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  • Ten Tips for Living and ENJOYING Life with Retinitis Pigmentosa

    One of the most surprising and rewarding outcomes of sharing my journey with Retinitis Pigmentosa in my new memoir, Focus, has been the numerous emails and Facebook messages I’ve received from others who are struggling with RP or another blinding eye disease.

    Some, like me, have been dealing with vision loss for a while and appreciate reading a story that puts their emotions and experiences into words. Others are newly diagnosed and find themselves overwhelmed by the same fears that consumed me when I walked into an eye doctor’s office for the first time in my life nine years ago and was told I was already legally blind.

    Not to say that there aren’t tough days. But I’ve learned that despite the incurable prognosis, there are plenty of ways to live and enjoy life with Retinitis Pigmentosa, and to slow the progression of the disease.

     Ten Tips for Living WELL with Retinitis Pigmentosa

    1. Avoid Stress: Stress is one of the biggest enemies when it comes to degenerative diseases. Bottom line? Stress makes you sick and will ABSOLUTELY speed the progression of your eye disease. So steer clear of it at all costs.
    2. Exercise: It’s great for stress relief, keeping weight off, staying physically fit and feeling good about yourself—which are all critical to slowing the progression of RP.
    3. Don’t Smoke: Yes. In addition to killing you, smoking is HORRIBLE for your eyes and will speed up vision loss.
    4. Eat Well:  What you eat matters. It’s been proven that diets rich in oily fish and leafy greens help maintain eye health.
    5. Take Nutritional Supplements: Lutein, Omega 3 and Taurine are just a sampling of nutrients that are essential for good eye health. There are different philosophies on what combinations are best for RP. I recommend asking a trusted retinal specialist or naturopath—or following the guidelines listed on Foundation Fighting Blindness.
    6. Explore Every Medical and Alternative Therapy Available. Don’t limit yourself to either a Western or Eastern medicine way of thinking. Because there are so many different gene mutations tied to RP, there isn’t a one-size-fits-all solution to managing RP.  Some people benefit from acupuncture, some people are finding success with micro-current stimulation and eye exercises seem to be helpful all the way around. There are also new advancements (gene therapies, micro-chip eye implants, Valproic Acid clinical trials etc.) on the Western medical front. I say explore them ALL.
    7. Get Perspective: For me, it took going to South Africa to write about AIDS orphans to realize just how great I had it. When you are feeling down, think about all you have to be grateful for in life. It helps.
    8. Get Involved:  There are numerous national and regional organizations that offer resources for people dealing with vision loss from RP or other blinding diseases. There are also some great RP Facebook communities where people share resources, frustrations, fears and hopes. Connecting helps you realize you aren’t alone. And getting involved gives you something proactive you can do to help yourself and others.
    9. Have Fun:  Listen to your favorite music, sing, indulge in a double chocolate mocha, catch up with old friends, make new ones and laugh. Enjoying life may be the best remedy for any disease —eye diseases included.
    10. Embrace the Moment: The one thing my journey with RP has taught me is that none of us are immune to disease or death, life can change in an instant, and all we have for certain is now—so we better make NOW count.

    Need an extra dose of Inspiration? Check out the poetry on Sarah Martin’s blog. Sarah was diagnosed with RP as a teenager and uses her journey with vision loss as inspiration for the beautiful poetry she writes.

     

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6 Responsesso far.

  1. These were great tips I have been looking for these kinds of things. My husband has RP he was diagnosed at age 9 he has the genetic X linked version…
    Lately he has been very depressed he is a stay at home daddy and he hasn’t worked for about 9years now and being home is just getting annoying for him… So these tips I’m hoping will help him out

  2. I am age 26, recently turned 26 though 8 days ago, yesterday the doctors in Guyana, told me i have RP and i will be legally blinds in my early 50’s. That scares the hell out of me, I am feeling so depressed because i started late in live and working to achieve my goals in live so when i reached old age i can relax, now i’m struggle to cope with all this. i know i’m not prepare for this but i will try and figure something out.

  3. I feel the same Roy I got diagnosed about 18 months ago, i’m now 27 and i’m so scared, losing my driving license is the main one I got a test coming up next month, I feel I can’t do anything if I lose my license, this disease makes me feel less of a person

  4. Mike — if you haven’t already, check out my blog http://www.determinedtosee.com and also connect with Dr. Andy Rosenfarb at Acupuncture Health Associates. He is helping a lot of people with RP maintain the eyesight they have left –and regain some eyesight. I started going to him in December and he’s fantastic. I highly recommend contacting him. There is help available to us. Best – Ingrid

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