Tripping ‘Round the World. Literally.

Written By: Jeanne Aufmuth - Jul• 05•16

iceland beachI have travel on the brain this summer. Most people do, as the summer months are an ideal time to step out of the daily routine and explore a great wide world that offers so much in the way of alternate vistas, unusual cultures and effortless relaxation.

But for my part travel is feeling more taxing than relaxing. As my peripheral vision narrows and my contrast dims, the planet’s glorious colors seem muted and relentless footprints are edged with fear not freedom.

Having just returned from two weeks in Sweden and Iceland I’m still basking in the glow of a truly unique adventure. Yet on this particular journey I took fresh note of the strain that a new environment puts on my eyes and consequently my psyche. Dark corners are perilous, every step is guesswork, and crowded airports are throbbing with tension rather than anticipation.

There’s a silver lining to the less sighted art of travel; improbable but true. Majestic rushing waterfalls are undeniably more profound to a traveler whose backup senses are intensified – where the pulsing pounding sound is equal to the thrill of the sight. I can sniff out a good fried fish shack at a hundred paces. And food even tastes brighter and more flavorful – lamb’s heart tartare anyone?

iceland signsThere were down days – there always are. I slammed into a cleaning cart in a mood-lit hallway, and tripped and slipped my way down a muddy, rain-soaked path at an ancient Icelandic hot springs. With each low I was reminded of a recent Facebook post from a wise RP friend. To wit – focus and thrive on what you CAN see and CAN do, knowing you may not always be able to do so. I strove to focus on my good fortune – the sheer physicality of travel, quality time with my beautiful family, and observing foreign customs through my own unique lens.

In conclusion? I won’t stop. None of us should stop. RP can rob of us our sight but we mustn’t let it dictate or obliterate our lifestyle nor the passions that are solely, inimitably us.

Let’s get out there and show the world just what were made of!

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Stretching for Life

Written By: Jeanne Aufmuth - May• 31•16

You’d have to be living under a rock to miss the connection between physical fitness and the health of your eyes. We’ve relentlessly sung the praises of acupuncture on these pages – and all of its marvelous benefits – but never neglecting the fact that good nutrition, a positive attitude and consistent physical health are part of the essential and magical combination.

I first read Bob Anderson’s Stretching (a mimeographed loose leaf copy) nearly forty years ago when some skier buddies of my boyfriend were getting in shape for a Canadian heli-skiing adventure. Fitness awareness was in its infancy and at the tender age of twenty-one I was intrigued by the notion of the positive long-term effects stretching could have on my youthful muscles.

Attachment-1The principles of stretching are as time honored as Chinese medicine and as far reaching as the cave man – to coin a phrase use it or lose it. Anderson was an athlete and outdoorsman who believed in maintaining full body strength via simple stretches that could be done as part of a regular home routine. He was a man before his time – before Jane Fonda urged us to “feel the burn” or Nike implored us to “Just Do It.”

I’ve always been the disciplined sort – punctual to a fault, highly organized – and something in Anderson’s visionary message spoke to me. Looking forward is not the basic tenet of a twenty-something but there was a glimmer of a fitter, future me and I started a daily regime of small body stretches. Anywhere from fifteen to fifty minutes a day, and the benefits were immediately evident. Everything I did was easier as I developed a lithe flexibility that saw me through sports injuries, lengthy car trips and the inherent hurdles my slowly aging body asked of me. Over time I added my own quirky movements from yoga and kick-boxing to tai chi. Headstands became a daily staple, but always with the core principle of stretching as support.

Screen Shot 2016-05-30 at 9.07.44 PMI am sixty years old now and proud to say I haven’t missed a day of stretching in thirty- nine years. Not one day. I’ve stretched on days I’ve given birth and the days after. I’ve stretched on cold dirt floors in Africa and in a tent at 14,000 feet in the Andes. Sure there have been adjustment days (scaled back cheater stretches after knee surgery) but I always find a way. Stretching is like air and water to me – so much a part of my DNA that I literally couldn’t function without it. It has seen me through medical emergencies, sixteen-hour plane rides, grief and joy and loss.

But most importantly stretching has helped me through this challenging journey we call RP. As a wise woman once said, “If Option A isn’t available let’s kick the shit out of Option B!” Not only does the daily flexing contribute to that essential level of fitness, it’s an excellent relaxation tool and stress reliever. Stretching is for life.

Millions of copies and umpteen editions later Bob Anderson is still leading the stretching charge, with contemporary additions on computer stretching et al, and it’s still my bible. Even if you’re allergic to exercise there’s a simple stretch that will work for you – always available and perpetually worthy. It’s crucial to keep moving – for your body, for your eyes and for being the best you can possibly be!

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The Courage to Do What’s Right

Written By: ingridricks - Apr• 25•16

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Jeanne and I have come under attack for sharing Per Otte’s protocol—which has been available in the public domain for years—on this blog. We’ve also been criticized for spotlighting Eye Acupuncturist Mats Sexton and his desire to share his knowledge to help people around the world gain affordable, local access to treatment that could possibly save their eyesight.

Like many of you who follow this blog, Jeanne and I have benefited from specialized eye acupuncture and are grateful to all of the acupuncturists out there who have sought out training and specialized education to help those of us suffering from RP, MD and other devastating blinding eye diseases to hold onto our eyesight.

But the lengths to which a few acupuncturists have gone to block or greatly control the access other acupuncturists have to this treatment protocol is, in our view, unethical and unconscionable and goes completely against the holistic healing philosophy of Traditional Chinese Medicine.

Here’s our response to those who are angry with us for sharing information and for our ongoing commitment to do everything we can to make this treatment affordable and accessible for anyone, anywhere in the world, who wants to give it a try.

  1. Mats Sexton did not disclose Per Otte’s acupuncture protocol. Per Otte disclosed his protocol in an abandoned patent application (click here to access) that has been in the public domain for years. This isn’t the first time that a blog has featured it. It was spotlighted on a blog post as far back as 2010. I’m disappointed with myself for not digging deeper sooner—especially given that my husband is a patent attorney. I get two or three emails a week from people all over the world who are desperate for local, affordable treatment options in hopes that they will continue to be able to see.
  2. We are NOT Money Trees. We are mothers, fathers, brothers and sisters who are fighting hard to hold onto our eyesight so that we can watch our children grow up, see our spouses grow old, continue to support our families, do the work we love and maintain our independence. We are not independently wealthy and cannot afford to spend thousands of dollars every few months and take off four to six weeks from work each year for the rest of our lives to fly across the country or half way around the world in hopes of accessing a treatment that can help us save or maintain our eyesight.
  3. Affordable, widespread training is critical. This should be taught in every acupuncture school in the world. It’s simply not true that acupuncturists aren’t interested in learning this protocol and helping patients save their eyesight—despite the argument I’ve heard repeatedly for a couple of years now. Thanks to the increasing awareness about the possible benefits of acupuncture, numerous patients and skilled acupuncturists have been clamoring to access the needling points and necessary training and have been consistently shut down. We are thrilled that more skilled acupuncturists like Mats Sexton are stepping forward to share their knowledge with others—without concern about creating competition for themselves by helping millions of people around the world access a treatment that might benefit them.

Of all the criticisms and ridiculousness I’ve heard since THIS BLOG POST  appeared, this one I received Sunday from a long-time eye acupuncturist stands out: “Many people are so attached to their conditions that you could put a cure right in front of them and they’d refuse it. It’s not up to you to have every blind person treated with acupuncture.”

In the three years since starting this dedicated quest to save my eyesight, I’ve connected with thousands of people suffering from RP and other blinding eye diseases and every one of them is fighting hard to save, maintain and help their sight. To suggest that we are attached to our failing sight or that we would prefer to lose it is downright cruel and there is absolutely no place for that brand of negativity. The last thing Jeanne and I want is to mandate that every “blind” person be treated with acupuncture. We’re working to ensure that an affordable, accessible treatment option be made available to those who are doing everything in their power to rescue their sight and want to give acupuncture a try. We will continue this battle so that everyone struggling from a blinding eye disease has a way to hold onto his or her precious sight. And we invite like-minded acupuncturists and naturopaths to join our fight.
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One final thought: We’ve spent a lot of time on this blog promoting the merits of acupuncture. But that is only one component of traditional Chinese Medicine and naturopathy. Diet, exercise, lifestyle and emotional health are ALL key to maintaining our eyesight and overall good health.

As many of you know, I’ve spent the past few months undergoing chemotherapy for breast cancer and am now teaming with a wonderful naturopath in Seattle to focus on building my immune system and nourishing my body – physical, mind and spirit. Over the next few months, this blog will focus on diet, lifestyle, nutrition, exercise and mental health—with an emphasis on personal empowerment and all we can be doing ourselves to promote our eye health and overall health. Jeanne and I invite any naturopath or acupuncturist interested in providing patient education in this area to do a guest post on this blog.

Here’s to our eye health—and to all of those practitioners out there whose first priority is their patients, not their pocketbooks.

 

 

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To the Finish Line – And BEYOND

Written By: Jeanne Aufmuth - Apr• 07•16

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“In the land of the blind, the one-eyed man is King”. There are vast interpretations of this timeless proverb but my definition of choice applies to the struggles – and sporadic triumphs – of RP and its relentless peaks and valleys.

Our RP community has finally come to this new and promising place on much the same path. Mine – and most of yours – started with a desperate online search that led to Ingrid’s first blog post about the healing properties of acupuncture, something I had not considered as a viable treatment for my worsening condition.

Embarking on that journey was fraught with a heady mix of apprehension, hope and confusion that encompassed long distance travel, a multitude of expenses, and the frightening concept of bouts of potentially painful needling that would somehow benefit my eyes.

IMG_3169My initial two-week round of acupuncture yielded recognizable and encouraging results, and lent a positive outlook that loosened the grip of a deepening sense of depression. We’ve all been there at some point in this fight. My good results also inspired an idea: if sporadic micro-acupuncture was an effective remedy, why not an additional weekly “maintenance” treatment too? I approached Ingrid with a plan: stop the spendy eye-based treatments for six months and focus exclusively on a whole-body method once a week for twenty-four weeks.

Speaking for myself the results were impressive – the eyes working in conjunction with the whole body in order to support healthy sight. And the real upside was not just stronger eyes but combatting the core anxieties of failing sight – the incessant fear of falling, of feeling ostracized, the loss of independence and a future in the dark.

Post study I discovered what I find to be the correct balance of whole-body and micro-acupuncture treatments. Through trial and error each of us has to find our own individual rhythm and practice, as the results can be wildly diverse. It’s essential to take control of our own healthcare – treatment, nutrition and exercise — as there is no one magic formula. And naturally the personal side of the experience is an emotional and immensely visceral one.

Re acupuncture itself, the core values are simple: be consistent, surrender to the unknown, maintain a positive attitude and above all be honest with yourself.

Which all brings me to today. Ingrid’s and my consistent battle cry has been to make this therapy accessible and affordable to everyone suffering from RP. We fervently believe in not only what we’re doing but why we’re doing it – to define a superior approach for every RP patient to care for his or her eyes.

Attachment-1Through relentless pounding of that drum we discovered Mats Sexton, who not only fights the good fight on the acupuncture front, but feels the same ceaseless frustrations over decent treatment availability and affordability and the code of secrecy that has plagued our collective RP passage.

Now the protocol is available to all – to anyone and everyone who wants to take steps to help improve and maintain healthy sight.  (To access, click here) We have our naysayers – and to those I say Eastern medicine or Western – not everything works for everyone. But how will you know if you don’t try? And why wouldn’t you try everything in your power to preserve and improve your waning eyesight? That’s a no-brainer of epic magnitude.

Thanks to the support of so many – in particular fellow crusaders Ingrid Ricks and Mats Sexton – I’m taking action, doggedly resolved to make the most of my options and hitching my star to those with an equally unwavering vision. By taking control of my future I’m choosing to play one-eyed man and be King of my domain.

 Note: to check out more of Jeanne’s eye art, click here.

 

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Eye Acupuncturist Shares Vision Protocols, Seeks to Save Sight for All

Written By: Jeanne and Ingrid - Mar• 28•16
Mats at the top of the summit of Denali

Mats at the top of the summit of Denali

Editors’ Note: After a long fight to obtain affordable, accessible treatment for anyone wanting to give acupuncture a try, we are thrilled to have connected with Mats Sexton, LA.c,  a seasoned eye acupuncturist based in Minneapolis who shares our fervent belief that acupuncturists everywhere should have access to this vital information and training so they can provide local, affordable treatment for all eye patients.

We connected with Mats shortly after we made what to us was a shocking discovery: that the micro-acupuncture points so many of us have been begging eye acupuncturists to share are listed in detail in a long-abandoned patent application that is available to anyone in the public domain.

This, combined with Mats’ own vision protocol that he so generously offered to share with us all (below), is a great starting point for any interested acupuncturist. In addition to this, Mats is launching affordable, comprehensive live training for acupuncturists this summer at his Minneapolis clinic.

Here is Mats’ remarkable story (including the vision protocols). PLEASE read this post and share it with every acupuncturist and eye patient you know.

To our eyesight and beyond! – Ingrid and Jeanne

 

Eye Acupuncture Seeks to Save Sight for All

 

Celebrating Halloween with a young Stargardt patient

Celebrating Halloween with a young Stargardt patient

Acupuncturist Mats Sexton, L.Ac,  had been so focused on his Minneapolis-based practice, treating patients with degenerative eye diseases, that he didn’t truly appreciate the huge void in the market and the boiling-point frustrations over lack of affordable, accessible treatment options until he started receiving phone calls a few months ago.

The inquiries came from all over the country and were all the same: people suffering from RP and MD were desperate for realistic treatment options. More than anything, they wanted access to the vision protocol used by most eye acupuncturists so they could share the information with their local acupuncturist and get the real help they needed.

“They’d ask, ‘Can you help me with the points for my acupuncturist? No one will share the points.’ I had no idea of the level of frustration out there,” says Mats.

Mats, who built his own practice around a community acupuncture approach that enables him to charge as little as $40 per follow-up treatment, had a heart for the plight of these discouraged patients and was happy to share his protocols with their practitioners. But the importance of sharing knowledge and providing affordable, widespread training to treat degenerative eye diseases such as RP and MD didn’t fully hit him until his father was recently diagnosed with Wet MD.

“I had been managing his Dry MD for a few years and when it bled I thought, ‘How can I help him? He’s in Arizona for the winter and I’m in Minneapolis’,” says Mats. “It was so frustrating and I knew he needed someone local who could provide treatment. So I began researching acupuncturists and ended up calling Mary Papa, L.Ac., who practices only a couple of miles from my parents’ house. I explained the situation to her and asked if I could train her so she could help my dad. She agreed and I flew down to Phoenix to train her. Now my dad, and the rest of Mary’s clients, has access to the treatments.”

Mats isn’t new to the world of eye acupuncture. He first learned about the use of acupuncture to treat degenerative eye diseases in 1998, as a student at the Minnesota Institute of Acupuncture. He contacted Per Otte, who was using the micro-acupuncture protocol developed in Denmark in 1984 by Freddy Dahlgren, and asked if he could write a research paper on the topic. Otte declined, but as Sexton’s interest in acupuncture methods grew he began contacting Otte several times a year over the next few years until Otte finally agreed to train him in 2003.

Along with the micro-acupuncture training from Otte, Mats has traveled twice to Denmark to learn the AcuNova method developed by John Boel. He currently uses variations of both protocols, depending on the client, and combines several other techniques including Japanese Hara (abdominal) analysis and scalp acupuncture, and additional hand and body points.

Mats and his beloved dad, Bill.

Mats and his beloved dad, Bill.

“There are numerous so-called ‘micro-acupuncture’ systems that use hands, feet, ears, scalp, even the nose,” notes Mats. “When I found Freddy Dahlgren’s book of his acupuncture meridians and points, I began to adapt the protocol to make it unique for various ailments. It didn’t make any sense to me why it should be the same for everyone. Some people need more Kidney help or maybe Liver or Heart.”

Currently, Mats charges $800 for ten treatments over a five-day period for first-time patients, including before and after visual field scans and other eye tests, as well as an in-depth consultation to discuss overall health, nutrition and identify underlying issues that are contributing to the eye disease. After that initial week, he prefers seeing patients more frequently rather than every few months.

“I think it’s vital to have patients come for a pair of treatments about twice a month because these ‘eye’ diseases are really systemic diseases and we’ve got to work on the root causes,” he explains. “Unfortunately, the reality is that you can’t do ten or twenty treatments and magically make a chronic disease go away. This is why it’s so critical that we get as many practitioners trained as possible – so that interested patients can access quality, affordable local care on an ongoing basis.”

Adds Mats, “Clients also need to take responsibility for self-care and I spend ample time educating them on making good choices for their vision.”

Recognizing the urgency of the situation, Mats has decided to step into the role of trainer himself and has been completing a comprehensive accredited curriculum that he will launch this summer.

“My clinic is small and my treatments are highly personalized but this isn’t ideal when so many people need care,” he explains. “I never wanted to run an eye-factory like I witnessed during my training, and now I realize I need to teach the protocols I have created.”

Mats' clinic in Minneapolis

Mats’ clinic in Minneapolis

The two-day intensive weekend training workshop will be held in his Minneapolis clinic. Mats will spend the first day discussing the anatomy and physiology of the eye from both Western and Eastern medical perspectives, delving into the different types of eye diseases and disorders that can be treated, and how to test vision. The second day will focus on point location and needling with lots of hands-on training and practice so acupuncturists are confident with the protocol.

He estimates the two-day accredited continuing education course will be priced at about $1,000, the same as his coursework with John Boel in Denmark.

“I want to keep the price affordable for acupuncturists who want to attend and I think that’s a fair price for the workshop, especially with the inclusion of testing materials, which are expensive” he notes. “My plan is to limit the class size to twelve acupuncturists to ensure they get the one-on-one assistance they need.”

Along with his live training, Mats is sharing some of his key vision protocols here – which, along with the comprehensive micro-acupuncture points that are outlined in the public domain document – will provide acupuncturists who can’t attend his live training the baseline information they need to start helping people suffering from RP, MD and other degenerative eye diseases. From Mats’ perspective, sharing vision protocols with acupuncturists and people suffering from degenerative eye diseases isn’t only the obvious thing to do; it’s the right thing to do.

“In the Community Acupuncture movement, everyone shares protocols, intake forms, and ideas so that everyone benefits,” Mats observes. “I think about my dad and all the other people that need help; this has become painfully personal now. I believe that any skilled acupuncturist can learn and apply this information and I’m going to ensure that every one of us does!”

Vision Protocols

To download the detailed micro-acupuncture points for treatment of degenerative eye diseases as outlined in the public domain document [See Figures 8 & 9 for MD & RP treatments), Click Here

And here is the information that Mats Sexton has so generously offered to share with all of us.

 lsNeedles: I typically use DBC brand “Spring Ten” 34 gauge-DBC3; 1 inch (.20×15). Depending on the thickness of a client’s hands and/or feet (callouses) and their tolerance, you may need either thicker or thinner needles. I hand-insert the needles but you may use needle guide tubes. Just insert and do NOT twist or twirl to get DeQi!! This will be extremely painful for your client!!

Depth: Insert to the bone level.

I request, and may soon require, clients to visit their ophthalmologist within 2 months or less before starting acupuncture to get a solid baseline of visual acuity and eye health.

In clinic, test eyes before starting your acupuncture: Amsler Grid; Snellen standard eye chart (either hand held or 20′ distance); color vision testing plates; and contrast sensitivity are good, simple tests. Some of these items can be ordered at www.Bernell.com. Also note subjective details of a client’s vision for future reference/comparison when retesting.

Years ago I changed the protocol to 2 sessions per day with 30 minute needle retention. We were initially taught 3 sessions of 20 minutes each. I wait about an hour between sessions.

 Typical treatments for RP

Treatments 1, 3, 5, 7, 9: Micro Acu (see diagram on public link) or AcuNova, GB 14, Yin Tang, K10, K3, Sp 6, K1

Treatments 2, 4, 6, 8, 10: Micro Acu or AcuNova; GB 14, Yin Tang, LIV 8, ST 36, LIV 3, K1

 Typical treatments for MD/Stargardt’s

  • Treatments 1, 3, 5, 7, 9: Micro Acu or AcuNova; GB 14, Yin Tang, Liv 3, Sp 6, Scalp Visual Cortex a-shi GB 19 area.
  • Treatments 2, 4, 6, 8, 10: Micro Acu or AcuNova; GB 14, Yin Tang, K6, Sp 3.

Retest vision and compare results after ten sessions.

Repeat the sequence and retest after the next ten sessions.

Other points to consider: Occasionally I will add one or two other points based on differential diagnosis. Keep in mind that the main treatment already uses a lot of needles so choose wisely if you wish to add more. Treat other (non-vision) complaints in a separate session.

  •  For heat/redness/pain in the eyes I often add: Liver 2 and Stomach 44 (maybe Large Int. 4) with strong DeQi.
  • For dry eyes add GB 41.

What if the treatment doesn’t seem to be working? Usually some change is noted after the first ten treatments. If the client is not seeing results after 20 treatments, consider what else might be contributing to their condition. Medications, smoking, chronic disease, lifestyle, nutrition, exercise, sexual activity, household toxins, stress, emotions, etc. I HIGHLY recommend clients have a comprehensive blood chemistry panel at least annually. This can lead to answers and solutions. Sometimes the treatments alone don’t seem to work.

Know this: Chinese medicine has 5 branches: acupuncture, bodywork, exercise, nutrition and herbology. For the best chance at success, you must incorporate all of these! Just doing acupuncture is 1/5 of the treatment.

In my experience, I find often find that RP and Stargardt’s are more challenging and require more treatment than macular degeneration. This often has to do with their congenital nature and effect on Jing.

In my practice, I emphasize whole foods over supplement pills, with the exception of Chinese herbs, the ingredients of which are not readily available in most foods.

The AcuNova needling theory and protocols are too difficult to explain via this format but I will teach them live. Or, I highly suggest taking the class from John Boel in Denmark. www.acunova.dk

I will try to answer questions but, please, if you’re truly interested in learning this, sign up for the class. Also, please be patient when waiting for a reply to your questions…I’m only one person! Thanks.

Be Well,

Mats Sexton, L.Ac

For more information on Mats Sexton, L.Ac., his practice, his philosophy and his upcoming training workshops, please visit his website: www.pindoctor.com He can also be reached via email: mats@pindoctor.com

 

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RP Acupuncturist List Growing

Written By: ingridricks - Mar• 18•16

Enjoying_Life_by_BenHeine

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

IMG_2675

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

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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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