anyone has positive experiences with other practitioners, please contact me at ricks.ingrid@gmail.com.

Note: This is only meant to be a resource guide — please do your own research before choosing a practitioner to work with. Methodologies vary significantly among practitioners and RP patients respond differently to treatments. Costs vary greatly as well.

 

Acupuncturists & Naturopaths (Including some MDs/Ophthalmologists) Specializing in RP Treatment

 

Here are some great websites & documentaries focused on diet, lifestyle, and disease:

 

Books on Holistic Treatment Approaches for Eye Diseases:

 

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