When I first started on this eyesight healing quest in early February 2013, I was at the lowest point in my life.
After waiting for six months to see a retinal specialist because I’d heard she was starting stem cell clinical trials, I was told that RP was an orphan disease and was too low on the priority list to receive funding to take promising research to the next level. Then she confirmed what I already knew – that my vision was down to three or four degrees of central vision with a strip of blurry vision in my outer pheriphery – and told me I had cataracts forming. Like every other eye doctor I’d visited, she said there was nothing I could do to save my eyesight and indicated I had only a few years left to see.
I cried for two days straight and then decided I was done with “no hope” and was going to fix my eyesight myself through naturopathy and specialized acupuncture.
It’s been a year and a half and instead of getting worse, my eyesight has improved. I now have so much peripherial vision that I recently played tennis with my daughters. I still have a donut of blindness around my central core – but it’s shrinking and I no longer worry about going blind. I know that if I keep doing what I’m doing, I’ll continue to see.
I feel like I’ve been given back my life. And I’m now on a quest to help others dealing with a degenerative eye disease say “NO” to “NO HOPE” and take charge of their eye health.
On Tuesday, September 23rd I’ll be leading a free eye health workshop at Des Moines Library in the Seattle area. The workshop is being supported by an artist grant I received from 4Culture. If you know anyone who might benefit, please share this blog post with them. Here’s to our eyesight – and our overall health.
From Powerless to Empowered: Five Secrets to Taking Charge of Your Eye Health
- When: Tuesday, Sept. 23rd at 6 p.m.
- Where: Des Moines Library -21620 11th Avenue S 206.824.606
Refusing to accept that there was no hope or cure for her degenerative eye disease and that she would soon be completely blind, author Ingrid Ricks decided to take charge of her eye health through a holistic approach that integrates naturopathy and Chinese medicine. Ricks will share her journey from victim to eye health advocate, read a short piece from her memoir in progress, and discuss the five things she’s been doing to maintain and improve her eyesight. She will also demonstrate simple eye exercises and acupressure points that have been proven to benefit eyesight.
Ingrid Ricks is an author, eye health advocate and teen mentor. Her memoirs include The New York Times Best Seller Hippie Boy and Focus, a memoir about her journey with the blinding eye disease Retinitis Pigmentosa. She is currently working on a memoir about her quest to save her eyesight, and is blogging about her journey at www.determinedtosee.com. Ingrid’s work has been supported by a 2014 Grant for Artist Projects.
Dear Ingrid,
Your blog is inspiring as well as beautifully written. I am the mother of a 23 year old who has Usher syndrome. She will have her first treatment with Andy Rosenfarb in November and has already changed her diet to move toward the holistic approach to eye health that you, Rosenfarb and others promote. I am so proud of her. The response we keep getting in Austria is the same as what you experienced. “There is nothing to be done”. And I am so done with that. Time to move toward being responsible for our own health.
Again, thanks for your blog.
kl
Thanks for your nice note, Kathryn. I’m so happy that my experience has helped your daughter and it makes my day to read that she is taking charge of her health. I’m going to be in New Jersey for treatment the week of Nov 17 – 22nd. Would love it if my time overlaps with her.
Best,
Ingrid
Hi ingrid,
I am Kathryn’s daughter. I was diagnosed with Usher a few months ago, in June. Your blog is great. My treatment with Andy rosenfarb is from Nov 10th-Nov 22nd. Looks like I might just run into you at his office 🙂
Thanks for your blog, it is really very inspiring!
all the best,
Olivia
Olivia – thanks so much for connecting. I’m thrilled that we’re going to meet next month. See you in NJ! Best, Ingrid
Oh Ingrid, this made me so happy to read! I’ve been following you in this journey for a while, but to read it summed up the way you put it here moved me so much again. Congratulations on all your progress, and kudos for continuing to share your knowledge. All the best, as always.
Alysa – I so appreciate your friendship and support along the way. It means a lot. xoxo – Ing
Keep up the positive work, Ing! And go back to stem cell chick. Rock those field tests and include them in your book. The more voices the better and eventually maybe treatments like Rosenfarb’s will be more accessible. Dr. Bittner has NIH funding to carry research on his techniques forward. So, there is momentum!
And go get another ERG. That will do the most to enhance credibility. Even though they will come up with a million reasons why it shows a more positive result, I think it is still worth doing for patients who are following your journey.
Sending love your way!
Nat
Wouldn’t suffer through another ERG for anything. But you are right about the other tests, Natalie. I went to a retinal specialist in my HMO last month (stem cell chick appointment cost me $1200 that took a year to pay off). He did an OCT scan and an eye exam. He said I needed to schedule the field test separately and I”ve been waiting to hear from the stem cell people in California to see if there are other specific tests they are looking for. But… the OCT test showed all was good, the doctor could only find a trace of cataracts and he said my RP case was different from others that he’d seen because mine is a donut and my outer periphery is completely intact. I told him it wasn’t the case before…but until I can get my other tests transferred over and schedule the visual field test, I won’t be able to show the differences. As soon as I have the tests from both docs, I’l post them here.
Hi Ingrid,
I’m Beth, I’m 21 and I’m from the UK. I’m currently in my final year at Northumbria University studying Fashion Communication. I was diagnosed with Usher’s Syndrome around the age of 11. I have been profoundly deaf for all of my life, I have worn a cochlear implant since the age of 3 which enables me to hear very well. I responded to the implant very successfully so much so that I have normal speech and I don’t rely on sign language. It was when the doctors discovered that I had RP that they confirmed that I had usher’s syndrome. My peripheral vision deteriorated from the age of 11 then it stabilised at the age of 15 leaving me with tunnel vision in both eyes but I still have a patch on my left eye in my peripheral vision where I can see through that too. I was then discharged from the hospital as they believed it had stabilised. I then went on to lead a normal happy life and I didn’t really stress or worry about my condition, I took it in my stride. For some months now I think I have noticed a slight change in my field vision but brushed it off refusing to accept it. Earlier this week I bit the bullet and went to the opticians. He said there was a very slight change in my prescription for my glasses and carried a field test. I was sat staring at the red dot in the centre of the screen waiting for white lights to appear to press the buzzer. On my left eye I didn’t press the buzzer once and that was it. I broke down crying in the bloody opticians. The optician said that he was going to track down the results from the last field test and compare them just as a precaution and that he would contact me if they were any different. I still couldn’t stop crying and had to leave without choosing any glasses, the poor sales advisor must have thought I was a bloody mess! I then had to get a metro back to my flat I was fighting the tears with all my strength. I got on the metro and out of the little vision I have in the corner of my left eye I noticed a beautiful butterfly, it’s wings were black on the outside which opened to reveal an amazing orange and red pattern. The poor butterfly was trapped on the metro, frantically flying around desperate to get out. It sounds deep and heavy but I realised that I feel like that butterfly. That I have these big green eyes and my vision is that butterfly trying to get out and see the world. The optician has rang just moments ago saying that they can’t track down the previous results and that it is best that he refers me to the hospital where they access the previous results to compare them to the latest ones. I need to ring back and arrange this but I can’t. I have literally just been sat looking on the internet about RP and I have known that I have had this condition for years but for some reason it has only just hit me like a tonne of bricks and I’m suddenly struggling. That my future is uncertain. That it could get worse. That one day, I could go completely blind. I have only just come across your blog and it is giving me a little reassurance during this dark moment that I am having. Thank you for that. I know what I need to do, I need to stop crying, to get up and take it back into my stride. It is just so bloody difficult, have you any advice for these dark moments or just about RP in general that you could share with me?
Sorry about the life story, I would love to hear from you!
Love the butterfly trapped in green eyes
B x
Beth,
Thank you so much for writing and sharing your story. I can absolutely feel your pain — was exactly what I experienced when I was first diagnosed. I couldn’t see the flashing lights and was convinced the machine was broken. When I learned it wasn’t, I broke out in sobs and sprinted out of the clinic.
There is so much you can do to help save your eyesight. You need to switch up your diet to an anti-inflammatory diet, you need to make sure you are getting proper vitamins and minerals, you need to do cardio exercise regularly — but you also really should look into specialized acupuncture. I’ve been getting treatment from Dr. Andy Rosenfarb in New Jersey and he’s been helping a lot of us. I know there is a naturopath in the UK who deals with serious eye disorders and it might be worth seeing him as well. But I would start by at least talking with Dr. Rosenfarb – his website is: http://www.acuvisiontherapy.com Also…go to Facebook and ask to join the group Determined to See. It’s all about taking an integrated, holistic treatment approach to your eye disease. There are ways you can stop — or at least slow – the progression. Sending a hug your way – Ingrid